My Autistic Body:

I know we tend to think about Autism, and neuro-diversity in general, like it exists mainly in our minds: that we think differently and process information differently. I’m writing this post to shed some light on how neuro-diversity impacts the body - and therefore our relationships to our bodies and our experience of our bodies. Neuro-diversity can often be boiled down to increased sensitivity - which can be loosely defined as an overactive nervous system. Which means that the core of neuro-diversity may not be in our minds at all, but threaded throughout our whole selves. This means that when the neuro-diverse body is put under stress (which it often is, as this is the effect of an unaccommodating world), chronic and intensely uncomfortable symptoms can form. 

The other day a friend of mine asked how I was doing. I gave her an honest answer: I told her I was having a good day, that I was feeling good. For me this is a rarity, my body is almost always uncomfortable either because of internal issues, or external stimuli. I often forget that most people are actually comfortable most of the time. In response to my answer my friend asked “Oh? Is that not a given?”. Only in that moment did it hit me how easy it can be to take health for granted - and how easy it is to assume that your struggles are the same as everyone else's, even when they clearly are not.

Sleep

When I was a teenager I worked in a restaurant kitchen washing dishes. It wasn’t a particularly nice job, and the environment was overstimulating. Every day I was in for a shift the cook would ask me how I was doing. And every day I would answer honestly and tell him I was tired. (It hadn't occurred to me yet that people rarely want honest answers to these kinds of questions, that we ask them mainly out of politeness rather than genuine care.) Eventually he asked me why I was always tired and I froze. I had no idea what to say.

Up until that moment I had assumed everyone was as tired as I was. That it was normal to spend up to an hour a night waiting to fall asleep. That waking up multiple times before morning was common. I had a hard time imagining that people had energy to spare - surely we’d be much more efficient if that were true. Now, a decade later, my insomnia is much improved (with a weighted blanket, my own apartment, and a very specific bedroom set up), and my energy is beginning to lift (with a four day work week, careful personal boundaries, and a lot (like so much) self-care). But fatigue will always be a struggle for me. I can wake in the morning feeling well-rested and want to go back to bed again three or four hours into the day. I can sleep 12 hours a night and still wonder why I’m not rested. I can, and have, built a strict and healthy sleep routine and still don’t want to get out of bed more days than not. Napping has been either impossible (my body does not rest well at night let alone in the morning) or not worth it (I often wake with a grogginess and discomfort that reminds me of the worst flu and lasts the rest of the day). 

Most people on the spectrum don’t get good sleep. As demonstrated above, there’s a lot that can be done to help this. There are many professionals you can speak to - including doctors, sleep scientists, even loved ones (a significant other that shares your sleep space might have unique information and support to offer). But I think what we all want the most is recognition that sleep and energy just don’t come easy to everyone. Research shows the more acceptance we have about this the better our relationship with sleep is. So other people’s acceptance can only help - whether that means allowing alternative or unconventional sleep methods, being open minded to changing plans when energy runs out of supply, or giving space for the honest experience of being tired without judgment. This can be harder to do then we realize, we attach a lot of value to our energy and a lot of shame to lacking it.

Muscle Tension

I am almost 28 now. For as long as I can remember I’ve struggled with headaches. By the time I began my masters program at 23 I would have headaches everyday, often severe enough to put me in bed halfway through the day with the lights off and blinds closed. The pain was over-stimulating and overwhelming, but worse than that was the loss of agency and productivity. Anyone who’s experienced chronic pain knows how despairing it is to go without a satisfying explanation for that pain. These were not migraines, or cluster headaches - though I spent some time believing those were the culprits. There is something rather disheartening about hearing from your doctor that this is just a normal headache.

I’ve also always struggled with back tension and discomfort. I was a dancer growing up and - as many of us do - had developed scoliosis. I slept on my stomach for most of my life (it is still my favorite kind of stim - pressure on your core front activates the vagus nerve which calms anxiety, settles your stomach, and helps me relax) which caused semi-permanent damage to my neck. When ovid happened I couldn’t continue seeing my chiropractor so I forced myself to sleep on my back and side instead. It wasn’t until a year ago that I started working with a new chiropractor that also uses musculature treatment and acupuncture. I do exercises to strengthen specific muscle groups everyday. I have been getting regular treatment for a year and though my headaches have much improved - they are not yet cured. It is becoming increasingly clear that this is something I will always have to navigate or work on. I have hope - and a lot of relief - but resignation, too.

It turns out muscle weakness and tension are very common in neuro-diverse people. Whole muscle groups are underdeveloped leading to wonky postures, making us quick-to-tire when standing or sitting straight, and other musculature issues. And a more sensitive nervous-system means a lower threshold for stress symptoms - including tension. So discomfort or pain is common. These kinds of pervasive issues can be easy to ignore and accumulate over time. And treatment is often expensive and requires a lot of commitment. People on the spectrum can struggle to find employment, motivation, or energy required. Trusted professionals are also hard to come by. Help is out there, but finding it takes time and effort. Being proactive about our health is never easy, but it is always worth it.

Stomach

My family went gluten-free when I was fourteen. I noticed pretty quickly on the new diet that I had fewer stomach issues - issues that had been bothering me regularly already for years. I remained gluten free far longer than any of my siblings or either of my parents - all the way until only a couple months ago. Whenever I ate bread I would immediately experience nausea and abdominal discomfort (and other symptoms I won’t go into detail about), so I believed I must have an intolerance. 

The thing is though - I experienced all those symptoms anyway - whenever I was stressed or anxious, ate something with too much sugar, something I believed might have gone bad, or was beginning to go bad. Even if I was simply eating something new that I was unsure about. As time went on these symptoms worsened. Until I contracted a stomach flu just over a year ago which caused abdominal pain so severe I went to the ER and rated it a 10: literally the worst pain I’ve ever experienced. Since then I have experienced what IBSers call flare-ups regularly for months. Nausea and discomfort was so bad that I would stop eating or sleeping for days. I began to associate so much anxiety and stress to an upset stomach that even the suggestion of illness could set one off. And that was the problem: stress caused my symptoms, and my symptoms caused stress. I had unknowingly caught myself in a cycle with no obvious escape.

A few months back I started working with a dietician - she helped me immensely in taking an objective look at the relationship between my stomach symptoms and my stress levels. She suggested I take a 6 week hypno-therapy program to access and heal the part of my nervous system (the vagus nerve for those who know of it) that helps the mind and stomach communicate. I cannot emphasize this enough: it worked miracles. Now I eat whatever I want with much less worry. My stomach symptoms - when I’m stressed or ill - are a fraction of the severity they were before. I began feeling good about how my body felt and what I ate for the first time in years. 

(The app is called Nerva. You can get a prescription for it from your doctor. They will quiz you ahead of time to see how likely you are to benefit from the program. And if you go through with it and it doesn’t help you get your money back. Google for more information.)

But what happened to get me into this situation in the first place? How did my symptoms get so bad? In the face of embracing my authentic Autistic self, I started to investigate other Autistic’s relationships with food. As you probably already know, eating is one of the most fraught problem areas for people on the spectrum. But why are we so picky? My theory is that it’s not really pickiness, or preference. It’s that the way we feel about food, before, during, and after eating it, drastically impacts how our body receives it. If there is any negative emotion or stress associated, even momentarily, it can ruin a meal. And the more we force ourselves to eat, the more terrible we feel. Behaving like I had a gluten intolerance provided me with a psychological loop-hole: I could feel good about my food being good for me and by-pass (temporarily) the issues I described above. Eating gluten-free, in other words, allowed me to have a positive but superficial relationship with food. Now I’m working on finding a good and authentic relationship with food, and I know this will take time, experimentation, and many mistakes made. For people on the spectrum good eating needs good mental health, positive association with the food itself, confidence in the flavor and presentation and texture of the ingredients, and freedom to change our mind or eat instinctually. Familiarity and routine can help a lot, along with flexibility and open-mindedness, and the ability to tolerate the fear of everything going wrong.

Illnesses

I’ve mentioned before that people on the spectrum often experience flu and cold-like symptoms when they aren’t even sick. These issues can come up when we’re overwhelmed or stressed or just over-tired. This can really disrupt your relationship and response to illness. You learn, unintentionally, to dismiss or devalue your own experience of illness. You notice that you feel ill too often and too easily, and can't get away with asking to stay home from school or work. So we get used to working when we don’t feel well. It can be surprisingly difficult to tell the difference between a genuine illness and simply a bad day - even now I often push through the first day or two of sickness just in case it passes on its own. I struggle to cancel my sessions with client’s just in case I end up feeling better by lunch time. This kind of dismissing of needs and self-care is a common theme in autistic health care (mental and physical).

Additionally, many people on the spectrum don’t experience genuine illnesses the same as neuro-typicals. 

• Because many Autistics have chronic conditions, a cold or flu (and now Covid) layering on top of that can only worsen the situation. 

• Being used to pushing through, we often discount our own need for rest and care when we’re ill, and end up making ourselves sicker. 

• Many Autistics have mental health concerns like BPD, anxiety, depression, etc. that can be activated by feeling sick - giving us time to reflect on the things that bring us down when we lack the energy to self-regulate or triggering fears about illness itself. 

• Illness is extremely over-stimulating - it often feels like my body is turning against me and totally out of my control. This can trigger melt-downs, shutdowns, anxiety attacks and other kinds of mental health breakdowns. 

• Being sick forces us to break routine, change our plans, and can disrupt our ability to mask or communicate. (More info on illness and autism here.) 

All of this means that being sick can include having to navigate a whole host of other issues, and requires a whole new list of considerations for those of us on the spectrum.

Hormones

Heightened sensitivity can mean heightened emotions, difficulty regulating, and more intense awareness of your own body. All these mean that I’ve been tracking and investigating hormone symptoms since highschool. Is this a mood swing? Or am I emotional because I’m tired/stressed? Is it a coincidence that my headaches are worse when I’m on my period? Is it normal to experience PMS days before I start bleeding? Is it normal to have breakouts twice a month and have them last weeks? These questions have haunted me. When I was told by teachers and other women what I could expect from my hormone cycles, it always fell short of explaining my own experience. My symptoms seemed to be more intense and more frequent than anyone else’s. Nothing made sense and no one could seem to explain it. I got panels of bloodwork done, tracked my symptoms like my life depended on it, and researched until I ran out of questions to ask.

And then I discovered PMDD - meet PMS on steroids. Premenstrual Dysphoric Disorder symptoms are similar to those of PMS, except that they have a wider range of intensity and can occur at any time in your cycle. And the kicker? 90% of women on the Autism spectrum meet the criteria for PMDD. This is, as far as I can tell, a pretty new diagnosis. Few people, including my doctor, knew what it was before I brought it up. I’m still learning what helps the most to manage these symptoms, but a good diet and exercise routine is a good place to start. And, of course, there’s always birth control. We are still learning more about the Autistic body and bodies of people with cervixes - these populations have been purposefully left out of the sample pools in healthcare research. But new information is coming all the time. And the more we advocate for ourselves, the more we ask these questions and demand satisfying answers, the better will become available. It’s not meant to be our responsibility to shape the health-care system, but we do deserve better, and that’s worth working towards.

Conclusion

For a long time I believed I had a gluten intolerance. I believed I had a weak immune system. I believed I had a sleep disorder. I believed I had a severe hormone imbalance. I believed that there was something very-wrong with my mind that caused such terrible headaches. I thought there must be something wrong with me for always feeling like I was forcing myself to participate in life while everyone else could do so with such ease. For always feeling off, or uncomfortable, or ill. It turns out none of these things were true - I’m just Autistic. I doubt I’m the only one searching for answers or trying  not to fall back into that old pattern of simply ignoring how I feel.

Please, please, please, get a doctor and talk to them. Contact specialists (not all of them need referrals!). Get the care you deserve. A lesson I’m still learning myself is: just because your body is different, your needs are different, does not make them less valid or less important. It is not an inconvenience to people to treat you. It is their job. And try to protect your autonomy - you get last say about everything. Just like good self-care, good health care is never-ending work. So establishing a routine (with breaks!) for taking care of your physical self can only help you. It’s not going to be fun or easy, and I’m sorry about that. But at the end of that day, the only person that can take care of you, is you.