In The Politics of Autism, I write:
When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
“The challenges of living independently, gaining employment, attaining postsecondary education and building social relationships are greater for adolescents and young adults with autism,” said Nancy Cheak-Zamora, assistant professor of health sciences in the MU School of Health Professions. “It is vital that professionals are prepared to assist with the transition, and that they have insight into adolescent and caregiver experiences during the difficult time of transitioning to adulthood.”
Cheak-Zamora, Jennifer First, a doctoral candidate in the MU School of Social Work, and Michelle Teti, associate professor of health sciences, analyzed the reported experiences of adolescents with autism and their caregivers. They identified main themes of stress impacting families: challenges in accessing services, difficulties with adapting to transition changes, and managing multiple responsibilities and higher education challenges.
One of the study participants, a caregiver named Mary, related how the autism center in her community offered no support once children with autism leave. She said that she wishes that services would increase during this period; once children reach a certain age, it is difficult to find help. Caregivers and adolescents also reported a variety of strategies to cope with the stress of transitioning to adulthood with autism. Main themes included: accessing community support; receiving support from friends, family and teachers; and creating opportunities for self-determination, such as making independent choices and setting goals.
“For families who are experiencing a lack of available services for their adolescent with ASD, social workers can collaborate in forming family groups that advocate for more services for individuals living with autism into adulthood,” First said. “Social workers should assist families with the coordination of essential services such as medical treatment, mental health supports, independent living, respite care, college support and enhanced vocational support.”
“A qualitative study of stress and coping when transitioning to adulthood with autism spectrum disorder,” was published in the Journal of Family Social Work. Funding for the project was obtained from the Health Resources and Services Administration, Maternal and Child Health Bureau (H6MMC11059).