Content warning: health, death and its causes, including self-inflicted
About six weeks ago the third episode of The Autistic Rant Hour, my podcast miniseries, was released by the Autistic Culture Podcast Network. I called it “We’ve run all the tests and there’s nothing wrong with you”, and it was about Medical Gaslighting, from both the personal and systemic perspectives, as experienced and understood by myself and my wonderful episode guest Simo_tier (pronouns: it, they).
This was by far the most resonant of the podcast’s episodes, and no wonder: Autistic adults die 6 to 15 years earlier than their peers (CW: gender-exclusive language in the cited research) and are at last 5 times more likely to die by suicide specifically because of lack of training among medical staff. One of the strongest barriers to medical care for autistic people is anxiety over prejudice by medical staff, reportedly 2-3 times more than for allistic people. And the medical gaslighting is effective: 72% of autistic participants in this research did not even know if their symptoms merited a visit to the doctor.
Commiserating with each other on air and calling for disability-solidarity was great, and I hope this episode could make some people feel less alone. Many of you responded to Simo_tier’s battle cry and shared your experiences. But what can we do to deal with these problems while we endeavor to snatch another year of autistic existence out of the jaws of death?
Juliane, a listener, replied to my Mastodon thread with the following helpful advice, and has given me permission to share it here too. Here it is, with some additions from yours truly:
- Honesty is for friends. Exaggerate and lie, if you have to. If you exaggerate greatly, they will maybe see 10% of your symptoms and their severity instead of 0.
On the podcast episode, we talk more about the trouble autistic folks might have conveying the severity of their condition. For example, what happens when medical professionals ask you the wrong question about your symptoms, don’t perceive your pain as bad enough and then send you home with a variety of very real and sometimes life-threatening conditions, and of course the notorious pain scale, which just doesn’t work for many neurodivergent and chronically ill folks, who are used to living with pain and who, sometimes from infancy, get gaslit by people they tell about it.
You may want to peruse the internet in search of a pain scale that feels right for you, many attempts have been made to create a better one. But as a general rule: If you want treatment in the ER and aren’t sure what the pain scale means: 7 is a good number.
- It doesn't matter that much what facts you tell medical professionals, because they draw 90% of their information from your tone of voice, how calm you are, your body language and how you're dressed. If you have the possibility to give them facts in writing, do so but keep it short, so they actually read it. A good option is to give them a summary of test results written by another clinician, accompanied by the actual test results, as well as past ones.
- Which brings us to: If you have an allistic person who is able to speak on your behalf, and even better if it’s a man or a medical professional, ask them to assist you. Because hearing the same facts and needs that you would have reported, from them instead, the health professional you are facing is much more likely to listen and accommodate you. Sad but true.
- Do your own medical research by reading medical papers and talking to your peers, but don't tell the doctor!
Medical professionals tend to feel threatened by a knowledgeable patient. They probably know that there are gaps in their knowledge, but they were trained to feel and act superior, so you highlighting this gap with all the information you gathered makes them feel insecure, defensive and therefore even more dismissive than usual. They might even flat out refuse to help you.
If you think a certain treatment might help you, the script you might want to try is: "My friend Hans had the same symptoms/diagnosis and xyz helped him so much! Can we try that?"
Another option is: "My doctor in Unreachable-City (fill the gap) recently told me about this paper about xyz and that it showed ABC. Do you want the link?"
You might also try appealing to the doctor's ego: Try to make it look like what you’re proposing is their idea. I asked Juliane if there was any example that came to mind, but there wasn’t, so I’d like to ask you, dear reader: how would you go about making it look like what you want is actually the medical professional’s idea?
- Disclosing autism is a difficult choice: You are running the risk of them treating you like a child if they know you’re autistic. On the other hand, they will probably be ableist even if you don't disclose it, and even if they are themself (unaware they are) neurodivergent.
If you prefer to avoid disclosure, you can tell them about your needs and traits without mentioning being autistic. For example, you can say you are very light sensitive and need the lights to be dimmed (migraine is a good excuse). Or you can say that you need to know in advance what they will do. You could also warn that your voice might be flat even when you're in pain and distress, or that you have, for example, walked around with undetected bone fractures in the past. Sometimes this actually works.
- If you suspect you have a "rare" disease, i.e. one that isn't in fact rare among autistic people, such as EDS or POTS, and you need a referral, you can make up an aunt that has exactly that. Nobody is going to check if your aunt really exists, and chances are, someone in your family actually does have something similar to whatever is ailing you, though they might not be diagnosed.
- Don't believe anything they tell you before you fact-check it.
In many cases, doctors act as medical gatekeepers for tests and treatments, especially if they do not stand to gain any income from your treatment, for example in public healthcare in welfare states. They might, for example, have a limited budget for running tests or providing treatment. At the same time, they may or may not be incompetent, uncaring or prejudiced against you. Try to find out from your community what is the exact wording you need to use so that they assign you the right tests, prescriptions and treatments.
- If they refuse to test, diagnose or treat you: Ask them to document their refusal and the reason for it in writing. This exposes them to malpractice claims in case it later turns out the diagnosis or care was necessary, which should give them pause and maybe make them reconsider.
I hope this list is helpful for you, either now or down the road, and I would love to hear what your life hacks are, when it comes to getting the healthcare you need. In your advice, please mention what country you are in, as advice can be very geography-dependent.
And as always, please help each other by adding medical facilities, or any other locations, to prepped.to, so other autistic folks can prep and script before going there. This is our battle cry, after all.
Dr. Gal Schkolnik (I’m not a medical doctor, the Dr. stands for Doctor of Natural Sciences)
Pronouns: They/Them
Aut2Aut founder and CEO
