- The Latest
- Topics
-
About
Forgotten and friendless: adults on the autism spectrum
March 04, 2025
1 Reaction
I am the father of a 29-year-old adult with autism. My wife and I endured the many challenges of raising a child with autism, but we found that looking after an adult is even more difficult. I’d like to share some of our experiences.
Compared to the support for children with autism; when it comes to adults, parents are left to muddle through as best they can. After high school, it's like falling off a cliff. What my wife and I have discovered is there remains plenty of ignorance and indifference among employers, vocational rehabilitation and workforce assistance agencies.
Helping an adult child with autism "cope and thrive" is difficult, especially when reaching out to people you thought could be relied upon.
The first thing to remember is that autism does not define people. I recall sitting in an autism support group meeting when my child was in grade school. We were told by one woman: “autism is what my daughter has, but it is not who she is.”
That puts autism in its proper context. Since autism is a spectrum, the dynamics of the condition are different for each child or adult, but autism is very common. Autism Speaks, an advocacy group, says that 1 in 36 American children has autism and 1 in 45 adults.
As for caregiving responsibilities, “families are still the primary caregivers for adults with developmental disabilities and are themselves aging. About 76% of individuals with developmental disabilities reside at home. In 25% of these homes, the family caregiver is over 60 years of age and the average age of the care recipient with a developmental disability is age 38.”
Often, people with autism never achieve their full potential. According to the Autism Society’s 2023 Annual Report, “more than 66% of Autistic young adults are unemployed and are typically not engaged in higher education after high school.” In 2015, Drexel University’s A.J. Drexel Autism Institute published a National Autism Indicators Report: Transition into Young Adulthood. It found that “some (but not all) organizations measure indicators that track the quality and impact of the services they provide. Unfortunately, we have very few useful indicators at city, county, school district, state, or national levels. One thing we discovered early in this project is how little data is available to create meaningful indicators related to autism.”
The report discovered a number of research gaps which include a lack of “routinely updated, current and useful indicators that report specifically about the experiences of people with autism.” For example, why are so many young adults not connected to work and continued education after high school? The report noted that too few indicators exist that focus on health and mental health, such as co-occurring mental health challenges in adulthood. Two additional research needs I believe should be addressed include: data concerning personal safety and excessive increase in social media use with adults past the age of 18.
Lack of post-school support is a tragedy because we want our children to be more or less self-sufficient after we pass on. Depending on the level of care, some parents choose a residential setting, designated family members, or friends who will assume care once the parents die.
Legal guardianship may or may not be an option. I know wealthy parents who set up their own residential setting for their adult child and opened the housing to other adults with autism. However, most parents cannot do this.
Parents may also want to consider a Special Needs Trust. This can be expensive and requires the assistance of an attorney, court proceedings and designated trustee(s). Parents need to be prepared for the possibility of family members declining to assume responsibility, or they may be unable to locate anyone they can rely on. Residential housing can also be expensive, and the level, availability and quality of housing will vary by state.
One answer to housing needs may be to tap people who have the financial means and business savvy, and set up different levels of housing, depending upon the needs of the adult and their family. I’m not thinking about institutionalization but about ordinary homes in suburban neighborhoods as well as a variety of self-contained communities that are affordable for families. The appointment of Robert F. Kennedy Jrs as the new Secretary of Health and Human Services, is encouraging. He could utilize his MAHA initiative to fund research that gauges the experience of parents who care for an adult with autism.
We can only hope.
Some strategies for adults with autism
The first is friendship. In her book, Emergence: Labeled Autistic, Temple Grandin, an autistic woman who had a very successful professional career, highlights the need for good mentors and teachers. She also points out how “family meals and games also taught essential social skills.”
The 19th century Scottish novelist Robert Louis Stevenson noted how “We are all travelers in the wilderness of this world, and the best that we find in our travels is an honest friend.” But since adults with autism suffer from social anxiety and may have difficulty making conversation and reading social cues, initiating a friendship can seem daunting. In any case, each adult will display different aspects of autism. One may be non-verbal and have periodic outbursts or seizures, while another may be high-functioning and able to work full-time.
A lack of genuine friends and social isolation for the adult as well as the parents can result in comorbidities such as clinical depression, anxiety, and attempts at suicide. Online support groups exist, but they do not take the place of face-to-face conversations and friendships.
Achieving support for the adults as well as for their parents is difficult. A single parent struggling to work full-time and take care of other children may not have the time or resources to devote to the adult child living with autism. If the family is intact and both parents are working, and the adult is not able to be alone during the day, the parents must do the best they can. If the parents are retired, they may have their own health issues to contend with while also helping their adult child with such daily living concerns as nutrition, finances, chores, the social security system, health care and if they are able to work, locate and maintain employment.
One possible solution is to connect with another parent whose adult child has accomplished some level of independence and inquire about strategies and resources.
Temple Grandin also emphasizes the importance of developing a child’s strengths and interests instead of focusing on deficits. As she puts it,
“One thing I emphasized is that a child’s fixations should be broadened out and used to motivated learning, reading, and math. If a child loves trains, then read books about trains and do math problems with trains. There needs to be much more emphasis on developing a child’s talents. Too often, teachers concentrate only on the deficits and may neglect strengthening the talent area.”
In her book, Thinking in Pictures, Temple Grandin explains how one of her science teachers became her most important mentor in high school and during college. She also notes how the fixations of a person with autism can be developed into a career and improve social bonds with others. As Temple Grandin explains it,
“…an autistic person’s fixations can be their way to achieve some social life and friends. Teaching a person with autism the social graces is like coaching an actor for a play. Every step has to be planned. This is one reason Mr. Carlock did more for me than teach me science. He spent hours giving me encouragement when I became dejected by all the teasing by classmates. I was still able to see Mr. Carlock on weekends. This was very important for my success. He provided needed support and encouragement while I adapted to life in college.”
Beware of box-ticking bureaucrats
In Texas, where I live, there are agencies which help teenagers with disabilities to transition into the workforce after high school.
One of these is the Texas Workforce Commission which partners with Workforce Solutions. A client is assigned a Career Advisor who provides employment assistance. Workforce Solutions utilizes job coaches, who are independent from the agency, and who assist the client with resume writing, interviewing and locating employment. Once a job is obtained, the Career Advisor closes the case.
At this point, the job coach may assist the client with some level of supported employment for a limited period of time, after which the job coach assistance fades out. The limitation is a lack of follow-up. In other words, no one contacts the client to inquire about job satisfaction, if the person is still employed and if any difficulties have occurred during employment.
It’s not perfect. If, for example, the job is seasonal and the client becomes unemployed, the person may return to Workforce Solutions and the process will begin again. Is this the best way of helping the person thrive in their work?
Another agency that helps people with disabilities is the Texas Council for Developmental Disabilities (TCCD). However, when I attempted to contact TCCD by phone, I discovered both numbers listed on the Texas State Directory are not working numbers. I also sent an email to inquire about indicators that track the quality and impact of services provided for adults with autism but received no response. As parents of a disabled child, we have become used to this kind of “help”.
Unfortunately, some organizations work harder at compliance than at personalized help. I recall an employment agency that had placed an adult with autism in the restaurant and retail industry even though customer service was not this person’s strength. A supervisor at a government agency refused to allow a different adult with autism to utilize a “cheat sheet” at a front counter of a local library. There were other duties in the library, like shelving books or working behind the scenes, that would have been more in keeping with this person’s strong points.
Don’t quit
Several points Temple Grandin highlights in her writings are the importance of perseverance, determination and grit. She indicates how mentors, teachers and employers saw beyond the autism. They saw a person who had potential and with some encouragement and direction, could achieve great things.
I have seen how a faithful friendship can transform the life of an adult with autism for the better. It’s amazing what a single encounter or one conversation can do. It begins with one person reaching out to another. With persistence, the friendship has the potential to be a game changer. The writer and architect Henry Menzies sums it up: “Average people are interested in material things. Educated people are interested in ideas. But really wise people are interested in people.”
What’s your experience with adults with autism?
Craig Ortega retired from a career in juvenile probation after more than twenty years. He worked in field, court and residential services as well as training, accreditation and quality assurance. His interests include juvenile delinquency, culture, disability, and history.
Image credit: Bigstock
Have your say!
Join Mercator and post your comments.
