| Lisa Wiederlight |
Too many of our children are left sitting on the couch after they graduate high school. We need to know how to help these individuals become employed, how to support their caregivers, and Premature mortality--how to address the reasons for it, and how to get this to the people who need it. Vocational training--what is currently available, what is effective, how to maximize opportunities in different environtments Housing--same Community integration--is it possible for all, and if not, what is a good alternative? There is an autism spectrum and not everyeone needs or want the same options here. Themes Addressed: Employment, Health, Housing, Lifespan |
| Kathleen Meyer |
There needs to be more funding for housing models for autism and IDD. Education of agencies providing services is key. Interventions are not successful without understanding the spectrum of the disorder. The assessments of people for services does not address autism making it hard to get the support the adults need. Currently there is no consideration for those who are more severely disabled who may need to remain in a ""sheltered workshop"" situation. There is disbelief that some people may need that for an extended time or indefinitely. Most people have the majority of their social life at work. Most people are lost if they lose their job. It is not different for our loved ones with disabilities, especially autism. I support trying to get them into the greater community. I don't support pulling the rug out from under people whose social life and rhythm of life are best in the vocational learning situation. We need a broader understanding of the whole autism spectrum, not rose colored glasses, magical thinking and assumptions that the autistic self advocates represent the whole autism spectrum. Themes Addressed: Education, High Support Needs, Housing |
| alvaro ryes, angels castle |
Housing and programs for young adults aging out of the highschool system. Grants they can use specifically for housing and programs designed for continuing learning and social activities Themes Addressed: Community, Housing, Lifespan |
| Margie Bruff, University of Colorado at Boulder |
I'll just reiterate some of my response from the previous question in case it is more relevant here: resources for driving (headlights, sounds, and ever-changing traffic patterns have been big challenges and sources of anxiety for me); resources in higher education (there is so much focus on ADHD, I was originally sent for ADHD testing after telling my university psychologists about my (now-diagnosed) autism symptoms Themes Addressed: Community, Education |
| Jane Horn |
Do strengths assessments to enable optimization of quality of life and possible employment. My nephew is being warehoused and some very considerable abilities are ignored. Also see my response to question 5. How can “community” group homes provide benefits of being in the community? Why doesn’t my nephew have meaningful programming? What about vocational programming? What happened to parent/family support programs? My nephew has auditory perceptual problems which frequently interferes with his understanding what is said to him. Staff then yells at him which is demeaning and does not help communication. Why is he housed in such a situation? Also, his disability check does not cover his smoking. Themes Addressed: Community, Employment, Housing |
| Kristen Herrett |
More job training and training geared toward those considered “lower functioning.” Also training in life skills more of an assisted living model vs a group home model. Themes Addressed: Community, Employment |
| AutisticallyReal, Actually Autistic Advocate |
Include cooking, banking, and how to fill out forms in high school. More shared living spaces for Autistic people. Helping caregivers navigate the transition by bringing more awareness of programs available to regarding housing, education and setting up trusts, etc. Require health care provider to go through training [redacted] presented by Actually Autistic people in order to gain understanding of requesting consent, allowing for more processing time, and the need to have an advocate or support person/animal with them. Most of all, expect competency, regardless of perceived support needs. Even non-verbal Autistic Folk can communicate, if one learns their ways. (PS most of us have wicked senses of humor, so we can make it fun!) Themes Addressed: Acceptance, Community, Education, Health, Housing |
| T. A. Meridian McDonald, Vanderbilt University Medical Center |
We need: *More research on strengths & social value of autism *Less research on the eugenics of autism which is further creating social stigma & marginalization *Better understanding of the strengths of autism & their developmental pathways so that we can scaffold autistic people toward autism excellence *Affordable housing with access to transportation *Research on how to increase tolerance & acceptance of people with autistic preferences, interests, & mannerisms *More research & services to better help autistic people cope with & overcome marginalization in society *Funding directed to the Department of Labor to help businesses better support autistic people *Research regarding how to help autistic people become entrepreneurs *To help autistic people further establish autistic communities. We need to be working WITH autistic people and not AGAINST them *More research and services to address co-occurring conditions in autism. This includes adapting and/or developing interventions suited for autistic needs (cognition, transportation, emotion, sensory, etc) *More research addressing insomnia, cardiovascular disease, diabetes, obesity. This research is NOT being funded for cognitively-able autistic adults because of major gaps in NIH funding priorities. Further, the NIH views autism as a ""primary disease"" and not as a ""marginalized group"" that experiences disparities in physical health and healthcare *To stop using conversion therapy on autistics at all ages Themes Addressed: Acceptance, Employment, Health, Housing, Inclusion |
| Anonymous |
Listen to us! Talk to us! I spent most of my time growing up expressing clearly what was upsetting to me and was dismissed as though I made it up. Most autistic people are often very honest and open about what they struggle with. And it doesn't take any interpretation. Just take us on our word. Each person is going to meet different challenges in society and so you have to be adaptive for those different needs. A lot of this will come down to how educated and understanding the various institution we go to (university, work etc). And again, it helps a lot of the people there already have an accurate understanding of autistic people. Sadly the most common case is no education or misguided education. If you are truly serious about greater understanding about autistic people, the best thing is to let autistic adults do the talking. There are so many advocates doing this work and they are an invaluable resource for our improved wellbeing. Themes Addressed: Acceptance, Inclusion |
| Anonymous |
Speaking generally, too much research focuses solely on children. There are many adults on the spectrum and there needs to be research and effort to assist them as well. As I just wrote, much greater effort toward employment of people on the spectrum is needed. In addition, it is essential, for autistic people and others, to work toward (1) raising the SSI asset limit; and (2) achieving Medicaid portability among states. Themes Addressed: Employment, Lifespan |
| Danielle Draut |
More transitional services. I think colleges need to a better job at this, since the parents are no longer in charge when the child turns 18. One of our son that went to Embry-Riddle did a great job with support services, the other child that went to App State they had assistance but was more difficult. I think finding out if they will have an unknow health issues would be helpful and what about relationships. I know my boys often still have difficulty with problem solving in groups of friends during conflict because their friends are typical and my son gets stuck with more black/white outcomes. Perhaps reaching our to large and small companies and helping young adults with autism find that employment match. Having employers have mentors and job coaching on board to help them navigate early on in their careers. More research on the young over 18 population and what happens as they get older and more on their own. How they will loss ( death of family member). Themes Addressed: Employment, Lifespan |
| Anonymous |
Autistic adults self-diagnosis' should be considered official as at this time, ASD screening and diagnosis is thousands of dollars and not covered by insurance. Autistic adults who self-identify Autistic must be treated respectfully when receiving medical care. Paperwork should be asked which method of communication they prefer so they may be treated appropriately. Pain is different for Autistic people. Workplaces should allow workers to wear earbuds/headphone/earplugs when appropriate due to noise sensitivities of the Autistic individual. Same with tinted glasses due to light sensitivities. Jackets for temperature sensitivities when work appropriate. Physically disabled Autistic people should be encouraged to work and asked how much they CAN work and paid an appropriate wage for their needs. Accommodations should be made of course. Housing must be accessible, safe, quiet, well-maintained. Disability payments must be higher. Themes Addressed: Employment, Housing, Inclusion |
| Parent |
There should be continuing education options that re life long. Job training, employer openess to work with adults on the spectrum, employer training on how to work with non neurological individuals. Programs like Medicare should not limit the amount of income such personnel can earn yo receive services. Placing persons in a position of existing below the poverty level to get help is almost cruel. Themes Addressed: Education, Employment |
| Anonymous |
We need research and policy to ensure Autistic people can safely access medical care and dental care. We need to reduce stigma about autism in the community by dismantling harmful autism stereotypes. We need more research into how non-inclusive environments and institutions contribute to poor mental health of Autistic people. Themes Addressed: Acceptance, Health |
| self-advocate |
We need more funding for adult autism services. Autism does not end after age 18. Here in Connecticut ,we have over 10,000 individuals on the waitlist for adult autism services. This is unacceptable. There needs to be more funding so that our adults get the services and support that they deserve. We desperately need more funding for adult autism services. Here in CT, we have over 10,000 individuals on the waitlist for adult autism services and we have enough funding to only take 5 people off the list a year. This is unacceptable. We also have a shortage of qualified services providers so it takes a while to get supports in place even after we get off the waitlist. There is also a need for supportive housing for autistic adults. Too many autistic people are living with aging parents with no where to go in the future. We need more employment opportunities and training for autistic people. We are capable of working and want to work but we need more support to get and keep jobs. Themes Addressed: Accessibility, Employment, Lifespan |
| Anonymous |
Schools need to revamp transition and prepping for adulthood. Adulthood w need greater training and funding- there service providers are not equipped to deal with level of need. Create training programs and have higher level of oversights. Greater funding into self determination initiatives for individual and their family with multiple options: apartment, shared home, resident. These places again need high level trained staff. Themes Addressed: Community, Education, Housing, Lifespan |
| Jane Kontoff |
More research is needed to understand how to best incorporate unemployed and under employed into their communities. Independent but supported living. Adult Services, Employment, quality of life across lifespan, community integration. Themes Addressed: Community, Employment |
| Emily, Mother of an autistic 4 year old. |
We need to protect our autistic children well into adulthood as well. Most autistic children just end up on the street if something happens to their family members. We need more centers for when they age out. More resources for autistic adults and more schools centered on therapies that are accesible to all tiers of families as far as income goes. These schools need to be quality. I know of a mom who had her autistic adult daughter malnourished at a center she was in. That is not okay. Themes Addressed: Education, Lifespan |
| Dr Pamela Hodges, MGH |
Need for job coaches, vocational training, life skills such as financial planning. Independent housing financial support vital for client to realize potential as an adult. Themes Addressed: Employment, Housing |
| Vanessa parrott |
The most important priorities and gaps currently are the lack of house of options, lack of adult care centers, and an almost complete lack of educational and employment opportunities Themes Addressed: Education, Employment, Housing |
| Stephen H Bradford |
See prior question. Enlarge the SSDI application process and subsequent granting of SSDI qualification to include the diagnosis of autism, with an accompanying significant impairment, as qualifying a person to receive benefits under SSDI. Increase programs for Autistic adults for community service or some type of community activity. Allow for autistic persons to increase their socialization. The state of PA has excellent support in this area but I understand many states do not. Themes Addressed: Accessibility, Community |
| Anonymous |
Services to transition to adulthood, social skills, job training Themes Addressed: Employment, Lifespan |
| Jessica Easton |
Job training, more case managers and housing. More creative options for housing beyond private group homes. Perhaps state owned small apartment complexes with 24 hour aids. Maybe states can look into renovating old motels/hotels Themes Addressed: Employment, Housing |
| Liz |
More focus on community support and acceptance would be very useful. More resources in improving life skills, social skills and other life necessities, especially in adulthood, are needed. Most resources available are for kids - but autism does not disappear in adulthood. Themes Addressed: Acceptance, Community |
| Anonymous |
Affordable housing options, educational and employment opportunities. Incentivize communities to support this underserved community Themes Addressed: Education, Employment, Housing |
| Cyndi Stephenson |
There is no support in college and there's zero support as far as therapies go for autistic adults who are not developmentally challenged. We could use support groups that link us together, peer groups guided by trained therapists. It's like once you hit 18 autism magically disappears and suddenly you're treated like you have a mental illness instead of a neurodevelopmental disorder. I have not found a therapist yet who helps autistic people with autism related issues, it's just a side note. And there's no clear diagnostic criteria for evaluating adults with autism who do not also have a history of developmental challenges. It took me years to find a neurodevelopmental psychologist who evaluated adults. I was 47 when I was diagnosed. My child was 3 when he was diagnosed. We have the exact same markers, his were just more pronounced because he was nonverbal. Themes Addressed: Accessibility, Education, Lifespan |
| Cindy Gutschke |
Vocational training and group homes with supervision. Many autistic children will be able to attend college with assistance, just as physically disabled persons are provided with those services. Themes Addressed: Employment, Housing |
| Brandi Timmons |
Transition age should be lowered to at least 12, possibly even 10. Parents should receive information as soon as a child is diagnosed about how to begin planning for transition into adulthood. Parents need to understand that there are things that they can be doing all along the way that will increase the opportunity for their child to become independent. Hands on skills training should be available to all students that want it during school. Students should leave high school with skills to enter into entry level jobs. Schools do not do a good job of preparing students for work. Themes Addressed: Education, Lifespan |
| Anonymous |
Offering employment development starting grades 9-12 and transitioning into adulthood with work study programs and education and incentives to employers to employ those with ASD would be a great start. The private employment sector has a large piece they're still missing when it comes employing individuals with ASD and the educational piece would be great start. Early Intervention/Education for school age children along with strengthened job development programs beginning in high school and transitioning in to adulthood. The financial piece always always always complicates it too much. The ASD already are at a disadvantage and for those who from a two income family at birth, there tends not to be any programs other than public school education. The parents are required to fund everything from birth-18 which places financial strain on already strained families who have a family member with ASD. Themes Addressed: Accessibility, Education, Employment |
| Angel Holladay |
Assistance past age 15 is needed, in education, communities, and in the work force. Families need help for long term assistance. Getting more info on how to help autistic adults in the workforce is highest on my list! Themes Addressed: Education, Employment, Lifespan |
| Rebeka Edge, Behavior Matters |
Healthcare with providers with more education in autism. Access to adult services, improved vocational training, community education and integration, incentives for in the job training. Themes Addressed: Accessibility, Health |
| Parent of Autistic Adult |
Inclusive programs and adaptive services at community colleges and universities. Job placement and career planning are virtually non-existent. Themes Addressed: Community, Employment |
| Eileen Nicole Simon, conradsimon.org |
Lifespan care is also needed for autistic people who learned to speak during the first decade of life, or later. As for non-verbal autistic people, ways for increasing vocabulary must continue through the lifespan. ""Figures of speech"" should also be learned and listened for in the speech of others. Meaningful avenues of employment should be looked for, and tried. Themes Addressed: Employment, Lifespan |
| Leona Schlesna |
I have no idea other than to offer work for those who are able to do so, and community housing for those who are able to live in such. Themes Addressed: Employment, Housing |
| Anonymous |
My son with ADHD, ASD, ODD, communication disorders, etc. is only 12 so I haven't experienced this yet but hope ALL of those services will be easily accessible. They are ALL EXTREMELY IMPORTANT AND VITAL! Adults with ASD shouldn't just be put into any job position they can get but need to be a good fit for the individual and company/business, etc. Themes Addressed: Accessibility, Employment |
| Anonymous |
Right now Children with Autism have more services available to them. We need to expand services for adults with Autism who need even more support and services as they navigate life and daily activities that they didn’t need to manage as children. We need more self directed services and independent living options where people with Autism can receive services in their homes instead of being institutionalized. Themes Addressed: Housing, Lifespan |
| Savannah W., Late in life, diagnosed autistic, woman, wife and mother. |
As previously stated: specialized therapies, help identifying our strengths, accommodated college or vocational training, independent living 101 class, job opportunities, special interest groups, community and familial support without pity or ableism, doctors who know what to look for and how to work with the unique experiences of autistics, care teams for pregnancy and postpartum stages, understanding supporters and friends, education and assistance, for us and those around us, to help us through life’s major changes and transitions. We have to learn how to balance the life that we want with the work we have to do to have it, maybe at a different pace, or in a different way, than a neurotypical would. We need more places to be accepted just as we are. We need people to listen, and not speak over us when it comes to our health and our livelihood. Autistic children become autistic adults and autistic adults become autistic elders. We go to college, have jobs, drive cars, get married, have kids, we grow old…autism doesn’t just stop at 18 like our support does, if we were even lucky enough to receive a diagnosis and support before that point. Themes Addressed: Acceptance, Community |
| Amy Morosini |
Education, vocational training and social integration programs Themes Addressed: Community, Education, Employment |
| Katlyn |
Community integration I think is a huge one. Humans are inherently social creatures, and chronically being lonely/isolated is not preferable. I think mental health considerations should be taken into account for all other forms of transition help; vocational schools should still allow for stimming and emotional regulation. Themes Addressed: Community, Employment |
| Michelle Hecht, Private Practice |
People with ASD need more supports for independent living skills (ILS), work, and social domains. There is an overemphasis on classroom skills for teenagers with ASD. Instead, teens and young adults with ASD need to learn to independently wake up and go to sleep, take their medications, perform basic self-care, make friends, communicate with peers, have intimate relationships, engage and sustain in meaningful work. All of this requires more intensive focus, during the teenage years, on these skills- with qualified staff. Themes Addressed: Community, Employment |
| Lauren Vogler |
Here in New Jersey, when a student with Autism reaches age 21, they are abruptly moved out of the educational eligibility system and into limbo. There are no options available for people with Autism who are not “high functioning” to continue their education, and the majority of adult day programs are little more than babysitting. Whatever strides the individuals have made in acquiring skills are easily lost without continuing education. This situation needs to be fixed by establishing opportunities for adults to continue to progress. Themes Addressed: Education, Lifespan |
| Maryse Hile, Parent of adult child with ASD who receives services |
What priority does each state place on physical well-being? Does it make it easier for its clients to choose healthier eating? Does it expect its day programs to emphasize physical activity? Ideally, all states would have well-developed/staffed vocational training programs for those interested/capable of participating. But given the constraints of funding and difficulties in identifying/maintaining community partners, sustainable volunteer activities should be created, especially for those for whom ongoing work is unlikely. Housing is the most pressing issue facing aging parents of children on the spectrum. Only those families with immediate need can expect to obtain housing without waiting for years, even in well-funded states. And in poorly funded states, even they can and do wait. Yet the only way parents can responsibly, gradually ""fade back"" and allow an adult child to learn from others is when they live outside the family home. The prevalence of this need clashes with available resources for addressing it. What if parents contributed a sliding-scale, monthly amount to house their adult child in a supportive residential setting? The child would have SSI for defraying costs (usually), and the parents could make a direct payment to the residence to offset expenses of facility maintenance, staffing, materials, etc. Even parents on tight budgets might find the payment is more than recouped by their newfound ability to work more, as caregiving duties are relieved. Themes Addressed: Accessibility, Health, Housing |
| Anonymous |
(1) Supports and programs for autistic students to attend college or trade school, (2) supports and services to obtain and maintain employment, (3) residential/housing. Themes Addressed: Employment, Housing |
| Patti Kennedy |
When the time for independent living (as is practical) becomes evident in the autistic person- more practical applications for HOUSING and WORK must be incorporated into community based programs. Supportive housing -(community based living in varying degrees of independence) and meaningful work that allows the autistic person to use their intellect and interests to contribute to a process or product is necessary. Farm living / working is often a very appropriate setting for people with sensitivities to over-stimulation and a connection to natural life. We must encourage more and more businesses to consider hiring autistic individuals by providing necessary on-boarding supports for both employer and employee. These programs exist but not in nearly enough cases and places. Liability and profitability challenges hold most employers back from incorporating these hiring practices. When employers stop seeing the hiring of autistic people as a community service and start seeing the value and skills these employees bring to the table as inherently necessary to their business - we will make progress. The days of 'Autism Awareness' are behind us. We need to promote the value of hiring Autistic workers. WORK WORK WORK Themes Addressed: Employment, Housing |
| A.K. |
Increase support for adolescents and young adults with ASD. More support to public school systems in this arena to support a transition to adulthood is key. Although there is a lack of supports for many families on Medicaid in several states or those with private insurers who deny therapy, there is an even greater lack of supports in the community for adolescents and adults with ASD. Vocational training, housing options, financial planning programs for parents to better prepare themselves for an adult child with ASD is key. Themes Addressed: Community, Employment, Housing |
| Jennifer Dapkins |
Vocation and housing Themes Addressed: Employment, Housing |
| Janay |
We need employers to develop a better understanding of how to work with employees that have ASD. They need to be more flexible with how they operate to incorporate the needs of individuals with ASD. Once students leave elementary school, as time goes on, there are fewer and fewer resources to support these individuals. We need the same amount of supports across the board. However, if they were placed in a learning environment to meet their needs, as time goes on, they may be more successful and need fewer supports. Though long term they will most likely need supports for housing and living. As I reflect on this question, what really comes to mind is that more research is needed on how to best teach these individuals, how best to help society to understand ASD, and create more employer knowledge and understanding of how these individuals may differ from the ""typical"" employee. There is a need for ""out of the box"" thinking to help these individuals integrate and be understood by those around them whether in schools or the workforce. Themes Addressed: Acceptance, Employment, Housing, Lifespan |
| Heidi Parr, Case Manager, Seven Counties Services |
There needs to be a specific autism waiver for children and adults with ASD, that starts upon diagnosis. There needs to be covered therapy services, nutrition, and behavior services. Educational opportunities need to be improved. Themes Addressed: Accessibility, Education |
| Anonymous |
Employment, housing, and community-based supports are all huge priorities and need more resources devoted to research and implementation. Themes Addressed: Community, Employment, Housing |
| Katherine Troyer, parent/guardian of adult with severe autism and severe intellectual disability |
Also need much research into programs for adults--vocational and day programs, residential models--that actually work, that actually provide therapeutic, enjoyable experiences and that provide the structure, intensive staff and professional support and nurturing relationships needed by this population. As adults enter old age, we need specialized residential options. So many of those elderly with severe autism end up languishing in nursing homes. Just as we need specialized, highly structured and intensively staffed residential options for adults with severe autism, we need the same geared toward and modified for an elderly population. For those adults with severe autism, I'd be much more focused on quality of life than so called ""community integration"". That means researching programs and residential options that actually contribute to a good quality of life. Let's not make assumptions or make stuff up about what's best for this population. Let's actually gather facts and information and make policy that way! Themes Addressed: High Support Needs, Housing |
| Suzi Hiatt, parent & service provider Capriccio Elite, LLC |
There are significant gaps in service for teen to adult years. Public schools tend to focus primarily on the younger children and by the teen years, there is little expectation for success or participation. Upon ending public school service, there is very limited funding for services. Themes Addressed: Education, Lifespan |
| Wayne, Parent |
We need all schools to teach ""Life skills"" from kindergarten up. They need to learn about shopping, talking, money, etc way more than job skills because many will never hold a meaningful job. We also need to provide housing across the country and a program that allows clients federal funds to spend on their own services under the supervision of a caretaker when needed. This would be similar to NY state's self direct program. Themes Addressed: Community, Housing |
| Carol Tatom, Autism Response Team |
Transitioning to adulthood can be frightening for families who risk losing all of the support they fought hard to receive during their early childhood and adolescent years. The wait list for housing assistance is currently over 20 years long. To be added to the waitlist with a appropriate outcome, families would have to add their children to the waiver before they are conceived!! Something needs to be done in this area to better assist families. I'm not sure if it's lack of funding or lack of community resources, but it is a problem that is spoken of often by autism families with older children getting ready to transition to adult years. I would also like to see affordable options for continued education or life skills programs. The few we have in our local North Texas area are so expensive that only the very wealthy can afford them and insurance will not pay for those services. It would be nice if a community-based nonprofit could be created to better assist this age group at a statewide level and I'd love to be on that board to assist with that project! Themes Addressed: Accessibility, Education, Housing, Lifespan |
| Tom Rickels, X-Excel (day services provider) |
Adult services and vocational training. Themes Addressed: Employment, Lifespan |
| Jill Goldstein |
Now that my son is an adult, I’m keenly aware of the lack in support after age 22, aka “the cliff” in services. He needs a meaningful day and the ability to live in his home community when I am gone. Adult services-housing in home communities. It is next to impossible to find and if you do, there is no guarantee that it will last. Themes Addressed: Housing, Lifespan |
| Sonya Emerick |
Autistic adults who can live independently almost universally need homemaking, meal prep, and errand services. This includes adults who do not have intellectual disability or physical disability. Managing sensory processing and communication differences is very consuming cognitively and energy-wise. Autistic adults who can live independently with supports are being overlooked, supports are not provided, and suffering and instability occurs. Inclusive education is really important. Look to MCIE/Think Inclusive. Look to Communication First. Look to the incredible YouTube webinars being produced by the New Jersey Autism Center for Excellence. Look to Shelley Moore’s work. People are already designing and innovating the kinds of shifts in programming and perspective we need for equitable education. We need to get this innovation to the table, fund it, learn from those already doing this work on the ground with students and clients. We are so resourced as a community to do good work if we can just figure out how to share and collectively benefit from the brilliance out here! Themes Addressed: Education, Housing |
| Colleen Allen, Autism Alliance of Michigan |
More effective programs are needed for students during the transition period that support individuals with certification and career-technical options. The transition from educational to vocation service is not seamless and ultimately leads to poor post-secondary outcomes for so many. Most colleges and universities do not have uniform, effective supports and services for students with autism See question 3 regarding need for safe, quality living/housing options for those who are more severely affected. While we agree that inclusion in community (living and working) is always the goal, for those with higher support needs, policies and funding are limiting quality options such as farmsteads and intentional communities. A close look at those policies that prohibit these options/choices is needed, in addition to increased funding to support them. While employers have begun to recognize the unique skills and talents of people with autism, the service system is still lacking vocational rehabilitation professionals who understand how to support our population on the worksite. We need to address the safety of individuals at risk for wandering and other risk situations that exist in the community. Mandated funding/policies for GPS devices, using technology that is adaptable to the unique challenges of people with autism. Safety plans with local law enforcement and first responder training that should be integral to existing, required training is needed. Creating the community supports/education/training that makes community venues accessible, safe, and inclusive are crucial to quality of life for our families. Technology that allows individuals with less significant care needs live independently needs to be explore and funded, as well. Themes Addressed: Community, Employment, Lifespan |
| Anonymous |
The Medwaiver provides quality of life services for both the client and family. The lack of funds and now limiiting criteria for autism is severely impacting the supports needed throughout their lifetime. Housing is almost non exisitant. With 1 in 54 children being diagnosed how will we house them? we can't provide with our exisiting community. Themes Addressed: Accessibility, Housing |
| Anonymous |
ABA Therapy programs for ASD young adults AND adults designed programs to help them use technology, social skills, employment, community based activities to gain self esteem and independence. Increase funding for providers who have group housing with on site staffing trained to work with ASD residents. Themes Addressed: Housing, Lifespan |
| Jan Carpenter, parent of two handicapped children |
1) THERE IS A HOUSING CRISIS IN THE US FOR DISABLED PEOPLE. Three out of four people with disabilities live at home with a parent, relying on them for all of their basic needs like preparing meals, hygiene, transportation and connecting to the outside world. These parents are aging and don't have options. 2) REVISE THE OLMSTEAD DECISION: Many states only allow for 4 disabled people to live together in neighborhood houses because of The Olmstead decision and fear from the feds regarding this. This housing model does not work for everyone. Disabled people should be able to choose their housing setting like every other American. Some disabled people would like to live in communities similar to 55+ communities with activities, transportation, nursing, and amenities geared towards their needs. I would propose letting 55+ communities include more than their 20% quota to include disabled. This would save money because both populations have the same needs and with this would also help with the caregiver shortage 3) Provide vouchers where the disable person could pick from different private and public housing options and communities. 4) Give businesses tax incentives to hire the disabled. 90% of disabled people are unemployed and want to work. This would also save on SSI benefits. 5) 40% of the homeless population is disabled so these incentives would help both populations Themes Addressed: Employment, Housing |
| Cheryl |
Once a severely non verbal child hits 22 not 18 there are finally some services to help a parent to care for that child. The first 22 years of their life the State/Government just ignores them. If you are lucky enough to be born into a rich family then they might have a better chance in this world. Health and quality of life. Most severely autistic children because there is no services for them and the parent to care for them until they are 22 have been living in extreme poverty probably for most of their life. Quality of life in extreme poverty isn’t very good. At 22 funds are finally offered to help with basic needs. So now they can move from extreme poverty to regular poverty. The Government/State does not make it easy for severely autistic people to get help and maintain it. Everything needs to be updated on a yearly basis not every 30 years and it needs to be simplified. Stop making everything so difficult for this community. Medicaid isn’t the best health coverage. Good luck finding qualified doctors that will accept Medicaid. They say Medicaid pays very poorly and not in a timely manner. When you live in poverty you usually live in a high crime area. Themes Addressed: Accessibility, Health, High Support Needs |
| Parent |
Focus on health and quality of life across the lifespan, adult services, including education. Themes Addressed: Education, Health |
| Lori, Guardian and speech therapist |
Adult services with people on the autism spectrum are almost non-existent in some communities. There are few doctors and specialists who are able to advise parents and guardians on various issues. For example, a young man whom I am guardian of has weight issues related to his extreme food aversions and it was recommended he see a nutritionist. However, there are no nutritionists I have found that know about this issue. Themes Addressed: Accessibility, Lifespan |
| Denise Wildrick, Autistic Adult and Parent |
Adult autism services across the board. Mental health across the board. Abuses, manipulations and the like of those with Autism as they exist in an adult world. It is so much more than is currently reported and we need to do something about it. 1 on 1 services with decent wages is really the answer to theses problems. Along with appropriately structured housing. Wages to those with disablities that are not less than minimum wage and split between them and their vocational program. Treat them with respect and dignity as individuals that can speak for themselves and advocate for themselves. You had better have people with autism give in person comment and not just here via online public comment. Nothing for us, without us. Themes Addressed: Lifespan, Employment, Health, Housing, Inclusion |
| Nancy Kearney, Parent adult autistic man in Massachusetts |
Transition into Adult services, community integration and HOUSING (big) Themes Addressed: Community, Housing, Lifespan |
| Meg P |
Make sure they have a good support system. We shouldn't have to walk a tight-rope without a safety net. Also get rid of a corrupt system where people have to rely on health insurance through employment rather than have a right to healthcare access. Themes Addressed: Accessibility, Community |
| Eleanor Wildflower |
IACC must work to remove barriers for adults seeking diagnosis later in life. They must also work to improve the quality and availability of home and community based services and make it easier for autistic adults to find gainful employment. Autistic adults are disproportionately likely to suffer abuse at the hands of caregivers, to be institutionalized, and to live in poverty. Themes Addressed: Employment, Lifespan |
| Anonymous |
These are critical. I honestly think this might be the most important area of all so far. However, I would also want to be sure that any focus or future research/policy is neurodiversity-affirming. Policy issue of funding for autistic-supporting interventions in adulthood. Themes Addressed: Acceptance, Lifespan |
| Elizabeth Bartmess |
Adults with ASD desperately need psychotherapies for complex trauma that take into account the fact that abuse for us is not ""over"" - we're often targeted for abuse and mobbing at work and school and in social settings even as adults. We also need interventions for practical daily living issues that come up like inability to consistently make meals for ourselves or inability to handle complex paperwork due to executive dysfunction. Research on pregnancy, childbirth, and parenting while autistic—it's really notable that ""adulthood"" in this question doesn't cover the extremely common experience of parenting! Research on how to identify and appropriately refer adults with ASD when they show up in therapeutic and medical settings. Research and education on how ""standard"" communities—for example, workplaces, churches, schools, etc—can globally support autistic adults without requiring them to be diagnosed or to disclose a diagnosis. Access to housing and benefits that doesn't require navigating complex paperwork. Themes Addressed: Accessibility, Community, Health, Housing |
| Justin Pimentel |
Providing resources that enable autistic people to have equal opportunities as their peers relating to education, salary, health resources and more should be the goal. More research needs to be focused on directly improving the lives of autistic people, by improving support, accommodations, and the resources available to them. Themes Addressed: Education, Employment, Health |
| McKenzie Hanson |
Art, Music, Math, Science. Apprenticeships, Assigning mentors, life coaches, therapists, advisors for finances, budgeting. Expanded access to community programming for basic life skills made available to all. Libraries already do this but how can we encourage the autistic community to take advantage of resources? Maybe it’s an app that connects you to local or online resources to explore for differing needs and this is provided for free access to learning or community engagement opportunities. Therapists should just be covered in taxes, for everyone. It would help so much in actualizing the nation and screening for autism. Themes Addressed: Accessibility, Community, Coordination |
| Ryan |
ask autistic adults; listen to them; and implement what they say require and only fund Community Based Participatory Research more services support opportunities after they turn 18 or 22 and leave school more supported employment/employment accommodations more supported living opportunities more research about what it means to be retired or elderly and autistic and find out from them what they want more and better mental health access more opportunities to earn a living wage caregiver help/support; personal assistant help/supports Themes Addressed: Employment, Inclusion, Lifespan |
| Helen Leung |
Increase funding for adult services and housing support, do more research into WHY Autistic people die earlier, increase funding for community integration programs Themes Addressed: Community, Lifespan |
| Tosha |
End arbitrary laws that encourage the filicide of innocent autistics and instead encourage the prosecution of their oppressors. Have their educational accommodations in place, ensuring the school will work with them with no hesitation. And have them advance to an inclusive community college where they will be favorably regarded and given many different options on how to advance in society. Then hopefully they can find an inclusive workspace in which to showcase their natural talents and live a peaceful life. Themes Addressed: Education, Employment |
| Andrea Grover |
We also need research on workplace accommodations for autistic people. This is the second-highest priority for autistic people. Autistic kids grow up to become autistic adults. There are very few services that specialize in supporting adults, including workplace accommodations, career counseling, and literally everything else listed here. We need more research on autistic people's experiences of aging so we can be better prepared to support changing needs and abilities as we age. Themes Addressed: Employment, Lifespan |
| Brittany Diane Daniels |
As an autistic woman myself, I need more research done on needed live long supports for autistic people and getting health insurance coverage extended to autistic adults over the ages of 18, 19, 20 and/or 21 years old, because I am beyond tired of having to go through a high deductible state health insurance plan here in Georgia where it will make me pay $75 until I meet a $2500 in network deductible or $5000 out of network deductible to be able to get needed speech therapy and the fact non of my other in person therapies are covered as well. As an autistic woman myself, I need more doctors, nurses and mental health psychiatrist and psychologist to learn about autism and mental health disorders together along with understanding how we react differently, meaning we tend to have more reactions to prescribed medications than the normal population. I also need for pediatric doctors/nurses to help autistic people who have aged out of being able to see a pediatric doctor/nurse to help us find an appropriate regular doctor/nurse we can see as an adult for at least a once a year checkup. I also need there to be better supports for autistic people trying to or already have reasonable accommodations through disability services at any colleges/universities here in the USA. By making sure we have the needed supports we need to live in the community instead of a nursing home or institution. Helping us get jobs that pay good for autistic people not getting any SSI and/or SSDI and Medicaid and/or Medicare and keep those jobs. We also need better help going through job interviews as well. Themes Addressed: Accessibility, Education, Employment, Health |
| Shannon Borg, autistic parent to autistic children |
Public education in businesses and school about what autism looks like and what it doesn't look like. More information for businesses and workplaces on how to support autistic employees and making adaptive work places. Adapting work schedules so autistic people can work on time frames that are helpful not exhausting. Support for adults in general with all aspects of life. Budgeting, housing and all the adulting activities that we are not ready for. Themes Addressed: Community, Employment |
| Anonymous |
Better policies on getting disability payment. Increase in transition services to best support autistics throughout the lifespan Themes Addressed: Accessibility, Lifespan |
| Asa |
Transition and adult services, health and quality of life Themes Addressed: Health, Lifespan |
| Helen English, Children's Home of Wyoming Conference |
Employment and educating the employer and co-workers on how to work with someone with autism is very important. People need to grasp the concept of working with someone who doesn't understand social que's. Patience is required. Housing is another big issue. Where do they live when their caregivers pass? We need housing and staff who trained in working with non verbal people. They need to know all the special needs of each person like who has significant sensory needs, who has trouble with loud noises and what to do if they live in an area where there is a lot of noise. So where the housing is located is also very important. Themes Addressed: Employment, Housing |
| Anonymous |
The questions should expand into areas of higher education, supports and services in the area of work for people with autism. Continuity of health care supports when they enter adulthood, and that they have legal services so that they know their rights to legal custody, when they reach adulthood. With your support, we can give people with autism the support they deserve. Themes Addressed: Education, Employment, Lifespan |
| Anonymous |
The IACC Strategic Plan objectives track research investments, funding and information related to seven topical areas. The projected increase in the population of individuals with autism demands solutions that benefit the individual, families, service providers and the broader community by providing life solutions with employment and societal integration. IACC should advance services to autistic adults after reaching the “services cliff” to build upon acquired the life skills to enable meaningful employment with dignity and purpose. The existing housing and supports services provide living accommodations but enable a trend towards “institutionalization” unless they also address broader quality of life needs of community accessibility, meaningful employment, life span healthcare issues and community integration. IACC should advance research in areas which the Portfolio Analysis Report identified as consistently less funded than other areas: Services, which includes evidence-based practices in community settings, received 5% of funding; and, Lifespan Issues, which encompasses research to address the needs of transitioning autistic persons to adulthood and throughout the lifespan, received 2% of funding. IACC should address gaps in research and programs that build a bridge between the autistic world and the broader community through programs that bring residents from home-centered, parent-based care via pathways to independent living with meaningful employment. IACC broadened the objectives to incorporate ?quality of life? attributes into the research/services areas. To ensure consistent and effective implementation across all areas, IACC should explicitly define ?quality of life? in a holistic manner to include safe residential care with supports and services; effective and evolutionary healthcare beyond basic physical and mental health to lifespan care with aging related co-morbidities; training beyond basic life skills to include transition to independence, community access and navigation, social engagement; cultural enrichment and gainful purposeful employment; and, equity in community opportunity, accessibility, acceptance and integration. IACC should retain the current strategic plan structure to assure continued clarity of policy objectives and continuity of outcomes, with changes made as needed to cover underserved issues and gaps in services. Beyond Parent-based Residential Care The projected increase in the population of individuals with autism demands solutions that benefit the individual, families, service providers and the broader community by providing life solutions with employment and societal integration. IACC should advance services to autistic adults after reaching the ?services cliff? to build upon acquired the life skills to enable meaningful employment with dignity and purpose. The existing housing and supports services provide living accommodations but enable a trend towards ?institutionalization? unless they also address broader quality of life needs of community accessibility, meaningful employment, life span healthcare issues and community integration. IACC should advance research in areas which the Portfolio Analysis Report identified as consistently less funded than other areas: Lifespan Issues, which encompasses research to address the needs of transitioning autistic persons to adulthood and throughout the lifespan, received 2% of funding. IACC should address gaps in research and programs that build a bridge between the autistic world and the broader community through programs that bring residents from home-centered, parent-based care via pathways to independent living with meaningful employment. IAAC should endorse programs which advance partnerships between housing developers and host communities to provide affordable housing, job training and employment. The benefits would be to increase the availability of affordable housing, provide income that enables the individual to become independent and self-supporting; advance a skilled and trained workforce which allows employers and the broader community to benefit from the unique skills and abilities of a neurodiverse workforce; and, better integrate the autistic individual with the broader community. IACC policies should advance funding incentives which promotes partnerships between housing developers and host communities to increase the availability of affordable rental housing; provides tuition assistance for vocational training; and, leverages partnerships between housing providers and academic communities to develop programs to develop vocational skills of the neurodiverse population. The IACC Strategic Plan should address gaps research, data and performance measures related to employment that leverages the unique skills of the autistic individual, and advance solutions which connect individuals with high technology jobs that provided meaningful income and needed services that benefit the host community. IACC should advance research to remove the barriers to participation in a vocation, develops the individual?s unique skills for employment, and better integrates the autistic individual into a neurodiverse workforce within the host community. The interventions should begin early while the autistic person is in home-based care and transition from basic life skills training to advancing social skills, social engagement, vocational aptitude recognition and development, and community integration. IACC should address gaps in research and performance measures to include technology to promote safety, health and well-being, accessibility and sensory friendly features; technology to promote best practices for vocational training, job preparation and support; performance measures to match the individual?s aptitudes will job skills; identify and maximize the inherent skills that can be leveraged to support development to full potential; and, provide a continuum of services to assist the individual on the path to independence through integration with the broader community in a vocational setting with a neurodiverse workforce. IACC should advance partnerships between the housing/employment providers and the academic/research communities to develop programs which identify and develop vocational skills of the neurodiverse population, by leveraging and using existing facilities and employment programs as ?living laboratories? to gather the data and measures which define successful techniques and better guide future programs. IACC should endorse programs to expand healthcare and services to better educate and train health care providers on treatment and care of autistic individuals over life span issues, including research and services to address aging related co-morbidities; and, programs to train first responders and public safety personnel on how to recognize and respond to neurodiverse individuals. Themes Addressed: Community, Employment, Housing, Lifespan |
| Cheryl Wilson |
My daughter is 30yrs.old now the law really needs to change it needs to be a lifespan programs because after they graduate high school there isn't nothing out here for them my daughter is on level 3 which is the lowest level an the most challenging level she's nonverbal,aggressive behavioral ,intellectual disabilities,destructed behavioral the stress that family are under like mines really needs the help and support their child was receiving in school for the lifespan of the adult/child Themes Addressed: High Support Needs, Lifespan |
| Anonymous |
Adults are left out of this equation usually. Be more specific. Same w any emphasis on women, minorities etc Accommodations that ACtually work in college settings would be HUGE. Tons of autistic folks drop out. Suicide prevention. College course accommodations including extended end dates/flexibility. Same in h.s. Autistic mutual learning groups. Learning from autistic people. Themes Addressed: Lifespan, Education, Inclusion |
| oldladywithautism, autistic elder |
Simply finding and training a cohort of workers who are willing to care for older adults in any manner will be a challenge. Institutions of all kinds are under severe stress and there is not enough help in terms of employees to make good care possible in almost any medical situation from doctor offices to hospitals, to nursing homes and institutions, care homes, etc. It is already a crisis. don't forget that all autistic people are not children. There are more autistic adults in the USA than there are children and most of them remain undiagnosed. Diagnostic services for all ages and better diagnostic criteria can help the burden on social service agencies by allowing many adults with struggles enough self understanding to be able to self accomodate and seek help for social struggles through counseling, support agencies, and other services in their communities. Themes Addressed: Accessibility, Health, Lifespan |
| Anonymous |
Self-regulation support, transitioning support into tertiary institutions and workplaces, supporting goals related to autonomy and living situations, supporting Autistic individuals with high and complex support needs. Themes Addressed: Community, Employment, High Support Needs |
| Allison |
As autistic people grow up and age, their services should age with them. If they go to college, a counselor should help them get whatever accommodations they need. If they are working, their workplace must know what accommodations are needed. Since social situations are difficult for autistic people, they may need assistance during job interviews. When choosing a job, the workplace environment and how much interaction with coworkers and the public should be considered. For those who cannot work, other ways of engaging with the community should be set up. If new caregivers are needed, they should start before the old ones leave if possible. Themes Addressed: Education, Employment, Lifespan |
| Anonymous |
It's important to understand how the needs of people with ASD change as they transition into adulthood and start living adult lives, and as they age and reach the end of their lives. It's important to ensure that they have the skills necessary to participate in adult life, and it's important to identify which skills they struggle with so that they can receive support in exercising those skills for as long as they will benefit from that support. It's important to ensure that they have access to the same opportunities that people without ASD have access to and can earn adequate income. Themes Addressed: Community, Lifespan |
| Ren Koloni |
Services for autistic people cannot be focused solely in schools. We need services throughout our lives. Part of the issue is that autism is often portrayed as a childhood disability. This means allistics do not expect us to need services as adults, and autistic people are not prepared for transition to adulthood. Access to educational and vocational counseling that honors and utilizes our strengths as autistic people - our sensory capacities, our special interests, and our cognitive patterns - is crucial. As often as possible, we should be supported by other autistic people, or at least autistic people should be visible in these programs. HCBS should not only continue to be a priority but should be expanded to people who do not realize that they have access to it. I reiterate the importance of addressing high suicidality and autistic burnout as prevalent crises in our adult lives. Themes Addressed: Community, Education, Employment, Lifespan |
| Anonymous |
How can we train mental health professionals to feel comfortable working with autistic adults? What tools are available to support them in learning about autistic body language and communication styles? What tools can be created to support autistic individuals in retirement? What can be done to increase accessibility of healthcare environments for autistic individuals? (Also, almost all other public environments as well?) What changes to the designs of public spaces would allow them to be inclusive of people of all neurotypes? How can employers be trained to most effectively support their autistic employees? How can we reduce the stigma against autistic individuals so that autistic employees can work safely with their employers to create work environments that support their sensory and communication needs? How can we develop access to services that function for autistic individuals? (service that require phone do not work effectively for many autistic individuals) How can teachers, administrators, and curriculum designers be trained to create curricular materials and learning experiences that support learners of all neurotypes and take into consideration that students may need to demonstrate their learning in different ways, based on their communication and sensory needs? How can employees who interact with the public be trained to effectively interact with individuals of all neurotypes, including autistic individuals? How can they be most effectively taught to interact with individuals who have different communication needs? How can institutions be effectively modified to support adult and aging autistic individuals? What resources are necessary to support autistics through adulthood as they age? How can we design medical facilities to function most effectively to support autistic individuals? How can medical spaces be created that create less sensory distress? How can employers be trained in ways to support autistic employees? They need access to information that goes beyond out of date stereotypes and teaches employers to work with their employees to support their sensory and communication needs. Themes Addressed: Acceptance, Education, Employment, Health, Lifespan |
| Anonymous |
1) Provide a range of supported housing options. Some people will need a little support; some will need help with almost all aspects of daily living. 2) Provide supported employment for those who can and want to work. 3) Provide recreational and social options so people don't sit around watching TV all day. This could include virtual options as well. 4) Prioritize belonging in the community, however that looks for different individuals. 5) Help families plan for the future of their autistic children as they age. This may include paying families to care for their adult children, since the level of care their adult children need often precludes working outside the home. Themes Addressed: Community, Employment, Housing, Lifespan |
| Anonymous |
Transition, housing, community integration. Themes Addressed: Community, Housing, Lifespan |
| Anonymous |
Suicide rates for autistics are very high, so consider that when you think about premature mortality. A big part of the suicide rates is that a lot of autistics are square pegs trying to cram themselves into a round hole, usually because neurotypicals are pressuring them into doing so. I talked about barriers for autistic parents in my answer to the last question, and even mentioned narcissism. If a social worker is told that a person is an unhealthy narcissist, then don't place the child with them and have them be a supervisor even if they're kin. Especially if it's a newborn baby, and even if the basic needs are being met. If you want reunification, then don't set the parent or parents up for failure, and offer accommodations. I wish finding nice housing could be easier to afford, and that I could graduate from college with all of the services I need (which I'm not getting at my community college) having been met. Full-time employment would be a dream come true, but not all autistics are good in the STEM areas (I'm terrible with those areas). Businesses that aren't related to those areas need autism employment initiatives too. I'm sure there are other autistics with similar problems. Themes Addressed: Acceptance, Education, Employment, Health, Housing |
| Sandra Lee, Autistic adult |
I already covered much of these in my answers to questions 5, but it bears repeating: For me, the most pressing need is for research into autism and aging. Most autism research focuses on children for some reason, even though most autistic people are adults. Among other things, those of us in middle age and older are noticing changes, particularly in our sensitivities (which often seem to increase with age) and executive functioning, but we're limited to sharing anecdotal evidence among ourselves. We need to know what to expect, in order to plan for our futures, or to recognize age-related cognitive changes that are ""normal"" for us vs, something that requires medical investigation. we desperately need a better understanding of autism and aging, as well as better, more informed support in education and in the workplace. Themes Addressed: Education, Employment, Lifespan |
| Anonymous |
Autistic adults who did not receive a diagnosis in childhood often struggle to find a clinician who can competently diagnose autism in adults. Autistic people often have unique strengths that could be an asset in a job, yet they are underemployed and have a high rate of unemployment. What changes to hiring and employment practices would create inclusive workplaces for Autistic people? Some Autistic adults go through a cycle of excelling at school/work, burning out and having to quit, excelling, and burning out again. What types of supports can help prevent Autistic burnout, and how can Autistic people recover from burnout? Many Autistic people are sensitive to noise, yet few Autistic people can afford to buy a single-family home. Therefore, many Autistic people are living in multi-family dwellings and apartment complexes where they are constantly exposed to the sounds made by their neighbors. For Autistic people living in Adult Foster Care homes, the situation may be even more extreme. What is the impact of these noisy living situations on Autistic mental health? Themes Addressed: Accessibility, Employment, Health, Housing |
| Anonymous |
Related to answer to Question 5; Our 32 year old son with autism whose intelligence does not fall low enough to qualify for supports, services or housing even though his behaviors and needs prevent him from being employed, managing life skills, obtaining housing or receiving support to help him manage life skills. This population has totally fallen through the cracks of a system that provides more for those who can function more independently than he can even with lower intelligence. Themes Addressed: Inclusion, Lifespan |
| TP |
*Additionally I think it is critical to get a post-diagnosis program in order to support the integration with identity as an extreme minority in this society who is now a key target for abuse-Again Ideally run by Autistic people themselves ( read: therapists are NOT helpful here) who actually understand the paradigm we are dealing with... and who know the context fully... *Also UBI (universal basic income) is also always a good one to have on the table- food/vitamins/shelter-this would instantly change the world as ASD folk actually are extremely productive more so than the average person, when we are run by different principles than the ones imposed on us.... Deffinately edicational programs for neurotypicals on the double empathy problem. We aren't less than- we are in a different paradigm, and one that neurotypicals do not have empathy for and are ill suited for. Unfortunately we become the only ones who compensate and that is when violence is most likely to happen- when there is lack of education on the otherside for Neurotypicals...Extremely critical once again to prevent misunderstanding and violence and mislabeling and underestimation of inherant capabilites because of lack of knowledge of how ASD people actually thrive and function and how different our needs are compared to the rest of the population.....Programs to help us with our true needs, not ones that others expect of us...would be unbelievable for the economy and innovation....Currently we do not have such a voice...and worse are mislabeled... Better privacy protection for ASD folk- better diagnosis help and suicide prevention for women and girls...better detection and education for professionals.. Themes Addressed: Accessibility, Community, Inclusion |
| Anonymous |
In my experience transition is poorly done, there is no real vocational training and no real employment. Socialization is still too limited. Themes Addressed: Community, Employment, Lifespan |
| Nicholas Elizabeth Faby |
More alternatives to conservatorship/guardianship, more access to free/low-cost adult diagnosis, more affordable supportive housing for disabled people, and improving SSI/SSDI and preventing discrimination in employment. Themes Addressed: Accessibility, Community, Employment, Housing |
| Aishah |
6. The main thing is to not treat adults that are autistic as if they can’t grow and change. We are not stunted humans we are diverse and unique. Meeting the needs of adults with ASD is taking the time out to validate a unique human experience while also having ways to provide supports whether that’s especially trained service animal or having a specific hotline that autistic people can call when they fall into an inevitable suicidal ideation fit. Having a hotline for autistic people would significantly help people on the spectrum when we need to talk to somebody who understands what we’re going through because in my experience most people that you will encounter in your life do not understand what autism is and how to help somebody with autism when they need help. I’ve had trouble personally getting especially train service animal because I am not blind but I have autism and hearing issues and a lot of emotional regulation issues and as an adult who has lived on their own by themselves having especially trained animal and those dark lonely times as an autistic person would have significantly helped me and probably prevented some of my lowest moments where my life almost ended. It goes beyond an emotional support animal with autism. (I am doing text to speech on these answers due to burnout so please excuse any typos) Themes Addressed: Community, Inclusion |
| Autistic Self Advocacy Network |
Question 6 is the only question that specifically focuses its research objectives on lifespan related issues. Unfortunately, Question 6 only accounted for only 3% of all funding for autism research in both 2017 ($9.5 million) and 2018 ($13.3 million). In total, Question 6 received the smallest total amount of funding amongst the IACC Strategic Plan questions. Of the small amount of funding that Question 6 received, 62% of it was allocated towards “research supporting the transition to adulthood.” While ASAN agrees that the transition into adulthood is a critical period, funding imbalances shortchange other critical lifespan research. Autistic people undergo the same range of life events as non-autistic people and spend the majority of our lives as adults. Our needs in mid-life, our experiences with marriage and parenthood, and the ways our health and disability might change as we age, all deserve serious consideration, research, and support. ASAN recommends that the IACC prioritize the development of longitudinal aging-related studies of autistic people of a wide variety of backgrounds, socioeconomic statuses, genders, and ethnicities, examining how autism manifests over the lifespan, what outcomes and barriers are experienced by autistic adults, and how these things are impacted by race, gender, access to services, and other factors. Many autistic adults were not correctly identified as children, and lifespan research should include this population. Themes Addressed: Inclusion, Lifespan |
| Christina Krasovich, Collaboration of Autism Society Affiliates in Wisconsin |
Approximately 5.5 million autistic adults are living in this country, yet much of our focus remains on autistic children. We must address issues specific to the adult population to better support them–social isolation, parenting as an autistic adult, aging, grief, etc. Definition surrounding what geriatric support looks like in the autistic community is missing. There is a troubling lack of housing available for adults with disabilities. This issue is crippling for many families and must be addressed. Expansion of post-secondary educational options and supports is needed as is increased vocational support. Resources for caregivers trying to create pathways for their loved ones with no clarity and little support. Options for people in crisis. Address system limitations that keep autistic individuals in poverty by forcing them to limit earnings so as not to lose social security funding, etc. Themes Addressed: Accessibility, Education, Housing, Lifespan |
| Martina Kuzenski |
The best way to meet the needs of autistic adults is to have supports and services catered to adults. As previously commented, there is a lack of supports for adults due to the myth that autism can be outgrown in adulthood. Not only is this not true, but there are adults who are getting diagnosed as autistic as adults. There also needs to be stronger supports for autistic people with low- to medium-support needs. Regarding employment, 80% of autistic people are unemployed or underemployed with most autistic people being told to not disclose their autism due to stigma and lack of awareness. There needs to be employer-focused education about autism and the strengths while simultaneously training on the supports needed for the best environment. Autistic people can do jobs other than cleaning-based jobs. Themes Addressed: Employment, Lifespan |
| Anonymous |
housing for those with more complex communication and behavioral needs. employment for those with complex needs funding for social /recreational programs to reduce isolation, loneliness evidence based practices for adults on the spectrum housing for adults with behavioral challenges employment for adults with severe communication and employment challenges Themes Addressed: Employment, Housing, Lifespan |
| Anonymous |
This is very important, especially keeping ABA out of it. It is unrealistic to prepare students for a highly controlled institutional life where someone is always there to reinforce their behavior, because our world is not like that. Doing that only prepares them to live in further institutions, and never to reach their full potential. We need more supportive decision making research, self-determination theory research, and pathways for youth who did not get a high school diploma to go to college and/or trade school if they want. I am working with a student right now who needs 24-7 support, cannot speak, and is really wants to go to college. But, his school district has used lawyers against his family to stop him from completing a regular high school diploma. If he has the support workers he needs, he can succeed. But if people are too cheap and ableist to give him those supports, he's lost to frustration and heartbreak. Themes Addressed: Community, Education |
| Jessica Hardy, Independent |
As an adult with ASD, I find that getting on the spot advice for everyday situations, especially social and professional skills to help me network, grow as a professional and cope with the everyday struggles of being an adult in workplace. Just having a social emotional therapist or counselor that can help me process or deescalate an issue that might snow ball and detract from my effectiveness in the workplace. Someone to represent me if I have a meltdown, or confer with my employer one-on-one if I feel that I am being discriminated against because of a communication breakdown or ""weird behavior"", or if someone calls me ""stupid"", or tells me to ""grow up"". Someone to help me get my meltdowns back to zero times a year. Just like how Middle School and High School have Social Emotional SpEd, I believe a similar resource should exist for Adults. An effective, vetted, and widely available program or practicing office that can provide guidance, training, feedback (when trying to mentally process of situation), and professional representation that deters toxic work environments due to communication breakdown or discrimination. I am a biracial (Black and Native American) female, age 32, and I struggle to find resources available in Georgia that give immediate crisis intervention over the phone, functional tools and resources to help me thrive in the workplace and sometimes home. I have a hard time facing discrimination in the workplace and I rarely disclose my condition out of fear that it will hinder me rather than help. I need efficient awareness, coping tools, counseling and representation to prevent discrimination and communication breakdowns in the workplace so I can earn a living and be the productive member of society that I KNOW I am everyday, not just on a ""good day"". Themes Addressed: Community, Employment, Lifespan |
| Anonymous |
Adult services, premature mortality Themes Addressed: Health, Lifespan |
| Jennifer |
We need more programs in order to transition into adult eduction, employment, learning life skills, housing. More college programs should be available for those on the spectrum, as well as scholarships. Themes Addressed: Education, Lifespan |
| Anonymous |
adult services, vocational training Themes Addressed: Employment, Lifespan |
| Tom Whitehurst |
While many of these issues are important, by far the most important over the next 20 years is that we need dramatic investment in housing/communities for the adults with real (severe) autism who are currently living with aging parents who won't be around forever to care for them. First and foremost, the IACC needs to understand that people with high functioning ASD do not speak for the more severe, real autistic, adults. These self advocates have no comprehension of what adults such as my son, who has minimal verbal skills, need and want. The IACC needs to recognize that ASD is not some blessing that many of these self advocates claim. Those people who go around dictating how my son should live and be treated are causing great damage to the potential for adults with ""REAL"" autism to live in a safe and secure community where they can thrive. The number of adults with real autism is growing rapidly, but the housing options are barely growing thanks to some really bad people, who think that they are helping. Themes Addressed: High Support Needs, Housing |
| Corrie Whitmer |
As I mentioned previously, it is important that autistic children have access to integrated, accommodating classrooms. Autistic college students need easy access to healthcare and appropriate accommodations. As adults, autistic people need access to support for job searches and vocational training, as well as regulations that protect their rights in the workplace. Intellectually disabled adults need access to robust life skills education, plain language resources on various parts of adult life, and plain language resources on various healthcare topics. Autistic people also need protection from housing discrimination and resources for when the owner of a rental property ignores their sensory needs. Additionally, existing resources such as those for homeless people, sexual assault survivors, abuse survivors, veterans, et cetera need to build in the inclusion of autistic people, including intellectually disabled, physically disabled, and nonspeaking autistic people. Given the autistic suicide rate, suicide/crisis hotlines really need to train their staff on how to respond appropriately to autistic meltdowns and shutdowns, and how to deal with semispeaking and nonspeaking callers. Themes Addressed: Community, Coordination, Education, Employment, Housing |
| Peggy Hamby, Speech Language Pathologist |
Too many students are considered college and career ready because they get good grades in high school. The attrition rate in college is huge because of the lack of executive function training to help with organization and problem solving. So few people within the school system are able to provide this training due to lack of funding and shortage of personnel. These are the individuals with the highest earning potential but they are often un- or underemployed. The lack of supportive living situations for children with autism and mental health disorders has a severe effect on our community as a whole to benefit from their knowledge and skills. Investment in this population will bring high returns. Supported employment with qualified coaches would bring a large return on the investment. Financial support for companies that employ individuals who need extra coaching should be made available as well. Themes Addressed: Education, Employment, Housing |
| Richard Conn |
Often adults on the spectrum age out of their support system. Parents die or are unable to help their child and no other family members are available. Community based housing which incorporates essential services such as meals, social work and support for health care and social interactions is almost completely unavailable. Many of these individuals will become isolated, homeless, unnecessarily ill, enter the criminal justice system or the mental health system. Housing based on community with supportive services can offer a life of inclusion and both mental and physical health. These facilities could combine and share individual’s budgets for services helping to provide more services to more individuals. Please focus on adult housing with supportive services as a priority Themes Addressed: Community, Housing, Lifespan |
| Bek |
There is a lack of good data on the state of nonspeaking autistic, transition-age youth and adults, both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of nonspeaking autistic people: (a) are institutionalized, jailed, and imprisoned; (b) languish on Medicaid Home and Community Based (HCBS) waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to address each of these moral and human rights challenges. Themes Addressed: Accessibility, Lifespan |
| Rachel Zanoni |
There is a lack of good data on the state of nonspeaking autistic, transition-age youth and adults, both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of nonspeaking autistic people: (a) are institutionalized, jailed, and imprisoned; (b) languish on Medicaid Home and Community Based (HCBS) waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to urgently and comprehensively address each of these moral and human rights challenges. Themes Addressed: Accessibility, Lifespan |
| Anonymous |
There is a lack of good data on the state of nonspeaking autistic, transition-age youth and adults, both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of nonspeaking autistic people: (a) are institutionalized, jailed, and imprisoned; (b) languish on Medicaid Home and Community Based (HCBS) waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to urgently and comprehensively address each of these moral and human rights challenges. Themes Addressed: Accessibility, Lifespan |
| Anonymous |
Transition and dignified employment, housing in a safe community and community integration Themes Addressed: Community, Employment, Housing |
| Anonymous |
Universal basic income Actually affordable housing for someone existing on $1k or less in benefits. Freely available, not aba obviously, text and telehealth based therapy and other medical services. Premature mortality is the result of poor support over a lifespan. Quit stealing ""high functioning"" disabled labor because most autistics don't have behavioral healthcare and can't always know that they struggle because they're autistic. Quit using words that select for us in general hiring processes and allow us to work jobs that we are passionate about if we must work at all. UBI would solve a lot of our problems as adults. Give autistics free public transportation that is not confusing (major cities in Europe already have this one figured out for you really) Quit expecting autistic people to work and allow us to exist as nature intended. Again force medical providers that work with us to understand ADHD, and make telehealth and TEXT especially for non verbal people. Our verbal responses are sometimes poorer than our written communication and that effects our care immensely. Themes Addressed: Accessibility, Community, Employment, Health, Housing |
| Sandra McClennen |
There is a lack of good data on the state of nonspeaking autistic, transition-age youth and adults, both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of nonspeaking autistic people: (a) are institutionalized, jailed, and imprisoned; (b) languish on Medicaid Home and Community Based (HCBS) waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to urgently and comprehensively address each of these moral and human rights challenges. Themes Addressed: Accessibility, Lifespan |
| Anna R Myers |
I believe I responded to this question in a previous on already, but vocational training is a great aspect, help with getting jobs that best fit the skills and wants of the autistic person. More opportunities to find affordable housing with easy maintenance. No more no pet policies in homes, this is just a bad policy in general but it is also ableist. Themes Addressed: Employment, Housing |
| Aster |
A service that could be useful for autistic adults would be education on how to operate in a workplace, and also about how to manage finances. When it comes to infrastructure, something that would be useful to address is transportation. Many autistic adults struggle with driving, and understanding why and what alternatives or support could be provided could make an immense difference to those people. Themes Addressed: Community, Employment |
| Julie Grant |
The US is woefully ignoring those who are aging out of the educational systems. Adult persons with autism need purposeful work and opportunities for education. Themes Addressed: Education, Employment, Lifespan |
| Jennifer Reppond, parent of ASD teenager / doctoral student |
Insurance does not cover expenses for our kids. We spend in upwards of 5Xs the amount on our kids for their health and wellness. Health! Educate parents (and doctors) on good diets (chicken nuggets at every meal will not help their child). They need to understand what it means to actually be healthy. Peer training (schools and work); need professional development for school teachers; need guidebooks for parents; we need doctors who understand our needs and not ignore us when we tell them our experiences; need health training (and our doctors need to be aware of this too - too many doctors do more harm than good with people on the spectrum); There needs to be nice, affordable housing (such as some of the private housing available) in nice areas, staffed by nice, caring, knowledgeable people where our kids can be independent but have a watchful eye over them. Themes Addressed: Accessibility, Education, Health, Housing |
| Damaris Ramos, Ron Davis Autism Foundation, Inc. |
We need to focus on education, services and acceptance in society, school and the workplace. Themes Addressed: Community, Education, Employment |
| Anonymous |
Housing, community activities and medical care for those with moderate/severe autism are desperately needed. Even in California, there are very few programs that meet the needs of these individuals. They are often ignored and downplayed. Themes Addressed: Community, Health, High Support Needs, Housing |
| Nina |
There is a lack of good data on the state of nonspeaking autistic, transition-age youth and adults, both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of nonspeaking autistic people: (a) are institutionalized, jailed, and imprisoned; (b) languish on Medicaid Home and Community Based (HCBS) waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to urgently and comprehensively address each of these moral and human rights challenges. Themes Addressed: Accessibility, Lifespan |
| Diana Autin/Lauren Agoratus, SPAN Parent Advocacy Network/Family Voices NJ |
We would also suggest research using health outcomes, as overall health determines quality of life; further research shows that people with brain disorders die on average 20-25 years earlier (source: National Alliance on Mental Illness.) Transition services need to be started early throughout childhood, not at transition age, beginning with giving young children choices. Employment, adult healthcare, and housing are issues. Finally, families need to be aware of Supported Decision-Making (see http://www.supporteddecisionmaking.org/ and https://autisticadvocacy.org/policy/toolkits/choices/) rather than taking away the civil rights of the individual. We would recommend collaboration with the Parent Centers (http://www.parentcenterhub.org/find-your-center/) for educational outcomes, Family-to-Family Health Information Centers (F2F) (http://www.familyvoices.org/page?id=0052) on healthcare, and Centers for Independent Living (http://www.ilru.org/projects/cil-net/cil-center-and-association-directory) as well as Parent Centers and F2Fs on transition to adult life. There are also national TA centers funded by the US Departments of Education and Health and Human Services focused on transition, including Got Transition (healthcare-US HHS MCHB), RAISE Transition TA Center (transition to all aspects of adult life-US ED OSERS) (www.raisecenter.org), and National Center on Healthcare Transition for Youth with I/DD (US HHS ACL), among others. There must be service coordination of all the moving parts as well as consideration of therapies as medically necessary at home as well as related services for special education. Services need to start in early intervention and continue after transition to adult life as there is no recover/wellness model as there is regarding mental health. In addition, there needs to be awareness of mental illness co-occurring with autism and services for those dually diagnosed with DD/MI (developmental disability/mental illness). There is a shortage of “beds” for mental health crises which is even worse for the dually diagnosed population. Utilization of mobile/crisis response, which has decreased institutionalization for children and youth with mental health challenges, should also be considered for individuals with ASD and/or dually diagnosed individuals. Themes Addressed: Coordination, Employment, Health, Housing, Lifespan |
| NICOLE LEBLANC |
LACK OF HCBS SEVICES FOR ADULTS W/ ASD W/O INTELLECTUAL DISABILITY LACK OF AFFORDABLE HOUSING LACK OF MASS TRASIT PEOPLE W/ ASD ARE UNDER-SERVED IN VR SYSTEM WE NEED MORE $$$ FOR JOB COACHING FOR ADULTS WITH ASD We need better training for doctors, health providers on health disparties and needs of the ASD community in healthcare settings Doctors must get mandated training on ASD We need to end Benefit Cliffs in SSDI for adults with ASD We need alternative treatments for GI ISSUES IN ASD Invest in College programs for adults with asd Access to more therapists-require them to take medicaid, medicare Expand SSI,SSDI More social skills training programs VR counselors specialized in ASD Themes Addressed: Accessibility, Community, Employment, Health, Housing |
| Crystal |
The utter lack of care for the needs of the severe Autism population. Need for training for adult population providers. Housing, in home help for families. Help for people when parents are gone Themes Addressed: High Support Needs, Housing |
| Lisa Jeanne Graf |
Push for employment opportunities in all careers- not just IT, etc. Autistic people have a huge variety of career interests. Put the focus on employer education- not expecting employees to mask 24/7 to get and maintain employment. I would like employers to not discriminate on disability during interviews and at work. Also many opportunities for entry level work are for youth. People with disabilities might take longer to get their career going or find their best career fit. It would be great if mid life workers are also given entry level opportunities especially in government jobs. In addition in my state of MA I could not get into a policy program for a masters because I had a low math score. Doing away with testing to get into programs and then offering any needed remedial classes would be much more useful for providing more access to education. There is barely any research on woman and older individuals. Please allow this and don't have it only be with individuals with diagnoses because that leaves out a lot of people and just reinforces stereotypes. Menopause is a time a lot of people realize that they are autistic because their sensitivities become more felt emotionally. Also please let it be easier for individuals with a child with a diagnosis to get a diagnosis too. Just about all health issues believe that if one family member has a condition, there is a higher change that you will too. This fact should make it easier for autistic individual to get a diagnosis but it actually doesn't seem to be considered as a factor. Themes Addressed: Education, Employment, Health |
| Erin Prangley, Consortium for Citizens with Disabilities' Developmental Disabilities, Autism and Family Supports Task Force |
There are huge research gaps on how to address access to housing and how to serve people with significant needs on the continuum of services and supports, including those with multiple medical complexities and those with significant challenging behaviors. There is momentum on employment issues, however that hasn’t necessarily translated into an evidence base of employment strategies that work for people with ASD across the spectrum. More research is needed to demonstrate how effective practices can better serve people with severe ASD and how to rapidly scale those services across the country. For example, the Workforce Innovation and Opportunity Act established an Advisory Committee on Competitive Integrated Employment. The Committee developed bipartisan policy recommendations to address many of these barriers. The IACC could review and recommend that relevant agencies implement these proposals. Furthermore, recommendations should be developed that address policy barriers that disincentivize work for people with ASD who rely on Social Security and Medicaid. Address existing service gaps for underserved populations with ASD. Underserved populations often experience barriers in receiving supportive services such as Vocational Rehabilitation and HCBS. When they are connected to services at all these services are often less effective in supporting under-served populations. Themes Addressed: Accessibility, Employment, Housing |
| Lindsay Shea, Drexel University |
- Need to focus on understanding the needs of aging autistic adults 1. Appropriate behavioral, social, communication and sensory supports to maximize community participation and engagement (including relationship development) 2. Employment supports 3. Housing 4. Opportunities to promote community engagement 5. Mental health support provided by clinicians with expertise in understanding the mental health needs of individuals with ASD 6. Support and respite for families and caregivers 7. Support to bolster the acquisition of life and independent living skills 8. Support from primary care and specialty care medical practitioners who understand how to provide needed medical and dental care to individuals with ASD 9. Training of law enforcement professionals to understand the needs of individuals with ASD 10. Crisis and outpatient supports 11. Supports during periods of transition 12. Opportunities in Higher Education settings 13. Innovative programs and models through Medicaid Themes Addressed: Community, Employment, Health, Housing |
| Anonymous |
As stated previously, there is a grave need for meaningful, long-term residential placements for individuals with intensive support needs. Options for residential placements in which individuals with intensive behavioral needs can learn new communication, daily living, social, and job skills are very limited. Further, for families who do wish or are able to continue supporting their child in the home through adulthood, continued behavioral intervention services, medical services, family support services, and day programs are critically needed. Currently, individuals with ASD often ""age out"" of community-based therapy programs between 16 to 18 years of age with extremely limited options beyond this point. Families need help navigating adult systems of care for their child with ASD, especially those who already experience disparities in accessing systems of care themselves. In turn, adults with ASD can reach their full potential into adulthood. Themes Addressed: Housing, Lifespan |
| Alicia Munson, The Arc Minnesota |
This discussion, like all others, should be led by Autistic people. Greater emphasis needs to be placed on Autistic leadership in developing research and recommendations. In the past, parent-led advocacy hasn’t supported self-determination nor self-direction of Autistic children, young adults, and adults. From an early age, Autistic people should be supported to communicate in ways that work for them, and help ensure their needs and preferences are prioritized. This must carry through adulthood, with the presumption of competency and the right to support in whatever way is preferred for them. We must transition away from guardianships and conservatorships, to natural supported decision-making structures that honor the wisdom of each person. Any “interventions” given throughout the lifespan should be research-based, aimed at enhancing individualized outcomes across the social determinants of health, and/or focused on preventative measures. Take, for instance, water safety- a common skill taught to children before they reach adulthood. Autistic people are 160 times more likely to drown, and 32% of parents report a close-call. However, water safety and swimming lessons are not covered by insurances like Medicaid. Adaptive swimming may be offered, but not all Autistic children require adaptive swimming. Themes Addressed: Inclusion, Lifespan |
| Anonymous |
Meeting the needs of autistic people as they progress into adulthood includes acknowledging, and accepting, that autism does not go away as a person gets older. For some, autism becomes more apparent as more and more is expected of them. Needing the needs of autistic adults means asking the autistic community what it needs, instead of listening to neurotypical lead organizations such as Autism Speaks. Themes Addressed: Acceptance, Inclusion |
| Dr. Andy Shih, Autism Speaks |
Research has highlighted practices that have been effective in employment, post-secondary education, and healthcare transition. However, these practices have not been scaled up across different contexts and regions. A big limitation has been the assumption that environmental modifications necessarily lead to participation and improved outcomes, even when the environmental barriers that have been addressed in research are narrowly confined to physical environments. Environmental barriers should be broadened to include attitudinal and interpersonal communication challenges that are important for acceptance of individual differences. Most research in this area has studied process-level variables and has yet to discover practice-level parameters to mitigate barriers and increase engagement. In the clinical realm, we have little information on how autism affects the aging process and many mental health assessment tools may be inappropriate for autistic individuals. Autism sensitive assessment tools and best practices are needed to understand and address the many health issues that come with aging and can affect the quality of life. Even a greater unknown is how a person’s autism affects aging and related health issues (i.e. do neurodegenerative diseases present the same way in autistic individuals?). Here again understanding the biology could be of great help and could portend future aging issues, similar to what was seen with specific genes variants and risk for dementia. Themes Addressed: Community, Health |
| Council of Autism Service Providers |
One of the ways that the IACC and its community partners can meet the needs of people with ASD as they progress into adulthood is to ensure that they have access to meaningful behavioral supports, including applied behavior analysis (ABA), across the lifespan. ABA can help autistic people engage in meaningful self-advocacy and connect to the community around them. This includes accessing employment and community activities, living safely in their own homes, and engaging in healthy lifestyles that can benefit them both physically and mentally. Themes Addressed: Accessibility, Lifespan |
| Kim Musheno, Autism Society of America |
There are huge gaps in research on residential supports and housing and how we can serve more individuals in the community. We also need more research on how to serve people with significant needs on the continuum of services and supports, especially those with multiple medical complexities and those with significant challenging behaviors. With the additional agencies joining the IACC, we hope that the Committee can facilitate better coordination between HUD, CMS and other agencies responsible for coordinating a federal response to the severe housing needs of those with autism. Themes Addressed: Coordination, High Support Needs, Housing |
| Anonymous |
ASD does not magically disappear when a person turns 18 or receives a BA degree. The few colleges that offer support to students on the spectrum exclude graduate students from these programs and this must change. It's great that programs to place people with autism into jobs exist now but they don't go far enough. The unemployment rate for adults with autism is still over 80%. These programs must also work to keep people in their jobs once they get them. Getting a job only to be laid off or fired every year is not helpful. Themes Addressed: Education, Employment |
| National Council on Severe Autism, National Council on Severe Autism |
Every day the NCSA sees a dire, escalating need for more options for adults with severe autism — including day programs, employment, housing, behavioral care, and medical care. Research is needed to help facilitate the full continuum of care, particularly for those with severe autism who have the least access to programs and housing, and should focus on the following: • Ways to sustain and expand access to ICF-DDs as a critical part of the national safety net for the severely disabled • Ways to target HUD housing subsidies for the severely disabled incapable of earning a living or caring for themselves • Ways to properly implement HCBS person-centered care free of common myths about the settings rule that would unduly restrain options absent any true legal mandate • Ways to dramatically improve support for family caregivers • Ways to minimize neglect and abuse of adults with autism Themes Addressed: Community, High Support Needs, Housing |
| CommunicationFIRST |
There is a dearth of actionable data on the state of autistic transition age youth and adults both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of them: (a) are institutionalized, jailed, imprisoned; (b) languish on Medicaid HCBS waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to urgently and comprehensively address each of these moral and human rights challenges. Themes Addressed: Accessibility, Lifespan |
| Tiffany Glass |
Our experience is that the most important gaps in all the above pertain to an absence of the infrastructure to supports for autistic individuals who need robust AAC in order to communicate. We support CommunicationFirst's position on this issue: ""There is a lack of good data on the state of nonspeaking autistic, transition-age youth and adults, both in general and specific to their need and use of augmentative and alternative communication (AAC). Based on what is known, however, all indications are that: (1) The majority of autistic adults who require it lack access to robust, language-based AAC. (2) Even when these persons effectively used AAC as youth, they lose access to it once they leave school. (3) Autistic nonspeaking adults denied access are forced to express themselves in ways that are dangerous and dehumanizing. (4) Unknown numbers of nonspeaking autistic people: (a) are institutionalized, jailed, and imprisoned; (b) languish on Medicaid Home and Community Based (HCBS) waiver waiting lists; (c) are in states in which they do not qualify for any HCBS services and supports; (d) live with parents age 50 and older; and (e) face perilous futures. A national strategy must be developed to urgently and comprehensively address each of these moral and human rights challenges. "" Themes Addressed: Accessibility, Lifespan |
| Elizabeth Duffy, MS-OTR/L, Minnesota Neurodivergent Education Advocacy and Therapy Services |
Mentorship by other Autistic Adults, providing education to workplaces, community living settings, and professionals on Autistic adult accommodations, modifications, and support across settings is important. Neurotypical people need to also better understand and accept Neurodivergent ways of communicating and living. The double empathy problem has a significant amount of research supporting it, and should be a stepping stone towards better acceptance across settings. Themes Addressed: Acceptance, Inclusion |
| Anonymous |
Increase access to home and community-based services to allow autistic adults to live independently in their communities Increase access to educational and vocational programs for autistic adults who want to enter the workforce Change current laws/policies that prevent disabled individuals from being able to work and still receive disability benefits Increase accessibility of public transportation systems Increased access to home- and community-based services for autistic individuals - with proper supports in place, it is much more likely that an autistic person will be able to access and navigate their communities Themes Addressed: Community, Employment |
| Levi Miller |
This has a lot to do with a lot of the common issues that many people in marginalized and underserved communities face and their is no easy answer to this question because there are a lot of things. It is going to be different for each individual as we all deal with different issues. The short answer is, we all want to be accepted in society and I think is important that we listen to people in the neurodiverse community and try to learn in order to make things better. Most of us just want to be able to walk down the street and not be starred at or judged for our differences. One big policy that should be focused however on is police reform. Many neurodiverse people especially in the BIPOC community face worries of being stopped as well as situations where a mental health professional rather than an armed officer should be required. The recently passed Infrastructure Investment and Jobs Act signed by President Biden will do a lot for the ASD and Neurodiverse community. I see it as an opportunity to create jobs for many in this community while also making the world a safer place for us. There are many who live in communities that don't have access to internet which created a burden during the COVID shutdowns when school was remote when in fact school is already challenging for many in this community. I think the recent passing of this law will strongly address this issue in the long run and hopefully help create a better future. Themes Addressed: Acceptance, Community, Employment |
| Anonymous |
As far as I have been able to determine, there are no services for autistic adults, except possibly in the urban areas of Eastern Canada. If I am incorrect, then there's a gap in communication at the very least. A big concern for autistic adulthood is poverty. Autistic adults are likely to be unemployed, and therefore poor. Disability income supports are nearly impossible to access due to barriers to diagnosis, and actual amounts of financial assistance for disabled people are low enough that autistic adults are likely to be hungry or even homeless. Stigma from health professionals means that autistics do not receive quality basic health care. Injuries and illnesses are overlooked and untreated. This shortens our lifespans, as does the high rate of suicide. We commit suicide because our adult lives are intolerable - because we are often poor, hungry, homeless, unemployed, ill, and in pain. Themes Addressed: Employment, Health, Lifespan |
| Jacqueline Ward |
We need to address depression, anxiety, along with education, vocational training, employment. The gaps are in the educational system from the very beginning, early years. School districts are not equipped to handle a growing population of autistic and neuro-diverse students. We need more teacher training, better inclusion practices, more family input and support and solid programs to help an autistic no matter what age. Themes Addressed: Education, Employment, Health |
| Michael J. Borr, Chair, Advocates for Autism of Massachusetts |
AFAM endorses Obj. 1-3 of the Strategic Plan to support (i) integrated services for youth transitioning to adulthood and provide support throughout the lifespan, (ii) research and implementation of approaches to reduce disabling co-occurring physical and mental health conditions in adults to improve safety, reduce premature mortality, and enhance quality of life, and (iii) research, service activities, and outreach efforts that facilitate and incorporate acceptance, accommodation, inclusion, independence, and integration of people with ASD into society. Quality education services (PreK-12 SPED, postsecondary, career/technical education, and higher education) for students with ASD are the foundation for quality of life across the lifespan. Transition planning by age 14 is critical, enabling students to effectively access supports needed for adult life. Also critical is investment in educational research by the Dep’t of Education and others. Assistance with self-supporting small business initiatives can increase employment for some with ASD. Lifelong supports (residential and day supports, affordable housing programs and models, respite for family caregivers who play such significant roles, and transportation alternatives) must be sufficiently funded to ensure that every person with autism receives the individualized services they need when they need them. The crisis in workforce serving those with autism and others with disabilities must be solved for advances to be made. Themes Addressed: Education, Employment |
| Autism Science Foundation |
The IACC Strategic Plan on Lifespan Issues in ASD should include: • Improving Services for Females with ASD. Healthcare providers, educators and parents need more understanding about females with ASD to better communicate with parents and to serve the needs of ASD females throughout their lives. Current challenges include: (1) difficulty in diagnosing ASD in young girls (2) the need to understand the effect of comorbidities like anxiety on the recognition and treatment of ASD in females; (3) the need to address the societal stigma of female ASD as well as the effect of different racial and cultural influences; and (4) the need to communicate sensitively with females about the challenges and strengths of their ASD. • Recognizing the needs those with Profound Autism and ASD+ID. The lifelong needs of individuals with (1) profound autism-those with behavioral or comorbid health issues that require intensive care, and (2) individuals with ASD plus intellectual disability must be addressed separately from the needs of those with ASD who do not have those profiles. For these individuals, autism is not just a different way of seeing the world, and we need to ensure that every individual receives the appropriate type and level of intervention. Continued governmental support is needed on every level for educational programs, transition planning, appropriate housing, and meaningful vocational and community opportunities for this segment of the autism population. Themes Addressed: Acceptance, Health, High Support Needs |
| American Academy of Pediatrics |
The Academy believes it is imperative to address the lack of training of adult providers (medical, psychological, behavioral) to handle the transition from pediatric to adult care. Workforce issues must be addressed so there are more adult providers prepared to care for adults living with ASD. It will also be important to address ableism, so that people with ASD are not discriminated against in receiving care or experience social prejudice based on their perceived disabilities. The Academy recommends practical programs to guide health care clinicians in developing skills to support transition to adulthood starting at the age of 12, including the appropriate and quality transition to a qualified adult health care clinician. Reimbursement mechanisms must account for the extended time necessary to provide this medically necessary service. The Academy encourages the IACC to expand opportunities for training for pediatricians, family practice and internists to provide standard of care to individuals with autism spectrum disorder. To help prepare adolescents as they transition into adulthood, the Academy recommends providing more supportive guidance in high school for individuals with ASD who are interested in pursuing higher education and more support at the post-secondary level for students with ASD. In addition, the AAP believes that offering more vocational opportunities for individuals with ASD in companies and businesses that foster neurodiversity and increasing housing and residential support options for adults with ASD who require varying levels of support can help people with ASD as they progress into and through adulthood. The Academy would also like to note that elopement is a significant cause of morbidity and mortality for individuals with ASD. As such, more needs to be done to support families in understanding the risks and preventing elopement, including financial support for GPS tracking devices, education on keeping the home safe and secure, and education for police departments on ASD. Themes Addressed: Community, Education, Employment, Health, Lifespan |
| Daysi Jimenez |
Mas oportunidades de empleo Oportunidades de vivienda Mas entrenamiento de habilidades para independencia Ayuda para padres que tienen que seguir cuidando a sus hijos mayore de edad - respite care, recursos a oportunidades recreativas. Translation: More employment opportunities Housing opportunities More independence skills training Help for parents who have to continue caring for their older children - respite care, resources to recreational opportunities Themes Addressed: Community, Employment, High Support Needs, Housing |
