Entering adulthood can be a challenge for anyone. But for someone with autism spectrum disorder (ASD), the transition to the workforce or college can feel overwhelming.
“For many people on the spectrum, they’ve lived their whole life with a safety net and support network in a controlled environment at home or school,” says Tom Flis, MS, BCBA, LBA, LCPC, clinical director for The Center for Autism at Sheppard Pratt. “They have a routine that they have been used to their whole life, and now it is turned upside down.”
While every person’s needs are unique, students with autism may have an individualized education program (IEP), occupational therapy, medication management, speech and language therapy, and applied behavioral analysis (ABA), among other services that support them at school and at home.
Policy decisions funding ASD services have focused predominantly on children. Laws like the 1975 Individuals with Disabilities Education Act—which mandates special education and wraparound services for children with ASD and other intellectual disabilities—expire at age 21.
“When a person is under 21 and meets the necessary criteria, they're entitled to these services through the school system,” says Sara Uram, LCSW-C, a clinical social worker at The Center for Autism at Sheppard Pratt. “But once that person transitions out of the school and into the adult world, they have to be deemed eligible for the services, and that's where it becomes more of a challenge,” she says.
Another challenge is finding doctors who specialize in adults with autism, because many work primarily with children. Additionally, colleges or workplaces may not be set up to provide useful services or accommodations for someone on the autism spectrum.
While transitioning from familiar services and support can feel like “falling off a cliff,” both Uram and Flis say the gap to adulthood can be more seamlessly bridged with proper planning and support.
A smooth transition
Independence and self-advocacy need to be honed from a young age. “I often say that this transition begins at diagnosis,” Uram says. “We are focusing on independence each step along the way, from early intervention into school, from middle school to high school, and transitioning out of school.”
During adolescence, youth and their parents should start thinking of what transitional services and skills may be necessary, such as job skills training, applying and interviewing for a job, money management, personal hygiene, and other independent living skills. “Even if the schools are providing this training, parents should be reinforcing those skills at home,” Flis says.
A new reality
The transition to adulthood will not be without bumps, so finding a support system that can help is essential. “Trying to establish friendships and relationships with peers is very important,” Flis says, adding that many in-person and online social groups are available for adults with autism.
To help manage day-to-day expectations, supporting and visual aids, such as checklists and calendars, can also be helpful, Uram says.
Parents must also prepare for their own transition. “Parents need to learn that new dance of life with an adult with autism and how that's different from living with a child with autism,” Uram says. “Helping building that autonomy and independence early is crucial.”
Clinical Director, The Center for Autism; Behavioral Services ManagerSpecialties:Applied Behavior Analysis, Autism Spectrum Disorder, Intellectual Disabilities, Neurodevelopmental Disorders, Psychotherapy