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Opportunities for growth: Transitions for youth with autism spectrum disorder

Autism spectrum disorder (ASD) is a lifelong condition that affects a person’s social and communication skills. People with ASD can have repetitive behaviors, a narrow range of interests, a strong preference for sameness, and sensory processing differences. The number of children diagnosed with ASD has increased dramatically over the past several decades. Because of this, growing numbers of youth with ASD are now making the developmental transition from adolescence to adulthood. This transition is marked by changes in many areas of life, including new healthcare providers, educational or occupational settings, and living arrangements.

What makes the transition to adulthood particularly challenging for youth with ASD?

There are several features of ASD that add challenges to the transitions of adulthood, including a strong preference for sameness and a difficulty tolerating change. Communication difficulties can also complicate expressing distress or asking for help. Young adults with ASD may also find it difficult to participate in more complex social relationships. Finally, many people with ASD are very detail-focused but have difficulty taking into consideration the larger context, which can affect planning and organizing.

What are some ASD-specific transitional needs?

Youth with ASD also have some specific transitional needs in terms of healthcare, education, employment, and independent living. They are more likely to have active medical needs and require a healthcare team that is familiar with ASD. Unfortunately, many adult healthcare providers receive very little ASD-specific training regarding common medical and psychiatric comorbidities, as well as the pragmatics of working with adults with ASD.

Helpful strategies for healthcare providers include adjusting the lighting in the examination room, being flexible as to where the patient sits, scheduling “practice visits,” minimizing wait times, and booking patients with ASD for either the first or last appointment of the day. Also, many young adults with ASD transition from their parents’ private health insurance plan to a public insurance plan, which can limit access to certain providers. Finally, many youth with ASD feel anxious about managing their own medical conditions. Parents also express concern about whether their adult child is capable of making their own medical decisions, and in some cases seek guardianship (a court-ordered arrangement in which a person is given authority to make decisions on behalf of another person), particularly when there is significant comorbid intellectual disability.

The transition to adulthood also marks an important change in the educational setting. The Individuals with Disabilities Education Act (IDEA) mandates that public education be available from ages 3 to 21. When an adult with ASD turns 22, he or she is expected to transition out of the school environment. This may result in loss of services, since many of these supports, including speech, behavioral, and occupational therapy, are provided through school. Leaving school can also result in loss of established social connections. Furthermore, young adults can have difficulty finding and accessing appropriate vocational or post-secondary educational environments that provide sufficient supports while also allowing the young adult to develop new skills.

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Written by Shobha

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