The Double-Edged Sword of Autism and Staying Healthy
My three-month journey
There's a scene at the beginning of Tennesee Williams's adapted screenplay, Cat On a Hot Tin Roof, written by Richard Brooks and James Poe, where Paul Newman's character, Brick, tries to relive his glory days as a track star while in middle age. He crashes and burns as he tries to leap over the hurdles with an imaginary crowd cheering for him in his head. For the rest of the movie, he's on crutches and can barely walk.
Meet your author, Brick, otherwise known as Nick.
I certainly have felt like Brick for the past few months.
Months ago, I wrote about my A1C, a blood test measuring one's average glucose for three months. At the time, it was 10.2. Anything over ten is considered potentially catastrophic. Now, it is 6.0, which is close to normal.
Going down 4.2 points in 3 months was a lesson in humility. Without exercising seriously for a long time, I forced myself to return to the tennis court without training. I played an hour and a half the first time out there and strained my upper hamstring. No matter. I let it heal for three weeks and went back out again. Forget that tennis is a very social sport, and small talk is not my strong suit. Forget that I loathe tennis clubs with all their cliquishness and status-seeking members. Forget that I am highly competitive; when I lose, I can become dysregulated. It didn't matter that I wasn't the number one singles player for a Division II university like I used to be over twenty-five years ago. I was on a mission not to go blind, need dialysis, or lose limbs.
Of course, exercise is only half the battle. Eating is the other half, and you're seriously behind the eight ball when you don't cook like me. So, I used my autistic "rigidity" as a force for good. I cut out all sugar. Every food I ate was scrutinized for how many carbs (simple or complex) it had, which changed my entire diet. I no longer ate pasta, which is and always will be my favorite food. Protein became my new best friend, even though I much prefer foods with carbs. I rarely eat bread; when I do, I always eat whole grains. I now eat sugarless candy, which does not get along with my stomach.
Then, there were the bureaucratic hoops my insurance company had put me through on my journey to health. Apparently, test strips and lancets are not a medical necessity (?) and are not covered. A continuous glucose monitor is not something anyone needs (especially with a 10.2 A1C, right?) unless they take insulin, so it wasn't covered either. One is lucky to get SGLT2 inhibitors covered (think of that overplayed Jardiance commercial) because there is no generic equivalent. Without a patient advocate or case manager, it's difficult to imagine other autistic people successfully navigating the healthcare system. It's certainly been quite challenging for yours truly.
And yet, as the old Sondheim song goes…" I'm Still Here."
Autism as a double-edged sword
Part of what I've discovered in my three-month journey to health is that the same autistic qualities that can make it challenging to stay healthy can be inverted and used for good, like homeopathic medicine. Just as one can accomplish things in a "manic" phase that they cannot do in a "depressive" episode of Bipolar Disorder, so too autistic people can attempt to use cycles to their advantage. Being in a manic phase is not always peaches and cream, of course— it can lead to severe challenges with impulse control and risky behavior. On the other hand, manic phases have indeed been associated with creativity.
In the same way that autistic burnout can resemble a depressive phase and hyper-focusing or perseveration can look like a manic phase at a surface level, autistic people can channel their periods of hyper-focusing to achieve goals.
But… there's a catch. There's always a catch.
Hyper-focusing can lead to autistic burnout, which can spiral out of control and back into a cycle of despair. In other words, the same autistic qualities I channeled to get me from 10.2 to 6.0 could easily blow up in my face if I allow a perfectionistic desire to consume me.
Which is why now is when the real challenge begins for me.
The easy part was getting down from 10.2 to 6.0. The much, much harder part will be staying here. Why? My black-and-white mind cannot tolerate a lack of perfection. As soon as I capitulate for a slice of white bread or some starchy food, I've already lost the battle. I start saying to myself…
" Well, there you go. You just blew it. It doesn't matter now. You'll have a high A1C the next time you go in, so why not just splurge? You get what you deserve, and you will probably go blind anyway. So why deprive yourself? Eat that piece of chocolate cake."
Eating "perfectly" for the last three months was unsustainable, even if I was channeling certain autistic qualities for good. But so, too, is returning to eating every sugary object in sight. Neither lifestyle can endure.
As a person with diabetes, you're taught that it is ok to "cheat" every once in a while. Cheating essentially means eating a food you know you're not supposed to. Psychologically, one does this so they can withstand the drudgery of otherwise depriving them of the foods they love. But my autistic mind doesn't understand the concept of "cheating." If I have cheated, then I've admitted defeat. I've let my body know that I'm ok with going blind or losing limbs by sending that sugar to battle my pancreas. And there's a lot of logic to this: Sugar is poison to a person with diabetes.
However, what's logical isn't always what is human. Human beings need sustainable strategies to carry out long-term goals. Without herculean discipline, it's next to impossible to be a perfect diabetic patient, just as it is unlikely one will never trip while walking.
Paradoxically, as an autistic individual, my task will be learning it's ok to occasionally "cheat" and still not fall off the wagon. It will be not to let perfect be the enemy of the good.
