Are You Autistic and Struggle With Maintaining Your Physical Health?
You are not alone.
“So, Nick, your numbers are not trending in the right direction at all. In fact, they are dangerously high. Does this surprise you?”
No, it didn’t.
Very few people with diabetes (if any) want to hear those words at a doctor’s appointment, least of all someone on the spectrum.
My story
If you are on the spectrum and are like me, you probably have many strengths you would attribute to your autism. Yet your spiky skill profile(uneven skill development/ peaks and troughs) probably creates some support needs you’d instead do without if you could.
Sometimes, the aspect of autism that confounds people more than anything is our tendency to have a spiky set of skills. Let’s take myself as an example. I have written five published books, spoken at governmental conferences, served on boards and task forces, and engaged in various other professional endeavors. I drive a car. Being autistic and rule-bound helps me be punctual, pay bills promptly (even with poor executive functioning), etc. It would be fair to say that being autistic has honed some of the skills necessary to participate in professional undertakings and whatever personal strengths I possess — but simply taking care of my health? That is not a strong suit of mine.
For over twenty years, I have been diagnosed as a person with type II diabetes (notice I used first-person language here, unlike what I use with autism: I don’t consider diabetes as part of my core identity). And for over twenty years, I have mightily struggled with managing it. Unfortunately, the quiet part that no one wants to say out loud is that my autism hasn’t helped matters at all in this regard.
When I was diagnosed with diabetes twenty years ago, I weighed 230 pounds. Without deploying a viable and sustainable game plan to tackle this problematic issue, I miraculously managed to get it down to 150 pounds — a total of 80 pounds shed. But I did it using a “system” that somehow let me lose weight while simultaneously eating very poorly. My very cleverly thought out (not) system was to eat a big meal around lunchtime and have that be the main meal for the day. I noticed if I ate a second meal, I would gain weight almost without fail. So, instead of having dinner, I substituted the second half of the day with stuff that would satisfy my sweet tooth. Somehow, my logic was that if I could keep my weight down and dutifully take the medications I was prescribed, this would mitigate or offset my blood sugar issues.
For a while, this worked reasonably well. And the times when my A1C would be high, I would temporarily modify my sugar intake for a few months only to reverse course — but I never completely stopped eating foods with added sugar. Lately, however, my numbers are so high that I see this isn’t sustainable. I already have the beginning of diabetic retinopathy in its very early stages, which can be prevented from progressing if kept in check.
What are my main obstacles, and how does this all relate to autism? The main one, if I am being honest, is cooking. Cooking may be extremely pleasurable and easy for some people on the autism spectrum, but for me, it’s not. It involves multiple steps and fine motor coordination like chopping and slicing vegetables or meats, measuring (which I never can get right), and heat from the oven or stove (I fear burning myself). So, getting a diet tailored to diabetes without cooking specifically is somewhat challenging. Every dietician I have ever been to seems to have difficulty understanding how this makes attaining said goal more difficult for me.
A while ago, I had enough money to buy takeout virtually daily. Now, I am on a Trader Joe’s diet. The problem is that Trader Joe’s frozen food is heavily processed, and if one has diabetes, one is supposed to eat whole foods. While I got by during the pandemic with prepared meals mailed to my doorstep, it eventually became cost-prohibitive. Quality food is the bedrock of a good and healthy life for a person with diabetes.
My other obstacle is that when I am in autistic burnout, I do not have the energy to exercise. Of course, exercise can help one after the peak of burnout (if it, in fact, does abate), but doing so while one is actually burnt out is just plain hard.
The takeaway
Writing all of this hasn’t been pleasant or fun. However, I want the autistic community to know that they are not alone if they struggle with maintaining their physical health. It is no wonder that many of us tragically have a much lower life expectancy than many non-autistic individuals — somewhere between a few years to several decades, depending on the studies you cite. We have more chronic health conditions, and specific activities (like brushing our teeth) or getting adequate sleep can be super challenging.
Even though some of these obstacles may always be present, I will try to change this aspect of my life. I will eat the number of meals per day I should. I will cut out sweets with added sugar, like candy, ice cream, and pastries. I won’t be perfect in my quest, but I believe I can fundamentally change a twenty-year pattern. As a matter of fact, as I write this article, I am experiencing a migraine from sugar withdrawal.
So, if you are on the same road as I am, my autistic neurokin, good luck! We are both in it together.
