Appendices

Appendix I: References

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2. Dietz PM, Rose CE, McArthur D, Maenner M. National and State Estimates of Adults with Autism Spectrum Disorder. J Autism Dev Disord. 2020 Dec;50(12):4258-4266. [PMID: 32390121]
3. Shaw KA, Maenner MJ, Baio J; EdS1, Washington A, Christensen DL, Wiggins LD, Pettygrove S, Andrews JG, White T, Rosenberg CR, Constantino JN, Fitzgerald RT, Zahorodny W, Shenouda J, Daniels JL, Salinas A, Durkin MS, Dietz PM. Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years - Early Autism and Developmental Disabilities Monitoring Network, Six Sites, United States, 2016. MMWR Surveill Summ. 2020 Mar 27;69(3):1-11. [PMID: 32214075]
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20. Bilaver LA, Sobotka SA, Mandell DS. Understanding Racial and Ethnic Disparities in Autism-Related Service Use Among Medicaid-Enrolled Children. J Autism Dev Disord. 2021 Sep;51(9):3341-3355. [PMID: 33219917]
21. Bishop-Fitzpatrick L, Mazefsky CA, Eack SM. The combined impact of social support and perceived stress on quality of life in adults with autism spectrum disorder and without intellectual disability. Autism. 2018 Aug;22(6):703-711. [PMID: 28666391]
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24. Carter EW, Harvey MN, Taylor JL, Gotham K. Connecting Youth and Young Adults with Autism Spectrum Disorders to Community Life. Psychol Sch. 2013 Nov;50(9):888-898. [PMID: 26236045]
25. Ohl A, Grice Sheff M, Small S, Nguyen J, Paskor K, Zanjirian A. Predictors of employment status among adults with Autism Spectrum Disorder. Work. 2017;56(2):345-355. [PMID: 28211841]
26. Scott M, Milbourn B, Falkmer M, Black M, Bölte S, Halladay A, Lerner M, Taylor JL, Girdler S. Factors impacting employment for people with autism spectrum disorder: A scoping review. Autism. 2019 May;23(4):869-901. [PMID: 30073870]
27. Schall C, Wehman P, Avellone L, Taylor JP. Competitive Integrated Employment for Youth and Adults with Autism: Findings from a Scoping Review. Psychiatr Clin North Am. 2020 Dec;43(4):701-722. [PMID: 33127003]
28. Haas K, Gibbs V. Does a Person's Autism Play a Role in Their Interactions with Police: The Perceptions of Autistic Adults and Parent/Carers. J Autism Dev Disord. 2021 May;51(5):1628-1640. [PMID: 32809172]
29. Salerno-Ferraro AC, Schuller RA. Perspectives from the ASD community on police interactions: Challenges & recommendations. Res Dev Disabil. 2020 Oct;105:103732. [PMID: 32663737]
30. Khanna R, Jariwala-Parikh K, West-Strum D, Mahabaleshwarkar R. Health-related quality of life and its determinants among adults with autism. Research in Autism Spectrum Disorders. 2014 Mar 1;8(3):157-67. doi:10.1016/j.rasd.2013.11.003
31. Karpur A, Vasudevan V, Lello A, Frazier TW, Shih A. Food insecurity in the households of children with autism spectrum disorders and intellectual disabilities in the United States: Analysis of the National Survey of Children's Health Data 2016- 2018. Autism. 2021 Jun 2:13623613211019159. [PMID: 34075809]
32. Feeley C, Deka D, Lubin A, McGackin M. Detour to the Right Place: A Study with Recommendations for Addressing the Transportation Needs and Barriers of Adults on the Autism Spectrum in New Jersey. Rutgers. 2015 Sept. Available at: http://vtc.rutgers.edu/detour-to-the-right-place/
33. Data Source Medicare administrative claims data for calendar year 2016, specifically Medicare fee-for-service (FFS) beneficiaries with both Medicare Parts A and B full year coverage. Beneficiaries who received Medicare Advantage (Medicare Part C) at any time during 2016 were excluded because the services they received are collected by private companies and are not included in Medicare administrative claims data. The resulting final sample size was 30,987,261 beneficiaries. The ASD-specific statistics have not yet been published; however, the results of the IDD beneficiaries were published in 2019, available at: Reichard A, Haile E, Morris A. Characteristics of Medicare Beneficiaries with Intellectual or Developmental Disabilities. Intellect Dev Disabil. 2019 Oct;57(5):405-420. [PMID: 31568735]
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36. Musumeci MB, Chidambaram P. Medicaid's Role for Children with Special Health Care Needs: A Look at Eligibility, Services, and Spending. KFF Issue Brief. June 2019 Available at: https://www.kff.org/medicaid/issue-brief/medicaids-role-for-children-with-special-health-care-needs-a-look-at-eligibility-services-and-spending/
37. Kogan MD, Vladutiu CJ, Schieve LA, Ghandour RM, Blumberg SJ, Zablotsky B, Perrin JM, Shattuck P, Kuhlthau KA, Harwood RL, Lu MC. The Prevalence of Parent-Reported Autism Spectrum Disorder Among US Children. Pediatrics. 2018 Dec;142(6):e20174161. [PMID: 30478241]
38. Satterstrom FK, Kosmicki JA, Wang J, Breen MS, De Rubeis S, An JY, Peng M, Collins R, Grove J, Klei L, Stevens C, Reichert J, Mulhern MS, Artomov M, Gerges S, Sheppard B, Xu X, Bhaduri A, Norman U, Brand H, Schwartz G, Nguyen R, Guerrero EE, Dias C; Autism Sequencing Consortium; iPSYCH-Broad Consortium, Betancur C, Cook EH, Gallagher L, Gill M, Sutcliffe JS, Thurm A, Zwick ME, Børglum AD, State MW, Cicek AE, Talkowski ME, Cutler DJ, Devlin B, Sanders SJ, Roeder K, Daly MJ, Buxbaum JD. Large-Scale Exome Sequencing Study Implicates Both Developmental and Functional Changes in the Neurobiology of Autism. Cell. 2020 Feb 6;180(3):568-584.e23. [PMID: 31981491]
39. Alexander Arguello P, Addington A, Borja S, Brady L, Dutka T, Gitik M, Koester S, Meinecke D, Merikangas K, McMahon FJ, Panchision D, Senthil G, Lehner T. From genetics to biology: advancing mental health research in the Genomics ERA. Mol Psychiatry. 2019 Nov;24(11):1576-1582. [PMID: 31164699]
40. Parker KJ, Oztan O, Libove RA, Mohsin N, Karhson DS, Sumiyoshi RD, Summers JE, Hinman KE, Motonaga KS, Phillips JM, Carson DS, Fung LK, Garner JP, Hardan AY. A randomized placebo-controlled pilot trial shows that intranasal vasopressin improves social deficits in children with autism. Sci Transl Med. 2019 May 8;11(491):eaau7356. [PMID: 31043522]
41. Voss C, Schwartz J, Daniels J, Kline A, Haber N, Washington P, Tariq Q, Robinson TN, Desai M, Phillips JM, Feinstein C, Winograd T, Wall DP. Effect of Wearable Digital Intervention for Improving Socialization in Children With Autism Spectrum Disorder: A Randomized Clinical Trial. JAMA Pediatr. 2019 May 1;173(5):446-454. [PMID: 30907929]
42. Laxman DJ, Taylor JL, DaWalt LS, Greenberg JS, Mailick MR. Loss in services precedes high school exit for teens with autism spectrum disorder: A longitudinal study. Autism Res. 2019 Jun;12(6):911-921. [PMID: 31033222]
43. Broder Fingert S, Carter A, Pierce K, Stone WL, Wetherby A, Scheldrick C, Smith C, Bacon E, James SN, Ibañez L, Feinberg E. Implementing systems-based innovations to improve access to early screening, diagnosis, and treatment services for children with autism spectrum disorder: An Autism Spectrum Disorder Pediatric, Early Detection, Engagement, and Services network study. Autism. 2019 Apr;23(3):653-664. [PMID: 29633852]
44. Pierce K, Gazestani VH, Bacon E, Barnes CC, Cha D, Nalabolu S, Lopez L, Moore A, Pence-Stophaeros S, Courchesne E. Evaluation of the Diagnostic Stability of the Early Autism Spectrum Disorder Phenotype in the General Population Starting at 12 Months. JAMA Pediatr. 2019 Jun 1;173(6):578- 587. [PMID: 31034004]
45. Feinberg E, Augustyn M, Broder-Fingert S, Bennett A, Weitzman C, Kuhn J, Hickey E, Chu A, Levinson J, Sandler Eilenberg J, Silverstein M, Cabral HJ, Patts G, Diaz-Linhart Y, Fernandez-Pastrana I, Rosenberg J, Miller JS, Guevara JP, Fenick AM, Blum NJ. Effect of Family Navigation on Diagnostic Ascertainment Among Children at Risk for Autism: A Randomized Clinical Trial From DBPNet. JAMA Pediatr. 2021 Mar 1;175(3):243-250. [PMID: 33427861]
46. Anderson KA, Hemmeter J, Rast JE, Roux AM, Shattuck PT. Trends in Supplemental Security Income Payments to Adults With Autism. Psychiatr Serv. 2020 Jun 1;71(6):602-607. [PMID: 32264799]

Appendix II: CDC-Supported ASD Publications: Study to Explore Early Development (SEED)

Manuscripts published in the past three years specifically addressing the health and developmental characteristics of children with ASD and use of services among families and children with ASD are listed below:

1. Wiggins LD, Rubenstein E, Windham G, Barger B, Croen L, Dowling N, Giarelli E, Levy S, Moody E, Soke G, Fields V, Schieve L. Evaluation of sex differences in preschool children with and without autism spectrum disorder enrolled in the study to explore early development. Res Dev Disabil. 2021 May;112:103897. [PMID: 33610079]
2. Wiggins LD, Nadler C, Rosenberg S, Moody E, Reyes N, Reynolds A, Alexander A, Daniels J, Thomas K, Giarelli E, Levy SE. Many Young Children with Autism Who Use Psychotropic Medication Do Not Receive Behavior Therapy: A Multisite Case-Control Study. J Pediatr. 2021 May;232:264- 271. [PMID: 33493493]
3. Reynolds AM, Soke GN, Sabourin KR, Croen LA, Daniels JL, Fallin MD, Kral TVE, Lee LC, Newschaffer CJ, Pinto-Martin JA, Schieve LA, Sims A, Wiggins L, Levy SE. Gastrointestinal Symptoms in 2- to 5-Year-Old Children in the Study to Explore Early Development. J Autism Dev Disord. 2021 Jan 4. [PMID: 33394243]
4. Hiruma L, Pretzel RE, Tapia AL, Bodfish JW, Bradley C, Wiggins L, Hsu M, Lee LC, Levy SE, Daniels J. A Distinct Three-Factor Structure of Restricted and Repetitive Behaviors in an Epidemiologically Sound Sample of Preschool-Age Children with Autism Spectrum Disorder. J Autism Dev Disord. 2021 Jan 2. [PMID: 33387232]
5. Fields VL, Soke GN, Reynolds A, Tian LH, Wiggins L, Maenner M, DiGuiseppi C, Kral TVE, Hightshoe K, Schieve LA. Pica, Autism, and Other Disabilities. Pediatrics. 2021 Feb;147(2):e20200462. [PMID: 33408069]
6. Wiggins LD, DiGuiseppi C, Schieve L, Moody E, Soke G, Giarelli E, Levy S. Wandering Among Preschool Children with and Without Autism Spectrum Disorder. J Dev Behav Pediatr. 2020 May;41(4):251-257. [PMID: 31977588]
7. Tian LH, Wiggins LD, Schieve LA, Yeargin-Allsopp M, Dietz P, Aylsworth AS, Elias ER, Hoover-Fong JE, Meeks NJL, Souders MC, Tsai AC, Zackai EH, Alexander AA, Dowling NF, Shapira SK. Mapping the Relationship between Dysmorphology and Cognitive, Behavioral, and Developmental Outcomes in Children with Autism Spectrum Disorder. Autism Res. 2020 Jul;13(7):1227-1238. [PMID: 32567802]
8. Fields VL, Soke GN, Reynolds A, Tian LH, Wiggins L, Maenner M, DiGuiseppi C, Kral TVE, Hightshoe K, Ladd-Acosta C, Schieve LA. Association between pica and gastrointestinal symptoms in preschoolers with and without autism spectrum disorder, Study to Explore Early Development. Disabil Health J. 2020 Dec 13:101052. [PMID: 33358227]
9. Ellis Weismer S, Rubenstein E, Wiggins L, Durkin MS. A Preliminary Epidemiologic Study of Social (Pragmatic) Communication Disorder Relative to Autism Spectrum Disorder and Developmental Disability Without Social Communication Deficits. J Autism Dev Disord. 2020 Oct 9:10.1007/ s10803-020-04737-4. [PMID: 33037562]
10. Cordero C, Schieve LA, Croen LA, Engel SM, Maria Siega-Riz A, Herring AH, Vladutiu CJ, Seashore CJ, Daniels JL. Neonatal jaundice in association with autism spectrum disorder and developmental disorder. J Perinatol. 2020 Feb;40(2):219-225. [PMID: 31388117]
11. Wiggins LD, Rice CE, Barger B, Soke GN, Lee LC, Moody E, Edmondson-Pretzel R, Levy SE. DSM-5 criteria for autism spectrum disorder maximizes diagnostic sensitivity and specificity in preschool children. Soc Psychiatry Psychiatr Epidemiol. 2019 Jun;54(6):693-701. [PMID: 30850887]
12. Wiggins LD, Barger B, Moody E, Soke G, Pandey J, Levy S. Brief Report: The ADOS Calibrated Severity Score Best Measures Autism Diagnostic Symptom Severity in Pre-School Children. J Autism Dev Disord. 2019 Jul;49(7):2999-3006. [PMID: 28265795]
13. Shapira SK, Tian LH, Aylsworth AS, Elias ER, Hoover-Fong JE, Meeks NJL, Souders MC, Tsai AC, Zackai EH, Alexander AA, Yeargin-Allsopp M, Schieve LA. A Novel Approach to Dysmorphology to Enhance the Phenotypic Classification of Autism Spectrum Disorder in the Study to Explore Early Development. J Autism Dev Disord. 2019 May;49(5):2184-2202. [PMID: 30783897]
14. Rubenstein E, Croen L, Lee LC, Moody E, Schieve LA, Soke GN, Thomas K, Wiggins L, Daniels J. Community-based service use in preschool children with autism spectrum disorder and associations with insurance status. Res Autism Spectr Disord. 2019 Oct;66:101410. [PMID: 32831903]
15. Reynolds AM, Soke GN, Sabourin KR, Hepburn S, Katz T, Wiggins LD, Schieve LA, Levy SE. Sleep Problems in 2- to 5-Year-Olds With Autism Spectrum Disorder and Other Developmental Delays. Pediatrics. 2019 Mar;143(3):e20180492. [PMID: 30745433]
16. Reinhartsen DB, Tapia AL, Watson L, Crais E, Bradley C, Fairchild J, Herring AH, Daniels J. Expressive Dominant Versus Receptive Dominant Language Patterns in Young Children: Findings from the Study to Explore Early Development. J Autism Dev Disord. 2019 Jun;49(6):2447-2460. [PMID: 30937735]
17. Levy SE, Rescorla LA, Chittams JL, Kral TJ, Moody EJ, Pandey J, Pinto-Martin JA, Pomykacz AT, Ramirez A, Reyes N, Rosenberg CR, Schieve L, Thompson A, Young L, Zhang J, Wiggins L. ASD Screening with the Child Behavior Checklist/1.5-5 in the Study to Explore Early Development. J Autism Dev Disord. 2019 Jun;49(6):2348-2357. [PMID: 30739222]
18. Kral TV, Chittams J, Bradley CB, Daniels JL, DiGuiseppi CG, Johnson SL, Pandey J, Pinto-Martin JA, Rahai N, Ramirez A, Schieve LA, Thompson A, Windham G, York W, Young L, Levy SE. Early life influences on child weight outcomes in the Study to Explore Early Development. Autism. 2019 May;23(4):954-962. [PMID: 30102071]
19. DiGuiseppi C, Sabourin KR, Levy SE, Soke GN, Lee LC, Wiggins L, Schieve LA. Injury-related treatments and outcomes in preschool children with autism spectrum disorder: Study to Explore Early Development (SEED). Research in Autism Spectrum Disorders. 2019;66:101413. doi: 10.1016/j.rasd.2019.101413.
20. Barger B, Moody EJ, Ledbetter C, D'Abreu L, Hepburn S, Rosenberg SA. Temperament Similarities and Differences: A Comparison of Factor Structures from the Behavioral Style Questionnaire in Children with and Without Autism Spectrum Disorder. J Autism Dev Disord. 2019 May;49(5):1749-1762. [PMID: 30604350]
21. DiGuiseppi C, Levy SE, Sabourin KR, Soke GN, Rosenberg S, Lee LC, Moody E, Schieve LA. Injuries in Children with Autism Spectrum Disorder: Study to Explore Early Development (SEED). J Autism Dev Disord. 2018 Feb;48(2): 461-472. [PMID: 29022199]
22. Soke GN, Rosenberg SA, Rosenberg CR, Vasa RA, Lee LC, DiGuiseppi C. Self-injurious behaviors in children with autism spectrum disorder enrolled in the Study to Explore Early Development. Autism. 2018 Jul;22(5):625-635. [PMID: 28635306]
23. Soke GN, Rosenberg SA, Rosenberg CR, Vasa RA, Lee LC, DiGuiseppi C. Brief Report: Self-Injurious Behaviors in Preschool Children with Autism Spectrum Disorder Compared to Other Developmental Delays and Disorders. J Autism Dev Disord. 2018 Jul;48(7):2558-2566. [PMID: 29429009]

Manuscripts that address the etiology of ASD include those listed below:

1. Ames JL, Ladd-Acosta C, Fallin MD, Qian Y, Schieve LA, DiGuiseppi C, Lee L, Kasten EP, Zhou G, Pinto-Partin J, Howerton EM, Eaton CL, Croen LA. Maternal Psychiatric Conditions, Treatment With Selective Serotonin Reuptake Inhibitors, and Neurodevelopmental Disorders. 2021 Aug;90(4):253-262. [PMID: 34116791]
2. Matias S, Pearl M, Lyall K, Croen LA, Kral TVE, Fallin D, Lee L, Bradley CB, Schieve LA, Windam GC. Maternal Prepregnancy Weight and Gestational Weight Gain in Association with Autism and Developmental Disorders in Offspring. 2021 Sep;29(9):1554-1564. [PMID: 34347372]
3. McGuinn LA, Windham GC, Kalkbrenner AE, Bradley C, Di Q, Croen LA, Fallin MD, Hoffman K, Ladd-Acosta C, Schwartz J, Rappold AG, Richardson DB, Neas LM, Gammon MD, Schieve LA, Daniels JL. Early Life Exposure to Air Pollution and Autism Spectrum Disorder: Findings from a Multisite Case-Control Study. Epidemiology. 2020 Jan;31(1):103-114. [PMID: 31592868]
4. Windham GC, Anderson M, Lyall K, Daniels JL, Kral TVE, Croen LA, Levy SE, Bradley CB, Cordero C, Young L, Schieve LA. Maternal Pre-pregnancy Body Mass Index and Gestational Weight Gain in Relation to Autism Spectrum Disorder and other Developmental Disorders in Offspring. Autism Res. 2019 Feb;12(2):316-327. [PMID: 30575327]
5. Soke GN, Maenner M, Windham G, Moody E, Kaczaniuk J, DiGuiseppi C, Schieve LA. Association Between Breastfeeding Initiation and Duration and Autism Spectrum Disorder in Preschool Children Enrolled in the Study to Explore Early Development. Autism Res. 2019 May;12(5):816- 829. [PMID: 30852853]
6. Sabourin KR, Reynolds A, Schendel D, Rosenberg S, Croen LA, Pinto-Martin JA, Schieve LA, Newschaffer C, Lee LC, DiGuiseppi C. Infections in children with autism spectrum disorder: Study to Explore Early Development (SEED). Autism Res. 2019 Jan;12(1):136-146. [PMID: 30475448]
7. Rubenstein E, Young JC, Croen LA, DiGuiseppi C, Dowling NF, Lee LC, Schieve L, Wiggins LD, Daniels J. Brief Report: Maternal Opioid Prescription from Preconception Through Pregnancy and the Odds of Autism Spectrum Disorder and Autism Features in Children. J Autism Dev Disord. 2019 Jan;49(1):376-382. [PMID: 30132098]
8. Rubenstein E, Wiggins LD, Schieve LA, Bradley C, DiGuiseppi C, Moody E, Pandey J, Pretzel RE, Howard AG, Olshan AF, Pence BW, Daniels J. Associations between parental broader autism phenotype and child autism spectrum disorder phenotype in the Study to Explore Early Development. Autism. 2019 Feb;23(2):436-448. [PMID: 29376397]
9. McGuinn LA, Windham GC, Messer LC, Di Q, Schwartz J, Croen LA, Moody EJ, Rappold AG, Richardson DB, Neas LM, Gammon MD, Schieve LA, Daniels JL. Air pollution, neighborhood deprivation, and autism spectrum disorder in the Study to Explore Early Development. Environ Epidemiol. 2019 Oct;3(5):e067. [PMID: 32478281]
10. Levy SE, Pinto-Martin JA, Bradley CB, Chittams J, Johnson SL, Pandey J, Pomykacz A, Ramirez A, Reynolds A, Rubenstein E, Schieve LA, Shapira SK, Thompson A, Young L, Kral TVE. Relationship of Weight Outcomes, Co-Occurring Conditions, and Severity of Autism Spectrum Disorder in the Study to Explore Early Development. J Pediatr. 2019 Feb;205:202-209. [PMID: 30314662]
11. Croen LA, Qian Y, Ashwood P, Zerbo O, Schendel D, Pinto-Martin J, Daniele Fallin M, Levy S, Schieve LA, Yeargin-Allsopp M, Sabourin KR, Ames JL. Infection and Fever in Pregnancy and Autism Spectrum Disorders: Findings from the Study to Explore Early Development. Autism Res. 2019 Oct;12(10):1551-1561. [PMID: 31317667]
12. Croen LA, Qian Y, Ashwood P, Daniels JL, Fallin D, Schendel D, Schieve LA, Singer AB, Zerbo O. Family history of immune conditions and autism spectrum and developmental disorders: Findings from the study to explore early development. Autism Res. 2019 Jan;12(1):123-135. [PMID: 30095240]
13. Cordero C, Windham GC, Schieve LA, Fallin MD, Croen LA, Siega-Riz AM, Engel SM, Herring AH, Stuebe AM, Vladutiu CJ, Daniels JL. Maternal diabetes and hypertensive disorders in association with autism spectrum disorder. Autism Res. 2019 Jun;12(6):967-975. [PMID: 30969030]

Appendix III: HRSA-Supported ASD Research Studies and Tools

Table 1: Autism Intervention Research Network On Physical Health (AIR-P) Studies

Year Initiated*	Study Title	Description	Status
Year Initiated 2008	Study Title Autism Treatment Network (ATN) Registry	Description The AIR-P, through the ATN data registry, has made comprehensive data about children with ASD available to a broader research community.	Status Ongoing
Year Initiated 2015	Study Title Physical Exercise to Reduce Anxiety in Underserved Children with ASD	Description Study to examine the feasibility and efficacy of a physical exercise intervention to reduce anxiety in children from underserved families.	Status Ongoing
Year Initiated 2015	Study Title Improving Participation in Dental Care and Oral Health Outcomes for Underserved Children with ASD	Description Study to improve home dental hygiene, oral health, and compliance with dental procedures in underserved populations with ASD by comparing the efficacy of the AIR-P Dental Toolkit with a combined regimen involving the toolkit and a parent-mediated behavioral intervention.	Status Completed 8/31/2018
Year Initiated 2018	Study Title Resiliency Program for Siblings of Children with Autism Spectrum Disorder	Description Pilot study to improve resiliency in teenage siblings of children with ASD.	Status Ongoing
Year Initiated 2018	Study Title Registry Call-Back Assessment: Secondary Analyses	Description These secondary analyses arise from various young investigator interests in mining existing ASD Registry data. Topics include parental stress, exercise, oral health, and core autism symptoms.	Status Completed 8/31/2018
Year Initiated 2019	Study Title Ameliorate Childhood Obesity Risk from Newer Antipsychotics for Individuals with Autism Spectrum Disorder	Description Pilot study adapted an empirically validated pediatric weight management program for youth with ASD who gain weight on second-generation antipsychotics (SGAs).	Status Completed 8/31/2020
Year Initiated 2019	Study Title Evaluation of a Multimedia Sleep Education Package in Children with ASD	Description Pilot study to explore whether a multimedia sleep education package can be successfully provided to families and show efficacy in improving sleep habits and sleep problems along with parenting sense of competence.	Status Completed 8/31/2020
Year Initiated 2019	Study Title The Emotion Awareness and Skills Enhancement Program for Youth with ASD and Intellectual Disability (EASE-ID): A Mind- Body Intervention to Improve Sleep, Health, and Emotion Regulation	Description Pilot study to extend the benefits of a previously developed mindfulness-based intervention, the EASE Program, to youth with ASD and ID and evaluate its impact on sleep and overall physical health.	Status Completed 8/31/2018
Year Initiated 2020	Study Title Health Services and Systems Node: Health Research, Practice, and Policy Needs Assessments and Research Studies	Description The goal is to develop clear metrics and foster connections among researchers and policy makers to improve care coordination and service delivery on population-level life course outcomes for autistic individuals. Specific research priorities include supporting health care navigation and models of transition practices, training primary care providers in the adult health system, and educating individuals and families about transition care.	Status New
Year Initiated 2020	Study Title State Implementation of Health Risk Screening Tools	Description The overarching aim is to examine health outcomes and patterns of access to subsequent recommended care among children with autism in states that have implemented a health risk screening tool compared to a) states that do not have a health risk screening tool and b) states that utilize other approaches to screening for health risks.	Status New
Year Initiated 2020	Study Title Social Network Linkages to Grow Autism Physical Health Research	Description Aims to improve life outcomes for individuals with ASD through social network research. This study investigates how to strengthen employment outcomes for young adults on the autism spectrum in extended high school.	Status New

* From 2008-2020, the AIR-P awardee was Massachusetts General Hospital (MGH). In September 2020, the AIR-P awardee changed to University of California, Los Angeles (UCLA). All activities initiated prior to 2020 are attributed to AIR-P MGH; all activities initiated in 2020 and beyond are attributed to AIR-P UCLA.

Table 2: AIR-P Tools And Guidelines

Tool/Guideline Name	Description
Tool/Guideline Name EEG Guide for Parents	Brief Description Parents and providers may have concerns or questions about how to help children with ASD successfully complete an EEG. Two toolkits (one for parents and one for providers) were developed to provide information about the EEG procedure, how a child's ASD diagnosis might affect his or her experience, and how to help children with ASD successfully prepare for and complete an EEG.
Tool/Guideline Name EEG Guide for Providers	Brief Description Parents and providers may have concerns or questions about how to help children with ASD successfully complete an EEG. Two toolkits (one for parents and one for providers) were developed to provide information about the EEG procedure, how a child's ASD diagnosis might impact his or her experience, and how to help children with ASD successfully prepare for and complete an EEG.
Tool/Guideline Name Puberty and Adolescence	Brief Description All parents eventually face the challenge of teaching their children about the natural changes of puberty. However, parents of preteens with ASD may need the help of additional strategies to ease the transition. This tool provides guidance on the subject of puberty that can be directly applied to preteens with ASD. The tool aims to increase families' understanding of puberty and their ability to adapt to these changes with confidence.
Tool/Guideline Name Melatonin and Sleep Problems: A Guide for Parents	Brief Description Melatonin is a common medicine a doctor or health care provider may suggest to help improve sleep. This toolkit provides parents with information about melatonin and helps parents decide if melatonin is right for their child.
Tool/Guideline Name Guideline on Treatment of Anxiety	Brief Description The combined AIR-P/ATN network developed systematic ways to assess and treat coexisting conditions such as ASD and anxiety. This guideline provides methods for managing this and other coexisting conditions for which management was previously highly variable or sporadic. This guidance is intended for parent and professional communities.
Tool/Guideline Name Guideline on the Treatment of Irritability and Problem Behaviors	Brief Description The combined AIR-P/ATN network developed systematic ways to assess and treat irritability and problem behaviors when they coexist with ASD. This guideline provides methods for managing this and other coexisting conditions for which management was previously highly variable or sporadic. This guidance is intended for parent and professional communities.
Tool/Guideline Name Bedtime Routines	Brief Description The combined AIR-P/ATN network produced a short accessible video on bedtime routines. Network parents, clinicians, and researchers used materials developed by combined network, including the toolkit "Strategies to Improve Sleep", and up-to-date research to inform this video.
Tool/Guideline Name Daytime Habits	Brief Description The combined AIR-P/ATN network produced a short accessible video on daytime habits that may impact a child's sleep. Network parents, clinicians, and researchers used materials developed by combined network, including the toolkit "Strategies to Improve Sleep", and up-to-date research to inform this video.
Tool/Guideline Name First-Then Boards for Children with Autism Spectrum Disorder	Brief Description The combined AIR-P/ATN network produced a short accessible video on first-then boards, a visual aid that helps identify the direct consequences of an action, such as a reward for good behavior. Network parents, clinicians, and researchers used materials developed by combined network, including the toolkit "Visual Supports", and up-to-date research to inform this video.
Tool/Guideline Name Visual Schedule for Children with Autism Spectrum Disorder	Brief Description The combined AIR-P/ATN network produced a short accessible video on visual schedules, which are often used to help children with autism better transition to a new activity. Network parents, clinicians, and researchers used materials developed by combined network, including the toolkit "Visual Supports", and up-to-date research to inform this video.
Tool/Guideline Name "Adulting" Modules and Data Collection Instruments	Brief Description Pilot-tested a range of "adulting" modules and data collection instruments on physical and mental health, health care, relationships, financial well-being, civic engagement, and other important developmental topics for young adults with >100 UCLA students.
Tool/Guideline Name UCLA Needle Anxiety Protocol	Brief Description The UCLA needle anxiety protocol uses QI principles to recognize and implement strategies that health care providers can use to treat autistic patients and their families and improve overall performance.
Tool/Guideline Name Self-Determined Learning Model of Instruction (SDLMI)-Autism with Facilitator's Guide Tip Sheet	Brief Description This includes an interactive design to develop the materials supporting future research using the SDLMI-Autism in community-based settings to promote self-determination and other valued outcomes in autistic adolescents.

Table 3: Autism Intervention Research Network on Behavioral Health (AIR-B) Studies

Year Initiated*	Study Title	Description	Status
Year Initiated 2015	Study Title Mind the Gap	Description This multi-phase study aims to address the critical need to increase access to care for under-resourced children with ASD/DD and their families by conducting several focus groups and interviews with parents of low-income, minority children with ASD/DD across different sites (UCLA, UC Davis, University of Pennsylvania, and University of Rochester) to better understand challenges, barriers, and needs in the community.	Status Ongoing
Year Initiated 2015	Study Title Building Better Bridges	Description This multi-phase study aims to identify the barriers to successful transitions between educational systems for children with ASD/ DD by conducting focus groups and interviews with parents of children with ASD/DD across different sites (UCLA, UC Davis, University of Pennsylvania, and University of Rochester) to identify transition barriers. The findings informed an intervention to improve transition outcomes for children with ASD/DD and their families.	Status Ongoing
Year Initiated 2017	Study Title PARTNER	Description The PARTNER study aims to measure and monitor change among AIR-B community partners. Findings have informed AIR-B on how to improve collaborations and maximize resource sharing among AIR-B community partners to strengthen community care systems for underserved children with ASD/ DD and their families.	Status Ongoing
Year Initiated 2020*	Study Title Implementation Strategy Intervention for Remaking Recess	Description Remaking Recess is a school-based social/ peer engagement intervention for children ages 5 to 12. RR combines both peer-mediated (employing typically developing peers to support children with ASD/DD) and adult-facilitated (employing school personnel to facilitate social engagement for children with ASD/DD) approaches to increase children's social skills.	Status New
Year Initiated 2020*	Study Title Implementation Strategy Intervention for Self- Determination Learning Model of Instruction	Description The Self-Determination Learning Model of Instruction (SDLMI) is a self-advocacy intervention for adolescents with IDD (13 to 22 years old; 22 is the upper age limit of high school for individuals with disabilities). The SDLMI intervention enables the facilitator to teach students to self-direct the goal setting and attainment process to achieve educationally relevant goals and enhance self-determination.	Status New
Year Initiated 2020*	Study Title Implementation Strategy Intervention for Mind the Gap	Description Mind the Gap is a family navigation intervention for children newly diagnosed under age 8 to engage under-resourced families in accessing intervention services after an ASD/DD diagnosis.	Status New

*Note: For all AIR-B studies that initiated in 2020, the implementation strategy, UNITED ("Using Novel Implementation Tools for Evidence-based intervention Delivery") will be incorporated and will involve team building and sustainment via social networking. UNITED will be used to test how best to implement Remaking Recess, SDLMI, and Mind the Gap in the community. This implementation strategy intervention will help identify and train the best members of each organization or school to implement Remaking Recess, SDLMI, and Mind the Gap at that site. Intervention sites include: UCLA, UC Davis, University of Pennsylvania, University of Rochester, University of Kansas, University of Washington, and Drexel University.

Table 4: AIR-B Tools

Tool/Guideline Name	Description
Tool/Guideline Name Mind the Gap Parent Resource Binder (available in English and Spanish)	Brief Description This toolkit provides parents with resources that will guide them throughout the process of acquiring services for their newly diagnosed children. This binder includes topics such as: what is ASD, navigating the system, parent rights and child advocacy, understanding challenging behavior, communication development, dealing with stigma, from anxiety to acceptance, your social network, healthy lifestyle, and basic needs.
Tool/Guideline Name Building Better Bridges Transition Passport	Brief Description This tool supports parents with children undergoing a school transition, which contains a transition checklist, parent and student guide, a brief overview of the student, and resources tailored to meet the needs of the parent/caregiver and educational team members.
Tool/Guideline Name Social Dynamics of Intervention	Brief Description This tool measures change for the Building Better Bridges school transition intervention through social network mapping of the levels of communication and cooperation between all members of the child's transition team.
Tool/Guideline Name PARTNER	Brief Description This tool consists of surveys to measure the impact of engagement on the interagency collaboration of community partners.
Tool/Guideline Name Transition Back to School Resource Handbooks (available in English, Spanish, and Korean)	Brief Description To help guide students transitioning back to school during the COVID-19 pandemic, AIR-B developed a handbook for parents and teachers in English, Spanish, and Korean. Webinars on how to use the handbook are available in all three languages.
Tool/Guideline Name Community Conference (recordings available in English, Spanish, and Korean)	Brief Description In collaboration with community partners, AIR-B organizes an annual community conference in English, Spanish, and Korean. The theme of the March 2021 community conference focused on self-determination and the intersection of race/ethnicity and disability as well as helpful strategies parents/teachers/ self-advocates used in distance learning throughout the COVID-19 pandemic.

Table 5: Developmental Behavioral Pediatrics Research Network (DBPNET) Studies

Year Initiated*	Study Title	Description	Status
Year Initiated 2013	Study Title Maternal Immune Status and Autism Severity	Description This study proposes to replicate the presence of maternal autoantibodies in mothers of children with ASD in a geographically diverse population (Pennsylvania and Arkansas) utilizing the DBPNet and determine the association of these antibodies with autism severity and behavioral impairments.	Status Ongoing
Year Initiated 2014	Study Title Project EARLY: Engagement, Assessment, Referral, and Linkage for Young Children	Description The goal of the project is to provide real-world primary care practices with a replicable model of care that increases early identification and access to timely diagnostic and early intervention services for a vulnerable population of urban families.	Status Ongoing
Year Initiated 2014	Study Title Preliminary Validation of Selected Pediatric PROMIS Measures in Children with Autism Spectrum Disorder: A DBPNet Study	Description The purpose of this project is to determine the validity of the NIH Patient Reported Outcome Measurement Information System (PROMIS) pediatric parent-proxy reported Peer Relationships, Family Involvement, and Psychological Distress measures in 5- to 12-year-old children with ASD and elucidate how appropriately parents believe the PROMIS measures assess the constructs of peer relationships, family involvement, and psychological distress in their 5- to 12-year-old child with ASD.	Status Ongoing
Year Initiated 2017	Study Title Online Parenting Training in Pivotal Response Treatment: Increasing Access to Care.	Description The purpose of this pilot project is to assess the initial acceptability/feasibility of the online training program and collect the necessary pilot data in order to submit a multi-site R01 grant across DBPNet sites.	Status Ongoing
Year Initiated 2018	Study Title Diagnosis of Psychological Distress and Anxiety among Children with Intellectual Disability and Autism by Clinicians in Developmental- Behavioral Pediatrics, Child Psychiatry and Psychology: A Qualitative study	Description The purpose of this study is to understand how clinicians in the fields of Developmental- Behavioral Pediatrics, Child Psychiatry, and Psychology diagnose and manage psycho-logical distress and anxiety among children with ASD and ID through qualitative analyses including focus groups and individual interviews.	Status Ongoing
Year Initiated 2018	Study Title The Role of the Autism Diagnostic Observation Schedule in the Diagnosis of Autism by a Developmental-Behavioral Pediatrician: A DBPNet Study	Description The goals of this study are to determine the frequency with which the results of an Autism Diagnostic Observation Schedule (ADOS-2) alter the diagnostic conclusions of developmental behavioral pediatricians evaluating a child age 18 months to 5 years 11 months for possible ASD and to evaluate factors that are associated with the likelihood that the results of an ADOS-2 will alter developmental behavioral pediatricians' clinical diagnosis of ASD.	Status Ongoing
Year Initiated 2018	Study Title A Retrospective Description of the Effectiveness and Adverse Effects of Stimulants and Alpha-2 Agonists (A2A) Used by Developmental-Behavioral Pediatricians for the Treatment of ADHD in Preschool Aged Children	Description The primary objective of this study is to determine the percentage of preschool-aged children with ADHD who responded positively to stimulants and A2A based on a review of data in the EHR and to determine if there is a difference in the positive response rate to these two classes of medication. The secondary objectives are to describe type and frequency of adverse effects to stimulants and A2A when prescribed for the treatment of preschool-aged children for ADHD.	Status Ongoing
Year Initiated 2019	Study Title Understanding the Management of ADHD by Members of the Society for Developmental and Behavioral Pediatrics	Description The objective of this study is to describe the current practices of professionals in the Society of Developmental Behavioral Pediatrics regarding the assessment and management of ADHD in general and complex ADHD in particular. A secondary objective is to identify if there are demographic factors (e.g., practice location, clinician years in practice, clinician frequency of ADHD care, etc.) that impact practice patterns.	Status Ongoing
Year Initiated 2019	Study Title Improving Rates of Behavioral Treatment in Preschoolers through MEHealth for ADHD Software	Description The primary aims of this study is to collect pilot data for an online behavioral parent training intervention for preschool-aged children with ADHD.	Status Ongoing
Year Initiated 2020	Study Title Improving Access and Outcomes for Children with ADHD	Description The primary aim of this study is to collect pilot data for an online behavioral parent training intervention delivered by community-based paraprofessionals for children with ADHD.	Status New
Year Initiated 2020	Study Title Medication Treatment of ADHD in Children with ASD and Intellectual Disability	Description This is a secondary data analysis of data for the EHR study evaluating medication treatment of ADHD in children with ASD.	Status New

Table 6: DBPNET Tools and Guidelines

Tool/Guideline Name	Description
Tool/Guideline Name ADHD Guideline	Brief Description The DBPNet research director led the development of the complex ADHD guidelines published by the Society for Developmental and Behavioral Pediatrics.

Table 7: Healthy Weight Research Network (HWRN) Studies

Year Initiated*	Study Title	Description	Status
Year Initiated 2017	Study Title Trajectory of BMI in Children with ASD - a Follow-up to a Feeding Intervention	Description The goal of this project is to follow up with participants from a randomized controlled (wait-list) trial on parent training for feeding, in which 42 parents of children with ASD aged 2 to 7 learned behavioral strategies to increase their child's acceptance of new foods, improve their child's behavior during meals, and teach self-help skills related to meals. BMI, behavioral difficulties associated with meals, family practices around meals, parent stress, and three-day food records were assessed at three time points. The goal is to use these data to elucidate risk factors for obesity that are specific for children with ASD.	Status Completed 6/30/2019
Year Initiated 2017	Study Title Supporting Preschool Teachers to Promote Physically Active Plan Among Children with ASD and DD	Description The goal of this study is to develop and provide preliminary evidence that supports an online professional development program for preschool teachers who work with children with ASD/DD that is free of charge and can be accessed at any time, in any location, thus building the capacity of child care settings to appropriately promote sufficient daily physical activity, and ultimately healthy weight, among this population.	Status Completed 6/30/2019
Year Initiated 2017	Study Title Does Food Addiction Mediate the Relationship between BMI and ASD?	Description This study seeks to identify possible psychological mechanisms underpinning overeating and its links to increased BMI in children with ASD. The rationale for the proposed research is that identifying psychological mechanisms underlying overeating in ASD will allow examination of neural underpinnings of these behaviors and provide treatment targets, both of which can be explored in subsequent applications for grant funding.	Status Completed 6/30/2019
Year Initiated 2018	Study Title The Validity of Image-Assisted Food Records in Adolescents with IDD	Description The goal of this project is to assess the feasibility of conducting an energy intake validation study in adolescents with IDD and to evaluate the agreement and compare mean daily energy intake obtained from image-assisted three-day food records with mean daily energy expenditure in 20 adolescents with IDD.	Status Completed 6/30/2019
Year Initiated 2018	Study Title Engaging Children With Behavioral Health And Neurodevelopmental Disorders And Their Parents To Prevent Summer Weight Gain: Piloting The Game Squad Home Exergaming and Virtual Health Coaching Intervention	Description This project was funded through supplemental funding awarded to the HWRN by the Maternal and Child Health Bureau (MCHB). It piloted a physical activity and healthy lifestyle intervention for youth with neurobehavioral and behavioral health disorders through the use of exergaming (X-Box technology) and virtual coaching.	Status Completed 6/30/2019

Table 8: HWRN Tools and Guidelines

Tool/Guideline Name	Description
Tool/Guideline Name "Let's Go" Toolkits by Maine Medical Center and HWRN	Brief Description These toolkits support professionals who work with children with ID and DD. The objective of these toolkits is to provide resources for creating opportunities for all children to lead healthy lives. The toolkits aim to increase healthy eating and physical activity and decrease the risk of obesity among children with these disabilities.
Tool/Guideline Name Video Sports Illustrated for Children with Disabilities	Brief Description This interactive tool shows a video of children with disabilities playing baseball, soccer, swimming, track and field, basketball, and Wii-sports. Children who watch the video have the opportunity to describe their level of enthusiasm for each sport. At the end, they list their two favorite sports. Because the tool is visual rather than verbal, it is most appropriate for children with disabilities who have communication difficulties.
Tool/Guideline Name Assessing Community Satisfaction with Community Based Participatory Research	Brief Description This survey assesses the satisfaction of HWRN Advisory Board members and conference participants with their level of engagement in projects about children and families with disabilities.
Tool/Guideline Name Measure of Adaptive Behaviors Surrounding Eating	Brief Description This tool is used by clinicians and researchers to assess adolescents' abilities to engage in behaviors such as assisting with meal preparation and feeding themselves. The questions in this tool respond to a lack of appropriate existing measures to assess engagement in adaptive behaviors surrounding eating. When fully developed, this new adaptive eating behaviors measure will provide a useful tool for researchers and clinicians interested in assessing adaptive behaviors surrounding eating.
Tool/Guideline Name Strategies to Optimize Healthy Eating on a Low Budget	Brief Description This tool was developed for people on a limited food budget to assist in buying and preparing healthy food. Because many people with disabilities have modest incomes, the tool provided information on how they and their families can navigate this difficult subject.
Tool/Guideline Name Expert Panel Recommendations on Obesity Management by Primary Care Providers for Children with ASD	Brief Description The expert panel prepared the first set of recommendations on obesity management in children with ASD for dissemination to the public. This will be published in the journal Pediatrics.
Tool/Guideline Name Nutrition Education Workshops for Adults with Disabilities	Brief Description This manualized series of 11 workshops is a six-month interactive curriculum for people with DD and their care providers. Its development was supported in part by a 2014 grant from the NIH.
Tool/Guideline Name Positive Health Practices Curriculum for Adults with Developmental Disabilities	Brief Description This manualized intervention-available in paper and web-based formats- promotes healthy eating and physical activity for adults with disabilities. Its development was sponsored in part in 2015 by the Pennsylvania Office of Developmental Programs' Department of Public Welfare.
Tool/Guideline Name A Novel Weight Loss Tool for Adolescents with Intellectual Disabilities	Brief Description This tool was developed from an R01 randomized controlled weight loss trial for overweight/obese adolescents with ID. It was published in the Journal of the Academy of Nutrition and Dietetics.

Table 9: Autism Longitudinal Data Project (ALDP) Studies

Year Initiated*	Study Title	Description	Status
Year Initiated 2017	Study Title Early Life Origins of ASD: Role of Maternal and Cord Blood Metabolome, Placental Histology and Fetal Growth Trajectory	Description ALDP leverages the Boston Birth Cohort to accomplish the following aims: Aim 1. Examine the role of maternal and cord blood metabolomes in ASD; Aim 2. Examine placental histological findings in relation to the risk of ASD; Aim 3. Examine in utero fetal growth patterns in relation to the risk of ASD; Aim 4. Integrate multi-dimensional data to develop early prediction models and test interventions; and Aim 5. Provide leadership in education, training, and dissemination.	Status Ongoing
Year Initiated 2017	Study Title Opioid Crisis	Description These studies aim to examine the long-term impact of maternal opioids use during pregnancy on child health outcomes during critical developmental stages (fetal, early childhood, and school-aged).	Status Ongoing
Year Initiated 2017	Study Title US Maternal and Childhood Obesity Epidemics	Description These studies aim to examine the inter-generational impact of environmental obesogen exposure by examining maternal blood lead levels during pregnancy and maternal folate levels on her child's long-term risk of overweight or obesity (from birth up to 15 years of age).	Status Ongoing
Year Initiated 2017	Study Title Rising Rate of Attention Deficit Hyperactivity Disorder (ADHD) in US Children	Description These studies aim to examine the association of maternal and fetal blood biomarkers of acetaminophen (Tylenol) and its metabolites with child risk of ADHD.	Status Ongoing
Year Initiated 2019	Study Title ALDP Ancillary Study 1	Description Response to U.S. opioid crisis: A prospective birth cohort study to examine the long-term impact of maternal opioid use during pregnancy on child health outcomes.	Status Completed 8/31/2020
Year Initiated 2019	Study Title ALDP Ancillary Study 2	Description Response to U.S. maternal and childhood obesity epidemics: A prospective birth cohort study to examine the inter-generational impact of maternal prenatal environmental obesogen exposure (lead, mercury) on her child's long-term risk of overweight or obesity from birth up to 15 years of age.	Status Completed 8/31/2020
Year Initiated 2019	Study Title ALDP Ancillary Study 3	Description Response to rising rate of ADHD in U.S. children: A prospective birth cohort study to examine the association of maternal and fetal blood biomarkers of acetaminophen (Tylenol) and its metabolites with child risk of ADHD.	Status Completed 8/31/2020
Year Initiated 2020	Study Title A Prospective Birth Cohort Study on Cord Blood Folate Sub-Types and Risk of Autism Spectrum Disorder	Description This is the first study to show that folate sub-types have differential effects on ASD risk. This work is published in a leading nutrition journal.	Status New
Year Initiated 2020	Study Title The Association between Atopic Diseases and Neurodevelopmental Disabilities in a Longitudinal Cohort	Description In recognition of many comorbidities associated with ASD, this study focuses on a less studied comorbidity: allergic diseases in ASD. This work is currently under review by a pediatric journal.	Status New
Year Initiated 2020	Study Title The Impact of the COVID-19 Pandemic on Clinical Visits among High-Risk Minority Children: Findings from the Boston Birth Cohort	Description This is the first prospective study to examine the impact of the COVID-19 pandemic on clinical encounters among high-risk minority children, including children with ASD. This paper is being prepared for publication.	Status New
Year Initiated 2020	Study Title The Impact of the COVID-19 Pandemic on Clinical Visits among High-Risk Minority Mothers: Findings from the Boston Birth Cohort	Description This is the first longitudinal study to evaluate the impact of COVID-19 pandemic on maternal clinical encounters in understudied U.S. minority mothers, including those with children of ASD.	Status New
Year Initiated 2020	Study Title Interaction Between Maternal Immune Activation and Antibi-otic Use during Pregnancy and Child Risk of Autism Spectrum Disorder	Description This prospective study lent further support for the role of immune activation in the development of ASD.	Status New

Table 10: ALDP Tools

Tool/Guideline Name

Description

Tool/Guideline Name ASD Early Prediction Algorithm

Brief Description Although ASD is typically diagnosed after age 2, the root causes of ASD and the underlying biomarkers may be traced back long before clinical manifestations of ASD. The ASD early prediction algorithm raises the prospect that if high-risk children can be identified at an earlier stage, then intensive intervention can be considered to prevent or at least improve their health outcomes associatedwith a future ASD diagnosis.

Table 11: Autism Transitions Research Project (ATRP) Research Studies

Year Initiated*	Study Title	Description	Status
Year Initiated 2017	Study Title Factors Associated with Healthy Life Outcomes and Access to Needed Services among Transition Age Youth	Description Secondary data analysis is used to examine the factors associated with healthy life outcomes and access to needed services among transition-aged youth with ASD. Data sources include the SSA and Vocational Rehabilitation administrative data; national surveys; and various state-level data sources. Aims are to describe changes over time in the size, demographics, health, and disability characteristics (i.e. needs); access to services and related life outcomes; and to describe the distribution and correlates of access to services and related life outcomes.	Status Ongoing
Year Initiated 2017	Study Title Service Network Coordination and Social Capital	Description This project applies a mixed methods approach to adapt a method to measure transition-aged youth and adolescents' (TAYA) social capital and the coordination of intervention team members. The aims areto adapt a measure of social capital for the postsecondary transition and to pilot test the adapted social capital measure with TAYA with ASD, their parents, and transition coordinators before and after leaving high school.	Status Ongoing
Year Initiated 2017	Study Title Transition Odyssey	Description The project will develop and pilot test a scalable interview protocol to understand TAYA, family, and provider insights about the transition process, the genesis of disparities, and factors that influence outcomes. The aims are to understand the unique transition-related service access experiences of TAYA, and to understand participant perspectives about what constitutes healthy life outcomes.	Status Ongoing

Table 12: ATRP Tools

Tool/Guideline Name	Description
Tool/Guideline Name National Autism Indicators Reports	Brief Description The National Autism Indicators Report (NAIR) series presents research findings and raises awareness about the unique service needs of TAYA with ASD to inform policies and programs with the best available evidence. NAIR topics have included: transition into young adulthood; vocational rehabilitation; DD services and outcomes in adulthood; high school students on the autism spectrum; children on the autism spectrum and family financial hardship; health and health care; and family perspectives on services and supports.
Tool/Guideline Name Measurement Protocols for TAYA with ASD	Brief Description The two qualitative pilot studies, "Service Network Coordination and Social Capital" and "Transition Odyssey" are developing measurement protocols including youth, parent, and provider interviews and network protocols that can be used in future public health and services research on autism and transition. The first adapts an existing approach to measuring the social context of service provision and care coordination using innovative methods from social network analysis. The second adapts and integrates methods from two existing studies to develop a feasible, reliable, and valid approach to obtaining the perspectives of diverse TAYA and their caregivers.

Table 13: Autism Field-Initiated Research Studies (Autism First)

Year Initiated*	Study Title	Description	Status
Year Initiated 2017	Study Title Facing Your Fears in School Settings: Implementing a Cognitive Behavioral Therapy Program for Students with ASD or Other Special Learning Needs	Description This study aims to test a cognitive behavior therapy program for youth with ASD in school settings. Children with ASD are at high risk for developing clinically significant anxiety, which markedly interferes with peer relationships, family functioning, and participation in academic programming.	Status Ongoing
Year Initiated 2017	Study Title Expanding pathways to early screening and intervention for underserved toddlers with ASD (ASD-PATH)	Description This study aims to increase pathways of access to early detection and intervention for toddlers from Hispanic and low-income families in King County, Washington, by building community capacity for providing specialized screening, intervention, and family-centered care within the context of existing, accessible federally supported programs.	Status Ongoing

Table 14: Secondary Data Analysis Research (SDAR) Studies

Year Initiated*	Study Title	Description	Status
Year Initiated 2019	Study Title Understanding the impact of disparity in special education services for underrepresented groups with ASD	Description This study aims to characterize youth-level sociodemographic disparities in special education for under-resourced youth with ASD and sequentially to understand the impact of these disparities into young adulthood.	Status Ongoing
Year Initiated 2019	Study Title Characterizing the Health and Healthcare Utilization of Girls with Autism Spectrum Disorder in Florida	Description This study aims to address the gap in understanding the health care experiences of girls with ASD by using the OneFlorida Data Trust, a repository of Florida statewide electronic health record data and Medicaid administrative records, which includes health data for 74% of all Floridians.	Status Completed 8/31/2020
Year Initiated 2019	Study Title Race and Ethnic Discrepancies in Developmental Surveillance and Early Intervention	Description This study aims to determine whether racial/ ethnic discrepancies in the conjoint receipt of developmental screening and monitoring exist and if differences in developmental surveillance receipt predict racial/ethnic discrepancies of identified ASD in children under the age of 3.	Status Completed 6/30/2019
Year Initiated 2018	Study Title The Validity of Image-Assisted Food Records in Adolescents with IDD	Description The goal of this project is to assess the feasibility of conducting an energy intake validation study in adolescents with IDD and to evaluate the agreement and compare mean daily energy intake obtained from image-assisted three-day food records with mean daily energy expenditure in 20 adolescents with IDD.	Status Ongoing
Year Initiated 2019	Study Title Effects of Augmentative and Alternative Communication (AAC) Interventions on Speech Production for Individuals with Autism Spectrum Disorders and Other Developmental Disabilities: a Systematic Review and Meta-analysis	Description This study aims to synthesize the intervention literature on the effects of AAC intervention on natural speech production in individuals with ASD and other developmental disabilities.	Status Ongoing
Year Initiated 2020	Study Title The Intersection of Public Health Insurance and Community Connectedness for Kids with ASD/IDD and Their Family Caregivers: A Nationally Representative Study	Description This study aims to understand the experiences of children and family caregivers that use public health insurance programs and how these experiences differ for those with different levels of connectedness to their communities. Specific outcomes of interest include behavioral health and school participation of children, overall health of children and family caregivers, and economic engagement of family caregivers. The study will use 2014-2017 pooled National Health Interview Survey and link child, parent, and family data.	Status New
Year Initiated 2020	Study Title Assessing and Improving Health Care Transition (HCT) Services for Youth with Autism Spectrum Disorder	Description This study aims to develop and validate a measure of HCT services within a nationally representative survey and utilize this measure to examine access to HCT services among youth with ASD, youth with special health care needs, and youth without special health care needs.	Status New
Year Initiated 2020	Study Title Disparities in Health Care Access and Utilization of Children during Autism Insurance Reform	Description Research on factors contributing to access and utilization disparities in the U.S. pediatric population during autism insurance reform has been sparse. This study intends to fill this gap through two specific aims: 1) identify the determinants that contribute to disparities in health care access and utilization among children with ASD by early and late policy adopting states and 2) investigate potential changes in hospitalization patterns for children with ASD, prior to and following comprehensive ASD insurance reform.	Status New
Year Initiated 2020	Study Title An Ecological Approach to Understanding Obesity Risk among Children with ASD	Description The study uses the social-ecological framework to understand obesity risk in children with ASD. The prevalence of ASD and childhood obesity are increasing, and children with ASD are at an increased risk of obesity compared to typically developing children. As obesity in children with ASD may increase with age, there is a need to explore factors in adolescents with ASD as they transition to adult health care.	Status New

Appendix IV: List of Acronyms

A2A: alpha-2 agonists

AAC: augmentative and alternative communication

ABA: Applied Behavior Analysis

ACD: Comprehensive Autism Care Demonstration

ACE: Autism Centers of Excellence (NIH)

ACE Report: America's Children and the Environment Report (EPA)

ACF: Administration for Children and Families

ACL: Administration for Community Living

ADA: Americans with Disabilities Act

ADDM Network: Autism and Developmental Disabilities Monitoring Network

ADFM: Active Duty Family Member

ADHD: attention deficit/hyperactivity disorder

ADOS: Autism Diagnostic Observation Schedule

AEDY: Alternative Education for Disruptive Youth

AFIRM: Autism Focused Intervention Resources and Modules

AHRQ: Agency for Healthcare Research and Quality

AI/AN: American Indian/Alaska Natives

AIM: Apprenticeship Inclusion Models

AIR-P: Autism Intervention Research Network on Physical Health

AIR-B: Autism Intervention Research Network on Behavioral Health

ALDP: Autism Longitudinal Data Project

AoD: Administration on Disabilities

APRIL: Association of Programs for Rural Independent Living

ARP: Autism Research Program

ARPA: American Rescue Plan Act

ASD: autism spectrum disorder

ASD PEDS Network: ASD Pediatric Early Detection, Engagement, and Services Network

ASPE: Assistant Secretary for Planning and Evaluation

ASPEN Intervention Program: ASD Screening and Parent Engagement Intervention Program

ASPIRE: Advancing State Policy Integration for Recovery and Employment

ATN: Autism Speaks Autism Treatment Network

ATRP: Autism Transitions Research Project

ATSDR: Agency for Toxic Substances and Disease Registry

ATTRI: Accessible Transportation Technologies Research Initiative

AUCD: Association of University Centers on Disability

Autism CARES Act: Autism Collaboration, Accountability, Research, Education, and Support Act

Autism FIRST Program: Autism Field-Initiated Research Studies Program

Autism SDAR Program: Autism Secondary Data Analysis Research Program

Autism SIIP: Autism Single Investigator Innovation Program

AVP: arginine vasopressin

BCBA: Board Certified Behavior Analyst

BH2I: Behavioral Health Integration Initiative

BHDAP: Office of Behavioral Health, Disability, and Aging Policy

BHC: Behavioral Health Clinician

BJA: Bureau of Justice Assistance

BMI: body mass index

C-SSRS: Columbia Suicide Severity Rating Scale

CAA: Combating Autism Act of 2006

CAA: Consolidated Appropriations Act of 2021 (CMS)

CANDO: Center for Autism and Neurodevelopmental Disorders

CAPE-Youth: Center for Advancing Policy on Employment for Youth

CARA: Combating Autism Reauthorization Act of 2011

CARES Act: Coronavirus Aid, Relief, and Economic Security Act (HUD)

CDC: Centers for Disease Control and Prevention

CDER: Center for Drug Evaluation and Research

CDMRP: Congressionally Directed Medical Research Program

CHAMPVA: Civilian Health and Medical Program of the Department of Veterans Affairs

CHF: congestive heart failure

CHIP: Children's Health Insurance Program

CIL: Center for Independent Living

CMCS: Center for Medicaid & CHIP Services

CMHI: Children's Mental Health Initiative

CMS: Centers for Medicare & Medicaid Services

COPD: chronic obstructive pulmonary disorder

COVID-19: coronavirus disease 2019

CP: cerebral palsy

CPIR: Center for Parent Information and Resources

CPRC: Community Parent Resources Center

CRAFFT: Car, Relax, Alone, Forget, Friends, Trouble

CSESA: Center on Secondary Education for Students with Autism Spectrum Disorders

CSG: Council of State Governments

CYW: Center for Youth Wellness

DBP: developmental-behavioral pediatric

DBPNet: Developmental-Behavioral Pediatrics Research Network

DD: developmental disabilities

DD Act: Developmental Disabilities Assistance and Bill of Rights Act

DHA: Defense Health Agency

DIAL: Disability Information and Access Line

DoD: Department of Defense

DOJ: Department of Justice

DOL: Department of Labor

DOT: Department of Transportation

DRS: Disability Rights Section

DSM: Diagnostic and Statistical Manual of Mental Disorders

EARN: Employer Assistance and Resource Network on Disability Inclusion

EASE: Emotion Awareness and Skills Enhancement

ECHO: Extended Care Health Option

ECLS-K:2011: Early Childhood Longitudinal Study, Kindergarten Class of 2010-11

ED: Department of Education

EEOA: Equal Educational Opportunities Act

EEG: electroencephalogram

EHR: electronic health record

EHS: Early Head Start

EHV: Emergency Housing Voucher

EOS: Educational Opportunities Section

EPA: Environmental Protection Agency

EPSDT requirements: Early and Periodic Screening, Diagnostic, and Treatment requirements

FACES: Family and Childhood Experiences

FAPE: free and appropriate public education

FBCH: Fort Belvoir Community Hospital

FDA: Food and Drug Administration

FFS: fee-for-service

FIWA: Federal Interagency Workgroup on ASD

FMLA: Family and Medical Leave Act

FTA: Federal Transit Administration

FUP: Family Unification Program

FXS: Fragile X Syndrome

FY: Fiscal Year

FYI: Foster Youth to Independence

GAD-7: General Anxiety Disorder-7

GAO: Government Accountability Office

GIS: Geographic Information System

GNETS: Georgia Network for Educational and Therapeutic Support

GNO: Girls Night Out

GPS: Global Positioning System

HCBS: Home and Community-Based Services

HCT: health care transition

HCV: Housing Choice Voucher

HHS: Department of Health and Human Services

HRI: health-related independence

HRSA: Health Resources and Services Administration

HS: Head Start

HUD: Department of Housing and Urban Development

HUD-VASH: Department of Housing and Urban Development-Veterans Affairs Supportive Housing

HWRN: Healthy Weight Research Network

IACC: Interagency Autism Coordinating Committee

IACP: International Association of Chiefs of Police

ICP: Indian Children's Program

ID: intellectual disabilities

IDD: intellectual and/or developmental disabilities

IDEA: Individuals with Disabilities Education Act

IEP: Individualized Education Plan

IES: Institute of Education Sciences

IFSP: Individualized Family Service Plan

IHS: Indian Health Service

ILRU: Independent Living Research Utilization

JAN: Job Accommodation Network

JBLM CARES: Joint Base Lewis McChord Center for Autism Resources, Education and Services

K-12: kindergarten to 12th grade

LAUNCH: Linking Actions for Unmet Needs in Children's Health

LEND: Leadership Education in Neurodevelopmental and Other Related Disabilities

LGBTQIA+: Lesbian, Gay, Bisexual, Transgender, Queer and/or Questioning, Intersex, and Asexual and/or Ally

M-CHAT: Modified Checklist for Autism in Toddlers

MCH: maternal and child health

MCHB: Maternal and Child Health Bureau

MCN: Muscogee (Creek) Nation

MFP: Money Follows the Person

MGLS:2017: Middle Grades Longitudinal Study

MHS: Military Health System

n4a: National Association of Area Agencies on Aging

NAC: National Autism Coordinator

NACDD: National Association of Councils on Developmental Disabilities

NAIR: National Autism Indicators Report

NCATS: National Center for Advancing Translational Sciences

NCBDDD: National Center on Birth Defects and Developmental Disabilities

NCCJD: National Center on Criminal Justice and Disability

NCEE: National Center for Education Evaluation and Regional Assistance

NCER: National Center for Education Research

NCES: National Center for Education Statistics

NCHS: National Center for Health Statistics

NCIL: National Council on Independent Living

NCSER: National Center for Special Education Research

NCSL: National Conference of State Legislatures

NDRN: National Disabilities Rights Network

NDSS: National Down Syndrome Society

NED: non-elderly adults with disabilities

NICHD: Eunice Kennedy Shriver National Institute of Child Health and Human Development

NIDCD: National Institute on Deafness and Other Communication Disorders

NIDILRR: National Institute on Disability, Independent Living, and Rehabilitation Research

NIEHS: National Institute of Environmental Health Sciences

NIH: National Institutes of Health

NIMH: National Institute of Mental Health

NINDS: National Institute of Neurological Disorders and Stroke

NLP: natural language processing

NLTS 2012: National Longitudinal Transition Study 2012

NSCH: National Survey of Children's Health

NSF: National Science Foundation

OARC: Office of Autism Research Coordination

OASIS: Online and Applied System for Intervention Skills

ODEP: Office of Disability Employment Policy

ODPHP: Office of Disease Prevention and Health Promotion

OESE: Office of Elementary and Secondary Education

OHS: Office of Head Start

OJP: Office of Justice Programs

OMH: Office of Minority Health

OPE: Office of Postsecondary Education

OPRE: Office of Planning, Research, and Evaluation

ORR: Office of Refugee Resettlement

OS-PCORTF: Office of the Secretary Patient-Centered Outcomes Research Trust Fund

OSEP: Office of Special Education Programs

OSERS: Office of Special Education and Rehabilitative Services

P&A: Protection and Advocacy System

PARSEC: Participation in Rural Settings to Engage in Communities

PBDEs: polybrominated diphenyl ethers

PDCM Model: Professional Development and Case Management Model

PEAT: Partnership on Employment & Accessible Technology

PEHSU: Pediatric Environmental Health Specialty Unit

PFOA: perfluorooctanoic acid

PFOS: perfluorooctanesulfonic acid

PHA: public housing agency

PHAP: Public Health Associate Program

PHQ-9: Patient Health Questionnaire

PHQ-A: Patient Health Questionnaire Modified for Adolescents

PIR: Program Information Report

PLAY: Play & Language for Autistic Youngsters

PMHC Toolkit: Police-Mental Health Collaboration Toolkit

PPACA: Patient Protection and Affordable Care Act

PROMIS: NIH Patient Reported Outcome Measurement Information System

PSC: Pediatric Symptom Checklist

PTI: Parent Training and Information Center

R&D: Research and Development

RADx-UP Initiative: Rapid Acceleration of Diagnostics-Underserved Populations Initiative

RCDC: Research, Condition, and Disease Categorization

RePORT: Research Portfolio Online Reporting Tools

RETAIN: Retaining Employment and Talent After Injury/Illness Network

RFC: residual functional capacity

RRTC: Rehabilitation Research and Training Center

RSA: Rehabilitation Services Administration

RTAP: Rural Transit Assistance Program

SAMHSA: Substance Abuse and Mental Health Services Administration

SARS-CoV-2: severe acute respiratory syndrome coronavirus 2

SBIR: Small Business Innovation Research

SDLMI: Self-Determined Learning Model of Instruction

SEED: Study to Explore Early Development (CDC)

SEED: State Exchange on Employment & Disability (DOL)

SPA: state plan amendment

SPL: Special Litigation Section

SRO: school resource officer

SSA: Social Security Administration

SSDI: Social Security Disability Insurance

SSI: Supplemental Security Income

STAR: Science to Achieve Results

SWYC: Survey of Well-Being of Young Children

SY: school year

T-STEP: TEACCH School Transition to Employment and Postsecondary Education

TA: technical assistance

TAYA: transition-age youth and adolescents

TBHCE: Telebehavioral Health Center of Excellence

TEACCH: Treatment and Education of Autistic and Related Communication Handicapped Children

TRACK: Tools for Reading to Acquire Content Knowledge

TSC: Tuberous Sclerosis Complex

TTA: Training and Technical Assistance

UC: University of California

UCLA: University of California, Los Angeles

UCEDD: University Centers for Excellence in Developmental Disabilities Education, Research, and Service

UNITED: Using Novel Implementation Tools for Evidence-based Intervention Delivery

USPSTF: U.S. Preventive Services Task Force

U.S.: United States

VA: Department of Veterans Affairs

WIC: Special Supplemental Nutrition Program for Women, Infants, and Children

WIOA: Workforce Innovation and Opportunity Act of 2014

WPAFB: Wright Patterson Air Force Base

YPSC: Youth Pediatric Symptom Checklist

Cover Design
Medical Arts Branch, Office of Research Services, National Institutes of Health

Copyright Information
All material appearing in this Report is in the public domain and may be reproduced or copied. A suggested citation follows.

Suggested Citation
U.S. Department of Health and Human Services, National Institutes of Health, Office of Autism Research Coordination (on behalf of the Office of the Secretary). 2021 Report to Congress on the Health and Well-Being of Individuals with Autism Spectrum Disorder (ASD), under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019. September 2021. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/publications/report-to-congress/2021/.