Marina Sarris

Date Revised: September 30, 2024

The road to adulthood begins for many teens when they graduate from high school and move on to a first job or college. But for people with autism — and their families — leaving high school is a more monumental step, one that will transform their relationship to services.

An estimated 50,000 autistic youth graduate from high school in the United States each year.¹ They leave a system where they could expect to get the services they need, and they enter a world where services are neither guaranteed nor, in many cases, available right away.

Many of these young adults will join the hundreds of thousands of people who are on wait lists for disability services in most states. More than half of the young adults will live with their parents, and 40 to 50 percent will not have a job, according to research.^2-4

“It’s a big transition, having to determine what’s next in life, whether that’s work, whether that’s where to live, and other things,” says Doug DeHaan, director of the Hussman Center for Adults with Autism at Towson University in Maryland. “That challenge is compounded by the wait list for services in the adult service system, and it’s compounded by the shortage of available services across the nation for people with autism to help them get jobs that they deserve to have.”

Autistic students who head to college will do so without the special education plans that they, their teachers, and parents crafted to help them succeed. They will move from a system where education is a right, to one where it is a privilege.

What can they, their families, and teachers do to make this transition to adulthood easier?

When Does Formal Transition Planning Begin for Autistic Youth?

Public schools should begin preparing students, at least those with an Individualized Education Program (IEP), for life after high school by age 16.

As part of transition planning, teachers typically review options, such as work, job training, college, and adult disability services with students and their families. They often ask about students’ interests and preferences, which can guide employment planning. Representatives of state disability and vocational rehabilitation agencies should also participate. They may attend IEP meetings to describe their services.

It’s important to understand that adult disability services are different, at their core, from the special education system.

By law, children who are eligible for early intervention and IEP services are guaranteed to receive them from birth until they graduate or turn 21. This is not the case with adult services. Those same students may be eligible for services such as housing, day programs, personal supports, and employment help. But whether and when they receive those services often depends on funding and the severity of their needs. States determine who is eligible, who receives priority when funding is limited, and how much to budget for these services.

Those budgets, unfortunately, fall short of people’s immediate needs in most states. In 2023, almost 700,000 adults, most with intellectual and developmental disabilities, were on wait lists or interest lists for home and community services in 38 states, according to a survey by KFF, formerly the Kaiser Family Foundation, which conducts health policy research.⁵

In New Jersey alone, thousands of people with disabilities are waiting seven to 10 years for group homes and supports, such as therapy, aides, and transportation, according to NorthJersey.com.⁶

Adult Disability Services and Self-Advocacy

The responsibility for getting services also shifts. Public schools are tasked with finding children with disabilities and providing services to them. But in the adult disability system, people who want services must apply for them.

“For some people, it is challenging to transition from a world where everything is structured from kindergarten through age 18 or 21, and you don’t always have to self advocate, to a world where you are required to self advocate,” says DeHaan, of the Hussman Center for Adults with Autism.

Self-advocacy can be difficult for autistic youth, who often have communication and social differences.

In college, autistic students who want accommodations, such as extended time on tests, must register with the college disability office. Their schools provide only the accommodations they deem “reasonable.”

“The system is not perfect. It’s going to be challenging,” DeHaan says. “Parents need to understand that the more your children can advocate for themselves at the IEP table before 18 or 21, and the more that you can empower your children to advocate for the life they want, the better.”

Youth at Risk of “Failing to Launch Successfully Into Adulthood”

These changes can make the road to adulthood rocky. More than half of autistic youths were neither working nor in college in the two years after leaving high school. In fact, they fared worse than their peers with other types of disabilities in several measures of post–high school outcomes.⁴

Autistic youth appear to be at “high risk for a period of struggling to find ways to participate in work and school after leaving high school,” according to some researchers.⁴ Several researchers have warned of problems with transition planning for youth with autism.

Sometimes, students don’t receive transition planning at school, or it begins too late, according to a 2018 report by the A.J. Drexel Autism Institute.⁷ Programs to help them may not be readily available. According to one study, for example, most autistic adults who may need help getting and keeping a job are not getting employment services.⁸

Taken together, “this leaves many families struggling to navigate on their own and results in too many youth failing to launch successfully into adulthood,” according to the A.J. Drexel Autism Institute report.⁷

Regina Lenzner, a participant in the SPARK autism study, said the transition planning she received at a high school in California was not helpful. She says IEP team members discouraged her from pursuing a career in the entertainment industry and psychology. “They put limitations on me,” says Lenzner, 23, who plans to become a psychologist. “Because of that, it took me years to realize that I’m in control of my own destiny.”

Today, she is studying psychology and pursuing her interests as an author, podcaster, film critic, and neurodiversity advocate, among other activities. She credits her mother for supporting her goals and career interests.

Families, of course, play a large role in the transition to adulthood.

When Should Families Begin Their Own Planning?

Start planning early, when children are young, experts say. “Parents ask me, ‘When should I start with transition planning?'” says Ernst O. VanBergeijk, Ph.D., MSW, who directed programs for students with autism and other developmental conditions at two universities. “I say, ‘Age six,’ and people look at me like I’m out of my mind. ‘That’s way too early,’ they say. But I say, you need to visualize your child at age 21. What is it like to be an independent adult?”

The skills of daily living — everything from personal hygiene, cleaning a room, preparing food, shopping, and managing money — can be taught beginning in early childhood, he says. Complex skills can be broken into small steps, and the steps can be gradually increased in complexity as a child gets older and learns them.

Autism experts often recommend that parents create schedules that use pictures or words to describe each step in a task, such as making a sandwich, and post them where the child will need them.

Continuing a Focus on Daily Living Skills for Youth With Autism

Schools may not include daily living skills when creating transition goals for a diploma-bound student. But families can request that they be added, says psychologist Amie W. Duncan, Ph.D. A study that she co-authored found that half of autistic students with at least average intelligence had problems with these skills.⁹ Some parents have successfully requested that money management skills be added to IEPs, Duncan says.

Other possible goals include the teaching of self-advocacy skills, as well as how to use public transportation. One in three autistic teens could not travel to places outside their homes very well or were not allowed to do so.⁷

The payoff for learning these skills is high. A study of autistic adults found that those with better daily living skills were more independent in their jobs and educational activities.¹⁰

What About Preparing an Autistic Student for Employment?

Ask your IEP team about programs such as Project SEARCH, which help move teens and young adults with disabilities into workplaces. Participants work as interns in hospitals and businesses for a year. Youth who do not have similar programs in their communities can gain work experience by having a volunteer or paying job.

“Having a student work for pay while still in high school really increases the probability of that student being employed after high school,” VanBergeijk says.

What Medical and Legal Changes Come With Adulthood?

Families should also plan for the transition to adult medical care. Only 18 percent of pediatricians talked to families about finding a doctor who treats adults.⁷ To prepare for the switch, families and pediatricians alike can talk to teens about how to make appointments and advocate for themselves with doctors. Parents should be aware that, once their children turn 18, they no longer have the right to talk to their doctors, unless their teens allow it, or they have legal guardianship.

Turning 18 also affects people’s participation in the research. To learn how to continue participating in the SPARK autism study, see “Research Participation After Turning 18.”

Most autistic adults do not need guardians. But families of those with high support needs may wish to consult an attorney about the legal options for their soon-to-be 18-year-old. These options may include guardianship or conservatorship, advanced directives, power of attorney, and supported decision-making.

Which options are available, and the laws and terms governing these options, vary from state to state, explains attorney Mallory Finn Legg, director of Project HEAL (Health, Education, Advocacy, and Law) at Kennedy Krieger Institute in Maryland.

One alternative to guardianship is supported decision making, which allows autistic adults to identify others who will help them make decisions, while keeping their independence. Almost 20 states, including California, New York, and Texas, have laws that formally recognize supported decision-making.

An attorney can discuss which options work best for the person, Legg says. “Guardianship removes legal rights from the individual and should only be considered when less restrictive alternatives are not suitable. A judge ultimately determines whether guardianship is appropriate for an individual.”

A Young Adult’s Advice

Lenzner, who serves on the SPARK Community Advisory Council, had this advice for those preparing to leave high school. “Your life is your own. Know what challenges you have, make sure that you understand them, and figure out how you can work with them to help you succeed. If you need something done a different way to help you learn and succeed, you find out that way.”

It may take longer to finish college or achieve a goal, she says. “And that is OK.”

Interested in joining SPARK? Here’s what you should know.

 Photo credit: iStock

References

1. Baio J. et al. MMWR Surveill. Summ. 67, 1-23 (2018) PubMed
2. Clarke E.B. et al. Am. Acad. Child Adolesc. Psychiatry 60, 978-985 (2021) PubMed
3. Lord C. et al. Autism 24, 1691–1703 (2020) PubMed
4. Shattuck P.T. et al. Pediatrics 129, 1042-1049 (2012) PubMed
5. Burns A. et al. KFF.org. Accessed Sept. 24, 2024.
6. Myers G. NorthJersey.com. Accessed Sept. 24, 2024.
7. Shattuck, P.T. et al. National Autism Indicators Report: High School Students on the Autism Spectrum. Philadelphia, PA: Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University (2018)
8. Roux A.M. et al. Milbank Q. 101, 1223-1279 (2023) PubMed
9. Duncan A.W. and S.L. Bishop Autism 19, 64-72 (2015) PubMed
10. Taylor J.L. and M.R. Mailick Dev. Psychol. 50, 699-708 (2014) PubMed