Young adults on the autism spectrum experience unique challenges in transition to adulthood

Jon Frangenberg is 23, and like many people his age, he’s learning to navigate the world as a young adult. Frangenberg recently moved out of his parents’ house and attends school at the Moberly Area Community College. He also works for University of Missouri Accounting. Some of Frangenberg’s success can be chalked up to his experience with the STRIVE program, a program by the Thompson Center for Autism and Neurodevelopmental Disorders to help young adults on the autism spectrum, like Frangenberg, lead independent lives.

Jon Frangenberg on his porch. Photo by Maxine Frangenberg.

Autism Spectrum Disorder is a cluster of developmental disorders that are characterized by social problems such as difficulty communicating and repetitive behaviors such as an intense interest in one subject, according to the National Institute of Mental Health. Caregivers usually notice symptoms within the first two years of a child’s life. Autism research and resources are skewed toward youth and adolescence. But people on the spectrum become adults just like anyone else, and there is little to help people on the spectrum transition into adulthood or thrive after that.

The U.S. Government Accountability Office released a report in May that said an estimated 85 percent of school districts had implemented services to help high school students on the autism spectrum transition into adulthood. These services are required by the Individuals With Disabilities Education Act (IDEA). Most of these services focused on teaching life, behavioral and social skills. The GAO said that, while on still a majority of districts provided employment related supports, there was a need for more. The report cited research that people on the autism spectrum are less likely than those with other disabilities to be successful in the adulthood transition, which means they’re more likely to rely on public assistance.

In Columbia, the Thompson Center and Boone County Family Resources have implemented programs, like the STRIVE program, to help young adults on the spectrum transition into adulthood. These programs aim to teach young adults skills to help them find jobs and live independently.

Cortney Fish is a certified behavior analyst at the Thompson Center and works with the STRIVE program. She said many programs help younger kids on the spectrum, but there aren’t a lot of services for young adults, and the services that are available generally do not receive a lot of funding.

For Jon, the STRIVE program was a hard adjustment, but he said it was worth it.

“It was a challenge. It was a bit rough for me, but I eventually pulled through and now things are going good,” Jon said. “It gave me a secure job.”

STRIVE stands for Self-determined Transition Readiness through Individual Vocational Experiences. The program is a two-semester long endeavor where students learn job skills. The second semester is work experience at a business chosen by the student. Jon chose MU Accounting and continues to work as a clerical assistant. He graduated from the program in May 2017. 

Before Jon started the STRIVE program, his parents felt that he would be ready to move out in the next five years. After starting the program, his parents felt like he was ready to move out much sooner, and Jon has moved into his own place shortly after finishing the program. The program pushed him to do many things, like finding his way around campus and going to different places.

“We were like, ‘Oh my gosh, we think he’s ready to move out,’” Maxine said. “You don’t know what you can do until you do it sometimes.”

Jon has also been involved in services provided by Boone County Family Resources since he was 14. He’s taken classes such as dating and relationships as well as budgeting and finance. Boone County Family Resources recently made its transition services available to everyone, not just those on Medicaid. Those services include apartment planning, self-advocacy and financial skills.

Jon has made significant strides in self-advocacy and independence, according to his mom. Transitions into adulthood and independent living can be challenging for anyone, and one of those challenges can present in the health system. While Jon was able to move out of his pediatrician’s care and into the care of an adult provider, for many on the spectrum it doesn’t always run that smoothly. While there are programs to help individuals gain job skills and other social skills, support for transitioning into adult health care is lacking. Transitions in health care are just as complex as other transitions, but unlike the educational system, which will end abruptly for people on the spectrum, some are not transitioning from their pediatrician to an adult provider. The transition is just not happening altogether.

People on the autism spectrum are staying with their pediatrician, and in most situations well into their 20s, said Nancy Cheak-Zamora, associate professor in health sciences at MU. She remembered hearing that a 32-year-old patient on the spectrum was getting surgery at a pediatric hospital because he had never transitioned to an adult provider because of his autism and other health issues.

“Adult providers aren’t trained in how to take care of people with developmental disabilities, so they don’t always feel comfortable taking care of someone with autism,” Cheak-Zamora said. “We have a really hard time finding people that will care for an adult with autism.”

Cheak-Zamora said that adult providers don’t have a lot of time to spend with each patient, and they don’t want to be medically liable for providing poor quality care. They might not know all the aspects of care they need in caring for a person on the spectrum, which makes them hesitant to take on new patients that have autism.

“We’re just still teaching providers that you don’t age out of autism. This is still an education point that we have to make to many health care providers.”

Much of that education is coming from the parents themselves, Cheak-Zamora said. Most of the parents she works with tells her that they are the ones to explain autism to their providers, and they don’t want to have to do that with another provider. This means they stay as long as possible with the pediatrician.

To help with the transition from pediatric to adult provider, Cheak-Zamora suggests that the patient be given more independence in early adolescence or around the ages of 12 or 13. This means letting the doctor speak to the patient without the parents in the room, so the patient learns to speak for themselves in a medical situation.

“I really advocate physicians to implement small individual responsibilities early on, so we can build on those as a child gets older, and then when they are an adult, maybe they can manage some of these on their own because they’ve had years and years of doing small things by themselves,” Cheak-Zamora said.

Sometimes the doctors are too uncomfortable to speak to the patient by themselves, she said. This also means patients may not get to talk about personal issues or get answers to questions about health, and specifically sexual health.

“A lot of pediatricians feel very uncomfortable talking to a person with developmental disabilities by themselves, so asking the parents to leave the room to talk about personal issues. rarely happens for people with disabilities,” Cheak-Zamora said. “Not many people are talking about sexual health with them.”

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