Why I'm Passionate About Autistic Advocacy in Health Care

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A Letter from Our Guest Editor

By Lydia Wayman

Like many aspects of daily life, illness is especially challenging for autistic people. We often have trouble understanding what we are feeling and communicating it to others. We struggle with changes in our daily routines. Being poked and prodded at appointments, swallowing disgusting medications, and treatments involving needles, bright lights, and sticky tape on the skin can be a sensory nightmare.

When we go to the doctor in the midst of these challenges, we expect to get compassionate care.

Unfortunately, the healthcare system is not always set up to provide it. Too often, we find doctors who have only attended a single lecture about autism. We find hospitals with nobody on staff to support us during inpatient stays and procedures. With almost 600 beds in my hospital, one would expect to find several autistic inpatients at any time — and yet, with each admission, it’s as if they have never had a patient like me before.

As a young adult with autism and a very complex set of medical conditions, I have been sorely failed by this broken healthcare system.

While I did have multiple health problems as a child, my healthcare journey really began as a young adult in 2012. Since then, I have had many hospital stays, surgeries, and lots of extra “hardware” added to my body. My neurological issues make my body unable to regulate its basic functions, such as digestion, heart rate and blood flow, and temperature. I also have frequent migraines affect my muscle control, memory, and language. The most baffling and painful issue is the extreme skin flushing and swelling that is triggered by light, temperatures over 60 degrees, and even sitting upright. Add in my sensory defensiveness, need for routine, and communication challenges, and I am a complicated patient.

When my downward spiral began, I received services through the Adult Autism Medicaid Waiver in my state. But within the first year of my illness, there were many days that I couldn’t participate in community outings and other skill-building activities, and so I ultimately had to give up my services. This meant I couldn’t live semi-independently anymore. I applied for a waiver for physical disability, but I didn’t qualify because my primary diagnosis was already listed as autism.

That’s how I fell into a crack that should not exist.

Falling in between categories for waiver services also left me with no real options for housing, so I spent 15 months in the only place I qualified for — a nursing home for the elderly.

Medicaid waivers exist so that people with disabilities can make choices about where they want to live. If Medicaid finds that an individual needs the level of care of an institution (a residential facility that provides total care, including room and board), the waiver program gives that person the option to use that Medicaid funding for services that let them live in the community.

In theory, a person who is eligible for institutional care, such as a group home for autism or a nursing home for physical disabilities, is also eligible for a waiver. But what happens when you have both needs? The way the criteria were written, my needs cancelled each other out, as both programs directed me to the other. I was disqualified from both waivers, so my only option was the institution.

In the midst of it all, I was dealing with a primary care doctor who believed I was too happy to be sick.

She concluded that I was creating my symptoms to get attention, but I didn’t realize I was giving her that impression. People always told me to stay positive, and I simply took that at face value. She called my GI doctor about her suspicions — the only time in five years that two of my doctors have ever made contact — and he agreed that I was obsessed with being sick because I “knew too much” medical information. For me, knowledge was a way to cope with the fear and uncertainty my doctors didn’t believe I was feeling. Their notes in my chart have followed me, even into a different healthcare system. So has my fear of new doctors.

Thankfully, things have gotten considerably better. A social worker guided me through my fourth attempt at the Waiver application and followed up with the state to ensure the paperwork reflected my true needs. Since 2016, I have had an aide during the day and a nurse at night. I have amazing, trusted doctors who understand me — my medical history, my anxiety from past experiences, and how to accommodate my needs. I believe most healthcare professionals genuinely want to help people, but they aren’t given the time, training, or resources they need to do it effectively.

The healthcare system shouldn’t make illness even harder for autistic people to manage.

I hope this issue of Zoom will get the autism community talking with our healthcare providers about some of these people issues — let them know where our needs are so that these gaps in the system can be identified and ultimately fixed. Let them know that there is a whole community of autistic advocates waiting to help with initiatives and professional trainings. In the meantime, I hope that some of the strategies suggested by our feature writers will empower individuals to make the system work a little bit better for them.

Lydia Wayman is an autistic writer, speaker, and advocate from Pittsburgh, Pennsylvania. She has a B.S. in elementary education and an M.A. in English and nonfiction writing. Lydia is a devoted cat mom, Disney fan, and proud aunt to the best niece and nephew in the world. She believes that people are awesome, not despite their differences, but precisely because of them.