Independent Living on the Autism Spectrum

Independent Living on the Autism Spectrum

There has been a worldwide increase in reported cases of autism over the past decade. The prevalence rates in the US have risen steadily, from one in 150, to one in 110, and now to one in every 54 American children. This increase in the prevalence of ASD indicates that a correspondingly large number of youth will be transitioning into adulthood in the coming years. For example, it is estimated that approximately 50,000 adolescents with autism will turn 18 years old this year in the U.S. Unfortunately, outcomes are almost universally lower for young autistic adults compared to their peers.
                                                                             Research

As these numbers continue to rise, there is a pressing need to understand the transition experience of young adults with ASD in today’s world. According to a study published in the journal Autism, young autistic adults are more likely to live with their parents and least likely to live independently after leaving high school as compared to those with other types of challenges. For the study, researchers examined the prevalence and correlates of three living arrangements (with a parent or guardian, independently or with a roommate, or in a supervised setting) among a nationally representative sample of 620 postsecondary young adults with ASD since leaving high school. They were compared with 450 individuals with intellectual disability (InD), 410 with learning disabilities (LD) and 380 with emotional disturbance (ED) who were all part of the National Longitudinal Transition Study-2, a long-term federally-funded survey of students in special education and their parents.

Compared with other young adults with special needs, young adults with ASD were significantly more likely to have ever lived with a parent or guardian (87.1%) and less likely to have ever lived independently (16.6%) since leaving high school. In follow-up analyses, the researchers found no independent living among young adults with ASD who had been out of high school for 2 years or less at the time of the survey. 

Overall, the study’s findings show that young autistic adults have a different residential transition experience than their peers with LD, ED, or InD. They resided with a parent or guardian at higher rates and for longer periods of time after leaving high school than young adults with other disabilities. Moreover, young adults with ASD had the highest rate of supervised living arrangements and the lowest rate of independent living since leaving high school. These results suggest that young autistic adults are particularly vulnerable during the initial years in the transition to adulthood where they experience a shift in service provision after leaving high school. Consequently, many are not experiencing opportunities to explore various residential options as young adults.

Implications

The evidence presented in this study suggests that the vast majority of young adults with ASD will be residing in the parental or guardian home during the period of emerging adulthood. The lack of services available to help young autistic adults transition to greater independence has been noted by researchers for a number of years and has become an increasingly important issue as children identified with ASD reach adolescence and adulthood. Comprehensive transition planning and support for students leaving high school and exiting special educational programming, each with unique strengths, interests, and challenges, is an urgent task confronting our communities and schools. Greater emphasis must be placed on transition planning as a key process for helping youth build skills and access services as they leave school and enter adulthood. 

More research is needed to identify ways to effectively implement residential transition plans that best meet the needs and pref­erences of young autistic adults and their families. Research suggests that prolonged caregiving of an adult child with autism can adverse effects on maternal well-being. Thus, investigating a variety of in-home interventions that might improve the quality of life for families and adults may be helpful in that the vast majority of young adults are residing in the parental home. Lastly, the focus of intervention/treatment must shift from remediating the core deficits in childhood to promoting adaptive behaviors in secondary education that can facilitate and enhance ultimate functional independence and quality of life in adulthood. This includes addressing new developmental challenges such as independent living, vocational engagement, postsecondary education, and family support.

Key References and Further Reading

Anderson, K. A., Shattuck, P. T., Cooper, B. P., Roux, A. M., & Wagner, M. (2014). Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism, 18, 562-570.  doi: 10.1177/1362361313481860

Lake, J. K., Perry, A., & Lunsky, Y. (2014). Mental health services for individuals with high functioning autism spectrum disorder. Autism Research and Treatment, Volume 2014, Article ID 502420. doi:10.1155/2014/502420

Orsmond, G. I., Shattuck, P. T., Cooper, B. P., Sterzing, P. R., & Anderson, K. A. (2013). Social participation among young adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 270-2719. doi 10.1007/s10803-013-1833-8

Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University. Available from http://drexe.lu/autismindicators

Ohio Center for Autism and Low Incidence (OCALI). Transition to Adulthood Guidelines.
http://www.ocali.org/project/transition_to_adulthood_guidelines

Virginia Department of Education, Office of Special Education and Student Services (October, 2010). Autism Spectrum Disorders and the Transition to Adulthood.

Wagner, S. (2014). Continuum of services and individualized education plan process. In L. A. Wilkinson (Ed.). Autism spectrum disorder in children and adolescents:  Evidence-based assessment and intervention in schools (pp. 173-193). Washington, DC: American Psychological Association.

Wilkinson, L. A. (2017). A best practice guide to assessment and intervention for autism spectrum disorder in schools. Philadelphia & London: Jessica Kingsley Publishers.

Wrightslaw. Transition Planning. http://www.wrightslaw.com/info/trans.index.htm

Lee A. Wilkinson, PhD, is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. He is also editor of a text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition)