Thoughts for Care Providers
From one Neurodivergent human: We are not crazy. Please listen as though we might know what we are talking about. Attention to detail is a good thing.
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In talking with other neurodivergent individuals, especially those of the female sex, I’ve found that my experience with doctors and therapists is far from uncommon, and it makes me so sad. For the most part, I have been told that I need anxiety and depression medication when I have asked for help with digestive problems, joint pain and grinding, back pain, headaches, and more.
Something about the way I express myself evidently seems intense. I have tried everything I know how to do in order to appear thoughtful, calm, and reasonable. Evidently I can’t pull that off well enough for the care providers I have interacted with. The more ailments I have, the more information I come prepared with, and especially the more questions I ask, the more I am labeled with ptsd and referred to a psychiatrist for medication.
Since discovering my neurodiversity, I’ve been able to tell care providers that I’m autistic, ADHD, dyslexic, and dyscalculiac. This has helped care providers be more patient with me and not instantly jump to the conclusion that I’m having a ptsd episode, but it has not led to the kind of care I need. For example, you can’t just tell me to eat a low-fat diet and exercise. You have to tell me what I should and should not eat and what kinds of exercise, for how long, and how many days a week. The lack of specificity sends me off to do research on my own and can lead to hyperfocus on any or all of the things I find, pulling me down a rabbit hole of fear and frustration. That will generally end with me either not eating at all because I can’t figure it out, or me giving up and eating even more of the things I shouldn’t.
When I had a hysterectomy, the doctor said I should be walking around every hour and not lift things over 10 pounds. I didn’t know what that meant. The lack of specificity meant I took months longer to heal. I didn’t know what things in my house weighed, like the laundry, and I didn’t know how much to walk. So I did too much. Evidently neurotypical people would have been able to figure out what my doctor meant. That makes me feel stupid, but I’m not sure it’s true that others would have just known. I think they have heard stories from other people and have been able to surmise an appropriate response to doctors’ recommendations.
Next time someone tells me to walk every hour, I’ll ask for specifics, but I’m pretty sure the response I’ll get will require me to ask even more questions. This is a very fast way to a shutdown episode for me. It is really hard for me to follow up if I think I don’t understand or am not being understood. Instead, I tend to become more and more non-verbal. I may just stare at the provider, causing them to feel they can move on.
If I’m in pain, the shutdown is even more likely. “Rate your pain from 1-10” is a terrible question for me. I don’t know what that means, and when I ask, they say from no pain to the worst pain. I don’t process pain that way. I’m always in pain. I don’t know what no pain feels like. And pain comes in different forms for me. I don’t feel it all in the same way. How can I explain those differences? And now they’ve sent me off trying to chase an answer in my brain which will make me less able to process the rest of the visit. I’ll get lightheaded, sometimes extremely so, and I will not be able to remember what I’m supposed to say. Even if I write it down, if I get overwhelmed, my dyslexia will get much worse, and I may not be able to read what I wrote.
All of this is so exhausting and disheartening that I don’t want to seek care to begin with. Just the thought of having to tell someone that they have to watch my pain level for me because pain causes shutdown responses in me, is enough to make me want to stay in bed and not go. It is my firmly held belief that care providers need much more training in how to understand and care for neurodivergent individuals of all ages. Many of us are loaded with trauma due to a general lack of understanding from family and peers. So, to enter a care situation and find the same lack can cause a whole new set of traumas that will lead to withdrawal from self-care.
Many of us will do so much better if we are allowed to have an advocate come with us to appointments. Someone who knows our signals for distress and can be in charge of communicating things we may forget, or are too overwhelmed to express ourselves, can be invaluable. Covid restrictions and other rules can make it harder for neurodivergent people to get the care they need. Our chosen advocates may be barred from the exam room.
Care providers, please start talking to your neurodivergent patients. Find out what their distress signals look like. Ask them if they would like more detail to be given with all of their care. Ask if they have someone they trust that could be a healthcare advocate. Be aware that many adults are not diagnosed, and look for neurodiversity before deciding on anxiety, depression , or personality disorders. If someone asks for an autism test referral, please give it to them. And above all, please treat us with respect as intelligent, capable, people who may need some accommodation in stressful situations.