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Young Adults on the Autism Spectrum: The Struggle for Appropriate Services

They’re all coming. You can hear the rumbling of the ground. They’re going to come, and where are they going to go? —the mother of a 30-year-old with autism

Abstract

In the United States, young adults with an autism spectrum disorder (ASD) lose federally mandated supports upon leaving high school. To arrange adult services, families must prove their young adult’s eligibility and find competent service providers. National-level statistics regarding receipt of appropriate adult services are discouraging, but little is known about families’ lived experience with regard to services. Therefore, qualitative interviews focused on the search for and satisfaction with adult services were conducted with parents of young adults with ASD, then analyzed using the constant comparative method. Emergent themes included Bureaucracy and Fighting for Access, Staffing Issues, Program Suitability, and “Doing It Yourself.” The need to improve service access and delivery is discussed, as are issues facing specific ASD subgroups.

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Acknowledgments

We would like to express our gratitude to the families who made this research possible by sharing their experiences with us. We would also like to thank Towson University, the A. J. Drexel Autism Institute, and the Organization for Autism Research (OAR) for their generous support of this project. In addition, we would like to thank Alexis Lupfer for her contribution to data analysis during an earlier phase of the project, and Cheryl Cohen and Dr. Collette Sosnowy for their insightful comments on the final draft of this paper.

Funding

This study was funded by the A. J. Drexel Autism Institute (#U0022482) and the Organization for Autism Research (#5060002).

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Authors

Contributions

CA conceptualized the study; conducted all interviews; performed coding and qualitative data analysis; and drafted the final manuscript. CB performed coding and qualitative data analysis and contributed to the manuscript. Both authors read and approved the final manuscript.

Corresponding author

Correspondence to Connie Anderson.

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Conflict of interest

Connie Anderson declares that she has no conflict of interest; Catherine Butt declares that she has no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

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Anderson, C., Butt, C. Young Adults on the Autism Spectrum: The Struggle for Appropriate Services. J Autism Dev Disord 48, 3912–3925 (2018). https://doi.org/10.1007/s10803-018-3673-z

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  • DOI: https://doi.org/10.1007/s10803-018-3673-z

Keywords

  • Autism spectrum disorders
  • Grounded theory
  • Qualitative research
  • Services
  • Young adult outcomes