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.
How can caregivers and healthcare providers ease the transitions?
Although the transition to adulthood can seem daunting, there are several strategies that can be helpful. First, it is important to have a clear sense of a young person’s strengths, challenges, skills, and interests in order to develop realistic long-term goals and seek out educational and vocational settings that are a good fit. The person with ASD should be as involved in this process as possible. Smaller, intermediate goals can be developed with the long-term goal in mind. Progress should be assessed regularly, and the development of long-term goals can be a flexible and iterative process.
Second, since the transition to adulthood is complex, early preparation and a series of conversations is needed. Healthcare providers should initiate these conversations several years in advance to allow patients and families to prepare and seek additional resources. Caregivers may want to seek additional information about funding and services from their local state and federal agencies, including the state’s department of developmental services, the state’s vocational rehabilitation program, and the Social Security Administration. In some cases, legal counsel regarding guardianship may also be helpful. Further information on the transition to adulthood can be accessed through the Autism Speaks Resources Guide. Healthcare providers can also help ease the transition from pediatric to adult healthcare providers by creating written medical summaries, developing lists of adult healthcare providers familiar with ASD, and scheduling transition-specific appointments.
Finally, since independent living requires a range of self-care skills including personal hygiene, dressing, meal preparation, household chores, money management, self-advocacy, and community safety, it is important for caregivers and healthcare providers to gradually teach and assess acquisition of independent living skills throughout childhood, rather than waiting until an adolescent is on the cusp of adulthood. These skills can be developed through education, therapeutic supports such as occupational therapy, and positive reinforcement.
Seeking solutions to a public health issue via advocacy for people with ASD
The transition to adulthood can be challenging for adolescents with ASD, because of the nature of their condition and because of the many gaps in systems of care, limited public funds, and the need to coordinate among multiple agencies. These challenges are increasingly recognized as a major public health issue, and both patient advocates and medical providers who specialize in ASD are working to find solutions to these issues, by preparing people entering the healthcare field to become aware of the needs of people with ASD through life’s transitions. Successful navigation of the transition to adulthood can help set the stage for a young person with ASD to be able to tolerate, navigate, and seek support during future periods of change throughout adulthood.
Examining Primary Care Health Encounters for Adults With Autism Spectrum Disorder. The American Journal of Occupational Therapy, September-October 2019.
The Massachusetts General Hospital Guide to Medical Care in Patients with Autism Spectrum Disorder (Eric P. Hazen and Christopher J. McDougle, editors).