Question 4 Responses

Which Treatments and Interventions Will Help? (Treatments & Interventions)

Themes from Responses to Question 4

• Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD
• Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
• Improve efficacy and availability on behavioral treatments and interventions
• Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
• Improve coordination of treatments and interventions between services and practitioners
• Positive and negative comments about searching for a “cure” rather than treatments or interventions
• Need to prioritize early intervention
• Improve efficacy and availability of interventions in educational settings
• Current priorities are appropriate (behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions)
• Improve the evidence base for treatments and interventions, and make that information more readily available and widely used
• Need research on long term outcomes of treatments and intervention, as well as the translation and implementation of research based treatments and interventions
• Need to educate parents about available treatments and interventions, and to help provide these interventions
• Personalized combinations and types of treatments and interventions will be the most efficacious
• Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees
• Research and availability of technology based or assistive technology treatments and interventions
• Endorsement of specialized or ASD specific treatments and interventions
• Research and availability of treatments and interventions for co-occurring conditions
• Multiple Themes Addressed

Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD

Respondent	Response
Anonymous	There needs to be more research and funding for adult supports and interventions to assist individuals with becoming as independent as possible and being able to live independent lives. The current system does not support the types of strategies and comprehensive programming necessary to allow individuals with ASD to become independent and employed in our communities. The needs of individuals with ASD are different than those with other developmental disabilities. Integrative options for housing and employment need to be researched and funded to allow these valuable members of our community to be productive and contribute to society.
Joseph Clark	The ASD adult population is severely in need of qualified behavioral needs. Upon reaching the age 22, there is an enormous drop off in ASD help, services, and trained staff for the a large and growing ASD population
Anonymous	I take great exception to the policy of treating only children, then dropping and/or minimizing treatments and interventions for when these same children age out of school into young adults and adults who continue to need treatments, training, and supports. I am very unhappy with the lack of supports available to adults with high-functioning autism, who have a very hard time socially, profoundly affecting their quality of life.
Anonymous	Behavioral, medical/pharmacologic interventions as they apply to ADULTS with autism. This is a huge deficit area. Children with autism grow into adults with autism, and as adults their needs are greatly different in the behavioral and medical area.
Safa Rashtchy, Parent	Would like to see more research on curriculum and programs for young adults and adults within ASD. The existing programs are not designed with the needs of this age group, nor with the idea of a continuing, life-long education and therapy.
Xander McDonald, individual w/ autism, parent, sibling, advocate	The autism research community has a responsibility to make its results accessible, in plain language, in multiple formats. You should not be gatekeepers of information about our minds and bodies. By not doing a good job of communicating information, you have allowed shysters like Wakefield and others seeking to make a buck off autism to gain dominion over the minds of too many susceptible parents. This leads to a poor outcome for their children. We need treatments/services for adults as well as children. We need reliable sources of information that cover the gamut of options because our needs are diverse and they change over time. We need services that cover everyone on the Spectrum, not just a small fraction of children. We need assistance in building autistic community, so we can help ourselves.
Sara	I think treatments and interventions should also include Adults diagnosed later in life with autism. I am 56 years old, my primary doctor told me May 2015. My Mother told me when I was in high school that I am slow mentally, was brought up differently than 'normal' kids, and kept away from others so I would be use to being alone when I was an adult.
Serein Lambert	I would like to see more services for adults. I am almost 50 years old, and a neuropsychologist wanted to show me flashcards of facial expressions. Seriously? I was diagnosed when I was 4, I have seen plenty of flashcards of happy, sad, angry, surprised, blah blah. Where is the flashcard of how to tell what people are thinking when you can't look at them and talk at the same time? Where is the flashcard that shows "I am pretending to like you because I think manipulating you is funny"? I feel like I live in Whoville. We are here.
Anonymous	complementary/integrative interventions, educational, behavioral
Karen Cummings	I consider the most important priorities are integrative intervention s.
Jennifer Keller	Family support, adult services
Elena Kelley, Mother	First of all, we have to have more help for adults. A big issue is that people with autism are frustrated and need more fresh air and physical work. (And most are more social and have stronger feelings than we are led to believe...they just can't show it the same as neurotypicals or process feelings as well.) I know a pill is easier, but it doesn't actually help enough people to live a full life, it does make it easier for caretakers to keep them "compliant", but I believe it often takes away their quality of life, it doesn't address what's really going on.
Margaret	Complimentary/integrative intervention
Shaun M Eack, University of Pittsburgh	Current investigation and funding in the field of Autism Spectrum Disorders are heavily weighted toward the detection, diagnosis, and treatment of ASD in children. However, it is probable that more adults than children are living with ASD, whether diagnosed or not. In its Strategic Plan for Autism Spectrum Disorder Research the IACC acknowledges several times the importance of research programs that will enable improved treatments and services for individuals who have transitioned into adulthood. Despite the IACC's stated support of research on autism in adulthood, its publications have not given this topic adequate attention. Of the Strategic Plan's seven categories, the Summaries of Advances in five have, to date, focused almost exclusively on children. There is not a single advance associated with treatment or services for adults, reflecting an astounding lack of research and evidence in this area. The families and individuals living with autism are in great need of substantial and swift support to bring research on adult interventions to parity with children. The National Institute of Mental Health and Department of Defense have been pioneers in advancing initiatives to address this gap, and I strongly urge the IACC to shift its focus toward a greater emphasis on adult treatment.
MRJ	I do think complimentary medicine ahould be studied to better understand how these can help and provide the clinical evidence needed by insurance companies to substantiate coverage.
Anonymous	Complementary / integration interventions
Melissa Farley, Full Access Brokerage	As a case manager, advocating for adults with autism, I have found a gap in educational accommodations, at the post-secondary level. Colleges have accommodations for those with delayed learning and physical disabilities. The needs of a person with autism are less obvious but equally limiting. For example, one young woman has failed to succeed in college because she is not able to manage the simultaneous demands of processing social expectations of the classroom with comprehension of educational materials. She also experiences high anxiety when mandated to work on group projects, both because the social demand is too complex and many students take advantage of group project scenarios by relying on the other members. This puts greater pressure on the group members who take the project seriously and consequently end up doing most of the work.

Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions

Respondent	Response
Anonymous	Alternative medicines as opposed to pharmaceutical drugs
stella avcisoy, ARC of Seneca Cayuga	I believe that complementary/integrative interventions are a huge priority. Interventions work.
AMINAH LUCIO, YONKERS PUBLIC SCHOOLS	complementary/integrative interventions
Carol Moore, Early Intervention/Early Childhood Special Education	Novel treatments should be studied (mindfulness training, yoga, medical marijuana extracts, relationship-based interactions, environmental adaptations, etc.). Too much of what passes as "treatment" currently involves "training" children to exhibit a behavioral response through PRT and discrete trial training.
Carol Sidofsky	One intervention (among many) is detoxification of heavy metals, either by EDTA (intravenously), or, by oral "Modified Citrus Pectin", which (unlike the large regular pectin molecules, which cannot be absorbed into the small intestinal bloodstream) are smaller, and ARE able to be absorbed into the small intestinal villi, --and then the MCP (Modified Citrus Pectin) little molecules circulate around in the bloodstream, attaching to heavy metals, thereby allowing the kidneys to excrete the heavy metals, via urine.
R. Paleau	There are few services available for teaching these children relationships skills, daily living skills and social skills that are requisite to have relationships or hold a job. Many of thee behaviors are adaptive, and can be learned. So I think integrative interventions need to be explored. I do not believe that medications are the answer for any but the most distressed of individuals.
Anonymous	complementary/integrative interventions
Jan Groh, EDS & MCAS pt, Aspie "cousin", writer	Complementary/integrative interventions are the best I think, especially when offered from a functional medicine approach and tailored to the individual. One size tx does not fit all, even if we see some common themes. Look into nutrigenomics if haven't yet. Thanks.
Anonymous	Please look at the impact of diet. Gluten and milk free.
Jennifer Hane	Integrative Therapy
Karen Sanchez	Integrative approaches need to be investigated and followed up with a formal protocol.
Amy	Complementary integrative
Anonymous	complementary/integrative interventions
Seth Bittker	The main issue I see is a lack of therapeutics and research into therapeutics. It seems to me that few studies on therapeutics get done and most are focused very much on neurology using patented or patentable compounds. The few therapeutics which have shown promise with limited side effects are OTC therapeutics such as: carnitine, digestive enzymes, n-acetyl-csysteine, and methylcobalamin. There is a real need for follow-up trials on these as well as trials on other promising therapeutics focused on the whole body biochemical gestalt that typically affects those with autism.
Becca Lory	Complementary/integrative interventions
Philip Spottswood	complementary/integrative interventions
Shannon Young, University professor	The medical community needs to stop ignoring this epidemic and give real help. There are many alternative medical practitioners that are giving real help. But their treatments are not covered by insurance. Please investigate what are the best practices to help people with autism, and enable this knowledge to be adopted by mainstream medicine so that are children can get help that is covered by insurance. Note a promising treatment is neuroplasticity that can help many people with brain dysfunction heal the issues that affect their functioning. See the work of Barbara Arrowsmith Young in Toronto Canada. It would be fabulous if the Arrowsmith Program were instituted throughout the public school system so as to help the learning disabled to no longer be learning disabled.
Annette Kelly	Conventional medicine is decades behind what biomedical / holistic Drs. have been practicing for years. Autism speaks just published a break through article that probiotics might help those with Autism. This has been widely understood in the DAN community for years. Conventional medicine and insurance coverage must get on board with treatments such as IVIG and Hyperberic treatment (among others.) It works! Thousands of parents who have paid out of pocket can attest to it.
Cheryl Peeples	The biggest lack of research is in complementary interventions. The only thing that is ever suggested is ABA therapy. That doesn't touch on the medical issues. The gluten/casein free diet is life changing for many children. HBOT is STILL considered off label for Autism but not for stroke or Parkinson victims. All 3 involve the brain. This needs to change. What about medical cannabis that is having profound success in stopping seizures? The list goes on and on of innovative treatments that are being ignored.
Anonymous	expand research to more alternative treatments
Anonymous	I would like more support for integrative interventions. ABA is not the answer to all students needs. We need to embed multiple approaches.
Julia Biagiarelli, Easterseals	complementary/integrative interventions
Anonymous	complementary/integrative interventions and behavioral
Jim, Autism outreach fellowship	After countless medications from over 5 differnt doctors in 2 different states. CANNABIS is the only thing that we have seen work EVERY SINGLE TIME With NO SIDE EFFECTS. Well other than him Bering more verbal !!! CANNABISS WORKS ON SIBS!!!
Anonymous	Complementary and integrative interventions
noel benitez	The use of cannabis for treatment of autism instead of using anti anxiaety, anti depressant and anti psychotic meds (subjectively diagnosed by 'professionals' on the power trip of handing out pills because 'they are the professionals' and 'you cannot self-diagnose' )
Marisa Lawrence	integrative interventions
Shelley Tzzorfas	Integrative procedures-Detoxing the Aluminum, thimerosal, aborted fetal properties, MSG, Formaldehyde, cells of pigs, cows (That cause Leukemia), peanut oils-that cause Anaphylactic shock, Ether, ammonium salts, and more. How is it that vaccines-Biologics are not looked at for their ability to cause cancer? Cancer has now become the leading cause of death in children under age 15. I cannot imagine how a babies-too young to be on this earth long enough for the cancer to be due to the exposure to the air, foods or water. It is coming from the needles most of the time.
Anonymous	complementary/integrative interventions
Anonymous	complementary/integrative interventions
Kelly Soisson	Integrative interventions. We need holistic, naturopathic solutions. No parent wants to put their kid on synthetic drugs. Let's start caring about the health and well-being of these kids and find out what in nature can be used to help them.
Mary Schmidt	Complementary/integrative interventions.
Mary Pulles Cavanaugh, Thinking Moms Revolution	The number one treatment that will help is to clean up the gut. Toxic insults destroy the immune system which is your gut. Your gut is your second brain. When the microbiome which is made up of the good and bad bacteria become compromised many problems can occur in body systems. Also when developmental delays occur the reflexes should be retired by age 3. When they are not the brain becomes disorganized. To reorganize the brain you need to make more neurotransmitters. Some of my top brain treatments are an ionic foot cleanse, doing excercises which involve crossing the midline as well as using all the senses, and working with a Chiropractor who is Board Certified in Neurology.
a	Diet is by far the most helpful to us. Then integrative interventions.
Anonymous	Taking and integrative, interdisciplinary approach to intervention is so important. I think effective planning and preparation for postsecondary education is also important.
Anonymous	In terms of integrative interventions, we must look at the needs of each individual with ASD and provide interventions that meet their individual needs. We are trying to be inclusive but instead we are creating barriers for students who need significant interventions that support their success.
Anonymous	Integrative
Anonymous	More research on treatments with supplements and diet. No rx is going to cure autism.
Anonymous	The only treatments for ASD are holistic and integrative medicine.. Traditional medicine is failing every disease process in the country. We are the sickest nation in the world and the sickest in mankind's history
Emily Ryan	Medical
Daphane Voltz, Advocate	Way too much focus on medical, way too little focus on sensory and behavioral treatments and research. Although some people with autism also have co-existing conditions and additional medical concerns, the bulk of autism without severe intellectual disability should not be approached in a medical or clinical model. Rather, there should be more "wraparound" services to bridge all domains of one's life. After all, autism affects individuals globally, so it makes sense to address it as such for the best outcomes.
Anonymous	The ability to receive services from the county is so incredibly difficult because the counties are under staffed, overwhelmed with changes in programs and backlogged. The therapies that our autistic children depend on are not always conventional. Horse riding therapy is not covered, but it is very useful because it creates a bond between the child and the animal, much like a therapy dog. The repetitive motion of riding the animal also is calming to the child. I have had to fight every year to have my son continue with music therapy. It is so incredibly beneficial to him in calming, turn taking, relaxation, and imagination stimulation play.
Mark Justin Draycott, Parent of a person diagnosed	Focus should be given to interventions that assist non-speaking persons and persons with limited or idiosyncratic oral speech to communicate using other methods - for example, through the use of letter boards.
Deborah D'Arcy	The effects of Marinol and other marijuana derivatives have been rumored to have a positive effect on autism symptoms including tic disorders. This must be explored.
Barbara S. Delsack, MCPS; CCS, Inc.;Independent consultant	Complementary and integrative therapies. There are changes and progress being made in the areas of communication using visual supported strategies, smart technologies, computers, supported typing and therapies once used only with stroke and Parkinson's like Melodic Intonation Therapy. There is an unlimited amount of anecdotal support for new and exciting interventions but we are stuck in education like never before. As the world pushes for inclusion we are denying that to our students and adults by excluding them from therapies because the connections to neurology and psychology is not being stressed by those who make decisions. And the research is stuck in traditional paradigms that do not take into account the human factor or consider the influence of those co-occurring issues I mentioned previously.
Angela Lello, Autism Speaks	Necessary tools and resources now exist that the development of a new therapy to treat the core symptoms of autism for particular subgroups is a real possibility. There should be a focus on taking advantage of these opportunities to provide real and tangible solutions for segments of the autism population. To make this possible, sustained commitment to build genetic data collection efforts is needed. FDA guidelines for approval of an autism medicine are lacking, as are validated biomarkers and outcome measures. A clinical trial network to facilitate this work is needed. Gaps also remain in researching interventions that are effective and scalable to reach all families, especially in underserved or ethnic and linguistic minority communities. Intervention is also needed for specific subtypes as well as predictive medicine based on subtype. It is vital to be able to track outcomes of specific interventions to specific subtypes of autism. A greater focus on novel intervention approaches is necessary to address these areas to ensure accessibility in a variety of community and educational settings and feasibility and effectiveness for a diverse set of family and individual needs.
Kerry Lane, Palm Beach Autism Institute	The entire Oxidative stress Paradigm around glutathione and models that influence it should be studied.
Nicole	There is a huge gap in funding complementary and integrative interventions.
Judy Simpson, American Music Therapy Association	The American Music Therapy Association (AMTA) appreciates the opportunity to submit comments for the 2016 update of the IACC Strategic Plan for ASD. As an established allied health and related service profession, music therapy interventions focus on enhancing social, communicative, motor/sensory, emotional, and academic/cognitive functioning, or music skills in individuals with ASD. Music therapy services are based on each client's individual abilities, noting preferences, needs, the family's values, beliefs, and priorities. Music therapy interventions are informed by research evidence and incorporate many of the identified ASD-specific evidence-based practices in each session. Board Certified Music Therapists work in partnership with clients, families, and teams. Over the past seven decades numerous anecdotal case studies, narrative reviews, and systemic reviews describe the benefits of music therapy for individuals with ASD. Currently, music therapy is identified as an emerging intervention by the National Autism Center (2015). AMTA is interested in advancing the understanding of the efficacy and effectiveness of music therapy interventions through existing and new research studies, expanding access to music therapy interventions, and assisting with service delivery options for individuals diagnosed with ASD through home, school, and community-based programs. We thank you for consideration of these comments.
Chanda Jackson	Integrative interventions.
Michele Caramenico, parent	Fund more complementary/integrative interventions.
Sherri L Kelly	Looking at nutrition and gut health to improve behaviors and symptoms.
Beth Clay	The greatest gap in research and services are the complementary, alternative (integrative) therapies including dietary supplements. There is an urgent need for IACC to coordinate with both the ASD and the CAM communities to host a public forum to gather the practices, state of evidence, and state of the reimbursement and access; and develop a comprehensive approach to maximizing non-pharmacologic therapies especially for anxiety and other conditions frequently present in ASD. For example, chiropractic, acupuncture, music therapy all have benefit. Homeopathy, essential oils, hyperbaric oxygen therapy, all also have benefit. Dietary supplements are extensively used, but so far federal agencies have pretty much ignored the DAN protocol and other approaches. Research is essential to reimbursement; and to identifying sub populations.
Julie Cadman, Healing Complex Kids	There are many different treatments that can be used for autism - I strongly recommend that families be allowed to be reimbursed for supplements their children need.
Angelique Higgins, parent	Prioritize studies of complementary/integrative/medical interventions which most clearly correlate to the objectives in item 3, i.e. those interventions designed to remediate inflammatory responses and prevent autoimmune tipping points.
Marcia Gray	A bigger push towards social skill therapy needs to happen. At least half of these individual are going to be needing to engage socially with success to be able to live on their own and have jobs and relationships - much of the therapy slows and weakens considerably once you get past academic issues.

Improve efficacy and availability on behavioral treatments and interventions

Respondent	Response
Cheryl Fortunato, Parent	Need a better use of Social Thinking as a critical component of therapy. Specifically, emotional regulation, coping strategies, problem solving all go hand in hand and often a child is tagged as a behavioral problem rather than understanding the underlying skill deficits. We need to do a better job at educating our educators on this protocol. Additionally, Self-Determination should be taught, explicitly, early on. Social Thinking and the impact it has on those with ASD is critical and needs to be part and parcel to all educational programs, not just a related service.
Charles Doran	behavioral
Jennifer Muyot	there should be more opportunities for social skills group/ therapy where they can interact with neurotypical peers
Anonymous	ABA therapy, the therapy that is scientifically proven to help children with autism should be FREE for all people diagnosed with autism. This should be the priority. Helping children and adults with autism in society with FREE help!! Individuals with autism have enough to worry about. Let's help them by giving them the interventions that are scientifically proven to help.
J McLead	Students need socialization classes. Their loneliness is overwhelming.
Kimberly Richards	Behavioral, educational, interventions of any sort.
Anonymous	Behavioral research.
Anonymous	It is imperative, while supplying positive feedback for achievement, that real world consequences are taught both in home settings and educational settings. Allowing our children to do as they wish (ignoring expectations/not completing what they are able to complete) does not set them up to be independent adults who participate in their communities. Part of education must also lie in providing accurate (including all known variables) information to each child's community by public inclusion in small groups that do not become spectacles of their environment (think groups of 3-4 including educator at a mall vs. groups of 12 or more at the zoo). Appropriate conversations must be fostered between these children and people in their communities.
Maria Montoya, Enroll Detroit	Behavioral
Anonymous	Many people, even providers and educators, do not know about researched based behavioral supports such as Applied Behavioral Analysis. Education about ABA should be priority one.
Helen Angela Mezzomo	It is important that people know that ABA IS NOT the only, nor is it the BEST treatment for individuals with ASD.
Cindy Axt	Behavioral is so important. It's an area we all struggle managing in our children with ASD .Many therapies are not offered in different states that could benefit our children.
AM	Behavioral
Chandler Perry, MS, BCBA, BSL, Indian Creek Foundation	Behavior supports are frequently misused. Behaviorist should not be used for personal counseling that comes to the home. Mobile therapy is needed for adults who might benefit from 1:1 counseling but who are not willing or able to travel to an office. Behavior supports should be tied to a specific behavior that is effecting a specific (and valuable) function in the person's life. Behavior support should not be used to provide a blanket plan for a variety of long-term behaviors that may not be affecting functioning. There needs to be a uniform system of reporting so that data mining can be used to extract information related to interventions, implementation, barriers, treatment efficacy, etc. There should be a resource or report available to adult BSC's so that we are able to obtain the information and training should be targeted towards helping BSCs and direct service staff to implement the interventions that are most effective.
J. Berryhill , Autism spouse and Parent	ABA is out. It's degrading, it undermines the presumption of competence, and it has to go. I train my dog with ABA methods, not my child. Conversely, Relationship Development Intervention (RDI) is designed to target the core deficits of autism. This is the program that has changed my child and my family. This is something researchers need to be looking at. Regardless of personal opinion on treatments, it is inappropriate for governmental approval to be given to only one type. And the fact that the one is the least respectful of basic humanity in our most vulnerable is disappointing. Also, the pronounced emphasis ABA as the only treatment option cannot continue. ABA does nothing to target the actual deficits of autism and completely undermines the culture of assumed competence the autism community needs for acceptance.
Patricia Harkins, Harkins and Associates	There is more than just ABA out there. For higher functioning people, Floortime, counseling, RDI are much more appropriate approaches. Yet they are not covered by insurance, even when ABA is.
Kristen Goodman, Board Certified Behavior Analyst	ABA is often excluded from these packaged programs such as floor-time. All ABA style therapies need to give credit to the Lovaas study. We need more research on Lovaas original findings Over more time with many more children.
Laurie	ABA was a life changer for my son. But my insurance doesn't cover it, I was paying out of pocket, and I can no longer afford it. Social skills groups are huge for this group who struggle to learn the acceptable morales of society. Pharmacology is not always the first go to to treat this population to make them more acceptable in society.
LorRainne Jones, Kid Pro Therapy Services Inc	As an educator, speech-language pathologist, and behavior analyst,I feel we have to explore strategic ABA training for speech language pathologists. I think for very young children diagnosed with ASD, speech language pathologists with specialized ABA training can provide the best of both disciplines, extensive knowledge and training in the acquisition of speech, language, and communication skills and training in ABA based skill acquisition strategies that have been found to be effective with children with ASD.
Michael Beauregard, Father of son with Autism	One of the larger gaps would be the lack of ABA therapists in certain ares. We lucked out and did not have to wait too long before a schedule was made for our son, but we are aware of others that have been put on waiting lists Their child is not going to be 'waiting', they will be growing while lacking the needed support.
David Altieri, Georgetown University	No Applied Behavior Analysis! Ask the autistic adults, please! It is coercive. We hate it. There are reports of PTSD from ABA, dedpite ABA denials. It is nothing more than submission training. It teaches chikdre not to say no to its abusers. The entire profession supports ABA's extremely painful electric skin shock at the [Organization Name Redacted]. There are valid alternative therapies, such as Music and Occupational Therapy. Please tell them to leave us alone! Do not listen to pro-ABA parents of us autistics! ABA puts them in a panic about their newly diagnosed toddlers! See: https://rewardandconsent.blogspot.com/2016/04/action-alert-advocates-against-judge.html. Surveillance of Aplplied Behavior Analysis abuse in action, please!
Anonymous	Improving education to be more autism-friendly matters a lot to me. Also, as mentioned before, I want research into whether certain aspects of behavioral therapy, especially ABA, are emotionally harmful. (Many autistic adults report that ABA gave them PTSD, or hurt them in other ways.). I want research into whether hours a week of compliance-based therapies can actually hurt a young child's emotional development.
Anonymous	The most important priority for policy is to increase access to a full range of different forms of behavioral health treatment, including developmental relationship based approaches. There has been advances in promoting ABA intervention, including increased funding, however ABA is not effective for all children or all types of challenges. Developmental relationship based approaches now have significant research evidence of effectiveness and families need to be aware of this option for treatment. There has been advances in promoting ABA intervention, including increased funding, however ABA is not effective for all children or all types of challenges. Developmental relationship based approaches now have significant research evidence of effectiveness and families need to be aware of this option for treatment.
Lani White	Behavioral
Toni Poh, Educator	Behavioral intervention
Ray	The only widely known treatment in the public consciousness currently is ABA, which is abusive and has been shown to cause PTSD in autistic adults. Research should be done into other treatment options that help improve the quality of life of autistics rather than force them to conform to standards of the neurotypical society.
Hollister Sykes	Critical Need: What sighs indicate a developing episode of self-injury or aggressiveness.
Anonymous	Yes to different therapy choices
Katie Romans	Behavior intervention needs to be available to all families because it is difficult to learn in school or life skills if behavior is out of control
Kristie	Behavior
Nicholas Newton , Hardin county schools KY	I'm concerned with the abuse of ABA therapy suggesting kids not go to school but instead go to ABA therapy that puts money in the "therapists" pocket.
Nat Blagoj	Most promising biomedical research is not adequately funded and followed up. There have been many promising small scale treatment trials over the last two decades that have not been followed up by larger studies due to lack of funding, which is a travesty. It would be another big tragedy if the purinergic research and suramin treatment trials by Dr Naviaux are now discountinued due to lack of funds. Please do not let that happen, our children need treatments NOW.
Balvinder Ghag	Behavioural research
Glowyn Roughton, Emg consulting	Behavioral
Susan bernard	I would like to see more strides in non pharmaceutical approaches made all the doctor's and teachers throw the drugs at you I don't want my kid on them especially when insurance companies come along and want therapeutic interchanges with meds that may not have worked before for your kid so they become a walking Ginny pig or suicidal and if they have other health issues the weight gain is detrimental it is a lose lose situation for my kid who doesn't express himself well
Rosanna Armendariz, Autism Community Network of El Paso	One of the biggest problems I've seen and experienced is insurance refusing to pay for ABA. Where I live, Texas Medicaid refuses to pay for ABA and so do many private insurance companies. Applied Behavioral Analysis (ABA) is scientifically proven to raise IQ and improve functioning in children with autism, yet many of us still can not get this highly effective therapy for our children. As a result, our children will be less likely to become functioning members of society and will end up "burdens to the taxpayer."
Anonymous	Behavioral Rx
Michael Hannon	Behavioral, educational, techonology-based, and Complimentary/integrative interventions
Anonymous	When my child was 2.5, he had no speech, no eye contact, no pointing, no gesturing, and was very hyperactive. He did not really listen or respond much to others. Besides a public ed pre-school program, he also had private speech therapy for several years. My son was educated all the way through transition and has a high school diploma. He drives, and holds a full-time warehouse job. And although he perseveres on a few favorite topics, he is now a chatterbox. For someone with ASD, I believe there is no such thing as too much speech/language therapy.
Anonymous	The researchers should listen to adult autistic people about how harmful ABA really is. Because those are the adults that the children growing up now will become. Many autistic adults and teenagers have PTSD directly from ABA. ABA teaches people to not *appear* to be autistic. It doesn't make them not autistic. And being autistic is just a way to be, not something that needs to be eliminated, as the only way to truly eliminate autism would be to screen genetically pre-birth, and abort. Killing is the only way to eliminate autism. Autistic people have a rough go of it sometimes. It doesn't mean that their lives should be snuffed out before beginning. Get to know adult autistics and listen to them. Regarding autistic children: when are they ever going to talk? Regarding autistic adults: why don't they ever shut up; they're not like my child. Wrong. They're exactly like your child. Also, if you wouldn't subject your non-autistic child to the treatment, don't subject your autistic child to the treatment.
Eileen Henot	CBD as treatment for sensory dysfunction and behavioral issues.
Azuree Natice	Put an end to harmful versions of ABA that do not treat autistic clients with respect. Put an end to the harmful over-use of physical restraint and/or seclusion in educational and health care settings and instead provide training and support for more effective methods. Increase funding, training and support for Assistive and Augmentative Communication technologies, so that all autistic people obtain a method of communication that works for them regardless of their ability to access and use verbal speech. Put an end to the use and promotion of harmful quack "treatments" such as bleach enemas and other nonsense.
Melissa Diamond, A Global Voice for Autism	Emphasis on evidence-based practices and funding for ABA-based interventions for families/cost-effective evidence-based options so that families are not wasting money on seemingly more affordable interventions that have no evidence of efficacy.
Alexander Frazier, Director, Autistic Reality	Another important service includes therapy. There is no shame in getting any kind of reputable therapy. Autistic Reality believes that therapy can greatly improve the quality of one's life. Therapy also often works for families and couples, and quality counseling may work for other groups as well.
Patrick Johnson, American Academy of Pediatrics	The American Academy of Pediatrics is pleased with IACC's explanations and recommendations within this section, especially the mention of evidence-based autism interventions in diverse community settings and schools. In general, it is important to recognize that the barriers for ASD services are immense, particularly with insurers; therefore, we recommend that including the particular policy or legislation singled out within the Strategic Plan that would make ASD treatments and services more widely available, especially in rural and low-income communities. Pediatricians across the country concerned with the lack of accessibility of ASD services would then be empowered to advocate on behalf of those policies. Future research should also focus on enhancements in the field of medical telecommunications as a treatment for ASD.
Cynthia McLaughlin-Share	ABA has never been properly peer reviewed. It began with Lovaas who hit the children in the forehead (IE 'the single slap theory' --- in the original 'ME Book), as well as electrifying the floor of the reading room. The ghosts of these practices live on and kids are still punished.

Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects

Respondent	Response
Paula Varner	Better drugs need to be made available to actually treat the symptoms of this disorder. My loved one is extremely allergic to chloride (salt) and many drugs are mixed with chloride as a base to make them absorbable for humans to use. As a result my loved one can not take any thing for her autistic meltdowns, rage and other behaviors. Autistic individuals are extremely "sensitive" to many substances. There needs to be better drugs available.
Annmarie Andress	same as previous - need research for medical and pharm. solutions to cure or increase quality of life for autism especially the most severe with challenging behaviors, non verbal and not able to have a "job" as an adult
Paula Roegge	We need research in medical cannabis oil usage for symptoms. Parents need help. Financial help. Even with insurance, treatment is very expensive.
Jan Ornelas, Brian's Hale , LLC	Autism needs to be approved for medical marijuana use.
Anonymous	I believe that more research needs to be done regarding the use of drugs that help neurotransmitters work more effectively.
Frank J Kelly	Again I would choose this question to revisit the whole immune system research area to make sure studies such as those on Sulforaphane are fully funded and accelerated - with the caveat we accept a priori that such approaches may only work for SOME children on the spectrum given the diverse etiologies underlying autistic behaviors.
Holly, Occupational therapist	Medical and pharmacologic areas have the widest gap in terms of intervention with autistic individuals. Behavioral interventions has a wealth of information in regards to research so I don't feel that is a priority
Julie, Mother of 4 year old newly-diagnosed with autism	I think advances in the ability to improve the quality of life through medical or pharmacologic means for individuals with autism is incredibly important. While certainly controversial, I have witnessed the positive impact medications have had on some individuals with ADHD. Similar strides - underpinning increased focus and attention/social participation - for those with autism could be impactful. Educational and behavioral interventions also are very important, but seem to have much more weight behind them at this point than do medical or pharmacologic interventions.
JulieKay Dudley, Autism Society of Oregon	I would like to see more good research on Medical marijuana treatments for ASD's, either in conjunction with typical psychotropics or instead of.
PETER MAZURE, parent	Too many drugs are given to people with ASD without good science behind their use.
Anonymous	medical/pharmacologic interventions
Anita Hawks, autism mom and advocate	My son is heavily medicated to assist in controlling his behavior, it is not effective to the degree we would like, but we don't want him to be in a zombie like condition either. Sometimes the state's health care has made getting medicine difficult.
Anonymous	Medical/pharmacologic research into effective treatment for the core symptoms of autism have not been addressed. Currently there are no medications to cure the core basis of autism disorder.
Anonymous	Autism is medical and yet there is a HUGE medical GAP in knowledge and standard of care
bob horn, [Minor/Dependent Name Redacted]	drugs are not the best path
Christine Lai	Pharmacological interventions need to be studied further particularly as relates to new medications on the horizon for other neurological conditions. All interventions need to be effectively integrated and more needs to be done for parents and caregivers to effectively manage all of the myriad treatments, professionals, etc.
Elissa, Parent	What medication helps to reduce irritability What can concretely be done to help executive function skills to help address issues
Lindsey Craven	Medicines to treat especially the young are very side effect causing. Better meds targeted for youth and better ways to determine those meds.
Anonymous	Medical/pharmacological
Marty	Biomedical treatments need to be regulated. Things that are not proven, harmful, or misleading should clearly stated.
Anonymous	medical/pharmacologic interventions
Nancy Shaw	Medical/pharmacologic
Robin Havens, parent of someone with autism	Despite having intense behavioral intervention, my son experiences episodes of certain behaviors which may be affected by allergies, biochemical imbalance in the brain etc. More needs to be done from a medical standpoint to treat these behaviors so that people with autism can function more consistently and without discomfort and distress.
Anne Sawyer, Parent	1) Medical/Pharm 2) Education amongst professionals. Educators and health providers (not considered specialists) are a disservice due to lack of awareness.
Alice Marx, Manhattan Childrens Center (my granddaughter's school)	As our granddaughter attends an ABA school, we have a basic understanding of this type of behavioral intervention. However, we are extremely interested in what medical and pharmacological interventions are available and how we can determine which ones would help her.
Anonymous	So much here! There's a significant need for further training for health care providers in all areas and environments (ie. ER's, primary care, dentists, peds and adult hospital units, labor/birth, Long-term care, etc) along with increased funding for training, and increased reimbursement for working with DD/ASD clients (as they often need longer visits/ more significant work-ups). Further investigation into the gut/brain link, food sensitivities, and also how those effect pharmaceutical response. Greater need for integrative educational services. More support to keep kids in Setting 2's.
Elizabeth	We need to understand how medications may help. We need funding and stricter requirements about insurance paying for services.
Anonymous	most of the kids with ASD are using medications. we know so little about it. we need much more research in this feild
Anonymous	Medical. Too many children are being drugged up for chronic symptoms of an unknown cause, too many chronic symptoms are assumed to be ASD related and dismissed with poorly performing medications when not even any testing has been done as to what the cause may actually be and no concern over the long term use of drugs on young children.
Rachel Ealy, High School Teacher	Educational- more research on transition and employment. Medical- again medications that can help with the mental health aspects of ASD, particularly at the teenage years.
Andrea Colburn, parent	Improved medications for easing anxiety and OCD symptoms. Also, the use of medical cannabis in easing more extreme symptoms should be studied.
Jeanne Fitzgerald	I know what has happened to my daughter. My daughter has autoimmune encephalitis from years of untreated Lyme disease. She is getting IVIG to get rid of her OCD and choreiform movements which are so severe she can't function. This is an expensive treatment that never would have been needed if someone had just looked for a medical reason for her symptoms instead of filling out the inane autism checklist.
Leslie Phillips	Medical
Amy belzile	Medical pharmacology
Alexander Frazier, Director, Autistic Reality	Autistic Reality believes that the best way to understand what is happening is to communicate with autistic individuals about the condition. Autistic individuals may not always be verbal, but they always understand you. This is false. Second, communicate with friends and peers of the autistic population whether or not they have autism. Third, speak to the family members of those with autism, who often love their autistic family members. Fourth, talk to clinicians and doctors. The same priority ranking system goes when dealing with other resources. Please steer away from Autism Speaks, as they are a eugenic-minded apologist group that wants to see autism gone and does not believe that the opinions of autistic individuals hold valid weight in the world. Please also steer away from the Autistic Self Advocacy Network, as they often use radical methods such as cyber bullying and character assassination if their very specific, often incorrect mindset is not met. Medication can work for the autistic population. Some medication may help with autism or co-occurring conditions. Behavioral modification is generally a bad idea, and instead one should seek to accommodate the autistic individual with their autistic habits intact. With proper conditioning, autistic individuals have the potential to become accustomed to settings which may initially trigger their sensory difficulties.
Parvathi Gontina	medical
	Research into the biomedical interventions to treat and even in some cases recover children with ASD needs to be done.
Lesly Weiner, Parent, teacher	More research and implementation of the biomedical interventions that are healing children from vaccine injury, aka autism.
Anonymous	As ASD population is getting older transitions from school to higher learning is difficult since there is no requirement for higher learning (community college or trade schools) to follow any kind of IEP. They must only comply with ADA. The person on the spectrum is not afforded the supports (behavioral) that they need to be successful in a higher education system. SO the priority is to continue to identify medication etc that will help them fit the norm.
Lisa Yorgason	Autism needs to be viewed primarily as a medical condition. Serious consideration must be given to the countless parents who have healed their autistic child using biomedical and nutritional methods, and these methods need to be covered by health insurance.
Toril H. Jelter MD, MDI Wellness Center	Research on lowering EMR sorely needed also biophoton therapy can be very helpful in those that can sit still enough and cooperate on some level AFTER lowering EMR
Anonymous	Medical/pharmalogic
Anonymous	Far more than bio medical interventions!!
Anonymous	Funding should be given to neurologists to try to make brain scans more easily available and less expensive, because diagnostic methods based on observation and self-reporting are less reliable.
Lisa Ackerman, TACA	No innovative treatments have been found. I would like to propose the following changes to the IACC: o Consider a more diverse board at the IACC to include some of the world's researchers in cause and innovative treatment such as: Dr. Martha Herbert, Dr. Jill James, Dr. Richard Frye, and Dr. Dan Rossignol. It is my opinion that the current IACC board lacks in ground-breaking research and medical treatments happening today o Push the U.S. Dept. of Human Health (HHS) and IACC to collaborate and recognize the needs for services and support for families.
Heidi Scheer, Autism Hope Alliance	We need research on the biomedical treatments that are WORKING and changing the lives of many children with autism and which NONE are covered by insurance! This is CRITICAL!!!

Improve coordination of treatments and interventions between services and practitioners

Respondent	Response
Carla Charter, Disability advocate	Coordination of services is essential. Also essential is an expansion of medical professionals and other agency hours to accommodate working parents. Appointment hours should not be about what works for the agency or the doctor , it should be about what works for the family!
Julie Johnson Coulter, CoulterWorks	Coordination between these interventions is such a challenge for families. It would help if medical, social and educational supports could be served through a united front rather than piecemeal between school systems, medical insurance and local governmental services. We're lucky here in North Carolina to have a supportive Autism Society to assist families with finding sources for services.
Jaime Z, CVR Autism Academy	The most important priorities and gaps in services, I feel, would be the follow through with interventions, behavior plans, and treatments into the home environment. Not enough of what is being utilized at school or work is being transferred into the home to use.
Shannon D'Aquila, parent	Integrative interventions are in my opinion the most important when it comes to training parents to deal with children's sensory issues. When comprising a multidisciplinary team typically of an SI, OT, SLP and often PT, it seems unheard of to have a BCBA added to the team. It seems to me that an SI can be included with a medical team, yet a BCBA is only viewed as the mental health and behavioral component. In excluding a behaviorist in a transdiciplinary seems counter productive since you are treating the entire child.
Erika Schron	Medical insurance and schools need to provide more than the basics to our children's bio-neuro-developmentally affected children, other therapies need to be accepted beyond ABA, Speech and Occupational therapies. Our children need medical help that needs to be covered by private insurance and state medical insurance. Our children need therapies to move forward and be productive citizens and they also need to be medically able to be productive, to be healthy and that's the areas in which need the most help. The alternative medical field and the mainstream medical field need to start working together to help our children. The DAN/MAPs doctors are a great start but there needs to be more of them.
Anonymous	Gaps need bridging between hospital and CAMHS. Discrepancy between behaviour and mental health disorder.
Kimberly Matkin	There is a gap in regards to therapy and medicine working together. Medicine should not be the first interaction.
Anonymous	Need counsel and support on: integrating, record-keeping and communications assistance. Yesterday!

Positive and negative comments about searching for a “cure” rather than treatments or interventions

Respondent	Response
Krishna Murphy	Apply the knowledge we already HAVE to begin the CURE!
Resa Warner, Parent of 15 year old autistic son	When I see "which treatment will help" I think the economics of the situation are preventing the use of the word cure or fix for this problem. I want to see the same sort of miracles cancer patients are experiencing and HIV positive patients who are now living to old age! If there are groups of "high functioning autistics" who do not like the word cure - then let then keep their label if it make them happy. My son and his worn out family want a cure!
Anonymous	Families must be told at diagnosis that a subset of these children are ill and can be treated. Right now, they are told it is developmental and behavioral, which may be true for some, but certainly not all. Medical treatment first then rehabilitation, is the answer. You don't do speech therapy or OT on someone having a stroke. They are medically stabilized first, then they receive rehab. The same should be true in autism. Right now, families have to scour the earth to find practitioners competent to treat the encephalopathy, at their own expense.
Leigh Ann Davis, The Arc	Triggering Events/Conditions. We need to understand the root causes of challenging behaviors, including aggression, self-injurious behavior, and wandering/ elopement. We also need to understand how trauma effects victims with ASD so trauma-informed measures include this population. We need to know if and how trauma is contributing to these “root causes” and train therapists/counselors, victim service providers and others who assist victims how to work effectively with people with ASD (both children and adults).

Need to prioritize early intervention

Respondent	Response
David Radford	Early intervention is the only way to effectively help those affected by ASD.
Howard Habler	The earliest intervention possible - be it behavioral (ABA as proven so far) or medical/ pharmacologic (useful, in my case) are priorities once ASD is determined to be the problem
Faith McGinnis, parent	There needs to be a more pro active approach in schools and in prek intervention. For my older son no one mentioned anything was off until he as 5 and in prek . For my younger son we pushed through and received a dx way early on and early intervention was a blessing. We still have issues though. Unfortunately until there is an actual program (such as an Autism prek school treatment program) to help reteach Autistic individuals early intervention will only be so effective. WE need reteaching programs at age 2-3 so its caught early and the brain has time to relearn it all the neurotypical way. The largest problem I have had though is as my older son gets older the schools have far less and less help for us and answers. Middle schools and high schools need to have a proactive program that helps through puberty and social moments and schooling as that is literally the hardest time ever for an Autistic individual. There is virtually no support currently and less answers about how to handle it.

Improve efficacy and availability of interventions in educational settings

Respondent	Response
Anonymous	Education past early childhood is a seriously neglected topic in ASD research; and it needs to be given much more attention. Although early childhood education is extremely important, the lack of research in later grades makes it all the harder for a person on the autism spectrum to get a high-quality education. I think that attention is particularly needed in middle school, high school and postsecondary education settings; since these age ranges have traditionally been neglected in research. Although I have come far in life, in some ways I feel that I will always be behind and picking up the pieces because I did not always have the right social and academic skills needed to succeed at every step. As a teenager, I remember feeling that I had been abandoned because the autism field no longer cared about people my age. By prioritizing educational research at later ages; we can not only gain more knowledge, but we have a better shot of letting kids know that we still will be there for them.
Eric Common, University of Kansas	educational
Heather Hebert del Cuadro, Brain Education Association Instructor	Power Brain Education has been approved in many of New York City schools as an effective intervention for students with and without Autism. Adequate interventions such as Power Brain Education has been approved as an effective intervention in New York City Public Schools. This form of education is based on experiential education, mindful meditation, brain based exercises and lessons including information about the brain: its functions, and the organs in the body, nutrition, emotional regulation, and social games. The most current Research shows that students are making huge strides in their emotional, social, and academic areas in schools where teachers are trained to implement Power Brain Education.
Leslie Pirelli	Educational has shown gains in a child with autism. For example discrete trial interventions with positive reinforcements. These helped my son immensely. Unfortunately for success there needs to be intensive therapies within the schools such as 1:1 or extremely low class caps. This does not occur as well as adequate the though rough training within the schools. School treat is as a quick training, drop it, band aid is on, good luck teacher. As an educator I have experienced this first hand.
Anonymous	Can we include more variety and comparison into teaching methods instead of standardized top-down rote memorization models which work better for neurotypical learning styles. Can ABA/VB be expanded with other psychological therapy methods, to address more complex real life social interactions of 'manding' and 'reinforcers'? Is it possible to teach autistic people systemized tools for them to learn how to train and socialize neurotypicals they interact with?
Joan McCarty	Education should focus on support in classrooms with "neurotypical" peers. Focus should be on motor-planning and communication. Assumptions should be made that autistics can understand but cannot respond because of motor deficits.
Anonymous	Educational
Anonymous	education of individuals with ASD including factors impacting successful inclusion, social isolation in inclusive settings, educational focus on adaptive, social and emotional functioning
Nina Boal	Study the best ways to help autistic people learn to live and interact with today's world.
Trish Bawn	Educational- specifically higher education for persons on the autism spectrum
Anonymous	educational
Anonymous	It would be beneficial to have special classes and education programs available for autistic children in each grade level. More autism based pre schools, classes, and programs.
Danny Raede, Asperger Experts	Educational
Delores Goneau	As previously stated... education
Anonymous	Government and schools need to provide proper funding for appropriate interventions to help these children succeed. Often children have known deficits that are ignored by educational facilities because the cost of providing these services to children on the spectrum becomes the deciding factor. For example, There are many proven intensive interventions in reading and comprehension that schools are ill-equipped to provide and will not pay for- despite the fact that it meets the child's unique needs.
Anonymous	Schools should be required to include children with autism with neurotypical peers. EVIDENCE BASED PRACTICES NEED TO BE REQUIRED IN SCHOOLS These practices are well researched. For example, this is documented in reports from the National Autism Center / May Institute and UNC / FPG: http://www.nationalautismcenter.org/national-standards-project/phase-2/ and http://autismpdc.fpg.unc.edu/sites/autismpdc.fpg.unc.edu/files/imce/documents/2014-EBP-Report.pdf. With simple, but proper training, it should be easy for school systems to implement these proven practices. The above reports even discuss resources for implementing cost effective training for educators. Unfortunately, most education systems do not use of evidence base practices for helping children with autism. Pivotal Response Therapy is one of the most highly touted evidence based practices for helping children with autism. This was developed by Drs. Robert and Lynn Koegel of the University of Santa Barbara California. We have seen it help children with autism. Unfortunately, we have also seen school administrators fight against implementing evidence based practices like this. Administrators seem more interested in protecting their ignorance than helping these children. It's important to note that attending a 1 day seminar on a practice is insufficient. Educators, including para-educators that work with these children require proper training.
Gillian Pilcher, Parent of 2 with high functioning Aut	The priority needs to be educational. One of my son's AP teachers sent an email to the special education teacher letting her know she didn't have time for him. He just graduated from an engineering school with a dual major in nuclear and mechanical engineering. He will succeed despite his public school education.
Grace McCusker	Educational
Heather Baylies-Grigoreas	EDUCATIONAL
Karen Connelly, 2 children in the spectrum	We need more educational options.
Ken	There should be no medical/pharmacologic treatments. It should all be educational and the psychiatrist should be educated that fixing autism with medication is unethical and wrong. Perhaps behavioral, mainly through education and accommodation.
Leslie Zevnik	Educational. The bare minimum is provided by school districts.
Anonymous	educational
JLG	Educational. I have extreme executive functioning difficulties. I am excellent at science and math and a variety of things, and hold a PhD in a biological field. I even hold a black belt in karate. But things like registering to vote, filing taxes, or pretty much any administrative procedure required of an American adult, and there are MANY, eludes me. It's demoralizing, frankly.
Robin Weisman	Educational: Inconsistent throughout counties, states, school districts. No certification for Autism in many states. Some Autism certificate programs consist of only 5 courses with no true hands on experience. ABA has become bastardized with BCBAs being a dime a dozen leading to a vast range of service delivery experiences..
Kim Mays , Individual	The system for education failed my daughter for special education , she did not fit in the box for the special ed programs offered to her especially in high school. There should be alternatives in education especially following middle school. I watched a thriving , creative positive child become physically ill over the limited intervention and programs they have to help individualistic progress.
Stacey Ireland , Parent	Educational
Anonymous	Effective and all-encompassing educational interventions.
Anonymous	Education
Lacee Parod, Parent/school employee	Educational and interventions. Some do not understand what autism is. Let alone how to teach someone with it. More need to be taught to the teachers and administrators about what it is.
Richard Kaplan, Resource Education Solutions	The school systems do not provide the necessary protection and remediation. They consistently treat the symptoms as if the student has a Learning Disability, ADD, and or is a disruptive high maintenance child. Due to the school systems rigidity, intolerance, systemization of behavior, and discipline policies that induce fear and anxiety. The Asperger students responds with classic symptoms. None of these symptoms are not typically observed prior to attending a school environment.
Cynthia McLaughlin-Share	Educational. Societal. Civil Rights. Human Rights.
Sarah Joor	By far, education needs to be a priority. FAPE needs to be assessed & the fact that education is a civil right that special education families everywhere enter legal battles to pursue this right.
Laura Walls	Educational
Christine DeHaven	Educational- kids with autism really need to make sure they can read to many only get up to a third grade level
Lucy Beadnell	Long waiting lists for public services and limited availability of existing services. Poor development of inclusive classrooms and ways to adapt typical learning and work environments to the needs of people with ASD.
Margaret Woch	Educational 100%.
Pamela Harbin, Education Rights Network	Education policy needs to be developed to support full inclusion of autistic students.
Brian Kelmar, Parent of son with ASD	educational
Anonymous	Educational interventions are my greatest concern.
Kayla Weant, Prosper Independent School District	I think more research needs to be done on the cost/benefit of the inclusion model in education with students with ASD. Many students with ASD have sensory or behavioral issues that make being in a general education class extremely stressful for both the student and his peers. Is it truly benefiting everyone involved?
Cheryl	Educational and community level interventions
Chitra Raman, Parent	Educational methodology is the most important priority followed closely by complementary/integrative interventions. The standards across school districts, and even within the same school as implemented by different teachers shows tremendous variation in quality and outcome to the extent that the opportunities to grow and overcome afforded our children boils down to a roll of the dice. This is patently unjust in one of the most resource rich and technologically advanced nations on the planet.
Anonymous, Amp	The special needs programs in our school systems are terrible. I could spend HOURS on this topic alone. IEP's are not individualized and should be named GEP's, for GROUP educational plans. Teachers across the board need to be educated on how to work with not against our children with needs. Teaching to take tests doesn't work for many of these struggling children. Our education system has GOT to be reformed across the country. There should be standards across the board for these children. I am very unhappy with so much of what I hear going on out there in our schools. As for behavioral gaps, that is another sore subject in our community. Expectations of fitting in and "looking normal" is not always the best way for every child. I would like to see some options to servicing autistic individuals that is NOT ABA so that people have choices for THEIR child.

Current priorities are appropriate (behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions)

Respondent	Response
Anonymous	All of the above.
Julie Long, parent of child on spectrum	All of these areas need to advance for the benefit of individuals with ASD: behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions. Specifically there should be better alignment between these areas - it is too disjointed. Also public education needs to be more accountable for progress in ASD children meeting educational goals. There is currently zero accountability. ZERO.
Nan McVicker	Research need to concentrate on giving autistic kids and adults the skills needed to survive and thrive, NOT on teaching them to fake being non-autistic.That goal encompasses all of the above.
Colette Tarrani	All topics are important to a parent!!!
Anonymous	All equally important
elaine nelson, young adult son with autism	all of course
Maranda, Houston Autism Resources & Support (HARS)	Behavioral, absolutely! Educational, absolutely! Technology, absolutely! and Other interventions, absolutely! All of these areas of research will only continue to help us, help those that need it.
Holly	All of them, there are no services that uses them. The schools won't leave in anything outside of ABA, the therapies are a crap shoot with "experts" knowing little or nothing, the material is outdated, and overall the kids coming through are running out of time,and some already have.
Anonymous	all of them.
Kathy Bentn , Coaching for Aspergers	All of the above needed for those living with adults with aspergers. The Neurotypical adult needs this help just as much as the adult with aspergers
Leo Yarbrough JR	I think the biggest gap in research is "treatment". So much is talked about screening, early signs, and symptoms but treatment is not. What will cure Autism? Yes prevention is a goal. But what about curing. Not enough research or effort is put into curing those millions of children who are on the spectrum. It's almost as if - once you got it - it's too late. You got it and there is nothing anybody can do to help you get rid of it.
Anonymous	They are all very important.
Michael Ridgway	All services are very important as they grow in age.
, Parent	Services and policy, while welcome, are a Band-Aid. The focus needs to be on research to find the cause(s), the continued research to craft the treatments that will allow individuals to live normal lives without government supports. Don't be fooled by the small portion of the autism population that wants to pretend there is nothing wrong with having autism because they function at a minimally acceptable level. Most people with autism function far from normally, living lives without meaning, and need real treatments that are medically based.
Jackie, Parent	All! We are in desperate need of all new information. Parents want to know more for now and the future.
Warren Schaeffer	Everything
Cindy Clearman	In order to provide appropriate educational services and family support, all of the above are important, as they are all interrelated.
Kay Ashbrook, Myersbrook Supported Living Agency Corp.	all of the above
MaryAnna Dunn	All of the above, but I would say this: while pharmacological interventions are very helpful, there are other promising medical interventions that are under-funded, undoubtedly because there are no pharmaceutical corporations funding them. I would like to see funding for rigorous studies that are unlikely to attract the attention of corporate sponsors.
Anonymous	All!
Michael Buzzard, Parent of children with Autism Spectrum Disorders	All of these interventions are vital. Finding the appropriate resources is almost impossible for families to find and more importantly access. The ones that you do find are many times not able to give the services that are really needed.
Anonymous	All of the above. Effective interventions are clearly beneficial for individuals and their families.
Chuck Hartseil	I think the above topics capture critical issues. Again, transition into adulthood and outcomes for employment, living and recreation.
Becca Lory	ALL, yes, ALL of the aforementioned topics are in much need of being addressed.
Jessica	All of the above
Gilda M Sanchez	All topics above are equally high priority: medical/pharmacological treatment for extreme behaviors (aggression, rage, self-injury); educational - more inclusive programs amongst mainstream public school systems; behavioral intervention; complementary/integrative interventions; and technology based interventions such as visual aids or touchpad communication devices to enable effective communication and cognitive processing.

Improve the evidence base for treatments and interventions, and make that information more readily available and widely used

Respondent	Response
Charlotte	Only evidence based therapies should be used to help those on the spectrum. Too many autistics are subjected to abusive, harmful treatments by quacks and charlatans and it must be stopped. As much as I see the value of finding out why autism occurs, just as many resources need to be allocated to discover ways to improve the quality of life of those on the spectrum and their families who support them.
Anonymous	Definitely need more research, services, and policy around best treatment practices, evidence-based strategies, and medications.
Anonymous	Absolutely there is a gap between what is offered as standard special education and the advancements of science and the understanding of how kids with autism learn and excel. I would love to see some widespread education reform to close this gap. There is little tolerance on the part of educators, in my experience, to really understand the behavioral basis of kids and how that affects learning.
Anonymous	Forcing mandatory insurance coverage for ABA and AAC technology/devices is vital. CAM and "Biomedical" intervention should be debunked and definitely not promoted or funded! Dangerous practices such as MMS/CD should be denounced and/or illegal, and medical professionals and educators should be trained to notice signs of this type of abuse of autistic children.
Anonymous	Families and providers need to be made aware that Applied Behavior Analysis continues to be the treatment of choice for ASD based on years of research and recommendations by the American Academy of Pediatrics, US Surgeon General, and NYS DOH. Fad treatments continue to absorb resources and do not result in meaningful or lasting change.
Suzannah Iadarola, University of Rochester Medical Center	I think there has been a disconnect between what research has identified as evidence-based and what is communicated to consumers. One potential way to address this might be to stipulate that newly funded research projects include a "dissemination of results" section that outlines how the findings from the research will be communicated back to the study participants.
Carol Bunten MD, The Vancouver Clinic	Developing evidence-based effective strategies is always worthy of research dollars.
Molly Whalen	There is such a huge need in this area. Families do not understand what is truly effective or evidence-based therapies.There needs to be much more focused educational and therapeutic intervention recommendations and vetting.
Anonymous	Guide parents to the scientifically proven interventions.
Heidi Stewart	research in why some treatments are better than others- explaining to the public what is research based interventions compared to "quick fixes"
Jacque Ruch, Easter Seals and Private Practice Provider	Continued research of evidence based practices, to ensure what we are doing is the most effective strategy.
Anonymous	Research that gets at effective treatments for, and even prevention of ASDs is also critical.
Anonymous	As a parent of a child on the spectrum, there's a significant number of claims for therapies, diets, medications, etc. that can help autism, but it's not very easy to find reputable studies to back or debunk most of the claims. It would be great to either have better information about scientific research on these therapies/tools or to actually have the scientific research done.
Tami	We really need more accessible and knowledge of available treatments and other interventions. We feel lost on how to help him more...
Michael Waddell, Saint Mary's College of Notre Dame, IN	As noted in question one, there is growing scientific evidence that supports the efficacy of interventions that are non-behavioralist (e.g., developmentally based programs). It is high time for the US government to recognize this fact and begin supporting evidence based non-behavioralist programs as strongly as it supports ABA. Some of these programs are designed for use in schools and the community as well as in the home. Interventions across all of these environments, as well as the workplace, should be supported.
Anonymous	Research should be done on any potential new interventions to determine success rates
Sara Kleber-Lowery, Centerstone	There is a lack of providers of evidenced based practice for services specific to those with autism in some more rural areas. Children on the spectrum are being funneled through the mental health system which does not fully meet the needs of the child or the family.
Amanda Dorman, Logan Center	Funding for autism treatment should be limited only to treatments that are evidence-based or established interventions according to the National Standards Project. While interventions such as facilitated communication, gluten-free diets, and auditory integration training have gained attention in the media they are considered unestablished treatments. Funding dollars would be better spent on evidence-based treatments as they are proven to render positive behavior change. This is more important now than ever as the federal government will soon be closing all the sheltered workshops and expecting people with autism to join the workforce. As educators and therapists we will need all the resources available to make this happen therefore, it is critical that insurance companies and state-funded medical plans concentrate their autism spending on evidence-based treatments as sub-standard methods waste time and money for all parties involved.
Wendy Fournier, National Autism Association	There is an enormous amount of research that needs to be collectively organized and made easily accessible and highly visible to both physicians and caregivers. We need a clear guide on evidence-based treatment options. Parents are forced to seek out research studies on their own. IACC should be doing this for the community.
Lori McIlwain, National Autism Association	NAA encourages the creation of a reliable, universal guide on available evidenced-based treatments, interventions, therapies, proven alternative options, and safety information. The community should have access to organized, reliable and consistent information. We encourage the creation of a central channel, such as Autism.gov, which can provide universal access to this information to all populations. We encourage IACC's support of widespread training for first responders, school personnel, and other service professionals, and ASD replication of the International Association of Chief's of Police (IACP) Alzheimer's Initiative. Overall, we feel a comprehensive federal autism plan is needed.
Neil A Snyder, American Speech-Language-Hearing Association	Evidence-based comparative effectiveness research that identifies effective treatments is needed. While there are many early-stage efficacy investigations available that provide preliminary support for the efficacy of speech-language pathology interventions to improve speech, language, and social communication, much more research is needed. There also needs to be greater emphasis placed on sub-groups within the ASD population and the responsiveness of these sub-groups to various treatment approaches. Comparative effectiveness research should clarify our understanding of the effectiveness of different intervention approaches, especially with respect to which approaches provide the most meaningful communication and social interaction outcomes for young children with autism. Research also is required to determine how common practice in screening, assessment, and treatment is affected by state and local regulation and state interpretation of federal guidelines. Examination of the impact of changes in frequency, intensity, and duration of treatment is a critical issue to be included in research. ASHA suggests adding the following objective: Conduct three randomized controlled trials to test the efficacy and/or effectiveness of interventions to treat speech, language, social communication, and cognitive impairments for school-aged and/or adolescent persons with ASD evaluating the comparative effectiveness of approaches in ASD. 3. Research designed to assess the efficacy of treatment approaches to determine which intervention(s) yield clinically significant improvements in speech, language, and social communication. a. Research designed to identify which interventions are most beneficial for which sub-groups of individuals.
Michael McWatters, Parent	More focus needs to be placed on getting evidence-based services to those who need it.
John Rodakis, N of One: Autism Research Foundation	In research that investigates various treatments and therapeutic approaches be it a gluten free-diet, or supplementation with folinic acid, would like to see less emphasis on the % that respond and more emphasis and reporting on trying to identify and understand the subset that do respond to a particular treatment. By emphasizing that not all respond to a particular treatment, we risk deterring parents from trying treatments that have could have substantial therapeutic benefit.

Need research on long term outcomes of treatments and intervention, as well as the translation and implementation of research based treatments and interventions

Respondent	Response
Joaquin Fuentes, Policlinica Gipuzkoa & Gautena, San Sebastian, Spain	Potential generalization of controlled intervention research trials in the regular environments
Hannah Reed, MD, Yale Child Study Center	As we improve early diagnostic tools, we must have low cost and low risk interventions available for families. Outcomes research should be seemlessly integrated within treatment and intervention programs, allowing for large-scale data collection, reductions in research costs, and minimal duplication.
Anonymous	Meta-analysis of the effect of specific interventions on long-term functional outcomes (employment, physical and mental health, independence in living situation, others?) vs. studies looking at short-term attainment of specific skills.
Anonymous	What is the long term effect of drugs on children with autism?
Anonymous	Research on how behavioral and educational interventions affect individuals with ASD should be an area of focus. Also, many individuals are unsure of how medicinal interventions will affect children with ASD and there seems to be a discrepancy between doctors on this issue.
Michele Thompson, Nebo School District	Translating evidence-based research into practice for educators on effective teaching frameworks and/or methods and foundations of ethical and effective behavioral supports when working with individuals with autism.
Andrew Gibbs	Research that focuses on the efficacy, patient and family well-being, and positive outcomes associated with tje various forms of treatments and familial supports should be the primary funding priority of the IACC.
Anonymous	Need better translational work. All federally funded research should be published open access.

Need to educate parents about available treatments and interventions, and to help provide these interventions

Respondent	Response
Darin McClain, County social worker	There are very, very few resources for families to access to get accurate, helpful information related to diagnosis, treatment/management approaches. Interventions are almost exclusively aimed toward the person with autism.
Anonymous	Each state should provide Parent to Parent support programs (p2pusa.org) so that a parent has a place to call and to get support/information/navigation during those early months of concern. We need help with behavioral challenges/ language from the early years. Educational issues are always huge. Still need help with IEP coaching and support.
Cyndy Langat, Kenya Autism Alliance	To add to early intervention, a standardized step by step outline of what needs to happen after intervention must be rolled out to parents. In addition, have that same material translated into different languages because we are a diverse community.
Anonymous	Education, reading, research are the best way to understand this condition and how to create resources to best serve this population.
Gillian Stein	Treatments and interventions and setting up the environment for success are all important. We here about so many models and what I find the most frightening is that there are numerous people out there saying "X" cured their child or helped them make progress. These ideas aren't cheap, might be harmful, and certainly cause tension in the family when one parent wants to do "everything" and the other parent wants to be cautious and not go bankrupt. People need help sorting out good/bad and horrific treatments. Technology has helped many kids but is it affordable? How can peers be used?
Jen	I'm struggling in Las Vegas to find parent training for dealing with autism and it's effects. If there was a centralized location online to find classes, I would surely sign up! Parents are even more important than therapists, because we are with the child in their comfort zone and need to know how to redirect repetitive behaviors, etc. I'm reading all I can, but would love to be able to get all the information I need in one place.
Kristi Layman, Parent	I think providers and educators suggest medications too quickly and parents need more support with other options such as effective behavioral therapies, occupational therapy
Kathy	I think people need to get researched information on all the different therapies and diets, supplements, methods, to be able to sort out what is best practice, and what is not.
Michael Brackett, Easter Seals	Education is the key to understanding what is going on with this subject.
Nancy Roberts	I lack help in my area for support and understanding. Everything I have learned and am dealing with I had to find for myself through trail and error. Do I understand no, will I maybe but so far I am not hopeful that my answers will come from anywhere except myself and what I put fourth in learning
Anonymous	Education needs to be cultivated to cater to people across educational backgrounds and cultural sensitivity should be paramount in sending the message that intervention is key.
Anonymous	Medical professionals should offer support to families with a recently diagnosed child. Most families are never informed of their options or referred to outside specialists.
Kristina, Project Youth Learning and Leadership	Parents, especially, don't understand how long and intense therapies ( like reading, speech, OT) will have to endure before a student truly begins to progress. Schools don't do a great job of contextualizing interventions and the long road. Students need specific, intense, and daily interventions or therapies until...
Cindy Fogle	Promote parent-led or parent-assisted-style ABA techniques.
Anonymous	My response would be almost identical to Question 1: Access to accurate information: - Much of public conversation about autism still circles around the myth that vaccines cause autism. Misunderstanding what caused it prompts parents to seek out ineffective or even harmful treatments. - Many families are directed toward ineffective or "magic-bullet" treatment options. Access to EFFECTIVE treatment: - Access to information about which treatments are and are not effective. Far too many families are looking for treatments easier and simpler than intensive ABA therapy. This leads to seeking treatment that may not be effective. - Access to information on evaluating treatments. Many families may think a treatment is effective due to the "placebo effect." - Access to treatment that will be provided at effective levels - Access to funding for treatment. - Access to professionals (including in rural areas). - Elimination of waiting lists. - Support for families struggling to access treatment. Frequently this could mean counseling for parents struggling to accept that their child may need 20+ hours a week of intervention. Access to EFFECTIVE treatment: - Access to information about which treatments are and are not effective. Far too many families are looking for treatments easier and simpler than intensive ABA therapy. This leads to seeking treatment that may not be effective. - Access to information on evaluating treatments. Many families may think a treatment is effective due to the "placebo effect."
Melissa Poole, Community Services of Stark County	The best way for a parent to remember what's being said at an appointment is to have it wrote down so they can take it home. It also helps to have both parents or more than one person at the appointment with the parent to listen to the doctor and to help with the child. The team approach is much more supportive than a parent who has to do this alone, especially if they have multiple children. Information to parents needs to let us know why you think you know what's best for our child and what are our options. We also need to feel like we are not alone and that this is not our fault that our child is on the spectrum.
Melissa Diamond, A Global Voice for Autism	-Education in evidence-based practices for all parents available immediately at the time of diagnosis so that families can start supporting their children regardless of waiting lists etc. -Culturally appropriate intervention services that are affordable to all families.
Anonymous	Not all treatments will have the same effect, just like cancer treatments, but some will so they need to not be discredited if all participants did not see gains. Parents need to be told this autism is medical and treatable. Parents today are still being told it is not treatable and children will be in an institution. Treatment studies need to be funded. Parents need to be told where they can go for help. Currently parents are given no resources at the school if this when they are first diagnosed. Pediatricians have no guides to give families on where to start when they start missing milestones. Insurance companies are denying claims due to autism. 1) The basis for most IEP law is found in three federal statutes, The Individual with Disabilities Education Act, Section 504 of the Rehabilitation Act of 1973, and the Family Educational and Privacy Rights Act. IDEA is a federal law binding in all states. State law can mandate more protection than IDEA but not less. But this was never funded - so states are crippled by the costs and families are suffering 2) Self Funded insurance plans are paying for therapies sometimes but they can not afford the cost of therapies on their employee families - so federal funding needs to cover these and of course medicaid needs to be covering ABA, MRI and all standards of care along with compounded pharmacy as most kids have milk allergies and can not take lactose containing drugs.
Ellen Silverman on behalf of Maria Nardella, WA State Department of Health	? Continue to support clinical trials ? Insure that parent/caregiver education for interventions is included ? Continue to support studies aimed at different needs across the life course ? Insure that treatments and interventions meet the needs of diverse populations and that services offered/studied include using languages other than English.
Julie Cadman, Healing Complex Kids	Autism is curable, and still today, MANY families are told there is basically nothing they can do. I believe there needs to be better screening tools and information that doctors and medical practitioners can immediately provide families to help them get started on a treatment plan.

Personalized combinations and types of treatments and interventions will be the most efficacious

Respondent	Response
Connie Zienkewicz, Families Together, Inc.	All practitioners should include the family in all decisions and making recommendations for interventions at home and in the community How parents can provide the supportive environment for their child from the earliest point of suspicion to get the early intervention necessary to lessen the severity of the condition.
David Feickert	Try and figure out the best medicine for people instead of just perscribing meds that you might think will work instead of finding one med people tend to put patients on many meds.
Kathy Wilcox, ACCES-VR	There are many interventions and theories available to address ASD symptoms, but I believe a "one size fits all" approach is not effective due to the great variability children and adults on the spectrum, both in terms of cause of the ASD and presenting features. More research is needed to be able to tailor interventions to the needs of the specific individual.
Leslie Fox, US Department of Education - OSEP	I think helping practitioners understand what treatment strategies are effective under which conditions and how to use critical analysis to better select and support interventions is important. If therapists and teachers understand why a selected treatment is appropriate for a specific child, situation or concern then the ability to communicate that need to parents is supported and there is greater likelihood it will be implemented with fidelity.
Annette Bradshaw. Parent/Speech-Language Pathologist	Hierarchy of treatment
Sally	Free access to research is critical, which is provided by PubMed central. Parent/Guardian education is important, easy access to understanding behaviors, suggested interventions, medications and technology is important. Being able to take an approach and intergrate it in a home environment is important. Provide parents with the tools to do so. The most important research priority to me is targeted treatment to improve the overall quality of life for the individual with ASD and their family
Tracy Robbins, mother/care giver	do the research on actual people who suffer from this issue. This would help in so many different areas and effect so many lives for the ease of care to combatitive individuals.
Alanna	Wow no!!! [Profanity Redacted]! Interventions and medications?!? Do you people even know what autism is? [Profanity Redacted]! That's terrifying. No. No more dog-training for children or drugging them either. That's so evil. Seriously. How can I understand what is happening? By tatalking to autistic people. Nobody else knows what it's like to be autistic. This should be a given. Who else would be able to offer insight into a neurological perspective they don't experience first-hand?!
Anonymous	More than one treatment needs to be used. Children respond differently. What works for one, doesn't work for another. My therapist kept pushing PECs (Picture exchange). The fact is, my non-verbal child throws pictures in the trash. But the school system doesn't allow for, fund, or teach sign language for someone who can't speak. Our therapy outside of school does the same, won't teach sign language. I believe it should be universal. Not everyone carries pictures around. Not everyone uses an ipad. My child threw our technology-based intervention into the fish tank. Universal language can't be written, but could be sign language.
Susan H.	Don't treat these kids like they are porcelain, start with using the sensory funnel...starting with sensory, awareness, function...after those three things are tackled and the person is coming out of their shell, than start working on: emotional, social and finally executive functions...
Pamela Glatter, Parent	You can research until your blue in the face. The problem with autism research is that Autism is being diagnosed and the symptoms are such a large range. A child that is throwing his feces and biting himself , should have different services than a child who is socially awkward. There are clear and proved methods to assist in improving autism symptoms. There are not regulations of schools and agencies on a federal level that are consistent through out the states.
Tamara Ratley, Principal at CEC-North	Assist parents in seeking out advice bc there is not cookie cutter answer- it is very individualized.
Suz Swanson	ABA is ABUSE! So by not recommending ABA would be a HUGE first step for those of us on the spectrum. Antipsychotics must be monitored and not prescribed all the time. They are not for the symptoms of ASD.
Mom of Two	Treatment is often hit or miss. It can take years of throwing meds and therapies at symptoms to see what therapy might be effective or to rule out medications that might bring about additional pain and heartache or debilitating side effects. I believe we need more research that could help parents, physicians, and therapists identify autism subgroups (genetic testing?, fMRI?) so that we can more quickly and accurately (and with a lot less money) determine what combination of treatments and therapies might be useful. As it is, I've known parents who bet their life savings (and the financial security for the rest of the family) on one therapy, thinking it could be The One, only to be let down once again. Meanwhile they may have lost precious time because they didn't invest in another therapy/med that might have actually made a difference.
Katie Murphy	Granting people on the spectrum (of all ages) more control over their treatment options. Greater regulation of autism treatments, particularly the use of aversives and the sale of untested herbal or medical treatments (i.e., chelation therapy).
Anonymous	Forget treatments and intervention -- treat autistic people with love and acceptance
Catherine	More followup between doctors and parents about behaviors and medications.
Anonymous	Question 4 reminds me that we as parents need help prioritizing once we do find the right resources, medication, etc. Granted, every child is not the same so the priorities are not going to be the same, but I could have my son seeing several therapists a day and overwhelm him, but instead we are having to figure out the priority of the month :/ Speaking to policies, we would love to see more therapists and services covered by medical insurance. So much is out of our pocket in the Commonwealth of Virginia.
Anonymous	I believe that everyone comes to Autism is a slightly different pathway, due to a variety of epigenetic predispositions combined with an impaired immune system. Therefore there are many different paths to reducing and/or eliminating symptoms. More research to "fast track" approval of the biomedical interventions that many have found success with would not only make lives better but also reduce the need for more services. Getting financial help with important items that are helping individuals improve their symptoms would help significantly.

Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees

Respondent	Response
Anonymous	This is another area where as a clinician I find a lot of variation in recommendations. Some depends on what is available in each area, but often it depends on the first person who examines that child based on the concerns whether it be medical or educational. It seems that there are no real definitive answers
Christy Chapman	Educational gaps are huge. While Special Education staff are trying to stay on top of research and interventions for Autism, general education teachers and staff are leaps behind and do not know how to handle students with Autism for the most part. More training in teacher preparation programs for general education teachers is vital.
Anonymous	Mainstream doctors need to be taught how to identify vaccine injury, and how to treat it.
Tonya Cummings, Parent	The main problem is that all of the great programs available are terribly expensive and not all insurance helps out. It would be nice to know right away which kids would benefit best from certain therapies. Behavioral therapy is very important, but also some kids need medication. Very few doctors know what they are doing with regard to meds and many parents are resistant to trying any. The schools are filled with abusive employees and do the bare minimum to follow the law. It's mostly babysitting for them. They fight parents tooth and nail and are willing to spend more on lawsuits than on kids' education. Bare minimum is their motto. I'd have to say better information on what actually works regarding therapy and better screening/treatment for the co-occurring conditions in ASD. Doctors, in general, know less of these things than the parents. Very sad.
Joyce Darbo	My son, soon to be 13, was offered an Emotionally Disturbed classroom placement due to his anxiety and social skill deficits. This was the best the district could do for him. I liked the small class size and higher ratio of staff to student. I also liked the mainstream opportunities that he has been afforded, but these do not come easy. the special ed teacher has to strongly promote mainstreaming to the general education setting where my son's classroom is housed. General education teachers need more training in children with autism . This is a giant gap that needs to be addressed. Unfortunately as well, my son's class is separate from he school in the back forty of the campus like it used to be when I was in middle school 40 years ago. These things have not changed sadly.
Janice Rushen, parent	I think the biggest gap is in finding services in a particular area, the overwhelming amount of hoops one must jump through in order to get services for their child. I also feel that our educational system (public schools) are not capable of handling or understanding children on the spectrum. There isn't enough time, money or teachers who are thoroughly knowledgeable in the areas of intervention and treatments. I feel the children suffer greatly because of this.
Linda Austin	Understanding what is happening with your child who has Asperger's is of utmost importance. Unfortunately there are few professionals who understand it themselves and are not able to help. They try to treat them with the same types of programs that are used for other mental health problems and it just does not work. Their Behavioral problems, medication, and education requires a whole different approach.
Neva Parkins, Parent and Advocate	We need more training for general education teachers to allow them to support children who are on the spectrum. It is nearly impossible to create an inclusive educational environment when teachers do not have the skills to meet the needs of children with ASD
Rosalind Gauchat	Priority education and support must be given to educators of the zero to three environments (parents included).
Anonymous, Downstate U. Hospital Brooklyn	The gap I note is between teachers who are the primary source of intervention and ABA sevices
kimberly lockhart	Our schools are woefully uneducated on dealing with children with Autism. My school district has ended up having to contract with outside resources to coach their teachers on how to effectively interact with my child, but that wasn't until he reached 3rd grade. He spent Kindergarten through 2nd grade with teachers who wanted very much to make things work, but just didn't have the knowledge, resources or access to training. With the number of children on the spectrum, why do we not have an ABA Therapist in each school or at least each school district? Why are therapies not included in all medical insurance plans? Why does it sometimes take years to get services through the government?
Korri Ward, Northern Nevada Autism Network	Our communities need a workforce of BCBA's and RBT's to treat our children at their home, in the community and in our schools. Adults with autism who need supports must have access to their supports from a talented and competent workforce. Vocational Rehabilitation needs to provide ABA. Waiver programs for our most fragile adults with autism that have aggression must fund supported living assistance paraprofessionals at a rate that will maintain a competent and highly trained workforce capable of developing and implement behavior plans. (In Nevada billable rate of $19.33 fails to provide this workforce.). Parents and medical providers must be informed about the connection between pain and inappropriate or aggressive behaviors. Medical providers must become proficient at examining nonverbal and noncompliant patients to identify and treat gastrointestinal diseases, seizures, recurring sinus infections, anxiety, vision problems and other conditions that are "silent" yet common in autism.
Kristina Czapkay, A.L.L.E.N. Inc.	Service providers including teachers, special ed teachers, resource teachers, speech therapists, occupational therapists, 1 to 1's, behavior staff, and principal's should ALL have to receive content and coursework specific to the disability they serve. The vast differences between job duties and training provided are unacceptable. Quite impossible to support someone when you don't understand them, or their different abilities.
Michael Notaro, University of Wisconsin-Madison	I think that a lot of special ed classes should be required for teaching degrees and certifications. Not just a handful as there are so many special needs children that are now going to public (and private) schools as opposed to home schooling. I have to go and spend the hours at my child's nursery class just in case they need me because they aren't trained on how to respond to possible behaviors that can arise due to autism. Every other parent drops their child off and picks them up when they are done.
JoAnna Bryant, Parent	This is an important topic personally. I feel our educators of the 21st Century while improving....STILL have a long way to go in understanding the methods to properly TEACH individuals on the spectrum and understand their behavior/communication. SAD!
Julie Wheatley	Proper training for school personnel that actually work with students with regard to creating a supportive environment where the ASD student can learn and not just be babysat. Much potential is being lost for the ASD student because the schools do not have the resources help them develop into tax-paying citizens or at least manageable at home. There is too much disconnect between what works and what is available. The quality of training (if any) of those who work with ASD students is low with no follow-up or continuing education.
Alexandrea Van Der Tuin, Disability Advocate and Wellness Coach who's an Aspie too.	I support therapies done buy properly trained Professionals who have the right mindsets.
Donna Miglino, Parent	Professionals in the field of education need to be better trained and only open minded individuals should be working with these children. Those who have already chosen to disregard the possible effectiveness of new technology should be replaced.
Alicia	Emphasis should be made in diagnosing under 2. Educating against "wait and see" and getting immediate therapies going, working on eye contact and responsiveness.
Leslie, Maryk	The information available is better thanks to Google! The medical community needs to get on board with having referral information readily available; patents are in shock after the diagnosis & actually having someone contact them gets the ball rolling. Parents can be in denial & prolong the potential recovery opportunity.
Laura Cellini	Education for the medical field on translational medicine is desperately needed. Science has elucidated many co-occurring and underlying conditions associated with or contributing to autism and many health care providers are unaware of them. CMEs on the significance of proper identification and treatment for: allergies, autoimmune disease, gastrointestinal disturbances, immune dysfunction, metabolic abnormalities, mitochondrial disorders, neuroinflammation, oxidative stress and seizure disorders is of utmost necessity.
Mary Parnell, Parent	teachers are not educated enough on how to teach and manage autistic child in there classroom. inclusion may not be the best idea for part of this diverse population.

Research and availability of technology based or assistive technology treatments and interventions

Respondent	Response
Charles Cowan, Seattle Children's Hospital Autism Center	Studies on effectiveness of distant assessments via telemedicine, crowd sourcing, video analysis, etc.
Donnell Probst	Understanding how individuals with autism process information and respond in the online environment is becoming increasingly important to both the social development and the physical health of individuals with ASDs. Differences in language processing as well as co-existing disorders such as attention (impulsivity) and anxiety may make individuals with ASDs more susceptible to the negative impacts of various types of media messages (e.g. body image, depression, sexuality, social interaction, etc.). Social media and mediated consumer messages may lead individuals with ASDs to respond or participate in media in an unhealthy manner leading to poor interpersonal relationships and negative personal health outcomes. More research is necessary to determine how to educate individuals with ASDs about media literacy practices in ways which are meaningful and appropriate to the various learning and developmental differences of people with ASDs.
Jennifer Hendrick, Parent	Federal support for "charter" or "learning difference" schools - State public school funding is woefully inadequate and we have a growing population that the IDEA isn't helping. Recreational services for kids on the spectrum.... Whether brain stimulation can help with ASD as it does for depression in creating/supporting new neural connections for relationship building.
Anonymous	Services for people with autism on college campuses is challenged because the few supports available only deal primarily with academic support. The needs for life coaching to manage day to day life skills in colleges is overwhelming for most students with autism.
Star Ford, Divergent Labs	The top priority is in creating tools and technologies to help people gain communication and access. These include mobility devices, communication technology, and other aids that allow a person to live more independently and closer to the level of autonomy experienced by non-disabled people.
Teri Doolittle, PA-C, MHP, DHSc	Assistive technology has come a long way, and educators need to catch up. Vocational services need to move out of the sheltered workshop - there should be a firewall preventing TTW vendors from benefiting from keeping an individual in a setting that does not match their actual career goals or abilities. The abuse of the TTW system must end; there is no reason why executives in non-profits should be paid huge salaries to keep a system in place that runs best when people are held back instead of moved forward.
Alice Ospovat	It is vital to prioritize science-based, proven assistive technologies and therapies, and to allow autistic children in particular the freedom to be educated in a way that works best for them, rather than focusing on forcing them to behave normally. Time and money should not be wasted on quack therapies like chelation, gluten-free diets, hyperbaric oxygen treatments, vitamin regimens, etc.
Anonymous	Technology-based.
Jilene Chivell Griffiths	Technological interventions such as simulators to teach adults/young adult how to transition into parts of adulthood.
Jennifer Warren	Please consider that many middle income parents simply cannot afford much of the technology that is currently available. Any assistance would be appreciated. For families who have been on waiting lists for any services at all for many years no help is available. Most of the newer technology has been tailored to higher functioning autism. The majority of people with autism also have developmental disabilities. Many do not read or write. They are being ignored.
Anonymous	the behavior when a student is unable to communicate is important. More options for devices and methods of communications are necessary.
Anonymous	Technology-based treatments
Anna	more on AAC (assistive augmentative communication), more on access to services and resources (in particular for adults), LESS on ABA, LESS on behaviorism. Less on compliance based training therapies.
Suzanne kollar, Parent	Technology assistance is vital for these kids to survive and thrive
Tara McMillan	having a child being able to speak with a communication device when vaccine injury has taken their voice away
Alexa Appel, Autistic person	Alternative communication. School accommodations. Making public education, in general, less actively hostile to young minds who learn in ways that differ from the accepted "norm", because honestly it's not actually all that good even for neurotypical kids it's just that they manage to adapt to that ridiculously maladaptive environment.
Catherine Camp Boyle, Autism Housing Pathways	We need to give children access to assistive technology earlier and more consistently to enable them to develop the communication and independent living skills they need to be successful. These need to include systems that can help individuals to initiate activities; just because someone knows how to do something, doesn't mean they don't need cueing to initiate. We need a better understanding of medical triggers of maladaptive behaviors. Complementary interventions have a role to play in this area, as a combination of diet, supplements, medication, and lifestyle changes (such as meditation and yoga) can be quite powerful. However, we lack a poor understanding of who will benefit most from specific interventions.
Annie Acosta, The Arc	Technology. Special attention should be given to technology supports, which can provide considerable benefit, particularly for persons with ASD who are nonverbal, and are increasingly cost effective. However, there is presently little to no data on which technology products are being provided to people with ASD through service systems. Anecdotal data suggests that many people with ASD are being provided with technology products that are outdated, ineffective, and do not match the user needs and goals of the person with ASD. A study should examine the specific technology products and related support services being provided and the effectiveness of remote, on-demand, consultation from experts for product matching, training, set-up, and ongoing support. In addition, studies on effectiveness of assessments and consultations via telemedicine should be conducted to address the shortage of qualified providers in many parts of the country.
Anonymous	Augmentative/assistive communication. Programs aimed at making communities more inclusive rather than at "intervening" with autistic individuals.

Endorsement of specialized or ASD specific treatments and interventions

Respondent	Response
Anonymous	Whole child interventions (not just behaviorally-based) Family supporting interventions
Dean	Make Communication classes the standard in public schools! A tailored communication class for ASD would be a miracle! To be honest, cognitive-normative people would benefit too! We really ALL need to learn how to communicate better and most of us don't know how to!
Judy Ferry Rohlfing, M.S. Ed., Ivy Tech Community College - formerly public school corporations K-12 for 26 years	Services: OT PT S/L always have been very helpful to me as a teacher. I have concerns that students do not receive as many services as they could - there are always shortages, it seems, in these fields. Doctors do not seem to have the specialized knowledge, especially in the smaller towns in our state, that is needed to help parents and children who,have ASD. I have concerns that ABA services have sprung up too quickly - and that only some of them provide high quality services. Other companies, I feel, have simply jumped on the bandwagon to make a quick buck in a field where $is available. Teachers are providing nclusion services - in many instances - and I feel this is an excellent thing. Their services however, are being stretched too thin. A teacher may go into a six grade classroom - where she may provide service for two students on the spectrum, a student who has ED, a student who has a mild cognitive disability (IQ 75 for example, and three students who have SLD of varying types. They each are to receive language arts inclusion for one hour, but in that on hour, it is impossible to meet all of their needs - particularly if one of the students who,has higher needs (ED or ASD for example) is having a rough day.
Anonymous	social interaction training, especially moving toward employment. these are wonderful adults, with so much to add to any company.
Melissa Friesl, parent	Yes, I think with there are more services needed for teens who are high functioning with autism. My son is so fixated on time, and how he can do more than one activity in a day. We go to counseling, but I wish there was therapy or therapists who just specialized in individuals with autism.
Anonymous	Many people with autism have a good shot at life if they can communicate. Speech therapy for those kindergarten age and younger makes a huge difference for many kids. Special ed pre-school programs try to do this, but extra speech therapy is a good idea, and I have recommended private speech therapy to many parents. A good speech therapist also works on the social aspects of speech, which is where speech meets social skills. Just because a student can speak and comprehend (even under age level) does not mean speech therapy should end--those social niceties can make a difference in obtaining and keeping a job for those with that potential..
david may, KidstokidsII A NJ Non Profit Corporation	I am part of an organization that runs sports and artistic programs for kids- we differentiate ourselves as being developmental not only for the sport i.e. swimming, TKD, Golf but we also focus on some very basic cognitive skills that can be taught through our HS students.. Self-determination, "flow theory" relationship with task, skill and self-control. It's amazing what we can achieve with our kids. You are welcome to come and document. Sadly their are few programs for our kids period! The focus on behavioral treatment sadly overshadows the work on Cognitive development that has a far greater impact - see the work by Feurstein at the ICELP in Israel International center for the enhancement of Learning Potential.
Jason Crose	I have Asperger's. There is a strong following for a protocol known as Frequent Low Dose Oral Chelation. I am using this protocol. It is not easy and a lot of people get it wrong. But I'm seeing improvement in digestive issues and anxiety. The anecdotal evidence is growing. Testimonials on YouTube and various forums are suggestive of people recovering from autism or autism like symptoms. I understand that you cannot take action on anecdotal evidence, but the awareness of this protocol may lead to further understanding.
Kristen and Brian Festa	We need to identify subgroups and how to treat various subgroups.
Nicole	Treatment to help the symptoms of autism.. that's it

Research and availability of treatments and interventions for co-occurring conditions

Respondent	Response
Brittany, Adult with Autism	I wish there were safer drugs that I could take to better control the anxiety and ireatability that sometimes comes with autism that does not increase your risk of getting deminta, cause weight gain and make you hungrier than what is considered normal.
Nathan Call, Marcus Autism Center/Emory University	treatments for co-occurring conditions (e.g., problem behavior, sleep disturbance, elopement etc.)
Anonymous	Responding to and evaluating the effectiveness of interventions for suicide risk, factors to consider in planning interventions for mental health problems in individuals with ASD.
Anonymous	How to treat ASD with co-occuring disorders in adults.
Debra Balke	Child Neurology of SLO/Central Coast Autism Spectrum Center. Safer medications to treat co-morbid anxiety, aggression, agitation and sleep.
Anonymous	I work with high school students, and the biggest gap is getting mental health services for students with asd. I had a student whose daily living skills were at less than 1% when compared with his peers (using a standardized assessment). Dept of human services said he did not qualify for services since his IQ was in the average range. That is heart breaking! Human Services have refused or dropped many services for our families. I had one worker tell a family her case load was too big, she couldn't take another client. This is the same student that scored at -1% on daily living skills. It's very frustrating for teachers and parents to have little to NO outside support services, or to make the supports so hard to get, that parents quit trying and give up. There is a gap in services for after high school...where to go , and what to do. Most are not ready for college or to live on their own, but there is nothing out there for them.

Multiple Themes Addressed

Respondent	Response
Clarissa Kripke, MD, University of California, San Francisco	Augmentative and alternative communication strategies including letter board. Trauma (autistic adult perspectives). Long term outcomes of early intervention. Trauma informed behavioral supports. Themes Addressed: Endorsement of specialized or ASD specific treatments and interventions; Need research on long term outcomes of treatments and intervention, as well as the translation and implementation of research based treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Roseann Schaaf	medical, therapeutic (occupational therapy, speech and language therapy). What services work for specific phenotype or characteristics. Themes Addressed: Endorsement of specialized or ASD specific treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Personalized combinations and types of treatments and interventions will be the most efficacious
Kristy Barnett	Early intervention is the key for students with ASD. Therapies are vital in helping students be able to integrate better with the social, communication, and behavioral aspects of life. Educating others and using assistive technology is also the key the better understanding ASD. All the research is great. It gives you a baseline; however, will there be a cure for autism? Education policy for students with ASD is important. Themes Addressed: Need to prioritize early intervention; Positive and negative comments about searching for a “cure” rather than treatments or interventions; Research and availability of technology based or assistive technology treatments and interventions
Karen Delaney	All of the above but behavioral is number one. My 19 year old son is limited verbally, can become very aggressive and does a large amount of self-injurious behaviors. I can't find anyone in rural upstate NY to help me with behaviors. I can find psychiatrists to order medications but nothing as far as behavioral interventions...teaching me to be a better autism parent. Also teaching me how to keep myself safe when he's raging. Medication is a big as well - we are using multiple medications and it is a crap shoot whether they will work or not and then when you reach the top tier and know that there is no where else to go concerning his dose you wonder what will happen next? Education yes!yes!yes! We pulled him from public high school because they were so poorly equipped and trained - he's now attending non-integrated setting that is able to meet his needs. Inclusion is a joke in public schools as there is no effort by the general faculty to buy into the concept and there by include the special needs kiddos. This whole area is huge in our family. Themes Addressed: Current priorities are appropriate; Improve efficacy and availability on behavioral treatments and interventions
Anonymous, IEP parent Advocate	there continues to be a need for medical research and mental illness for those with ASD and those not diagnosed yet.There are little to none mental health doctor's treating ASD via Medication methods. Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees; Research and availability of treatments and interventions for co-occurring conditions
Alexandra Valentine, parent of a young man w/autism	In my case and many of us who were first diagnosed when the "wave" of autism started rising, I think behavorial,medical/pharmacologic are needed, especially with such a big majority developing seizures. Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Research and availability of treatments and interventions for co-occurring conditions
Amanda C Nicolson, California Autism Center	1. Funding for behavioral treatment. Behavioral (ABA) methodology is continually the most evidence based intervention. 2. Pharmacological interventions should receive a great deal more attention as they are promising in attenuating symptomology. 3. complementary interventions have a poor track record, weak theory and have wasted too many resources thus far. Resources should be focused on those interventions that have shown scientific efficacy (behavioral and pharmaceutical). Improve efficacy and availability on behavioral treatments and interventions; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Amy Schmid, Dartmouth Hitchcock Medical Center	I would like to see more interventions available for parents to do themselves. They want to help, but aren't sure how. Often parents will resort to misinformation on the internet (gluten free diets, etc) because we are not able to give them better suggestions. Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need to educate parents about available treatments and interventions, and to help provide these interventions
Anonymous	1 integrative interventions 2 educational 3 technology based Improve efficacy and availability of interventions in educational settings; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Arzu Forough, Washington Autism Alliance & Advocacy	I feel there needs to be higher priority given to researching treatment for older children, adolescents and adults. In addition there needs to be more explicit policy considerations that make evidence based interventions attainable for more individuals when it's medically necessary. Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used
Harriet Austin	Too many of the treatments available are time-intensive, expensive and either don't help everyone or don't help nearly enough. Parents want to know where to put their efforts, time and money. What is most likely to give the "biggest bang for the buck", but that is still very unclear. Are there markers that would tell us the best course of treatment for a given child? We are doing this with cancer now - identifying who will respond most to which treatment. We need to do the same for autism, but it will take a very long time. Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Personalized combinations and types of treatments and interventions will be the most efficacious
Anonymous,	1. Technology-based 2: Educational 3. Medical/pharmacological, with regard to mitigating co-occurring conditions Improve efficacy and availability of interventions in educational settings; Research and availability of technology based or assistive technology treatments and interventions; Research and availability of treatments and interventions for co-occurring conditions
Anonymous	Behavioural, educational, Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions
Betsy Berman	Behavioral and educational intervention Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions
Betsy Cohick, IU 13/parent of adult son with autism/ID	Please continue to fund research. I work with preschoolers with autism/ID and there seems to be less parents looking for cures in interventions that are not scientifically proven. I think this is a positive sign. Please continue funding parent education in conferences such as the Autism Conference each summer at State College, PA. Need to educate parents about available treatments and interventions, and to help provide these interventions; Current priorities are appropriate (behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions)
Blake, Hall	Behavioral, educational, and complementary/integrative interventions. Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Brett Gilleo, Big Sky Therapeutic Services, PLLC	Early intervention is key, but education around services available is important. More important is educational services and how to work with public school systems. Behavioral services is key. Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need to prioritize early intervention
Beth Rutt, parent	All of these treatments and interventions you list are critical for a team approach. Unfortunately I see them more accessible for younger children than for adults diagnosed in their 20's. Adult treatments & interventions are very difficult to find and in rural areas even more so. Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Improve coordination of treatments and interventions between services and practitioners
Ellen J Brummel	I'd say complementary /integrative interventions first, and split for behavioral and educational. Some medical/pharma, but that is so messed up that I don't know if its worth putting time and money into. Big Pharma is too powerful for it to work out for the best for the ASD children Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Nancy Cheak-Zamora, University of Missouri	Education, Health Care system intervention, interventions related to increased independence, job training, and secondary education success Improve efficacy and availability of interventions in educational settings; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Anonymous	Being that there is such a large range of abilities and limitations of people on the ASD spectrum all the topics are priorities as there is no "one right" treatment modality. the gaps are the limited carry over to the home and community environment. Especially when considering education, there should be an offer of "a bridge" to the home where staff trains the family caregiver Improve coordination of treatments and interventions between services and practitioners; Personalized combinations and types of treatments and interventions will be the most efficacious
Chris Lacey, Autism ALERT, Inc.	Much more work needs to be done to give severely autistic, non-verbal people with autism ways to communicate. The assumption that if you can't speak, you must be cognitively impaired is absolutely INCORRECT. These individuals are trapped in bodies that won't listen to their minds. Thus, these most severely affected individuals rarely get a proper education, are underestimated and ignored, and rarely get proper medical care or any of their other needs addressed or met--because they haven't been given a way to communicate. COMMUNICATION is a basic human right, and one that is being denied to them. Methods need to be studied, validated, and implemented to enable these people to participate in life and society. Let's TREAT existing autism! Also, realize that the treatment for autism will likely be dependent on their subcategory or subgroup of autism. It is unlikely that a "one size fits all" approach will work in this case. Personalized combinations and types of treatments and interventions will be the most efficacious; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	Educational and complementary/integrative interventions Improve efficacy and availability of interventions in educational settings; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Carla Meads	As a grandparent of a non-verbal grandson, it is necessary to understand the individual child/adult. Every topic is of value!! Personalized combinations and types of treatments and interventions will be the most efficacious; Current priorities are appropriate (behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions)
Anonymous	1. Poor insurance coverage 2. Poor parent training opportunities 3. Not enough providers in the mental health industry to help families get the diagnosis they need. 4. Not enough funding to access technology like iPads to help families communicate with their kids. Then, once parents know their kids have ASD, there is no standard recommendation of foods, supplements or even drugs to help kids. It seems to be a series of trial and error, which sometimes ends up disastrous. 3. Provide better research based solutions for how to help children with ASD. Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need to educate parents about available treatments and interventions, and to help provide these interventions; Research and availability of technology based or assistive technology treatments and interventions
Cory Gilden, parent	More biomedical/alternative treatments need some solid research behind them. There is much anecdotal evidence, but parents are still seen as crazy in the eyes of medical professionals for suggesting that biomedical interventions have helped or may help their child. The number one response by professionals is, "there's no research to support that." Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Autism mom, Autism Society member	We know that ABA works, yet it's funding is not guaranteed. There are very few medical/pharmacologic options for ASD individuals outside of trying antipsychotics on this population. We need meds to "manage" the symptoms of the underlying causes, not psychotropics that mask the symptoms. Find out what is causing the immune problems, and treat that. The behavior is a byproduct of a biological problem, not the problem itself. Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
William Craig	A major part of research needs to take place between parents that are planning on having children and there doctor. I think the research needs to be done identifying the genetic trait, and possible treatment, before conception occurs. Once conception occurs, I do not believe anything can be done. I had no idea my daughter had ASD because our Pediatrician told us she was simply developmentally delayed. I do not hold my Pediatrician responsible for not picking up on this, because knowing this at 1 or 6 years old would not have changed a thing. Luckily, I had very good insurance, so we were able to put her in Methodist Early Intervention at our Pediatricians insistence at 1 year old. She was with them until she was 5, and then put in a Special Needs program at her school. She was not diagnosed as ASD until she was 6. By then, she was already genetically ASD. When I was made aware of this I started doing extensive research and thought, or hoped that there was a magical cure out there somewhere. No such luck. I feel for parents that have ASD children and no insurance to help them. They are desperately in need of help and care until the child is old enough to go to a school that offers a Special Needs program. There needs to be top-notch complementary/integrative interventions made available to them. Early intervention, possibility during pregnancy is the key Once a ASD child reaches my daughters age, I do not believe the Spectrum can be "cured." She will be like this the rest of her life. Believe me, I have tried every remedy out there. At first, I thought it could have been caused by Mercury poisoning when she had her MMR shot, because I was told that mercury is used as a preservative to keep the shot effective. That idea was shot down. Then I was told to take her off any and all oatmeal products, because they can act like opium in certain children, etc. There have been more, but I do not have the space to write them. Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need to prioritize early intervention
Anonymous	Education, interventions, pharmocology. Improve efficacy and availability of interventions in educational settings; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Anonymous	Gaps in research based on the list given for me would be medical/pharmacologic. For my family, we found that behavioral, integrative, technology based and yes, even in the education system, these interventions are routinely updating themselves and change as more research comes out. They are very fluid interventions. But medical? There seems to be a huge gap here. I would love to find that suddenly, there can be a discussion between the medical doctors, the drug companies, and the therapists that help treat. There seems to be little, or it is not so easily accessible for the average Jo. Improve coordination of treatments and interventions between services and practitioners; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Anonymous	1. Educational 2. Complementary/integrative interventions Improve efficacy and availability of interventions in educational settings; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Debra Schafer, Education Navigation, LLC	Many parents know that ABA therapy is considered the "gold standard" for treatment. However, this is not the appropriate intervention for many children. There are an array of interventions, many of which have no data to support their efficacy, yet parents often pursue anything and everything in an effort to help their child succeed. Diets, oxygen chambers...many are trying to capitalize on the "fear factor" which causes parents to pursue avenues that neither benefit their child nor are within their reach. And the costs create enormous issues for parents...borrowing from family, selling their homes, bankruptcy. These situation occur because of the costs associated with treatment and interventions. And even with mandated autism reimbursement or compensation, children are languishing in a complex system that is taxing their parents financially...and mentally as well. There are also too many organizations working against each other vs. collaboratively. Different missions, different priorities, different roles. There is in-fighting within organizations themselves, taking valuable time away from what children and teens need today. It complicates further what parents are encountering as they work to secure the services, supports, and interventions their children need. Improve coordination of treatments and interventions between services and practitioners; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Personalized combinations and types of treatments and interventions will be the most efficacious
Darlene Upson	The best services we received for our daughter was the trio of speech, behavioral, and occupational therapies. This helped with social and behavioral issues. Endorsement of specialized or ASD specific treatments and interventions; Improve efficacy and availability on behavioral treatments and interventions
Chris	Behavioral and educational interventions that allow for the highest probability of effectiveness. Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions
Diane	All are important priorites. Behavioral and educational in college especially needed, Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Current priorities are appropriate (behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions)
Anonymous	As all of the subjects listed are VERY important to parents of kids with autism. I would like to bring attention to the need for better communication tools, such as using an iPad or FCC, More resources, training, and studies need to be done to bring such technology to school and therapy centers to understand these kids and give them a chance to communicate. It will open many doors for kids and adults. Research and availability of technology based or assistive technology treatments and interventions; Current priorities are appropriate (behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions)
Ms. G	Brain scans and blood work with minimal meds., while introducing active behavioral therapies will reduce symptoms. MRI scan before age 5, ongoing CBC balance monitoring, Oxygen Therapy; and Chelation Therapy introduction. Chelation and Oxygen therapies, along with diet and CBC monitoring. Improve efficacy and availability on behavioral treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Elizabeth Taylor	Outcome data from early diagnosis project by Catherine Lord could be a starting point for analysis of factors of support to format policy of interventions. The ps240 metabolic mouth swab screen that is now available and funded by Medicaid should be a required and insured screening tool before medications are prescribed for the treatment of ASD associated behaviors. The approval of ANY medications for treatment of autism related symptoms should require the contingency of first documenting the results of the patient being able to metabolize the same medication or class of medication being prescribed. Permanent neurological damage is happening to patients that upon screening after taking medications, some now specifically labeled now by the FDA for autism, are showing results that could predict overdose potential due to inability to metabolize. I am requesting that autism speaks creates an awareness campaign to inform the use of this screening tool. Also, for autism speaks to propose policy that requires all insurance companies to cover this screening. Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Anonymous	It would be great to stop looking at autism as a medical problem that requires treatment and intervention and instead as a disability that requires changes in society to facilitate inclusion. However, since you're probably going to do this research anyway, the best categories would be education and technology. I think that you need to involve autistic people as researchers to make this better. Improve efficacy and availability of interventions in educational settings; Personalized combinations and types of treatments and interventions will be the most efficacious; Research and availability of technology based or assistive technology treatments and interventions
Elizabeth O. Morejon, AOTA	behavioral, medical/pharmacology, educational & Technology Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Research and availability of technology based or assistive technology treatments and interventions
Gordon Bourland, Ph.D., BCBA-D	Much more behavioral research is needed regarding intervention procedures for addressing the needs of persons diagnosed with ASD whose behavior has been less positively responsive to than those of many others diagnosed with ASD whose behavior has largely responded positively to behavioral interventions. Related to policy, I strongly recommend a much more explicit committment to endorsing interventions that have been strongly empirically demonstrated to be effective along with greatly increased public awareness and education efforts to inform the general public regarding those evidence-based interventions. Concurrently, increased pressure should be placed on legislative and other governmental entities to support funding of such interventions by governmental agencies and insurance companies (e.g., reducing the latitude, "wiggle-room" or loopholes that insurance companies often attempt to exploit to avoid paying for evidence-based interventions- especially for persons who are adolescents or older- despite charging large premiums for such coverage). Improve efficacy and availability on behavioral treatments and interventions; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used
Anonymous	education complementary/integrative interventions including sensory integration based occupational therapy Endorsement of specialized or ASD specific treatments and interventions; Improve efficacy and availability of interventions in educational settings; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Grace Gengoux, Stanford University	Comparative effectiveness of Naturalistic Developmental Behavioral Interventions (NDBIs) and active ingredients of these treatments. Profiles of differential treatment response. Inclusive treatment models for social skills deficits. Prevention for high risk infants Improve efficacy and availability on behavioral treatments and interventions; Need to prioritize early intervention
Juergen Hahn, Rensselaer Polytechnic Institute	Complementator/intergrative interventions should be the most important priority. While behavioral/education/technology is important, they are already receiving a good amount of attention. I would rank medical/pharmacologic last as I do not find it very useful to test medicines at this stage for ASD if we do not understand the underlying reasons for the condition. Also, we need more comprehensive studies that look at how patients respond to intervention strategies. There are too many poorly designed/executed studies simply because funding was very limited as, e.g., donations were the main source of funding; the results coming out of these studies are sometimes more confusing rather than helpful. Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Mariah Hahn, Rensselaer Polytechnic Institute	1) Hands down - recognition of complementary/integrative interventions 2) medical and pharmocologic interventions I view autism as a multi-system failure. These children appear healthy, but are actually quite sick. I would never have believed this if I had not witnessed the development of autism in my own son. Autism is an illness, not a genetic abnormality like Down Syndrome. Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Heather Rocha	Behavioral, pharmacological, technological Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Research and availability of technology based or assistive technology treatments and interventions
Irena Koshuk	Complementary/integrative interventions Behavioral Medical/pharmacologic Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Jacqueline M Ward	Education and technical basis Improve efficacy and availability of interventions in educational settings; Research and availability of technology based or assistive technology treatments and interventions
Janet Terrero	Bio med docs MAPS docs needed. Treat cause not symptoms. Too many drugs are used. Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Jenna Moser	Behavioral research and adaptive techniques are needed Improve efficacy and availability on behavioral treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Jenn Carerros, Mom of a child with autism	behavioral and educational Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions
Anonymous	Early intervention has been a recent priority in autism research, and we are seeing the benefits of this. We are seeing more young children learning how to function and be successful despite their diagnosis of autism. I feel that it is important that we extend this research in interventions to adults with autism and how individuals with autism (and their families) can best be supported once they have left the school system. Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Need to prioritize early intervention
Jenny Nash	Early diagnosis and access to intense therapy including ABA. treatment plans efficacies Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need to prioritize early intervention
Jill Longenecker	behavioral complementary/integrative interventions Improve efficacy and availability on behavioral treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Anonymous	- due to increased risk in immediate and extended family members (genetic and environmental factors), interventions need to be family wide. Focussing interventions on the individual and separating educational and family/home influences is ineffective. Holistic family based interventions are needed which recognise widespread vulnerabilities. Endorsement of specialized or ASD specific treatments and interventions; Improve coordination of treatments and interventions between services and practitioners
Julie Tracy, Julie+Michael Tracy Family Foundation/Urban Autism Solutions	We believe that medication management, coupled with behavioral and relationship based approaches to the challenges young adults face as they transition to adulthood are of primary importance. Clearly over 60-70% of this population is struggling with related comorbidities in the mental health realm. There are far too few providers and psychiatrists who feel adequately trained or who will accept and treat young adults with autism and mental illness. We desperately need pathways for crises interventions and more research based practices for protocols in managing these young people and helping their families. Residential programming is driven by the level of psychiatric stability our clients demonstrate. We advocate for more comprehensive wrap around programs as well as more support for programs like the one we have begun to address some of these challanges Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Improve coordination of treatments and interventions between services and practitioners; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees
Karen Zastrow, Parent	There are so many resources for autism however pediatricians are not aware of how to treat. Early intervention is key; based on research. ABA therapy is best practice however it is not affordable to individuals that work. My experience is that I live in the state of Michigan and legislation was passed in 2012 for ABA therapy however the loop hole is that self funded insurance plans were able to opt out of autism rider. I am a full time RN as is my husband; we help people every day; no was was there to help us. We paid in excess of $800 per week; yes per week for services for my son: ABA, Speech, PT, OT, Music therapy. We made to much money to qualify and our employers were self funded insurance companies and opted out of autism rider because the legislation allowed this. The local Intermediate School District (ISD) does not support ABA therapy because they do not have the funds to provide ABA therapy - which is evidenced based practice for kids on the autism spectrum. We need legislation that all ISD programs offer ABA therapy to improve the outcomes of autistic children. Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees; Need to prioritize early intervention
Anonymous	behavioral, medical/pharmacologic, educational, complementary/integrative interventions Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Anonymous	Educational, technology-based, and behavioral Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	More research needs to focus on females, how they present and the difficulties they have in receiving a diagnosis. Far too many clinicians aren't trained in recognizing ASD in females and especially in the 30+ age range. Treatments needs to be geared to the individual and not the "one-size-fits-all" approach. Many psychiatric medications aren't suited for those on the spectrum. Far too often, clinicians over-medicate, and the patient suffers. Service and comfort animals greatly enhance the lives of those on the spectrum. Endorsement of specialized or ASD specific treatments and interventions; Personalized combinations and types of treatments and interventions will be the most efficacious
kimberly williams	educational technology based Improve efficacy and availability of interventions in educational settings; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	The most important priorities are to 1. train caregivers to cope with extreme aggression in adult males with autism, before the caregivers are killed or the autistic adults are sent to a special home for autistic persons or to the insane asylum; 2. establish sheltered workshops or day care centers for adults with autism who are unable to transition from school to the work place; 3. teach non-verbal persons with autism how to use a computerized voice system to communicate; 4. explore both drug therapy and non-drug therapy for treating highly aggressive males with autism. Having observed extremely disabled persons like the physicist Dr. Stephen William Hawking communicate through a computerized voice system, can low functioning persons with autism be taught to communicate in a similar manner? Where can we find more information about this computerized voice system? Can stem cells be used to replace whatever regions of the brain are damaged in autism? Teach non-verbal, autistic children assisted communication and the use of technological devices to communicate. Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Research and availability of technology based or assistive technology treatments and interventions
Lisa Geng, Cherab Foundation	Most important would be accurate diagnosis of all going on. Just because a child has a diagnosis of ASD doesn't tell you appropriate therapy and placement as ASD is so broad and all children are unique. ASD should be broken down into what areas are affected, speech, language, motor, social, and even things like constipation and metabolic dysfunction. Does the child have hypotonia? sensory processing disorder? apraxia? ADHD? If the intent is there to communicate, and the child plays appropriate with toys and other children at least one on one, determine if you are dealing with autism or apraxia. Carnitine levels should be tested for all children diagnosed with autism or apraxia as for some reason it's much more common in this population than in the general population for them to test borderline or low in carnitine levels. I have information about why this testing is important as well as suggested tests here http://pursuitofresearch.org/2012/07/09/carnitine-deficiency-testing-for-autism-and-apraxia/ In addition to traditional therapies more studies into benign integrative approaches such as nutritional support, music therapies, animal assisted therapies. Even video gaming may help provide improved hand eye coordination and provide a social way for kids with communication impairments to play with their peers. Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Personalized combinations and types of treatments and interventions will be the most efficacious
Loreen Booker Brown, Career Veteran in the field o ASD, AND DD populations	Reducing the gaps in research i.e. behavior intervention and parent training's outside of the school systems purse. Would go along way in supports that provide correct information about parents and students rights to a quality and equal education. Many exceptional education both low functioning and high functioning suffer from lack of resources and administrative after thought of their needs. Parents are overwhelmed by day to day challenges and have lost hope for positive resolutions for their students. Another major area of deficit is Special Olympics, and socialization opportunities during school hours and after-school has been drastically cut over the last three years as well. The use of exercise and natural remedies before medication treatments. Particularly since anti-depressants and or seizure medications provide their own risk. Improve efficacy and availability on behavioral treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Mary Leathers	I would love to see a drug that targets abnormal metabolites. Greenwood a Genetics in South Carolina has a grant that is studying this very thing. Please consider putting more money into their program. http://www.ggc.org/education/media/press-releases/770-ggc-receives-sc-ddsn-grant-for-innovative-autism-services.html. Too much research is spent on whether autism is increasing or decreasing and not on treatment targets. I would like to see an emphasis on research of the medical problems that often accompany autism, especially metabolic and immune system problems. If the medical problems can be treated with drugs or gene therapy, then we will need far less expensive behavioral therapy. Behavioral therapy helps, BUT it's just a band aid on a bigger systemic problem. Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Research and availability of treatments and interventions for co-occurring conditions
Melissa Sigel	The biggest gap to my mind is the tendency of behavior analysts to not collaborate with other disciplines (as a BCBA I can say this). Being well-versed in typical developmental progression, the principles of learning and so forth is very beneficial. Additionally, these are areas where behavior analysis can be integrated in, and it improves the effectiveness of services provided across the board. Many in the field of Behavior Analysis are beginning to make great use of technology - particularly with older children and young adults. This is helpful for communication purposes, being able to receive support from someone who cannot be in the same physical location, creating job aids to help with completion of daily tasks and so forth. Additionally, everyone has these items (iPhones, tablets, etc.), so it is not stigmatizing. Improve coordination of treatments and interventions between services and practitioners; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	School systems must have ample/adequate staff to meet the needs of students with disabilities. Currently there isn't medication for ASD but only for co-morbidities. Behavioral therapy has potential as a support vehicle for individuals with ASD. Technological advances have been important for non-verbal persons and there is a need for continued progress there. The integrations of all aspects is key to a successful plan and implementation. Tweaking the role of case managers can be a huge new field and help the parents to access all of the resources and supports available for children and family members with special needs. Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	behavioral and technology-based Improve efficacy and availability on behavioral treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	Better coordination between physicians and other providers. Whenever I take my child for a well-child visit, I find that I am the one giving the pediatrician info on the latest therapies, technology tools, research, etc. Improve coordination of treatments and interventions between services and practitioners; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees
Anonymous	Behavioral, Educational, and complementary/integrative interventions. 2. Research-to-Practice; Applicable interventions that can be used by caregivers Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on long term outcomes of treatments and intervention, as well as the translation and implementation of research based treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need to educate parents about available treatments and interventions, and to help provide these interventions
Anonymous	Educational and complementary/integrative interventions Improve efficacy and availability of interventions in educational settings; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Michele Tryon , Healthcare provider	Evidence based behavioral interventions need to be available to ALL children on the spectrum. With a need to make the services affordable and accessable for families of ALL demographics. Complementary, child centered and play modalities for young children need to be advanced and supported. Programs that support parent child interaction and provide education to parents should be priority. Improve efficacy and availability on behavioral treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need to educate parents about available treatments and interventions, and to help provide these interventions
Anonymous	Behavioral treatment, integrative interventions, technology-based and educational interventions. Services should be covered by insurance companies. Federal policy should require insurance companies to cover treatment for Autism. Policy issues should focus on treatment for children. There is research to support treatment, but insurance companies are not paying for the treatments. Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Missy Wilson, Easterseals	educational technology based integrative interventions Improve efficacy and availability of interventions in educational settings; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Toni Silveira, mother & educator	There needs to be more funding for school/teacher training and professional development. ASD education is not just special education as our students can be mainstreamed and can take every class offered. High functioning kids tend to be exited off their IEP's too early and parents have to constantly fight to keep their IEP when kids show success. There needs to be more money, study and training on sensory issues and supports as this is a major factor in our daily lives. The technology is working itself out and has been very helpful. The behaviors are baffling at times and parents and teachers need strategies to help children, teens and adults to better understand these challenges. Endorsement of specialized or ASD specific treatments and interventions; Improve efficacy and availability of interventions in educational settings; Research and availability of technology based or assistive technology treatments and interventions
Monica, Monica L. Kounter	Complementary/integrative interventions need to be accepted and paid for by insurance and Medicaid. There needs to be acceptance of certain 'alternative" therapies that, through anecdotal evidence and small studies. have been proven effective, such as listening therapy, and vision therapy. Insurance needs to pay for those, as does Medicaid. Too often parents have to pay for these out of pocket when standard therapies have not worked. I believe it is imperative to work on the cognitive and behavioral issues of those on the spectrum, especially with regards to anxiety and anger issues. Those who are high-functioning would be more successful if they understood why they are experiencing these feelings and how to control them. Improve efficacy and availability on behavioral treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Anonymous	research into early intervention has been excellent, however that information is not being utilized to inform early intervention programs and in may cases children who have received a diagnosis often have to wait for good intensive early intervention until age 4 or later when the research suggest intensive (25 hours a week) beginning by age 2 1/2. How do we get research to drive education and intervention programs Need research on long term outcomes of treatments and intervention, as well as the translation and implementation of research based treatments and interventions; Need to prioritize early intervention
Christine Reel Brander	more access to behavioral services such as ABA are needed technology as a tool for activities of daily living Improve efficacy and availability on behavioral treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Julie Curry, son with autism, 21 yrs old	Proper treatment plan, behavioral therapy, medications. treat the symptoms. Every person or patient presents with different symptoms of autism---broad spectrum. Now he is on meds to control his behaviors, we have tried many medications. Of course I wonder what are all of these meds doing to his brain now, what will the long term side effects be. Labs are performed to check levels, liver etc. What does his future hold? I deal with this on a daily basis. Needs to be more assistance readily available to help. Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Personalized combinations and types of treatments and interventions will be the most efficacious
Megan E Sova-Tower	The most important of these being: behavioral, educational, technological, and complementary/integrative interventions-we must also focus on the education of the public in the understanding and supporting those identified with ASD. Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Shimika	There should be some kind of guide book detailing medicine's and their effects and what could be best for our child instead of just relying on our doctor. There should be a site we can go to educate ourselves as to what is happening with our child. There should be things we can do when the child is younger to intervene and help make their life easier. Need to educate parents about available treatments and interventions, and to help provide these interventions; Need to prioritize early intervention
Marty Weiner	This is where we need the money and time to go. Behavioral, educational, occupational therapy (touch, sounds, etc); technology---The people are here, whether they want to be or not, and the world needs to find a way to integrate them so that they can contribute to the world, not so that they become drains on society's resources-- and education for any public or private institution, too! Endorsement of specialized or ASD specific treatments and interventions; Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions
Nathaniel Geyer, MS	Research on other treatment including Acupuncture, ABA, chiropracture, and other treatment. Improve efficacy and availability on behavioral treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Nichole	There is a major gap of information coming from the doctor/pediatrician to the parent, and information going to the teachers. Any baby born from a difficult pregnancy, delivery, or has family members with similar diagnoses, information regarding ASD signs, symptoms, and characteristics should go home with the family from the hospital. The pediatricians need to be better informed of the diagnosis and what services are available in the are so when the child is diagnosed the parents have a starting point. Every teacher, regardless of specialty, should be required to have an ASD certificate along with EVERY degree, regardless if the teacher is grandfathered in and/or has tenure. 1:65 is a high ratio for teachers to be unaware of behavior/sensory/social issues with ASD. Every ASD diagnosis should have a positive behavior plan and IEP before the beginning of the school year every year. Communities must develop marketing plans to encourage providers to the area for all services. If there is a service that has marked good results, get that service in for a peer review and have it added to the Medicaid approved list. Parenting classes for ASD parents and family members. Supervised social skills training should be available to all ASD without costing parents out-of-pocket expenses and should be part of the ASD teaching certificate. Improve coordination of treatments and interventions between services and practitioners; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees; Need to educate parents about available treatments and interventions, and to help provide these interventions
Noel Arring, DNP, RN, OCN	All of these are important but I believe there is a critical need to better understand integrative interventions as many are pursuing these. Also I would add the there is a critical need to better understand educational interventions for our HFA children and those who are also gifted. Improve efficacy and availability of interventions in educational settings; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Anonymous	Behavioral research is instrumental for both the child, the parents and teachers. With my own experience parents are turning away from medications treating ADD/ADHD due to side effects and unknown long term affects. There needs to be an alternative to the current meds. When the child did not take the meds, behavior is the greatest concern and much time us needed to develop an effective FBA-BIP. There is a wide range of aspects of ASD of which each child deserves the best interventions and treatment. Along with the treatment should be a team of scientists, doctors, psychologists, teachers and parents to work together for each child's needs. Improve coordination of treatments and interventions between services and practitioners; Improve efficacy and availability on behavioral treatments and interventions; Personalized combinations and types of treatments and interventions will be the most efficacious
ODESSA	What Doctors know. Education and new technology. Improve efficacy and availability of interventions in educational settings; Research and availability of technology based or assistive technology treatments and interventions
Parvati	Interventions are a very important area which deserves more attention and funding. It is very important to have medications for ASD kids that have been tested in RCTs, since many doctors medicate children with a trial and error approach and medications can have serious side effects. The development of educational and technology based solutions is also critical, not just for preschool and elementary students, but more needs to be done for middle and high school students. There is a lack of new approaches and solutions for older kids. Improve efficacy and availability of interventions in educational settings; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	behavioral and educational Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions
Anonymous	We need more research on the benefits and risk of - probiotics - vit D - breast feeding compare business as usual to the outcomes those of us in integrative medicine are having. Long term studies looking at autism, ASD ADHD etc are needed Need research on long term outcomes of treatments and intervention, as well as the translation and implementation of research based treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Penny Githens	I would like to see more complementary/integrative interventions. I would also like to see more parent-training, especially training which is individualized. Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need to educate parents about available treatments and interventions, and to help provide these interventions; Personalized combinations and types of treatments and interventions will be the most efficacious
Patty Hooper	I think the largest gaps are in treatment of autism symptoms. We need more information about sensory issues, social skills deficits, behavior and aggression problems, as well as health and feeding issues and how to treat them. I would like more research done on valid, appropriate, successful treatments. I want more research done on educational interventions, accommodations and modifications that can be made. I would like to know which therapies are effective (music therapy, neurofeedback, OT, PT, ST, etc.) I would like more information about dietary interventions as well. Improve efficacy and availability of interventions in educational settings; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Pamela Oguagha, Parent of young adult with autism	There is so much that has improved but so much that is needed! Getting a diagnosis is hard because not every place can accomonidate you. And for the Good ones that can, there is often a LONG waiting list/time. But integrative interventions are important. Including parents/caregivers in this is important. Helping them to understand what is going on and what/how they can actively help participate in the care of their loved one is important because this is a LIFE LONG JOURNEY. Supports for the family are as important as supports for the individual. Medical/pharmacologic interventions are important, but so are holistic interventions. Having technology included is VERY important for the individual impacted by autism to be successful. And helping the parent/caregivers understand that continuing to have evaluations will help them understand just how their loved one is progressing/growing inspite of having austim. Autism should NOT be considered a death sentence. Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need to educate parents about available treatments and interventions, and to help provide these interventions
Anonymous	Behavior and educational Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions
Robert Daniels, Children's Clinic, LLC	1. Dissemination of evidence based practice to Early Intervention and Educational providers. 2. Elimination of ineffective and harmful treatments by stricter regulations (e.g., chelation, toxic levels of supplements, MD's working outside of their scope of practice, labs and other clinicians exploiting vulnerable and desperate populations). 2. Despite the existence of excellent services, dissemination of these treatments to community settings is quite poor, even to affluent communities, resulting in far less than adequate outcomes for anyone not affiliated with a nation-leading institution. Co-occurring conditions in ASD result in confusion regarding priorities of focus, and treatment by allied health professionals (i.e., BCBA's who do not have adequate breadth of knowledge to address the comorbid conditions of anxiety, learning disabilities, and mood disorders, for example). Dissemination of evidence based practice for ASD to mental and behavioral health clinicians would be efficient (as their training typically addresses the comorbid conditions adequately already). In addition, the dissemination of evidence based practice for comorbid conditions to those teachers and BCBAs whose primary area of specialty is limited to ASD is necessary. Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees; Need research on long term outcomes of treatments and intervention, as well as the translation and implementation of research based treatments and interventions; Need to prioritize early intervention
Renee Portnell	educational, technology for the child/adult, intervention starting early would be the best I believe in my heart. Meds I believe is given too much, teach child/ adult how to deal with issues rather than dope them up on meds and they don't learn how to deal with what's around them, calming down or how to change the problem. Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Improve efficacy and availability of interventions in educational settings; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	Behavioral services and treatments for teens in puberty and adults is lacking. Trained doctors and behaviorists with experience and expertise are needed. A better understanding of what medications are helpful and how to avoid unnecessary medication is needed. How to train schools and group homes to work with this population is needed. Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Pamela Blankenship, Parent/Grandparent of children with ASD	Emphasis should be on : sensory integration activities from a very young age; identification of appropriate communication techniques for each individual; Endorsement of specialized or ASD specific treatments and interventions; Personalized combinations and types of treatments and interventions will be the most efficacious
Kristi Stockdale, Parent	As my son has approached 18 yrs of age, I've found that our insurance company is increasingly resistant to paying for autism-related treatment. The stronger the research supporting specific early intervention programs, the better in terms of supporting the need to provide such programs to individuals with autism; identifying what age such interventions are effective, and including teens and adults in intervention studies is essential. I also find that there are tremendous gaps in the provision of services, and often no clear direction about who is responsible for the funding of indicated services: schools, health insurance, parents, government programs? As a policy question, I believe this is one of the larger questions that needs to be answered: how does one best coordinate care and the funding of best-practice interventions, so as to make the greatest difference to the largest number of individuals with autism? The current models are often not working, and at best reward those parents who already have the most resources/initiative. I've been able to provide individualized and fairly extensive services for our son over the past 15 years, while watching the majority of parents I know with a child on the AS struggle to provide even basic interventions. Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Improve coordination of treatments and interventions between services and practitioners; Need to prioritize early intervention
Anonymous	There is a plethora of "treatments" for ASD, but very few with clinical evidence demonstrating their effectiveness. Parents are preyed upon to subscribe to costly and ineffective approaches. Insurance companies continue to recommend public school for kid with Autism "because that is their responsibility."Our schools need to be mandated AND funded to provide evidence based practices or insurance providers need to be prevented from denying coverage due to school age. We can't continue to lose coverage for our children due to their age or the school's lack of participation in treatment only to see them re-enter a school district that is financially unable to provide them with the services they need. No family should have to hire a lawyer to receive care for their children, but this is becoming the new trend. We need more research for pharmacologic advancements for ASD. Technology for communication and social skills has advanced in the past few years, but the cost is too large for our families. We need policies mandating insurance to cover these costs or we need to provide incentives to these technology companies to lower their prices. Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Anonymous	behavioral early intervention and accessible treatment options Improve efficacy and availability on behavioral treatments and interventions; Need to prioritize early intervention
Steven Graff, Ph.D., Tri-Counties Regional Center, Oxnard CA	stop funding CAM! it is garbage. need better social skills therapies. Need to support high functioning ASD who want to work/go to college or vocational training. Too much emphasis on ABA without parent participation; need to train the parents, not just the kids. Improve efficacy and availability on behavioral treatments and interventions; Need to educate parents about available treatments and interventions, and to help provide these interventions
Anonymous	What is being done/recommended for all the kids and adults who had various abnormal metabolic/gi/immunologic/neurologic findings? What should be done? There doesn't appear to be regular and comprehensive updates and recommendations as to what follow-up would be beneficial from a treatment and or research standpoint. Have these kids with abnormal findings been abandoned? Where do we bring them? Is anyone doing research on them? How can technology be leveraged better in order to enable individuals to have a more meaningful experience n the community. Need research on long term outcomes of treatments and intervention, as well as the translation and implementation of research based treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	I would like to see more done in complementary and integrative interventions. I believe we could explore more in this area that could benefit more than just people with ASD. Complementary interventions could have a broad impact at home, in the community and at schools if further pursued. Behavioral therapy is one that could benefit all families because it is one of the most draining aspects of providing quality care to a loved one. Improve efficacy and availability on behavioral treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Simon Huebner	Education is key. We need mentors and leaders first instead of pumping little kids and adolescents full of prescription drugs at the first sign of a problem. Technology can be a good supplement to learning but too much of it will hypnotize little kids. Improve efficacy and availability of interventions in educational settings; Research and availability of technology based or assistive technology treatments and interventions
stanley scher, grandparent	. BEHAVIORAL: early childhood checklists done by parents in consultation with professionals will enhance intervention stategies. .. MEDICAL/PHARMACOLOGIC: determining that there is a chemical base for aberrant behavioral patterns in a particular child may indicate a need for chemical intervention. EDUCATIONAL, TECHNOLOGICAL-BASED: using ABA tacticss with computer technology may provide a maximizing of academics proficiency. A child essentially has until the end of preteen years to gain maximum academic skills. COMPLEMENTARY/INTEGRATIVE INTERVENTIONS: media presentations formatted to challenge cognitive responses can go a long way to improve verbally appropriate communication responses. Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	Behavioral, medical, educational Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Anonymous	I do not feel like I or anyone my son has seen understands what is causing many of his behaviors and knowing where to go or who to see is daunting and a lot of times there seems to be no one available. I feel like with the proper insight he could be helped so much but gaining that knowledge seems impossible. Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees; Need to educate parents about available treatments and interventions, and to help provide these interventions
[Minor/Dependent Name Redacted]'s Mom, Parent	Behavioral - who pays? It is a constant battle to acquire and maintain services. Medical/Pharmacologic - research should include supplements, dietary interventions, things that benefit but are non-invasive educational - again, $$! educational services are poorly funded, and it seems that the budget gets cut every year. technology-based - priorities are communication and socialization complementary/integrative interventions - should be taken seriously, researched and recommended, covered by insurance. Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	OTs, SLPs, PTs, and ABA therapists are in short supply and move on quickly. There needs to be more consistency of services for kids before these therapists burn out and move on. Technology is simply that. It is not a cure for autism. Doctors need to be able to refer parents for ABA training themselves. Parents do not have the skills or understanding to address the needs of profoundly impaired children. Doctors are too quick to jump to mass doses of medications, which frequently make behaviors worse and cause obesity. Parents need direct 1:1 training on how to deal with severe behaviors, and 911 should not be the first "go to" when a child has lost control. Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees; Need to educate parents about available treatments and interventions, and to help provide these interventions
Teresa McCroskey, parent	My biggest issue here is that there is not enough information given on behavior, medication, and education of Autistic people, and what technology that is out there for Autistic's. I know there are Autistic's that are great with electronics and seems to enjoy them. I know a child that could not read, but was able to be taught to work a computer and find the files and print from a computer at 1 1/2 years old, and after he was diagnosed with Autism and ADHD,,and placed on medication, he was able to learn to read and is able to do well in school. He still has to rely on Speech, Occupational therapy, and Title I and integration classrooms, but he is doing well. Medication and pharmacologic research as well as behavorial, educational and techonology-based research is needed, but I also feel that children with Autism should be able to have a computer or IPad to help them in school if they are not able to write well or in full sentences and have a voice activated program to help them with their work. It is very difficult and frustrating for them to write if they have fine motor skill issues and or memory recall issues, but they may be able to say what they are thinking and accomplish the task and succeed. Need to educate parents about available treatments and interventions, and to help provide these interventions; Research and availability of technology based or assistive technology treatments and interventions
Lesly, Parent	Compensate all of the vaccine injured children. Make alernative treatments available. STOP CAUSING IT - STOP THE VACCINE MADNESS Biomedical intervention. Creative therapies. Respite care. Sadly there is much more accurate information from other parents than doctors. Listen to the parents! Biomedical doctors are helpful in understanding the process and also in healing many of the underlying physical issues that make up the dx of autism Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need to educate parents about available treatments and interventions, and to help provide these interventions
MaryAnn Vericella , Mother	We need better assessments for behavior stemming from autism. It needs to be easier to get proper medications to our children even if they are 4/5 years old Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Personalized combinations and types of treatments and interventions will be the most efficacious
gabriele lawrence	Integrative interventions Bio med interventions Gut-Brain-Speech-Behavior connections Bio med supplements and interventions that increase social, language and reduce anxiety, OCD and negative behaviors Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Zoe Goodblanket, Grandparent	Educational, behavioral, medical/pharmacological.Understanding and applying research based education techniques is critical as early as possible. Behavioral interventions are expensive yet so important for families to better understand how to work with their child. Sometimes, other conditions affect the child. For our family member, having been traumatized at an early age certain things are triggers for PTSD moments. High anxiety that impaired sleep, ADHD behaviors have been helped by meds. In addition this family member suffers from seizures and a metabolic disorder. Sometimes we are baffled by what could be the underlying cause for certain behaviors. Is it ASD, something triggered by early traumatization or salt /water imbalance. For several years we had to travel several hundred miles to an Indian Health Service clinic for treatment of emotional behavioral issues that we could not pay for. Treatment was free and culturally sensitive. Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Personalized combinations and types of treatments and interventions will be the most efficacious
Cheryl	I would say that the most important aspect is the socialization in the school setting. The children are required to be in school for 6 + hours but nothing is being done to help them. My son's school has refused to allow our aide that we pay to help him in school. Instead they gave him an aide that is not affective and the school refuses to do anything. Why are thousands of dollars being spent on attorneys to fight against the parents and children that have needs. The money would be better spent on teachers and training them to help the children. I have high hopes for my children. If they acquire the right socialization skills they have a lot of skills to help the world. Improve efficacy and availability on behavioral treatments and interventions; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees
Dr. Cheryl Mendelsohn, private practice and Cause Cafe	Scientifically based interventions must be researched. ABA treatment is beneficial, but not the be-all and end-all of behavioral interventions. As children get older the treatment options (and services) dwindle. ASD adults are often omitted from research and there are few research based interventions that are known to treat them. In addition, more needs to be known about pharmacological treatments, interactions between medications, and what works for what type of autism. Themes Addressed: Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Improve efficacy and availability on behavioral treatments and interventions; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Parent	I think behavioral and educational interventions are most needed. Parents need to know how to manage childen with asd. It is definitely not intuitive. Also without any intervention kids with asd develop many stereotypical and odd and offputting behaviors that harm if not nullify their chances at a healthy social or romantic life. The tendency is to infantalize these teens but they grow physically and hormonally at the same rate. Educationally they are often punished or disciplined for behaviors that result from a one size fits all approach to student behavior. They also tune out what is boring and need extra concrete motivation to stay invested in school. The rabid testing mentality only exacerbates this problem. Many parents choose private schools, virtual schools or homeschooling at great personal expense to allay these concerns. But issues of seclusion and social rejection remain. The schools need to figure out how topractice inclusion properly so it benefits all students but especially those with disabilities, even if students with disabilities are unable to jump the academic hurdles placed in their path. Themes Addressed: Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need to educate parents about available treatments and interventions, and to help provide these interventions
Anonymous	Currently, it is known that behavioral treatments have the most positive outcome on those with ASD. While medical treatments may be able to assist with some of the other medical/genetic issues those with ASD usually have, there has been no evidence to suggest that medications have a positive impact on the core symptoms of ASD. Without a holistic approach, educational, behavioral, and medical treatment plan, many of the core symptoms of ASD will have possible negative impact on the quality of life for these individuals. It should be recognized that no one treatment approach is the best and that each individual on the spectrum presents with a unique profile of strengths and deficits that must be addressed on a case-by-case basis. There is no "one treatment fits all" approach to ASD and policies should allow for the flexibility of treatment options in order to meet the individual and unique needs of individuals on the Autism spectrum in order to promote lifelong independence and quality of life. Themes Addressed: Improve coordination of treatments and interventions between services and practitioners; Personalized combinations and types of treatments and interventions will be the most efficacious
Anonymous	The impact of sensory integration therapies. The impact of adult/teacher/caregiver type of response to behavior (punitive, controlling, supportive, empathetic) and the impact on child's self esteem/success of behavior modification. How supporting behavioral change through connection and child's interests impacts outcomes. Identifying best practices for schools to foster acceptance and inclusion of students with autism. Studies of how and why sensory integration therapy helps children and adults with autism to function better. Studies of the impact of parental training in behavioral therapies focused on connection (RDI, Floortime) versus compliance (ABA).Themes Addressed: Endorsement of specialized or ASD specific treatments and interventions; Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need to educate parents about available treatments and interventions, and to help provide these interventions
Anonymous	There needs to be more research AND programs to help an autistic child learn how to be more social. The only programs currently available are for those who are severely disabled. My son does not fall into the severely disabled category. He needs help, none the less.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Personalized combinations and types of treatments and interventions will be the most efficacious
Cheryl Eng	There needs to be more use of alternate types of treatments, music, art, and theater as well as animal therapies are so helpful at helping autistic people make connections, especially in language and in picking up social cues. Integrating these types of therapies into classroom use would be such a help in making connections to learning.Themes Addressed: Endorsement of specialized or ASD specific treatments and interventions; Improve coordination of treatments and interventions between services and practitioners
Crystal Reuter	Behavioral therapy and then educational. Themes Addressed: Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions
Donna Gruber	There needs to be a govt watchdog in this regard with testing of these treatments to protect parents and their funds with published results. Autism is so overwhelming and terrifying, that parents try to do anything to help their affected children no matter how much it costs...not thinking about autism can't be cured and they may need that money for a special needs trust later to help sustain their future adult child with autism.Themes Addressed: Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need to educate parents about available treatments and interventions, and to help provide these interventions
Anonymous	Interventions need to be assessed for the individual and not recommended as a cookie cutter remedy. The biggest gap lies within complementary/integrative interventions. Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Personalized combinations and types of treatments and interventions will be the most efficacious
Geovana	Educational, behavioral, medical/pharmacological Themes Addressed: Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Anonymous	I think the most important treatments and interventions are ones that focus on helping autistic people navigate a world that was built for non-autistic people, rather than interventions that force us to act like neurotypical people. For example, it would be helpful to me if I were offered services that helped me deal with sensory overload, taught me skills to help with executive functioning, or taught me social skills. I may need support or be unable to live on my own during my life; if that's the case, services that help with parts of independent living like laundry, grocery shopping, cooking, and cleaning would be incredibly helpful. Conversely, therapies like ABA which focus on making autistics "indistinguishable from our peers" are harmful. I haven't had to deal with that myself, but plenty of autistics are forced into many hours a week of ABA (think 20-40 hours, basically a job). These therapies don't help autistics, but rather force us to look more "normal" at the cost of our mental health.Themes Addressed: Endorsement of specialized or ASD specific treatments and interventions; Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD
Anonymous	When in doubt see a Speech Therapist, Occupational Therapist, developmental specialist, psychologist or Physical Therapist. They can help with deciphering the deficits a child has to aid in diagnosis by developmental specialist. Really funding for therapies at an early age, education structure needs to be looked at again, and research to continue on finding cause and ways to decrease the numbers.Themes Addressed: Improve coordination of treatments and interventions between services and practitioners; Improve efficacy and availability of interventions in educational settings; Need to prioritize early intervention
Brooke Potthast	The emphasis on early behavioral interventions needs to end and the focus should be on sensory motor movement differences. Many individuals with non or low verbal autism experience deep frustration because they are thinking and understanding language but have praxis problems that prevent them from speaking. They are literally trapped by their non performing bodies and the result is negative behavior. They need therapy to help them learn to point to spell and eventually type. Communication technology is not the answer, giving them body control and support should come first and technology second. Focus on diet, nutrition and functional medicine analysis of vitamin, mineral imbalances is so important for the treatment of ASD. We need studies on biomedical treatments that show promise in treating symptoms of inflammation, immune system dysfunction, mitochondrial issues and GI problems in people with ASD diagnosis. What is causing brain and gut inflammation in young children? Microbiome research is needed. Fecal transplants and probiotics as treatment for ASD?Themes Addressed: Endorsement of specialized or ASD specific treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Anonymous	behavioral educational again in that orderThemes Addressed: Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions
Anonymous	Two-way communication is key. Intervention. Intervention. Timely behavioral services intervention.Themes Addressed: Improve coordination of treatments and interventions between services and practitioners; Improve efficacy and availability on behavioral treatments and interventions
Jenny Keesee	Too many treatments are not researched to show effectiveness yet claim to be so. Educationally more education for school districts on higher functioning kids and the issues they face. Also for the Part C, greater education in finding children with ASD and providing INTENSE early intervention. Funding for full day preschool for children with ASD. Parents don't have access to treatment. 20 visits of speech per year does nothing for a nonverbal child. Let alone ABA. ABA is the only treatment with scientific studies showing it's effectiveness. Other "treatments" need to either do their own scientific study or quit claiming they're effective.Themes Addressed: Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need to prioritize early intervention
Anonymous	Yes!! Continue to research medications for effectiveness in controlling co-occurring conditions and disorders. However, continued research on complementary and alternative medicine is crucial. Many people are moving away from conventional medicine toward homeopathic methods. Studies must explore safe use of these methods with the unique physiopathology of ASD. Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Research and availability of treatments and interventions for co-occurring conditions
Katherine Hall, Autism Society of Northern Virginia	There needs to be better pharmaceutical options for treating anxiety other than sedatives. Also, more funding towards the development of augmented and alternative communication for non-verbal people.Themes Addressed: Research and availability of technology based or assistive technology treatments and interventions; Research and availability of treatments and interventions for co-occurring conditions
Kira Parris-Moore , Parent of an autistic child	I also wonder if there is any electrical brain stimulation or interventions that can stimulate speech in nonverbal autistic children. I want more research done on what interventions are best used in what stages of development for children ( toddlers, adolescents).Themes Addressed: Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Personalized combinations and types of treatments and interventions will be the most efficacious; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	1. Education 2. Behavioral 3. Complementary/ integrative interventions Themes Addressed: Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Laura Cichoracki, parent of a teenager with autism	Again, more ABA resources need to be made available. They should be commonplace, mandatory. I also think that a LOT more services need to be offered for teenagers with regard to future job training and/or continuing education. Technology is a big part of that, and a huge pool of possible income for persons with autism. As it stands now, my son can get a diploma and then be dropped like a hot potato from the school district's special education services, or he can get a certificate of completion (basically an attendance award, holding no educational value whatsoever) and receive "young adult" services until the day before he turns 22. Neither of these programs are right for him and for a lot of his peers. He will need help past high school, but he is capable of quite a bit more than what the district is willing to provide. The young adult program in our area is a joke, in my humble opinion. The students do laundry and clean the cafeteria after middle school lunch. My son has been doing that for two years now, and can prepare his own meals. Again, I cannot repeat enough that each person with autism needs a treatment plan specific to that person, and not the rubric. My son is defying the outdated notion that ASD students are either high-functioning and need minimal support or are low-functioning, requiring a lot of support and generally not expected to learn the same academics as peers. Treatments and interventions would be my highest priority. Treatment plans for children with autism should be based solely on what that individual child requires, not what some rubric dictates. Themes Addressed: Personalized combinations and types of treatments and interventions will be the most efficacious; Current priorities are appropriate (behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions)
Lydia Schuck, PhD, Parent of young adult with autism, community living services provider, education researcher	Please fund research into strategies that are effective with families of adults with autism. Please develop model projects for parents training other parents to support community inclusion among adults with autism.Themes Addressed: Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Need to educate parents about available treatments and interventions, and to help provide these interventions
Lisa Settles, Tulane University School of Medicine--Tulane Center for Autism and Related Disorders	The gaps in this area are gaping holes. There is only one evidence based therapy that insurance will cover and even with that , only a small percentage demonstrate positive change. Schools need to be utilizing evidenced based methods of instruction and not trying to fit every child into the neat boxes of an IEP. The two biggest bottlenecks are receiving a diagnosis and establishing treatment. We need more people trained, which means there needs to be more funding to train them.Themes Addressed: Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees
Linda Tortorelli	We have a lot of research on behavioral - we always need more on medical/pharmacologic as well as educational - especially with post-secondary education.Themes Addressed: Improve efficacy and availability of interventions in educational settings; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Anonymous	Behavioral, educational, complementary interventionsThemes Addressed: Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
MaryAnn Pranke, Parent of Child with Autism	behavioral and educational: lots of information for children but not much for teens, social and behavioral issues and effective strategies for integration/inclusion for teens.Themes Addressed: Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions
Vicki Martin, Lakes Area Autism Network, Warsaw, IN	Educational because of lack of funds, & complementary/integrative interventions.Themes Addressed: Improve efficacy and availability of interventions in educational settings; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Megan Galvin	Behavioral research Educational interventionsThemes Addressed: Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions
Anonymous	1. Identifying subgroups and characteristics of subgroups may lead to identifying appropriate interventions. 2. Making available and maintaining access to efficacy studies of various interventions for provider and consumer. Currently, parents are often left to use a shotgun approach to choosing interventions. This can result in families being led astray by "snake oil salesmen." 3. Ensure adequate funding and availability for alternative/augmentative communication evaluations by certified speech-language pathologists. 4. Ensure adequate funding and availability for access to alternative/augmentative communication systems. 5. Provide appropriate funding to ensure adequate educational support in public schools.Themes Addressed: Improve efficacy and availability of interventions in educational settings; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need to educate parents about available treatments and interventions, and to help provide these interventions; Personalized combinations and types of treatments and interventions will be the most efficacious; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	Social drives drive language production. Lack of social drive weakens or diminishes a perceived need for language. Increase motivations to produce language for other reasons as well as emphasizing needs for social uses. Education of family and school staff into all aspects of ASD, beyond basics and also emphasis on mutual strategies teams can focus on for improvements. Evidence based approaches may be limited to the positive results only in areas found from research of specific aspects and not cover the total needs of individuals with ASD. Some other approaches that are also effective and encouraging of independence are not easily able to fall under the evidence based requirements, but may be beneficial to improving lives of individuals with ASD.Themes Addressed: Improve coordination of treatments and interventions between services and practitioners; Improve efficacy and availability on behavioral treatments and interventions; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need to educate parents about available treatments and interventions, and to help provide these interventions; Personalized combinations and types of treatments and interventions will be the most efficacious
Anonymous	Need more effective treatment for sensory issues. Many people with autism are more sensitive to medications than other people. We need to find out why and what the consequences are, as well as educate medical professionals on this issue.Themes Addressed: Endorsement of specialized or ASD specific treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Paul Raich	I think the biggest gaps are educational and complementary interventions. Never in an IEP do we talk about solutions being the best interest of the child. We talk about appropriate placement. There should be more training in best practice for interventions. There are so many new people to the field who have to figure things out as they go. There should research and data to guide the way.Themes Addressed: Improve efficacy and availability of interventions in educational settings; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions
Anonymous	MOre concrete information should be available for parents who are currently reading online and are very confused by what is out there. Behavioral interventions are often hard to obtain due to long wait lists and insurance regulations. Priorities should include more services and research for educational interventions as well as behavioral, medical and complementary services. Educational services need to be expandedThemes Addressed: Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need to educate parents about available treatments and interventions, and to help provide these interventions
Rachael, Educator/Parent	Early intervention services are essential for children with autism. Many children have developmental delays that need to be addressed immediately. As children grow it is essential that they receive behavioral and social therapy. The reason there is such a high unemployment rate for adults with autism is due to the poor social interaction they have in the work place. This leads to higher anxiety and depression rates. Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Need to prioritize early intervention
Anonymous	Technology based. Many children with autism are non verbal more needs to be done to help with the use of technology. Third, research in biomed. Many families are getting positive results. More research should be done to make it available to more familiesThemes Addressed: Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Research and availability of technology based or assistive technology treatments and interventions
Suzanna Dillon	Educational. Gross motor delays as a symptom and the provision of evidence-based early intervention, to include adapted physical education services (as identified by IDEA) as a part of those early intervention services.Themes Addressed: Improve efficacy and availability of interventions in educational settings; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need to prioritize early intervention
Sarah Hurwitz, Indiana University	development of new treatments evidence-based behavioral and educational interventions. early interventionThemes Addressed: Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need to prioritize early intervention
Anonymous	For autism in kids, number on is behavioral and educational interventions by appropriatelly trained special education teachers. It is unfortunate that many have the degree but yet down't know how to develop a plan and goals to address social and emotional needs kids on teh spectrum have. Even if child is educated appropriately in academics they might never become independent unless they learn social behaviors. These behaviors are hard to teach but broken down and practiced regularly even kids and adults with autism can become members of society. Still training is lacking for the teachers that do work with this population.Themes Addressed: Improve efficacy and availability of interventions in educational settings; Improve efficacy and availability on behavioral treatments and interventions; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees
Anonymous	All of the above researches are my priorities! But especially more education, awareness & understanding of ASD for not only the families & parents themselves, but any professional or lay person that is involved with children. ASD is complicated because it displays itself differently for each individual! Early screening & intervention (2 or younger) is vital... Treatment should be more wholistic not just physical! Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need to prioritize early intervention; Current priorities are appropriate (behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions)
Jane O'Grady	Early intervention are typically great, school age children interventions are okay(depending on the school district), by high school you feel as if you are on your own. There are too many psychiatrists who throw medication at behavioral issues that require intensive therapy: counseling, ABA, PBS etc...I don't feel enough technological services are implemented for special education students (I have lived in 7 states due to military relocations). Obtaining a guardianship/conservatorship for age 18 is too difficult and too expensive and there needs to be more resources, it should also be national as if you move to another state you have to start the process all over again.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need to prioritize early intervention; Improve efficacy and availability of interventions in educational settings; Research and availability of technology based or assistive technology treatments and interventions;
Anonymous	I think it would be so great to know about different behavioral interventions to help young children especially adapt to their shirt comings due to diagnosis. Also some medicinal options to improve things such as social anxietyThemes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Amber L Perry, ASAN	Behavioral or cognitive therapy is one method. Medications can be prescribed carefully be an MD or Psychiatrist, but no nurse practitioners. It is my experience that with practitioners, they all do things differently, which makes thing complicated for both families and afflicted individuals. Upon entering school, Individualized Support (ISP) and Education (IEP) Plans should be put in place. Schools should be properly educated to avoid the merciful bullying an autistic child can endure. iPads, other tablets and devices are available to help some nonverbal individuals better communicate. We don't "treat" autism or "cure" it. It is not a disease.Themes Addressed: ;;Improve efficacy and availability on behavioral treatments and interventions;Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Improve efficacy and availability of interventions in educational settings; Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees;Research and availability of technology based or assistive technology treatments and interventions
Anonymous	variations in services provided across the board. If I live in town x I should be able to move to town y and receive similar services And if I move from state a and go to state b they shouldn't be completely differentThemes Addressed: Improve coordination of treatments and interventions between services and practitioners; Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees
Lucy Gratz, Job Coach/Developer Assistance	Early speech intervention-we had some but not the videos and computer prgs available now to Austic children at young ages to improve conversation to start early. My child barely conversed before 9 years old. We tried. It took a huge timeframe to catch up.The behavior modification seem to be only huge with some of the population. I didn't have it in the same severe way that I saw in others, but with my child, I did have to instruct her in what is appropriate behavior socially and physically at school and home without behavior interventionists. She hasd one on one aide thru 5th grade, then small group aide in classes and lunch. I think integrative inteventions were great like sensory and occupational which she did receive and speech therapy. I think anything that can integrte their thinking and behvior to be at more age appropriate levels is very helpful. I never used meds with her because she wasn't severly misbehaving or overly anxious requiring it. I think she may sometimes have been under-sensory affected after being overly affected when very young under 6-sensory integration maybe went overboard? No idea. Technology tools I know can be found to make a difference -I am sure. The only problem I saw over the years is if we tried something noone could clearly show me results with testing. Today in her vision therapy we can identify results better by data than we could at her earlier ages-not sure why.Themes Addressed: Need to prioritize early intervention; Research and availability of technology based or assistive technology treatments and interventions
Roseann Schaaf, Thomas Jefferson University	More research needs to be done on the related symptoms of autism and interventions to address these especially on the sensory symptoms associated with autism. Parents report that these sensory symptoms impact the quality of life for them and their child. Some ways that sensory symptoms affect quality of life are by inability for parent to work outside the home, difficulty taking child into community to participate in activities, and management of everyday activities such as dental hygiene, tolerating being in the car, eating a variety of foods, or sleeping soundly. Occupational therapists are in the unique position to address the sensory symptoms of autism as well as to foster independent participation in activities of daily living. Research to test and support the development of occupational therapy interventions to 1) address sensory symptoms; 2) foster participation in daily living activities; 3) facilitate participation in social community activities; 4) prepare adolescents and young adults for worker roles would be useful. Grants to support partnerships of occupational therapist with other professionals to test comprehensive models of intervention are needed. Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions;; Research and availability of treatments and interventions for co-occurring conditions
Artea Lombardi, Parent of Eden Autism Services	Early intervention is critical to assist an individual to become a productive individual in society. Behavior modification is certainly helpful addressing questionable behavior. The Department of Education and the school systems need to work more closely together. The special education depts. need to communicate important information to parents making them aware of all the services that are available both public and private. Schools need to keep older students in the school who are 18until they are 21 or they will not be eligible for DDD services until the child is 21. NJ seems to have a number of depts. who don't establish a dialogue with one another. There is a need to rethink the use of some aversives that help to reduce negative behaviorsThemes Addressed: Need to prioritize early intervention; Improve efficacy and availability of interventions in educational settings
Adrienne, Mother	Better educational services. But not around one approach (i.e. ABA). Autistic individuals are as diverse as the general population and many are auditory learners who do not "think in pictures." Second and equally as important is medical information. Many children have violent outbursts that are actually caused by pain. It is difficult for me to watch these untreated children and their families suffer needlessly. And big pharma doesn't have the answers!!! Themes Addressed: Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Improve efficacy and availability of interventions in educational settings;; Endorsement of specialized or ASD specific treatments and interventions
Lissa Probus, ASBG	I feel the most important area for research, services and policy is in educational and medical areas in that orderThemes Addressed: Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Improve efficacy and availability of interventions in educational settings
Tita	behavioral, educational, integrative intervention for this children they need peer role models Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions;Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Improve efficacy and availability of interventions in educational settings
J. H., parent	1. behavioral 2. behavioral 3. behavioral This applies to both the individuals on the spectrum, and to those who work with them, alongside them, or on their behalf. ABA is a proven strategy but it remains amazingly rare to encounter any degree of effective knowledge and practice of it. Secondary priority is for complementary/integrative interventions. Pharmacologic solutions will always be important, but they get too much emphasis and create many problems, known and unknown.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Anonymous	There are multiple researched based medical treatments that are available, that can improve a person's over-all health and behaviors associated with autism. The problem is most mainstream doctors do not know about the research and these medical treatments. Complimentary and integrative interventions can be taught in medical schools and offered as supplemental training and information to be passed through the AAP and other medical organizations if it is mandated by the government. Let's improve the lives of individuals with autism!Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees
Anonymous	Effective education strategies: impact of approaches: attention autism: TEACCH SCERTS. Imitation play. behaviourist approaches. What approach is most effective Neuro science : medical/ pharmaceutical. Impact of ICt to develop AAC , facial emotion recognition, apps, self awarenessThemes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions;Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Improve efficacy and availability of interventions in educational settings
Faith, PLAN parents Boston Autism Program	Behavioral, educational and technology based and interventions are intertwined and all require further research, new and different approaches to communication so the Autism community feels less locked in and are more able to contribute!Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Susan Sheldon, Parent	Behavioral, medical/pharmacological. More research on effective drug treatments with fewer dangerous side-effects.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Catherine Milian, Mother/Occupational Therapist	The fact the brain continues to develop over a lifespan. Providing early interventions has been proven to advance the lives of any disability. Though with the many different type of treatments out there. The one that works the best for your child/adult is the one that works for your family. The life of a parent finding the best treatments for children rely on the amount of families to follow through with the treatment plans. Providing all the therapies in the world will not truly help the child/adult if there isn't always constant connection between home, school, and environment. There needs to be teamwork and not a fight when working with a person with Autism. Though I find many school boards suffering or bleeding with the lack of training or funds. IEPs don't mean Individualized Education Plans but, they are annual civil wars where parents look to require an equal education. The advances of technology and or compensations in a classroom are still not accepted in every school system. The individuals who are losing in the end are the Adults who aren't attending college and or getting a job. Themes Addressed: Improve coordination of treatments and interventions between services and practitioners; Need to prioritize early intervention; Improve efficacy and availability of interventions in educational settings; Personalized combinations and types of treatments and interventions will be the most efficacious; Research and availability of technology based or assistive technology treatments and interventions
Maureen Durkin, University of Wisconsin-Madison	Evidence to evaluate the accessibility and long-term effectiveness and cost-effectiveness of alternative therapies.Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need research on long term outcomes of treatments and intervention, as well as the translation and implementation of research based treatments and interventions
Sue McCullough, parent	educational and behavioral services and treatments.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Improve efficacy and availability of interventions in educational settings
Anonymous	Provide education and meaningful therapy/ counseling to teens with autism and their families. Why is this so prevalent when these children are born from healthy pregnancies and strong family units?Themes Addressed: Improve efficacy and availability of interventions in educational settings; Need to educate parents about available treatments and interventions, and to help provide these interventions
Anonymous, parent	Better identification of what truly works. Many people spin their wheels on useless treatment or those with very minimal benefits. Some providers prey on parents desperation and that is wrong.Themes Addressed: Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need to educate parents about available treatments and interventions, and to help provide these interventions
Joe Hickey, CHSC Dubuque	Behavioral and Education, seems to suggest an extraordinary intervention. Currently, since we don't have a "cure." Intervention behaviorally, and educationally, appear to open the inner world of ASD. If the world can be opened even slightly, individuals can begin interaction to the larger world. Once the door is opened the individual can express him/her self. Each individual has gifts and talents. All need to be encouraged and allowed to express themselves.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Improve efficacy and availability of interventions in educational settings
Patricia Garon	Gaps in research seem non- conclusive and evasive.Behavorial recognition and it's many diversions are grossly unexplored. On-site support services and training are necessary in government, education, medical, Law-enforcement and public environments. Widespread public awareness is a safety measure for are Autism community as well as the general population.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees
Anonymous	Treatment and services are the most important questions to me personally, as a parent of a child with autism. In particular, I see a gap in autism expertise/knowledge in education. Educators are not sufficiently trained in how to address challenging behaviors related to autism. The decision-makers for public schools do not understand the importance of having sufficient staff and training to help these children access their often exceptional abilities while navigating their significant challenges. Additionally, there are not enough mental health professionals (or other medical specialists for that matter, eg developmental pediatricians) with the expertise to serve the population of children with autism and their families.Themes Addressed: Improve efficacy and availability of interventions in educational settings; Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees
Susan M. Taylor	My young adult with ASD has behavior 'outbursts' characterized by yelling, screeching, throwing (and breaking) food and other objects, and some physical aggression. At 14 years of age these behaviors were daily and sometimes several 10 min. episodes in a day. Now as a 27 year old, they happen two to three times a month and lack the physical destruction or aggression MOST of the time as long as they are handled by a trained person. My desire has long been to have schools provide training to parents on identifying triggers, observing and de-escalating mounting anxiety, understanding complexity of setting events and situations and then avoiding them OR making accomodations to make the situation tolerable, how to handle a full blown outburst to minimize harm, and dealing with aftermath. Teachers and attendants receive such training, yet as a parent, I was left to learn by trial and error. So TOVA training or a similar method is a must for parents. ALSO, positive behavior support was a life saver for us. It should be readily available to all parents. Our children are not like typically developing children for whom 'tough love' or consistent discipline works! *PBS positive behavior support gave us a framework for understanding behaviors, and dealing with the most problematic of behaviors Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Need to educate parents about available treatments and interventions, and to help provide these interventions
Anonymous	Behavioral, as well as teen and adult supports which are sorely lackingThemes Addressed: Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Improve efficacy and availability on behavioral treatments and interventions
Michele Hays	Educational services for students who do not have language impairment, can maintain grade level, and can manage basic life skills are grossly inadequate. Funding is not there, and schools ignore deficits that are not directly educational (like pragmatics, social skills, and executive function.) All autistic people need support with language, early support with technology should be the priority.Themes Addressed: Improve efficacy and availability of interventions in educational settings; Research and availability of technology based or assistive technology treatments and interventions
Sandra Rogers	Effective use of Reinforcement for adult populationsThemes Addressed: Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Improve efficacy and availability on behavioral treatments and interventions
Rita Pospisil, West Platte RII	Research, services and policy must continue in the areas of behavioral and educational interventions at preschool age. Medical/pharmacologic research would be the next priority. Remember these children need attention as early in life as possible to find strategies that will help them in various environments, home, church, school, town, etc. Then funding must be made for the treatment and early training for these individuals. It is important to attend to the diagnosis and treatment early and free if needed to often prevent the need for special services past the elementary age. Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions;Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need to prioritize early intervention; Improve efficacy and availability of interventions in educational settings; Need a qualified workforce trained in providing treatments and interventions; Need both a greater number and improved training of current clinicians, therapists, and school employees
Anonymous	Biomedical Treatments and holistic interventionsThemes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Improve efficacy and availability on behavioral treatments and interventions
Eileen Nicole Simon, conradsimon.org	Normally developing children recognize stressed syllables before beginning to speak, then use combinations of monosyllable word fragments for communication. The autistic child, does not appear hear syllable and word boundaries, and instead uses whole phrases or sentences. Pronoun reversal is part of this use of phrase fragments or whole sentences, which is referred to as echolalic speech. As a parent I observed and understood echolalic speech 50+ years ago. Kanner had to ask parents for the meanings of what he called metaphorical speech. Dana Suskind, a cochlear implant surgeon, has written an important book on the necessity of learning language during the pre-school years. The auditory system is clearly impaired in autistic children. The normal balance between excitatory and inhibitory neurons may be disrupted. Therefore, sounds cannot be relegated as background noise. Hearing aids are becoming more and more sophisticated for people who suffer hearing loss. They are tiny computers that seek changes in sound waves from all directions, and amplify sounds associated with speech. Research should be done to develop special hearing aids for autistic children. REFERENCES Brown R. A First Language: The Early Stages. Cambridge, MA: Harvard Univ Press 1973. Kanner L. Irrelevant and metaphorical language in early infantile autism. Am J Psychiatry1946 Sep;103(2):242-6. Suskind, D. Thirty Million Words; Building a Child's Brain. New York: Dutton 2015. Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	educational complementary/integrative interventionsThemes Addressed: Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Improve efficacy and availability of interventions in educational settings
Anonymous	I consider the most important priorities and gaps in research, services, and policy on behavioral, educational, technology-based and complementary/integrative interventions are the lack of person-centered planning, and awareness, knowledge and skills to access, design, implement and evaluate cultural and cultural linguistic competent educational, technological and complementary interventions. We need more research, policy and practice to focus on the experiences and voices, stories, of those directly impacted. Again, we must include and to hold space for diverse families perspectives, and influence in all that we do, and what we do in the areas aforementioned are based on the axis of services, opportunities and supports are solely for, with and by them. Themes Addressed: Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Personalized combinations and types of treatments and interventions will be the most efficacious
Lisa Ackerman, TACA	' Based on CDC autism estimates, declare autism an epidemic and public emergency. We need a census vs. a survey. ' Push for subtyping to determine appropriate treatments and therapies to meet the unique needs of each individual. ' Since 2006, over $3 billion has been spent on the IACC. Families are not experiencing any changes to services or help for these costs. No innovative treatments have been found. I would like to propose the following changes to the IACC: o Consider a more diverse board at the IACC to include some of the world's researchers in cause and innovative treatment such as: Dr. Martha Herbert, Dr. Jill James, Dr. Richard Frye, and Dr. Dan Rossignol. It is my opinion that the current IACC board lacks in ground-breaking research and medical treatments happening today o Push the U.S. Dept. of Human Health (HHS) and IACC to collaborate and recognize the needs for services and support for families. We cannot operate in a vacuum. ' Collaborate with families via support groups in identifying needs for those living with the autism today. ' Outside traditional therapies, medical treatments are helping individuals with autism live healthier. We need to provide a focus on available treatments today. ' Identify a task force to address the current and future needs of adults living with autism. ' Prioritize and evaluate all possible environmental causes of autism. ' Operate with a sense of urgency in your strategic plan and committees. Themes Addressed: Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Endorsement of specialized or ASD specific treatments and interventions
Anonymous	In the educational field in Wisconsin, there is a dearth of knowledgeable and qualified ASD people working in school districts because of institutionalized ignorance, institutionalized indifference and institutionalized inertia of educational administrators of special ed. One WI DPI autism consultant is available to educate over 400 districts for those who take the initiative. For the evaluation of ASD in schools, one CESA autism evaluator stated that they do not use the measurement tools in the back of the WI DPI Autism Evaluation Manual because they are too "medical" in nature. HFAs are assessed by observation of their behavior in gym class in our district. I know this because it was said to me at my daughter's IEP meeting by the school psychologist, who holds no professional accreditation in ASDs. Our school district refuses to address social/communication needs of HFAs and Aspergers,even when presented with programs like OAR's: Understanding Autism Resources for Teachers (http://www.researchautism.org/ resources/teachersdvd.asp Themes Addressed: Improve efficacy and availability of interventions in educational settings; Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees
Anonymous	behavioral, educational, and complementary/integrative interventions Themes Addressed: Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Improve efficacy and availability on behavioral treatments and interventions; Improve efficacy and availability of interventions in educational settings
Anonymous	It needs to be more opportunities to attend workshops, local support/advocacy groups, available to families, educators, personal assistants, etc.Themes Addressed: Need to educate parents about available treatments and interventions, and to help provide these interventions; Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees
Bonnie Hawkins, Parent	I am fortunate and our school system has a GREAT early childhood program. However, I work for the school system and never knew anything about it, until an outside agency told me about it. She was in it for 2 years before starting full inclusion preschool. She will be entering 1st grade in the fall and is doing GREAT!Themes Addressed: Improve efficacy and availability of interventions in educational settings; Need to educate parents about available treatments and interventions, and to help provide these interventions
Amie Nicole	Every child with autism should be treated for their underlying medical comorbid conditions. THEY ALL HAVE THEM. Insurance needs to cover these specialty doctors and alternative practitioners. Insurance companies need to be held responsible for actually covering the therapeutic services these children require without constantly denying claims to see if the parent will finally break down and stop the battle. Speech therapy, occupational therapy, feeding therapy, ABA therapy, Floortime and RDI therapies, physical therapy, cranio-sacral therapy ... all of them.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Research and availability of treatments and interventions for co-occurring conditions
Bruce Hall, Bruce Hall Photography	Our twin sons have severe autism and I/DD, and all of the above are important, however, as all on the spectrum have different needs, at the top of our list would be technology based intervention for communication, medical, pharmacological and behavioral supports are all critical and in short supply everywhere, except for those with the resources to pay for these service. And don't forget dental services. Medicaid, and in CA, Medical options are few and the quality is usually very poor.Themes Addressed: Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Current priorities are appropriate (behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions); Research and availability of technology based or assistive technology treatments and interventions
Tammy G Harrison, Parent of ASD	This is difficult. All of them should be priority. Services should come first, but should be more complimentaryThemes Addressed: Positive and negative comments about searching for a 'cure' rather than treatments or interventions; Current priorities are appropriate (behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions)
Lisa Falke, Commonwealth Autism	research into assessing, teaching and building social skills; research into medical and/or behavioral means to address perseveration; more funding for services for adults with autism and more research into effective service models for adults with autismThemes Addressed: Improve efficacy and availability on behavioral treatments and interventions;Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Gene Bensinger	Pharmacological research focused on behavioral and quality of life challenges should be increased. Technology research funding should prioritize collaborative large scale proposals and projects. Themes Addressed: Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	A developmental lens is the most potent way with which to observe the individual with ASD. To see behavioral analysis and modification as the most appropriate tools for treatment is to miss the power and value of knowing and understanding the development of the child. Framing treatment around developmentally appropriate expectations is crucial. Allowing the child to build, incrementally, to next steps, while watching the child engaged in favored play activities and functional communication, is equally, if not more important, than working to suppress behaviors and reward compliance. Engaging parents to be central partners in the treatment of the disorder is fundamental. Helping parents learn to play with their kids, learn to augment therapies with time spent together in the home and community and learn to value communication, in all forms, will reap major benefits to everyone concerned. Maintaining the stance that the therapist is the "expert in the room" and therefore the major authority on treatment diminishes the opportunities for parents to take the reigns of the intervention and offer valuable treatment to their children throughout the week.Themes Addressed: Need to educate parents about available treatments and interventions, and to help provide these interventions; Endorsement of specialized or ASD specific treatments and interventions
Tatia Kortepeter and Vicki Mabanta, A Work in Progress, LLC	More research needs to be done on the long term outcomes of individuals receiving ABA treatment. We look at this as gold star standard but does it truly have lasting effects that improve language and independence? More emphasis needs to be put on traditional therapies such as occupational therapy with a solid background in sensory integration and speech/language therapy that works on spontaneous communication. Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Need research on long term outcomes of treatments and intervention, as well as the translation and implementation of research based treatments and interventions
Robin Davis	Education in the public schools is severely lacking. The teachers do not know how to handle kids with an ASD. Our children are often "bullied" by the teachers as well as the students. There needs to be more education in the school on how to work with our ASD kids as well as well as realization that our kids are not "cookie cutter" they have very unique, individual learning styles and traditional public school does not work. Also, partnering with outside agencies and parents would help the schools tremendouslyinstead of locking us out!Themes Addressed: Improve efficacy and availability of interventions in educational settings; Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees
Linda Yin Lee, Self employed pediatric occupational therapist	There are definitely significant gaps in educational and complementary/integrative interventions. So many children are being diagnosed with autism that the public educational system is not prepared to deal with preparing these children to optimize their independent functioning in later life. I fear that generations in the future will have increasing numbers of autistic adults with limited alternatives at a huge public expense. There is so much research and emphasis on extinguishing unwanted behaviors and forming "correct" behaviors that people fail to recognize that the best approach is having a team of well chosen professionals. And the make up of the team varies for each child even though they all have the same diagnosis.Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions;; Improve efficacy and availability of interventions in educational settings
In's Kuperschmit, Esq. and Janeen Steel, Esq. , Learning Rights Law Center	Learning Rights believes that treatment and intervention are vital for students with ASD. However, we have identified several gaps in services that should be addressed in the IACC plan. While the law speaks of evidenced based interventions; many schools do little to implement interventions with fidelity to any protocol. This is due to a variety of reasons including lack of training, budget constraints and access to information about evidence based intervention protocols. For example, in the Los Angeles Unified School District (LAUSD) it is rare to find staff, such as behavior interventionists, who have been sufficiently trained on behavior-related protocols. Similarly, it is rare to find staff who have been sufficiently trained on social skills-related programs. Indeed, while nonpublic agencies and private companies in the county are developing innovative programs such as ones that focus on teaching social skills in inclusive settings, LAUSD and other public schools are falling behind and not serving students adequately. In addition to developing evidence based protocols that can be used by schools, the IACC should ensure that resources for parent trainings are part of any plan to diffuse ideas of treatment and interventions. Many of our parents of students with ASD do not fully participate in the decision making process at their school since they are unaware of the scope of treatment and interventions available to them. Parent training would therefore fill a vital gap. Themes Addressed: Improve efficacy and availability of interventions in educational settings;;Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees
Denise Rozell, Easter Seals	As a nation, we still do not have enough information to know which treatments and interventions are most appropriate for children or for adults, and which will help people with autism to live with equality, dignity, and independence over the lifespan. Easterseals encourages the IACC to prioritize research that will build the scientific evidence for some of the new models of intervention that have been noted to be promising practices or have the beginnings of supportive evidence. Families need more choices to fit the varying needs of their family members. We also cannot focus solely on children's interventions, but in addition must address supports for adults with autism, including young adults in transition and those over 65, and look for ways that allow them to work, live and play independently in their communities. Themes Addressed: Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used
Anonymous	Integrated therapies, accessed early, with individually tailored educational approaches must receive more research funding. Again, practical support, interventions and approaches are essential to improving quality of life for those with autism, their outcomes and their independence. Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Personalized combinations and types of treatments and interventions will be the most efficacious
Matthew Carey, Autism Parent	Again, I will focus on 2 areas for emphasis. When my son developed epilepsy, I found doctors with very different ideas of which medications should be tried first. They had their experience to guide them, but no data. One doctor was particularly concerned with behavioral issues involved with one medication, while another was concerned with medical reactions. As one recent study pointed out, minimally verbal autism is very much an under served area. One recent study was titled "Minimally verbal school-aged children with autism spectrum disorder: the neglected end of the spectrum." There are about 34,000 studies in Pubmed on autism. Only about 40 on minimally verbal autism. While there are more mentioning nonverbal autism, they still only account for about 2% of the studies published. One recent study found that about 40% of participants in an autism program were nonverbal or minimally verbal (PMID: 27120989) We need much more emphasis on this area. Strategic Plan objectives should include: 1) Is epilepsy in autism the same as epilepsy in the rest of the population? 2) What medications work well in the autistic population and which do not? 3) How do we teach nonverbal and minimally verbal autistics? 4) How do we develop or expand spoken language in this large segment of the autism population? 5) How do we teach alternative communication strategies in non and minimally verbal autistics? 6) Assessment strategies for non and minimally verbal autistics.Themes Addressed: Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees
Anonymous, Pittsburgh Center for Autistic Community	1) Educational equity. Classroom inclusion. Autism education for educators. 2) AAC availability -- particularly medicaid/medicare coverage for AAC-related software and the hardware necessary to run it (such as tablet computers, select smartphones etc). 3) Clinical research on interventions that help autistic people learn and achieve their goals rather than emphasis on indistinguishability. 4) Much more focus on sensory and behavioral support for both children and adults with funding for providing this support. 5) More comprehensive treatment plans for after diagnosis, including an established behavioral component that helps bridge gap between medical and home/community. Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Improve efficacy and availability of interventions in educational settings; Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees; Endorsement of specialized or ASD specific treatments and interventions; Research and availability of treatments and interventions for co-occurring conditions
Shannon Des Roches Rosa, parent	Pharmacologic: We need more & more differentiated research in this area: Which drugs actually help autistic people, & why? Anecdotal evidence from medical professionals, autistic people, and families suggest autistic people have greater incidences of atypical & paradoxical reactions to many medications'why is this, & what are alternative approaches? Does medical marijuana has legitimate applications, & why? Behavioral: we need better accountability among ABA professionals. Autistic people, their loved ones, & their supporters have long questioned & outright criticized behavioral practices that focus on "normalizing" autistic people -- sometimes through traumatizing means -- due to refusal understand or accommodate autistic processing, sensory, learning, & motor traits. Autistic people need better options. Educational: We need educational approaches that truly reflect autistic learning styles. We also need to emphasize the differences simple accommodations can make for autistic students in classroom settings: Providing noise-canceling headphones, respecting the need for breaks, ensuring available quiet spaces or break rooms, allowing students to move or "stim" as needed. Technology: We need a revolution in investigating/developing communication options, especially for those with motor challenges &/or minimal speech. Current options are limited & have too many hurdles to effective adoption (outdated technology, expense, user-unfriendly interfaces, etc.). Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Improve efficacy and availability of interventions in educational settings; Research and availability of technology based or assistive technology treatments and interventions
Angie Calhoun, Mecklenburg County Pubic Schools	Education, education, education! The more families know, the better they can cater to the child's needs. Behavior modification is so key. I hear that people want to embrace differences, but children on the spectrum, especially if mild, need to learn to function in society. They are already self-absorbed enough. Let's teach them to overcome that.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Improve efficacy and availability of interventions in educational settings
Lynda Domina	Behavioral issues have to be addressed at all ages! Many of us deal with aggressive behaviours. Intervention is hard to get, and training in how to restain our child in a manner safe to both our child and ourself denied. A large number of people with autism end up in state care, and group homes because as parents we are denied proper training in behaviour modification and restraint measures.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions;; Need to educate parents about available treatments and interventions, and to help provide these interventions
Allan D. Hollander	Priorities for interventions and therapies include the following: - Improving augmentative and alternative communication methods, both from a technological angle and from developing best practices for their use in therapies and education. - Mental health issues, at all ages. - Sensory integration therapies, under the hypothesis that much of autism is sensorimotor in nature. - A focus on therapies and treatment for co-occuring conditions. Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions; Research and availability of treatments and interventions for co-occurring conditions
Beth Malow, Vanderbilt University Medical Center	while medications are important, a focus on non-pharmacological treatments is what many families want. The technology-based interventions are particularly promising in reaching a wide range of people.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	Evidence based treatments of co-occurring medical and behavioral/psychiatric conditions such as sleep, anxiety, irritability, obesity, and feeding issues are urgently needed to improve the health and quality of life of individuals with ASD. Research needs to address more efficient and cost effective ways to determine safety and efficacy of treatment strategies. We also need greater awareness of the importance of research in the community. Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions;Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Research and availability of treatments and interventions for co-occurring conditions
Anonymous	combination therapies needed, medication and behavioral. Need for more sophisticated analyses and methodologies to study treatments, and focus on components of treatments and not comprehensive packages. Need to move away from simple treatment versus community control studies.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Rosemary Heath, Assoc. for Metro-Area Autistic Children (Board member)	Educational services for autistic children and adolescents are overwhelmingly government-funded. There seems to be a movement to provide minimal support for actual academic education. There is an emphasis on providing some behavioral supports coupled with an either/or route to academic success. New York State wants to issue only Regents diplomas. The funding they provide to non-public schools makes it very difficult to hire and retain trained teaching staff to help the students achieve Regents diplomas. More flexibility for the schools and better funding would make a significant difference in academically-able but behaviorally challenged students achieving high school diplomas. There seems to be a move to decrease funding to non-public schools, which I feel serves many autistic children and adolescents poorly. Mainstreaming has many benefits; for a significant number of autistic middle school and high school students, being in specialized classrooms greatly assists them in learning. There needs to be an acknowledgement that some autistic individuals need specialized classrooms, and that the funding and support for them must both continue and be increased.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Improve efficacy and availability of interventions in educational settings
Carol Fruscella, Parent and Legal Guardian	We need intervention services for Adults with Autism when a secondary regression happens well after the initial DX. We have medications for 'behaviors'. We have few people looking at the reasons these behaviors are happening. Many times with my son, I have witnessed that when he is ill his behaviors either improve greatly because he is running a temperature... OR he declines greatly when he has a gut issue. For MY son, it is a whole body issue. We can no longer study the brain while not exploring the gut that feeds the brain. The systems are interconnected. I find it odd to be give medicine to calm the behavior, not knowing the root cause in the whole body FOR the behavior. In my mind that is like giving a cancer patient aspirin for their cancer. A WHOLE BODY approach needs to be taken when looking at the most severe cases of Autism. Themes Addressed: Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Positive and negative comments about searching for a 'cure' rather than treatments or interventions
Russell Goodman	Figuring out a social balance for children and adolescents in public schooling may be a challenge, as not all educators are aware of the nuances necessary to help guide an autistic child to their greatest potentials, and access may be limited to those who do understand how to do so. For some who are seemingly 'locked' within their niches, expanding past their niches (while utilizing launching points that are familiar within those niches) may help. Forming rapport is an important and overlooked part of diagnosis: to find a way to connect to an autistic and encourage them to open up, and then getting the questions answered that are necessary. This completely varies from individual to individual, from playing a game together to having a conversation. Communication from within the mind to the external world may be inhibited, so alternative forms of communique that are non-verbal and neutral may be more comfortable when discussing complicated topics. Some may prefer technology to type, some may use their own codified vocabulary, varying per individual.Themes Addressed: Improve efficacy and availability of interventions in educational settings; Personalized combinations and types of treatments and interventions will be the most efficacious; Research and availability of technology based or assistive technology treatments and interventions
Anonymous	As an educator and a parent of a child with an IEP I am able to see both sides of the coin. My experiences have opened my eyes to the lack of appropriate education for children with special needs in our public school systems. Parents need more information when the child is not in school yet so that they are aware of their rightsThemes Addressed: Improve efficacy and availability of interventions in educational settings; Need to educate parents about available treatments and interventions, and to help provide these interventions
Jason Bourret, New England Center for Children	Because it is a proven approach, and one in which research aimed at further advancing and improving services continues, we urge the IACC to specifically support research in applied behavior analysis and, in particular, applied behavior analytic research designed to improve curricula and methods for teaching individuals with autism The heterogeneity clearly present in ASDs is an issue that we believe is of utmost importance and that this should be considered in all stages of the development of an autism research agenda. This varied presentation is readily apparent to educators of individuals diagnosed with autism from the youngest to the oldest persons served. In fact, the most effective educational and clinical interventions take this heterogeneity into account by tailoring the teaching and therapy to the particular learning needs of each individual. Keeping this heterogeneity in mind, we suggest that the IACC explicitly promote single-subject treatment and education research in which the effects of experimental manipulations are examined at the level of individual participants to identify the conditions and subject characteristics necessary for treatment effectiveness. The ultimate scale of such research should include multiple replications of intervention effectiveness across many individuals such that groups of responders to distinct treatment strategies can be identified. Attention must be directed toward making effective, empirically validated educational and treatment methodologies readily available to individuals diagnosed with autism and their families and caregivers. While there is no question that further research is necessary to compare and develop the most cost-effective delivery of treatment models, there is sufficiently sound scientific research showing that there are effective ways of helping those affected by autism now. For example, applied behavior analysis has been shown to be an effective means of teaching those skills the child with autism lacks and eliminating or replacing their challenging behavior. However, implementation of scientifically sophisticated behavioral treatment requires highly trained teachers and therapists. There is a continuing need for the development and dissemination of comprehensive curricula for teaching individuals diagnosed with autism. We suggest that the IACC promote research on the evaluation of teaching procedures and the production of comprehensive curricula of teaching procedures for individuals diagnosed with autism. We also suggest that the IACC promote examinations of methods of training caregivers to implement effective teaching procedures with individuals diagnosed with autism. Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Improve efficacy and availability of interventions in educational settings; Need to educate parents about available treatments and interventions, and to help provide these interventions; Personalized combinations and types of treatments and interventions will be the most efficacious;Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees
Anonymous, The Childhood League Center	Families need choices that are evidence-based and research reliable. Publically, ABA markets itself as the only evidence-based intervention; but other evidence-based interventions for young children that diverge from a traditional operant conditioning protocol complement the values of many families in a way traditional approaches do not. These interventions tend to be developmental, relationship-based, play-based and parent-implemented. Increasing research shows these interventions fit best with the principles of evidence-based early intervention. Unlike ABA, as soon as a concern arises about a child's development these interventions and family training can begin within the natural environment of the child, embedded into their daily routines. Research shows the intervention provided by caregivers that receive ongoing training and support from an expert clinician is effective. Bias toward ABA is a disservice to the community as it creates a barrier for current or new interventions to emerge that are not based on behaviorist models. ABA is costly and not easy to disseminate, but due to the influence of ABA proponents, insurance companies forced to offer autism coverage consider ABA to be the only choice. As a result long wait lists exist for ABA services and access to intensive autism intervention has become static. Excessive time passes and too many children go without INTENSIVE intervention necessary for them to achieve their full potential.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used
Patrick Johnson, American Academy of Pediatrics	IACC Strategic Plan's section on treatments and interventions for autism sparked significant discussion amongst AAP member-physicians. While the Strategic Plan rightfully identifies the myriad of comorbid conditions that can accompany ASD (ADHD, epilepsy, etc.), physicians would have wanted to see a breakdown of potential treatments targeting specific symptoms of comorbid disorders (e.g. self-injurious or stereotyped behaviors, speech delays, debilitating anxiety, etc.). Furthermore, though several models are mentioned (e.g. ESDM), treatments are not differentiated based on age or severity of ASD symptoms ' though the Plan does reference outside sources that physicians can read for more information. In terms of evidence supporting current treatments, the Strategic Plan correctly explains that many of today's clinical trials are ongoing, with limited analysis and research surrounding currently available ASD treatments. AAP recommends including slightly more in-depth explanations about the promising results of the Early Start Denver Model (ESDM) and JASPER. Finally, the AAP is most concerned about the lack of benchmarks for ASD treatments. The Plan fails to mention how effective each treatment is, or even compare treatments to each other. Additionally, we would like to ensure that there are regulatory mechanisms (outside of the 'self-reporting' mentioned in the plan) to ensure that children are receiving the most efficacious interventions possible.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used; Research and availability of treatments and interventions for co-occurring conditions
Hannah Russell, Primrose School	We need to increasingly educate teachers, special educators and parents on how to use the 27 evidence based strategies for ASD in the classroom, and for education in general. Many general educators have limited training on how to help children with ASD in the classroom, and therefore these children are not getting the education and supports, they deserve, and need, to be successful. Themes Addressed: Improve efficacy and availability of interventions in educational settings; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees
Anonymous	Treatments should not be considered only 'complementary' based solely upon the history of our medical science. I have found Physical Therapy from a person who used her hands and observations, not my unfortunately selective verbal communication, to begin to help my very pervasive muscle tightness problems. Untreated over decades, these were causing joint issues now. Luckily I exercised always. I believe that physical movement-related health care fields could contribute much for real adults dealing currently with autism. Brain scans are showing cerebellum-related issues; people with autism often have posture issues. Yet it is difficult for adults to receive extremely helpful muscle training, relaxation, and proprioception-related assistance even when one tries to communicate that it is helping. For women with mild autism, communication difficulties can be very selective, once a woman has learned to 'act normal' in most situations, cognitively rather than instinctively... These communication difficulties can appear in some high-stress situations -- like medical crises. An accurate diagnosis could actually save lives, improve quality of life in many areas one can't even list, and money for all concerned by targeting the right treatments, or modifications to existing treatments. An example: trouble identifying emotions : children with autism are being taught this now. Why would adults not also need this and be helped? Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions;Improve efficacy and availability on behavioral treatments and interventions; Research and availability of technology based or assistive technology treatments and interventions
Dr. C. Rick Ellis, Spectrum Psychological and Forensic Services	Neurotherapy and BiomedicalThemes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Renee Vogt	#1 More research needs to be done on how to train educational professionals on how to respectfully and effectively support individuals (boys vs girls) with autism. #2. Complementary/integrative interventions #3. Training for parents on how to advocate for their child. Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need a qualified workforce trained in providing treatments and interventions ; need both a greater number and improved training of current clinicians, therapists, and school employees
Stephen Holtsbery	Educational technology approached interventions are valuable. Medical and pharmacological aids need to be further studied. Complementary/integrative are effective and contnued research there would be great.Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects; Improve efficacy and availability of interventions in educational settings
Alexander MacInnis, Stanford University	Individuals with ASD, their families, and society as a whole really need effective treatments. Many people, primarily young people, are severely affected in a way that seriously impacts them, their families, and in the long run, the country. Not nearly enough has been done to find effective treatments. Unfortunately, far too much of the public press has focused on individuals who claim that ASD should not be treated at all. Apparently some feel that ASD is not a problem, including some who claim to have ASD and argue eloquently to that effect. This ignores the fact that ASD is defined as a disorder, and the fact that a large portion of those with ASD are in no position to argue on their own behalf, and many families are too stressed by ASD to do much about it either. There is a large amount of weak evidence, e.g. anecdotes and physician reports, that numerous treatments, with the combinations customized to the biology and responses of the individual, are effective at treatment both core and quality of life symptoms of ASD. Many of these treatments are not pharmaceutical drugs. However there is scant high quality research investigating the effectiveness of such integrative and eclectic medical approaches. The IACC should prioritize much more, and higher quality, work on this topic.Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Improve the evidence base for treatments and interventions, and make that information more readily available and widely used
Sandra Marcus	A close look at diet and bio medical protocol. My family has seen results with a clean diet and supplements. Themes Addressed: Improve availability and efficacy of treatments and interventions specifically for adult and adolescents with ASD; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Carolyn Gammicchia, Parent of 26 year old son diagnosed with autism after sustaining a vaccine injury from six vaccines given in one sitting.	1. We need inclusive education supports and services specific to autism to be identified as best practice models to provide a path for better educational outcomes for all students with autism. 2. We need to identify best practice models for medical wellness for individuals with autism to ensure overall wellness. Chronic illnesses are being caused by many of the current medications being used for individuals with autism off brand. There are many alternatives within complementary and functional medicine that are assisting individuals with autism to also alliviate things like challenging behaviors. 3. Identify within Medicaid deliverables what can be done to ensure appropriate medical care and choice. 4. Utilize current medical models being utilized by MAPS doctors across the country to be pathways to medical necessities to be identified for autism as medical necessities. 5. Conduct independent research in these areas to involve supported decision making as well within the process of educational, medical, and access to employment options for individuals with autism. Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects
Anonymous	MORE for high functioning ASD kids in all the above areas. More coverage for complementary/integrative interventions from evidenced based studies. More research with these interventions. Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Positive and negative comments about searching for a 'cure' rather than treatments or interventions; Endorsement of specialized or ASD specific treatments and interventions;
Idil Abdull	ABA therapy for older kids and for nonverbal individuals research is needed. We now have Medicaid covering autism therapy - thanks to the last IACC committee members. We now need a national insurance coverage as well. We also need more research in sensory based therapies and floortime, RDI, etc.Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions;Improve efficacy and availability on behavioral treatments and interventions
Heather Parsons, American Occupational Therapy Association	This question, question 5 and question 6 should be considered together. Treatments and service delivery should reflect the long term goals of the person and their family, should occur in the least restrictive environment, and should lead to maximum independence as an adult. With that in mind, we make the following recommendations: continue to determine the best assessments an interventions for daily occupational performance including: play, education, activities of daily living (ADLs), instrumental activities of daily living (IADLs), leisure, work, rest and sleep, and social participation. Increase the use of consistent outcome measures, based on client self-determined outcomes. Investigate transfer or generalization of gains from interventions. Document the maintenance and long-term impact of gains in interventions studied. Reframe preferred interests as meaningful occupations for individuals with ASD and use them as an intervention, and measure outcomes related to engagement, initiation, and occupational performance. Use strengths and self-determination frameworks as interventions for study. Better understand how cognitive, sensory and behavioral issues may impact participation across environments, and what treatments best improve participation.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Personalized combinations and types of treatments and interventions will be the most efficacious
Anna Frances, autistic 17 year old	Genetic, metabolic, sensory, neuropsychological testing to determine the individual regimen of nutritional therapy (diet and supplements); detoxing therapies; remyelination therapies (occupational therapy, neuro-optometric rehabilitation); psychological therapies (talk therapy, somatic therapies for trauma; etc).Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Improve efficacy and availability on behavioral treatments and interventions
Anonymous	' Early medical testing and screening should be done with all children, PRIOR to vaccines, to determine if their are vulnerabilities or sensitivities to vaccine reactions or injury. ' Please consider educating doctors on the protocols used by MAPS - Medical Academy for Pediatric Special Needs. ' MUCH more should be done to ensure children are being educated with research validated educational strategies in special education, which will minimize the demand for as much behavioral interventions in the home setting. I am disturbed about the trend of separating education and applied behavioral analysis and related interventions into separate realms, when they should be carefully integrated in school settings, and carried over into the home. ' I would like to see model projects in which college students can volunteer for credit in educational settings to provide needed resources, and parents should be integrated much more into educational settings as they have time and ability. Parents are often being EXCLUDED from the educational experience when their child is in special education. ' Much more should be done to provide physical education, and experiences to children with autism. They are often being excluded from their typical peers, and obesity is a problem for many with ASD, as the opportunities are limited. All children under the age of 4 should be screened for autism symptoms, starting as early as age one. Older children should be screened if there is any concern about health and development All children demonstrating symptoms of autism should have MEDICAL testing' not only the standard genetic panels, and EEG's, and MRIs, but also testing for gastrointestinal dysfunction, and neuro-immune dysfunction, and autoimmunity. Children with symptoms of regression, and loss of language, need to be very carefully evaluated. These children often have medical issues affecting their development. Identification of sub-groups is vitally important. There is a wide disparity in autism types, and the labeling of individuals previously labeled as Aspergers or PDD-NOS, as 'autism spectrum disorder"'while helpful in acquiring treatment'when these individuals promote "neurodiversity" as being a positive thing, it can be VERY damaging to individuals (and their families) with more significant needs and medical syndromes. Individuals with serious communication, behavioral, and health challenges need INTENSIVE treatment, but are often being branded by higher functioning Asperger types and their families as "not accepting" or "celebrating" their 'differences'. I find the attitudes marketed by the neuro-diverse self-advocates to be extremely damaging on many levels. This issue can be solved by defining autism into subgroups. Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Need research on biomedical and pharmacological treatments and interventions to improve efficacy and reduce side effects;Improve coordination of treatments and interventions between services and practitioners; Improve efficacy and availability of interventions in educational settings; Need a qualified workforce trained in providing treatments and interventions need both a greater number and improved training of current clinicians, therapists, and school employees
Jeanne Kacprowicz, mother of 13 y/o with severe autism	All families with a child diagnosed should receive counseling on dietary, therapeutic and testing interventions to allow them to decide how to proceed as a family. They should also be put in contact with local autism support groups to assist with the shock of a diagnosis.Themes Addressed: Need research on the efficacy and availability of complementary, alternative or integrative treatments and interventions; Need to educate parents about available treatments and interventions, and to help provide these interventions
Carol Schoder Kotas	Not enough information is "out there" regarding co-existing conditions, i.e., ADD, ADHD, OCD, generalized anxiety disorder, motor disorders, bipolar disorder and other mental health issues that affect many of the ASD population. Physicians and their support staffs need to be better educated about ASD. Themes Addressed: Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees; Research and availability of treatments and interventions for co-occurring conditions
Amy belzile	Children with ASD should be evaluated as a whole being instead of compartmentalizing their deficiencies by therapy type..OT/ ST/ PT. perhaps a model where the kids outcome is the goal and not just telling them to go to therapy. Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Personalized combinations and types of treatments and interventions will be the most efficacious
Neil A Snyder, American Speech-Language-Hearing Association	There is a need for research in the area of surveillance of qualified professionals providing services to determine the background, training, and credentials of individuals providing treatment to those with ASD and to determine the nature of the services that are currently being provided. What services are being delivered and by whom? No one approach is equally effective for all individuals with ASD, and not all individuals in outcome studies have benefited to the same degree. For clinicians to determine whether an individual is benefiting from a particular treatment program or strategy, measurement of that individuals' progress using systematic methods, such as in single-subject research design, is also recommended.... The U.S. Department of Education (http://www.asha.org/uploadedFiles/US-Dept-Education-ASD-Services-Letter.pdf) and CMS recognize the importance of speech-language services for individuals with ASD, and that only focusing on one treatment, such as ABA may not yield the best outcomes.Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Need a qualified workforce trained in providing treatments and interventions; need both a greater number and improved training of current clinicians, therapists, and school employees
Catherine Camp Boyle, Autism Housing Pathways	In addition to those outlined earlier, interactions of people with ASD with law enforcement need to be a top priority. These individuals are more likely to interact with law enforcement with more negative consequences. Assuming individuals even survive the encounter, prison should not be our default housing and adult services provider. This raises the related issue of the school-to-prison pipeline. Another issue is the lack of acute psychiatric beds for non-verbal individuals in crisis. Related to this is the question of treating co-morbid disorders in individuals with communication issues. How do you do cognitive behavioral therapy with someone who has extreme OCD, but has severe receptive and expressive language issues?Themes Addressed: Improve efficacy and availability on behavioral treatments and interventions; Research and availability of treatments and interventions for co-occurring conditions

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