There are many things that make being Autistic problematic for society. And because society still sees Autism as a disorder largely due to the pathology and organizations that continue to push words like "cure" and "violent Autism," the stigma gets passed on to all Autistics. Among the many things that is not understood about being Autistic, is that being Autistic is physical too.
We are Autistic because of our neurology. As we know, the brain is not the chest, nor is it a hand. The brain is not a stomach. The brain is not our legs or feet. However, the brain is not disassociated from the rest of our body. The brain works with the body. Being Autistic means that our brain works with our bodies uniquely. And because each Autistic is different, each Autistic person's body will also function just as uniquely.
One example is sensory processing. The sensory processing needs of Autistics means how they respond (or do not respond) to hunger, thirst, burnout, knowing when they have had enough food and drink and not knowing if they need any at all. All of that is about interoception. Proprioception refers to knowing where our bodies are and other things like spatial awareness and pressure. Some Autistics need more pressure to keep their proprioception regulated, while others might be more limited and/or not be able to tolerate any at all. Being Autistic involves hypersensitivity or hypo-sensitivity to tactile (touch), smell, sight, sound, temperature, environment and our skin. All of this is true, yet, one thing that is next to impossible is getting the medical community of doctors, nurses, physical therapists, neurologists, exercise instructors, etc., to understand that being Autistic is physical and therefore we have medical issues that need to be treated accordingly.
For example, an Autistic who is also a diabetic. To manage diabetes requires awareness of the body in ways that many Autistics might not be. Managing diabetes requires someone to be careful of what foods they eat. Managing diabetes includes being a pin cushion for needles for A1C glucose tests. Glucose meters where one has to prick their fingers with lancets to check their blood sugar levels. If insulin is needed, being able to measure how much insulin they may need (or do not need), and administering their insulin by using syringes. What if an Autistic with diabetes experiences excruciating pain from needles? How is an Autistic to deal with having to be injected with needles when they experience sensory nightmares coming true by using syringes? Maybe the Autistic might have food texture issues with fruits and vegetables, or meats, or various foods, not to mention chewable glucose tablets or liquid. Getting the Autistic to work with a certified diabetes educator who will know what the word interoception means is next to impossible. I am Autistic, ADHD, and a diabetic. I have worked with two diabetic educators over the last two years. I had to ask both of them if they know what interoception means. Both said no. I had to tell them what it means.
I have heard of Autistics seeing specialists for fibromyalgia, arthritis, or stroke. Or someone like myself who lives with chronic pain trying to explain to medical doctors and specialists what my experience with pain is like because of sensory processing; only to have doctors look at me as if I have no idea what I am talking about.
Being Autistic is physical and brings with it unique physical challenges. Many Autistics have physical and mental health disabilities. Yet, the medical insurance industry as well as medical doctors and so forth, are ignorant and negligent in how they approach the medical needs of our bodies. And don't even get me started on how unprepared medical professionals are with addressing the needs of Autistics in our elderly years.
I wish I had an answer to bring robust change to all of these issues. The only ones I can think of at this point is for us to become the best self-advocates we can be. There is no excuse for medical professionals not having the information they should have about Autistic and other Neurodivergent people. At the same time, there is no substitute to bring change than finding ways of telling our doctors about what being Autistic means for us.
Some suggestions are to write out on a document how your Autism affects your bodies. Ask them to read it. Bring someone who does know you with you to your doctor appointments to advocate for you. If the doctor won't read your documents, be sure to ask the person with you to help communicate with the doctor to read your concerns. Last October, Kelly Lenza was my guest to talk about Addressing Fat Phobia for Autistic Adults. Kelly said, that it is okay to leave the appointment. If a doctor will not listen or will not give you the respect they should, you can leave the appointment. It makes life and addressing your health care concerns more difficult. However, there is a reason why there is a list of medical providers in your are, and it is that you can search for the right medical provider as long as you need to. Ask someone you trust to help you in the search.
Many of you may have used methods for self-advocacy that have worked. Please feel free to share them in the comments.
The point is that we have some powers within ourselves. We may need some assistance to learn how to use them, or use them at all. But, we need to begin somewhere.
