By Campbell Teague
Autism is a neurological condition that affects 1 out of 59 people. Most people are diagnosed when they are children. Eventually those children grow up. When an autistic person becomes an adult, all the changes can make it an especially challenging time for them and their families.
Health care is critical for everybody, but it is very crucial for people on the spectrum.
Legally reaching adulthood on a person’s 18th birthday is a rite of passage that most people look forward to. For people with autism and their parents, adulthood brings challenging decisions and uncertainty. There is a big question on everyone’s mind: What is going to happen next?
There is an old saying that it takes a village to raise a child. That village continues to grow well into adulthood for people on the spectrum. Parents and self-advocates often start talking about the transition to adulthood with their pediatricians. That seems like a good place to start, but not all doctors know how to treat or communicate with autistic patients. Some doctors do not understand that a person on the spectrum may interact differently. Personally, I had one doctor claim I was not listening because I did not make eye contact with him. In addition, some doctors do not understand the sensory issues associated with autism.
Furthermore, people on the spectrum often have co-existing medical conditions such as diabetes, epilepsy, gastrointestinal problems, and anxiety. In that case, they may have a whole team of specialists involved in their care. In addition to communication and sensory challenges associated with autism, the person may have to get used to each new doctor or travel to other cities for care, which can be overwhelming for the person on the spectrum as well as their support person.
Some states like Ohio, have autism health care clinics geared towards people on the spectrum, but many states have limited options. In my home state of Tennessee, there used to be centers that provided services like health care, support groups, counseling and behavior therapy all in one building, but these have been closed due to lack of state funding. Other centers closed due to lack of providers. The closure of centers offering comprehensive services leaves many adults without support.
Health insurance can also be an issue. Health insurance providers may not cover speech, occupational therapy, or other supports for adults on the spectrum. Navigating these issues can be very complex for the whole family. Some families have found the Affordable Care Act to be a gift. The Affordable Care Act allows children to stay on their parents’ health insurance until they reach age 26, unless the child is able to get their own insurance. But when the person turns 26, the question of health care must be addressed.
What About Employment?
For a person on the spectrum, getting a job is easier said than done. According to a report from the A.J. Drexel Autism Institute, 66% of adults on the spectrum were unemployed or would not be attending a college or a vocational program after high school graduation. About 33% of adults on the spectrum continue to be unemployed in their twenties. These statistics are troubling because with such low employment rates, the chance of an autistic adult getting a job with benefits is unlikely. Also, it means an unemployed person on the spectrum could be without health insurance after age 26.
What Can We Do?
First, I would like more states and politicians to realize how serious health care issues are in the autistic community. It seems like they want to dismiss the issues we face. I personally emailed one of my state’s senators about this issue. The senator replied back that they were “working on other issues,” but once the other issues were straightened out, they “would look into it.” These issues concerning autism were never brought up in the state legislation. With states like Tennessee closing autism centers, many are left without resources. With closures and the email I personally received, I feel like states do not care. I would like states to reform their state health plans, fund autism centers, and for the system to be more autism-friendly.
I would also like more doctors to show a better understanding of autism and available resources. Doctors need to take time to listen to the needs of their patients on the spectrum.
Insurance plans need to consider autism a lifelong condition that does not go away in adulthood. They should offer better health care services and support those on the spectrum. Insurance providers need to realize the challenges autistic adults face throughout their lives.
Adults on the spectrum face many challenges concerning health care as they age. These challenges should not be happening not in the 21st century. It is going to take a lot of work and reform to solve these challenges. The challenges adults on the spectrum face show why we still need autism advocacy. It is going to take advocacy to show how important these issues are concerning adults on the spectrum.
Campbell Teague is an adult with autism who was diagnosed when he was 23. However, it was speculated he was autistic when he was four years old. He earned his associate’s degree in natural science, a bachelor’s degree in biology (health science), and completed his master’s degree in 2013. He is interested in meteorology and runs a weather-related Facebook page. He also is a disability advocate and blogs about autism, often integrating his Christian faith into his advocacy.
Read more articles on “How Self-Advocates are Changing Health Care” in Zoom Autism Magazine, Issue 17:
Feeling Comfortable and Understood by My Medical Community by Chloe Rothschild
Includes Chloe’s Tips for Self-Advocacy in Health Care
- Why I Became Passionate About Autistic Advocacy in Health Care by Lydia Wayman
A Letter from our Guest Editor
- A Physician/Mom’s Tips on Making the Most of Your Office Visit by Ann Oldendorf, MD
- Health Care Self-Care on the Spectrum by Delaine Swearman
- Cummings and Goings: Hope and a Fighting Determination! by Conner Cummings
- Showing My Body the Grace It Deserves by Gretchen McIntire
- THE VIEW FROM HERE: A Glimmer of Hope for Those Who Struggle by Daniel Derrico
- How We Manage the Fear and Anxiety of Doctor Visits by Megan Amodeo
Discover more Zoom Issues:
- Issue 13: Family
- Issue 14: Trailblazers
- Issue 15: Powerful Women
- Issue 16: Traveling the Spectrum Way!
- Archived issues on the Zoom Home Page