This post brought to you by last week’s news of the possible closure of a local health clinic, one that focuses on serving patients with intellectual and developmental disabilities. Also by the recovery of a blood patch procedure that I never want to experience again.
One of the things that doesn’t seem to be talked about enough is the intersection of autism and access to medical care.
Or more specifically, the lack of it.
We know autistic people are more prone to have certain medical conditions – epilepsy, genetic disorders, gastrointestinal issues. This isn’t new research by any means; it’s become common knowledge at this point.
But if that’s the case, why is healthcare so inaccessible for many of us?
As people get older, they generally age out of pediatrics and children’s hospitals. Most people see this as a general change – a simple rite of passage from colorful clinic walls to a more neutral beige. It’s graduating from those post-vaccine stickers or lollipops, and instead leaving with a bandage and a bill.
But for many of us with developmental disabilities, it’s a lot more than that.
It’s not just about adjusting to change; it’s losing access to familiarity and relationships with our doctors.
It’s transitioning to medical professionals who are unfamiliar with intellectual and developmental disabilities.
It’s having medical care suddenly fractured into different specialists, where it feels like no one talks to each other.
After age 18, it’s sometimes as if autism no longer exists in the medical field. When we are seen as perpetual children, people inadvertently see our healthcare needs as the same – and both staff training and research falls behind too.
As we age, the metaphorical ball gets dropped; screenings and procedures are sidelined because it’s not accessible. Lifesaving screenings such as pap smears and colonoscopies become impossible.
Even things like a six month dentist cleaning can be a struggle for some – and dental health is a lot more important than we realize.
A large majority of traditional hospitals and clinics aren’t equipped to provide us with comprehensive and fully competent care.
Even the hospital environment itself feels combative to our nervous systems, not healing. We shield our eyes from sharp fluorescent lights, cover our ears from the overlapping voices in the busy waiting rooms, and try so hard to understand what’s happening around us. It all very quickly becomes overwhelming and a sensory nightmare.
Information given to us is also not always cognitively accessible – and communication can become difficult, especially if we’re in a high stress situation or unwell. Add invasive tests and procedures, and it’s genuinely a nightmare.
Being hospitalized is its own form of torture, especially if you have no advocate – or if it’s for psychiatric treatment.
As someone with several chronic health conditions and disabilities, I’m not a stranger to navigating the medical system. It’s a struggle.
I went years without medical issues being properly addressed, partially because doctors often blamed the autism or anxiety. Because of this, conditions like eosinophilic asthma and a cerebrospinal fluid leak went untreated for years.
Likewise, things I thought were normal continued to slide under the radar.
How was I supposed to know that other people don’t have pain in their feet (neuropathy) or that not everyone has a constant stomachache (gastroparesis)?
How would I know that headaches weren’t a daily issue for everyone? It was my baseline. It’s hard to seek out help when you don’t realize something is wrong.
I didn’t even have the words to explain that my wrist hurt, because I didn’t know what a partial dislocation was. Instead, I would tell my physical therapist that it “felt angry at me.” That was the best way I was able to describe the pain.
It’s sometimes really difficult to put my pain or symptoms into words, even with my AAC device. Even before my brain injuries, understanding and explaining my body’s internal signals was not a strength of mine. Interoception is a difficult skill.
All things considered, I’ve been one of the lucky ones. Surgeries and procedures are still a major struggle for me, especially some of the more painful or traumatic ones.
Without my support staff, case advocates, and understanding medical teams, I would most likely not be alive.
Having medical providers who are understanding and compassionate makes a huge difference in our care, along with an environment that feels safe and supportive. That, in turn, impacts our overall health and wellbeing.
People with intellectual and developmental disabilities deserve access to quality healthcare, just like everyone else. Medical places need to feel like a healing environment, and that can be very difficult to find for us and our families.
Accessible clinics, trained staff, clear information, medical providers who are willing to be patient and creative – these are some of the things that our community desperately needs.
We need more of these things, not less.
Just Keep Stimming 