Putting the Research in Context: The Life Experience and Outcomes of Adults on the Autism Spectrum Receiving Services in 29 States

Hiersteiner, D., Bradley, V. J., Ne'eman, A., Bershadsky, J., & Bonardi, A. (2017). Putting the Research in Context: The Life Experience and Outcomes of Adults on the Autism Spectrum Receiving Services in 29 States. Inclusion, 5(1), 45-59. https://doi.org/10.1352/2326-6988-5.1.45

Publication date: 1 Mar 2017 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
5
Publication authors identified as autistic
1 / 5 (20.0%)

Abstract

State and federal reforms in the disability field have resulted in the expansion of supports that foster inclusion and integration in the mainstream of American society. However, adults with an autism spectrum disorder (ASD) diagnosis do not appear to have benefited from these changes to the same extent as those without an ASD diagnosis. This article uses National Core Indicators Adult Consumer Survey data to examine the demographic characteristics and outcomes for adults with an ASD diagnosis who receive services from state intellectual and developmental disabilities (IDD) systems. Building on the data, policy and research approaches are suggested.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:31.

Cited references
56
Total cited references integrated for this publication.
Cited references with an identified autistic author
1 / 56 (1.8%)
Cited author occurrences identified as autistic
1 / 110 (0.9%)
Among occurrences linked to AutiHub author records: 1 / 13 (7.7%). Distinct cited authors identified as autistic: 1 / 104 (1.0%).
Cited author occurrences linked to AutiHub author records
13 / 110 (11.8%)
Distinct linked cited authors: 12 / 104 (11.5%)
Linked cited-author occurrences not identified as autistic
12 / 13 (92.3%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 12 / 110 (10.9%). Distinct linked cited authors not identified as autistic: 11 / 12 (91.7%).
2 cited bibliography entries could not be fully enriched from DOI metadata.
Crossref: not found (1) · DataCite: not found (1)
  1. Mari Watanabe , Peter Sturmey (2003). The Effect of Choice-Making Opportunities During Activity Schedules on Task Engagement of Adults with Autism . Journal of Autism and Developmental Disorders, 33(5), 535-538. Springer Science and Business Media LLC.
    Crossref OpenAlex
  2. (n.d.). 1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism: Hearings before the Committee on Oversight & Government Reform House of Representatives 112th Cong. 1 (2012 November29). http://oversight.house.gov/wp-content/uploads/2012/11/Neeman-Testimony-and-TnT.pdf
    Type: Other
    Crossref
  3. Renáta Tichá , Amy Hewitt , Derek Nord , Sherri Larson (2013). System and Individual Outcomes and Their Predictors in Services and Support for People with IDD . Intellectual and Developmental Disabilities, 51(5), 298-315. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  4. Elizabeth E. Biggs , Erik W. Carter (2016). Quality of Life for Transition-Age Youth with Autism or Intellectual Disability . Journal of Autism and Developmental Disorders, 46(1), 190-204. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  5. ABLE Act of 2014 H. R. 647 113th Cong. (2014).
    Type: Other
    Crossref
  6. Gillian Baird , Emily Simonoff , Andrew Pickles , Susie Chandler , Tom Loucas , David Meldrum et al. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP) . The Lancet, 368(9531), 210-215. Elsevier BV.
    Crossref OpenAlex OpenCitations
  7. Shmuel Shulman (1993). Close friendships in early and middle adolescence: Typology and friendship reasoning . New Directions for Child and Adolescent Development, 1993(60), 55-71. Hindawi Limited.
    Crossref OpenAlex
  8. Amado, A. (2013). Amado, A. (2013). Friends: Connecting people with disabilities and community members. Minneapolis, MN: University of Minnesota, Institute on Community Integration, Research and Training Center on Community Living. Friends: Connecting people with disabilities and community members.
    Type: Other
    Crossref
  9. Janet E. Graetz (2010). Autism grows up: opportunities for adults with autism . Disability & Society, 25(1), 33-47. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  10. Lynn Mawhood , Patricia Howlin (1999). The Outcome of a Supported Employment Scheme for High-Functioning Adults with Autism or Asperger Syndrome . Autism, 3(3), 229-254. SAGE Publications.
    Crossref OpenAlex OpenCitations
  11. American Psychiatric Association (2000). Diagnostic and Statistical Manual of Mental Disorders (4th ed., text rev.) . Diagnostic and statistical manual of mental disorders (4th ed., text rev.).
    Type: Other
    Crossref
  12. Shmuel Shulman , James Elicker , L. Alan Sroufe (1994). Stages of Friendship Growth in Preadolescence as Related to Attachment History . Journal of Social and Personal Relationships, 11(3), 341-361. SAGE Publications.
    Crossref OpenAlex OpenCitations
  13. Paul Shattuck , Mary Wagner , Sarah Narendorf , Paul Sterzing , Melissa Hensley (2011). Post–High School Service Use Among Young Adults With an Autism Spectrum Disorder . Archives of Pediatrics & Adolescent Medicine, 165(2), 141-6. American Medical Association (AMA).
    Crossref OpenAlex OpenCitations
  14. Americans With Disabilities Act of 1990 42 U. S. C. § 12101 (1990).
    Type: Other
    Crossref
  15. Patricia Howlin , Susan Goode , Jane Hutton , Michael Rutter (2004). Adult outcome for children with autism . Journal of Child Psychology and Psychiatry, 45(2), 212-229. Wiley.
    Crossref OpenAlex OpenCitations
  16. Amy S. Hewitt , Roger J. Stancliffe , Annie Johnson Sirek , Jennifer Hall-Lande , Sarah Taub , Joshua Engler et al. (2012). Characteristics of adults with autism spectrum disorder who use adult developmental disability services: Results from 25 US states . Research in Autism Spectrum Disorders, 6(2), 741-751. Elsevier BV.
    Crossref OpenAlex OpenCitations
  17. Autism CARES Pub. L. 113–157 42 U. S. C. § 280i(2014).
    Type: Other
    Crossref
  18. Autistic Self Advocacy Network. (2014a). ASAN disability rights organizations urge changes to Combating Autism Act. http://autisticadvocacy.org/2014/06/combating-autism-act/
    Type: Other
    Crossref
  19. Robert Evert Cimera , Richard J. Cowan (2009). The costs of services and employment outcomes achieved by adults with autism in the US . Autism, 13(3), 285-302. SAGE Publications.
    Crossref OpenAlex OpenCitations
  20. Autistic Self Advocacy Network (2014). Autistic Self Advocacy Network. (2014b). ASAN applauds congressional letter urging self-advocate inclusion. http://autisticadvocacy.org/2014/10/asan-applauds-congressional-letter-urging-self-advocate-inclusion/ ASAN applauds congressional letter urging self-advocate inclusion.
    Type: Other
    Crossref
  21. Autistic Self-Advocacy Network (2015). Autistic Self-Advocacy Network. (2015, September). The Transition to Independence Act: An introduction. http://autisticadvocacy.org/wp-content/uploads/2015/09/Policy-Intro-Transition-to-Independence-Act.pdf The Transition to Independence Act: An introduction.
    Type: Other
    Crossref
  22. Autistic Self Advocacy Network, National Youth Leadership Network, Self-Advocates Becoming Empowered , allies (2009). Autistic Self Advocacy Network, National Youth Leadership Network, Self-Advocates Becoming Empowered, and allies. (2009). Keeping the promise: Self advocates defining the meaning of community living. Washington, DC: Autistic Self Advocacy Network. https://autisticadvocacy.org/wp-content/uploads/2012/02/KeepingthePromise-SelfAdvocatesDefiningtheMeaningofCommunity.pdf Keeping the promise: Self advocates defining the meaning of community living.
    Type: Other
    Crossref
  23. Meredyth Goldberg Edelson (2006). Are the Majority of Children With Autism Mentally Retarded? Focus on Autism and Other Developmental Disabilities, 21(2), 66-83. SAGE Publications.
    Crossref OpenAlex OpenCitations
  24. Karen Hurlbutt , Lynne Chalmers (2004). Employment and Adults With Asperger Syndrome . Focus on Autism and Other Developmental Disabilities, 19(4), 215-222. SAGE Publications.
    Crossref OpenAlex OpenCitations
  25. Baio, J. (2014). Prevalence of autism spectrum disorder among children aged 8 years . Surveillance Summaries, 63(02), 1.
    Type: Other
    Crossref
  26. J O Renty , Herbert Roeyers (2006). Quality of life in high-functioning adults with autism spectrum disorder . Autism, 10(5), 511-524. SAGE Publications.
    Crossref OpenAlex OpenCitations
  27. Bershadsky, J. (2011). Bershadsky, J. (2011). What does NCI tell us about people with autism? An update (NCI Data Brief Issue 3). Cambridge, MA: Human Services Research Institute. http://www.nationalcoreindicators.org/upload/core-indicators/Data_Brief_–_autism_–_2011_–_No_3.pdf What does NCI tell us about people with autism? An update (NCI Data Brief Issue 3).
    Type: Other
    Crossref
  28. Robert L. Schalock , Ivan Brown , Roy Brown , Robert A. Cummins , David Felce , Leena Matikka et al. (2002). Grammar and Lexicon in Facilitated Communication: A Linguistic Authorship Analysis of a Finnish Case . Ment. Retard., 40(6), 347.
    Type: Article DOI: 10.1352/0047-6765(2002)040 OpenAlex: https://openalex.org/W2190277196 Crossref: not found DataCite: not found
    OpenAlex OpenCitations
  29. Gillian Baird (2012). 2.64% of South Korean children aged 7 to 12 have autism spectrum disorders . Evidence Based Mental Health, 15(1), 11-11. BMJ.
    OpenCitations
  30. Center for Public Representation & Nonotuck (2015). Center for Public Representation & Nonotuck. (2015). About SDM: What is supported decision-making?Northampton, MA: Center for Public Representation. http://supporteddecisions.org/about-sdm/ About SDM: What is supported decision-making?.
    Type: Other
    Crossref
  31. Young Shin Kim , Bennett L. Leventhal , Yun-Joo Koh , Éric Fombonne , Eugene Laska , Eun-Chung Lim et al. (2011). Prevalence of Autism Spectrum Disorders in a Total Population Sample . American Journal of Psychiatry, 168(9), 904-912. American Psychiatric Association Publishing.
    Crossref OpenAlex
  32. Janet B W Williams , Michael First (2013). Diagnostic and Statistical Manual of Mental Disorders . Encyclopedia of Social Work. Oxford University PressNew York, NY.
    OpenAlex
  33. Crowley, J. (2003). Crowley, J. (2003). An overview of the Independence Plus initiative to promote consumer-direction of services in Medicaid. Washington, DC: Henry J. Kaiser Foundation. https://kaiserfamilyfoundation.files.wordpress.com/2013/01/an-overview-of-the-independence-plus-initiative-to-promote-consumer-direction-of-services-in-medicaid.pdf An overview of the Independence Plus initiative to promote consumer-direction of services in Medicaid.
    Type: Other
    Crossref
  34. Developmental Disabilities Assistance and Bill of Rights Act of 2000 Pub. L. No. 106-402 42 U. S. C. § 15113(2000).
    Type: Other
    Crossref
  35. Hall-Lande, J., (2011). Hall-Lande, J., Hewitt, A., & Moseley, C. R. (2011). Policy research brief: A nationalreview of Home and Community Based Services (HCBS) for individuals with autism spectrum disorders(Vol. 21, No. 3). https://ici.umn.edu/products../prb/213/213.pdf Policy research brief: A nationalreview of Home and Community Based Services (HCBS) for individuals with autism spectrum disorders.
    Type: Other
    Crossref
  36. Hiersteiner, D., (2015). Hiersteiner, D., Bonardi, A., & Bradley, V. (2015). What NCI data reveal about service delivery and the respect given to the rights of people with I/DD? (National Core Indicators Data Brief). Cambridge, MA: Human Services Research Institute. http://www.nationalcoreindicators.org/upload/core-indicators/NCI_DataBrief_MARCH2015_edits_v2_042015.pdf What NCI data reveal about service delivery and the respect given to the rights of people with I/DD? (National Core Indicators Data Brief).
    Type: Other
    Crossref
  37. Hiersteiner, D., (2014). Hiersteiner, D., Engler, J., Bershadsky, J., Bradley, V. & Fay, M. (2014). What do NCI data reveal about individuals with intellectual and developmental disabilities who communicate nonverbally? (National Core Indicators Data Brief). Cambridge, MA: Human Services Research Institute. http://www.nationalcoreindicators.org/upload/core-indicators/NCI_DataBrief_Jan2014_042015.pdf What do NCI data reveal about individuals with intellectual and developmental disabilities who communicate nonverbally? (National Core Indicators Data Brief).
    Type: Other
    Crossref
  38. Individuals with Disabilities Education Act (IDEA) 20 USC §1400 et seq. (2004).
    Type: Other
    Crossref
  39. Interagency Autism Coordinating Committee. (2012). IACC/OARC autism spectrum disorder research portfolio analysis web tool [Online database]. https://iacc.hhs.gov/apps/portfolio-analysis-web-tool/projects
    Type: Other
    Crossref
  40. Kurtz, A., (2008). Kurtz, A., & Jordan, M. (2008). Supporting individuals with autism spectrum disorders: Quality employment practices (Issue No. 25). Boston, Massachusetts: Institute for Community Inclusion. https://www.communityinclusion.org/pdf/IB25_F.pdf Supporting individuals with autism spectrum disorders: Quality employment practices (Issue No. 25).
    Type: Other
    Crossref
  41. Medicaid Program: Home and Community -Based State Plan Services 79 FR 2947 (2014). https://www.federalregister.gov/articles/2014/01/16/2014-00487/medicaid-program-state-plan-home-and-community-based-services-5-year-period-for-waivers-provider
    Type: Other
    Crossref
  42. Migliore, A., (2012). Migliore, A., Butterworth, J., & Zalewska, A. (2012)What are the trends in employment outcomes of youth with autism: 2006-2010 (Research to Practice Brief, Issue No. 53). Boston, Massachusetts: Institute for Community Inclusion. https://www.communityinclusion.org/article.php?article_id=350 What are the trends in employment outcomes of youth with autism: 2006-2010 (Research to Practice Brief, Issue No. 53).
    Type: Other
    Crossref
  43. National Council on Disability (2012). National Council on Disability. (2012). Report on subminimum wage and supported employment. Washington: DC: Author. http://www.ncd.gov/publications/2012/August232012 Report on subminimum wage and supported employment.
    Type: Other
    Crossref
  44. National Council on Disability (2015). Home and community-based services: Creating systems for success at home, at work and in the community . Home and Community-Based Services: Creating systems for success at home, at work and in the community.
    Type: Other
    Crossref
  45. Ne'eman, A., (2012). Ne'eman, A., & Kapp, S. (2012). What are the stakes? An analysis of the impact of the DSM-5 draft autism criteria on law, policy and service provision. Washington, DC: Autistic Self Advocacy Network. http://autisticadvocacy.org/wp-content/uploads/2012/06/DSM-5_Policy_Brief_ASAN_final.pdf What are the stakes? An analysis of the impact of the DSM-5 draft autism criteria on law, policy and service provision.
    Type: Other
    Crossref
  46. Patient Protection and Affordable Care Act 42 U. S. C. § 18001 (2010).
    Type: Other
    Crossref
  47. Pell, E., (2015). Pell, E., Dorfman, D., Walto, M., Benoit, A., & Emerson, P. (2015)Systems change to promote rights: A supported decision making initiative and National Core Indicators data. Presented at the annual conference of American Association on Intellectual and Developmental Disabilities, Louisville, KY. http://www.nationalcoreindicators.org/upload/presentation/AAIDD_2015_SDM_Pilot_and_NCI_FINAL.pdf Systems change to promote rights: A supported decision making initiative and National Core Indicators data.
    Type: Other
    Crossref
  48. Michael Spence (1973). Job Market Signaling . The Quarterly Journal of Economics, 87(3), 355. Oxford University Press (OUP).
    Type: Article DOI: 10.2307/1882010 OpenAlex: https://openalex.org/W2115747715
    Crossref
  49. Johnson Foundation. Robert Wood (2015). Robert Wood Johnson Foundation. (2015). Cash and Counseling: This national program introduced or expanded participant-directed personal assistance services in Medicaid. Princeton, NJ: Author. http://www.rwjf.org/content/dam/farm/reports/program_results_reports/2015/rwjf406468 Cash and Counseling: This national program introduced or expanded participant-directed personal assistance services in Medicaid.
    Type: Other
    Crossref
  50. Robert L. Schalock , Ivan Brown , Roy Brown , Robert A. Cummins , David Felce , Leena Matikka et al. (2002). Conceptualization, Measurement, and Application of Quality of Life for Persons With Intellectual Disabilities: Report of an International Panel of Experts . Mental Retardation, 40(6), 457-470. American Association on Intellectual and Developmental Disabilities (AAIDD).
    Crossref
  51. Taub, S., (2008). Taub, S., Bradley, V., Engler, J., & Moseley, C. (2008)What does NCI tell us about people with autism? (Data Brief Vol. 6, Issue 2). Cambridge, MA: Human Services Research Institute. What does NCI tell us about people with autism? (Data Brief Vol. 6, Issue 2).
    Type: Other
    Crossref
  52. Transition to Independence Act S. 1604 114th Cong. (2015).
    Type: Other
    Crossref
  53. U.S. Department of Health , Human Services, Centers for Medicare , Medicaid Service (2014). U. S. Department of Health and Human Services, Centers for Medicare and Medicaid Service. (2014). Home and Community Based Services settings rule, 79 Fed. Reg. 2947 (Jan. 16, 2014). Home and Community Based Services settings rule, 79 Fed. Reg. 2947 (Jan. 16, 2014).
    Type: Other
    Crossref
  54. U.S. Department of Health , Human Services, Office of the Secretary (2014). U. S. Department of Health and Human Services, Office of the Secretary. (2014). Section 2402(a) of the Affordable Care Act – Guidance for implementing standards for person-centered planning and self-direction in Home and Community-Based Services programs. Baltimore, MD: Author. Section 2402(a) of the Affordable Care Act – Guidance for implementing standards for person-centered planning and self-direction in Home and Community-Based Services programs.
    Type: Other
    Crossref
  55. Zaharia, R., (2008). Zaharia, R., & Moseley, C. (2008). State strategies for determining eligibility and level of care for ICF/MR and waiver program participants. New Brunswick, NJ: Rutgers Center for State Health Policy. State strategies for determining eligibility and level of care for ICF/MR and waiver program participants.
    Type: Other
    Crossref