Autism is a neurodevelopmental disorder and despite the condition being recognised for about a century it is still clouded in mystery. The exact cause is unknown and researchers are only beginning to understand what makes an autistic brain unique. I was diagnosed with autism at the age of 19, though it was strongly suspected for years before that. As an adult I have been an advocate for neurodiversity, this has included volunteering for the Human Libraries project, participating in diversity panels at conventions, and hosting a podcast called St.Elsewhere. I never believed in a cure and I didn’t see a need for one, we should accept people for their differences and limitations. Who would I even be without autism? I wouldn’t be the same person would I?
As I write this I have been on a strict carnivore diet for roughly eight months, and to say it has changed my life would be an understatement. For those new to my blog, I began this journey into nutrition when I got ME/CFS back in November 2017. I used to be very active and my diet was your basic bodybuilding diet, lots of protein and carbs, not a lot of fat, very bland. It was broccoli and rice and chicken every day. I have no idea how I lived like that. I was always eating and always hungry. When I got sick I quickly realised this way of eating was doing me no favours, surely there was a way to preserve muscle and burn fat despite not exercising. That’s when I discovered keto. It blew my mind, fat doesn’t make you fat? Carbs cause most chronic illnesses? It took me awhile to undo the brainwashing of mainstream dietary advice, but the results spoke for themselves. I ate less, I lost fat and I remained surprisingly strong for someone who spent 80% of their day in bed.
Despite my chronic illness, all seemed to be going well in terms of diet, until about a year later when I stopped being able to digest food almost entirely. Food would pass right through me, I was constantly dealing with cramps, bloating, reflux, and nausea. I felt like I was dying. I consulted my doctors and they didn’t seem that concerned, I’d already had every test under the sun and they all came out clear. They just prescribed me more and more medications to deal with the symptoms. Why could they not see something was seriously wrong? I’ve written about this aspect of my journey in more detail here. Long story short, I found the carnivore diet, and at first it seemed absolutely insane, once more I faced having my understanding of nutrition completely contradicted. We need plants, and we need fibre, right? But I wasn’t in any position to argue, at that point I was so debilitated I needed a wheelchair, I was in constant pain, I was barely conscious most days. I had nothing left to lose so I jumped right into carnivore. I immediately felt better, my digestion was the best it’s ever been and within a few weeks I was going out doing my own grocery shopping on my own two legs.
I have always suffered from mild IBS, I was told I simply had a sensitive stomach which is common with autism and that’s all there was to it. Once more, my doctors were completely wrong. I had heard for years that autistic people should avoid gluten, I had seen headlines proclaiming “I cured my child’s autism with diet”. I ignored it all, there is no cure and I don’t need one.
ME is considered a neuroimmune disorder, basically an autoimmune disease, which explains why I suddenly became intolerant to all food except for meat and dairy. I only ever expected the carnivore diet to help with my digestion, I didn’t expect that it would also improved my fatigue, cognitive function, sleep, skin and hair. It was fixing problems I didn’t even know I had. But I was slow to realise my autistic symptoms were going away too. You see, for most of my life I have had to mask my autism, I have consciously learned to act normal. Despite the act, underneath I always struggled to make eye contact or physical contact, and I had a lot of sensory issues. But recently I found at social gatherings I was extroverted, I really wanted to connect with people, I wasn’t bothered by noise, the conversation flowed naturally, I didn’t get stuck on one topic obsessively. But with ME, I am housebound I don’t get out in the world much, and I am still sensitive to light and sound and touch, but it’s not the same as autistic sensory overload. It doesn’t cause anxiety, just physical pain. I didn’t immediately notice a change because I was isolated. But it hit me at one particular gathering that I wasn’t autistic any more, I wasn’t wearing a mask, this was my real face, so to speak.
So what happened? Well we have to go back to where it all began. I was once a very outgoing, active, funny, social kid. I have clear memories of my 11th birthday, it was a pool party/sleep over, most of my class was there, I was very popular. There were only a couple of kids I clashed with. The next morning I remember waking up and feeling a bit weird. Mum made me some pancakes which I ate, but moments later I brought it back up again. I was trapped in the toilet for a good long while. I remember spending the rest of the day in bed, and later my friends came in one by one to say goodbye as their parents picked them up. It just seemed like I had gastro, but despite the worst of it passing after a couple of days, I never fully recovered. From that moment forward I had a sensitive stomach, I was never a fussy eater but I suddenly stuck to bland foods. Bread, crackers, rice, pasta. In hindsight probably the absolute worst things to put in my body. My personality radically shifted too, I became this introverted, angsty, goth pre-teen. But hey, that’s just puberty right? Well no, because it came with a lot of other symptoms, sensory issues, stimming and obsessive thoughts. I hated odd numbers and asymmetry, I obsessively avoided the sun because I had read it caused DNA damage. Worst of all, I turned violent. I scratched my poor cousin’s face, I pulled a knife on the neighbour’s son. I got into fights at school, not great when I was one of the tallest in my class. I almost got arrested once. In short, I lost my goddamn mind.
The next fifteen years of my life would be a real struggle, I always got into trouble at school, I developed selective mutism, barely spoke to anyone. Had only a few friends. I mostly spent all my time alone in my bedroom indulging in whatever I was obsessed with at the time, usually some comic or cartoon. I know way too much about Batman to this day. Back then I was fixated on his rogue’s gallery, I think I wanted to be like those villains, I too was misunderstood and I wanted to get my revenge. Thank god I don’t know how to make fear toxin or elaborate traps and riddles.
Things only got more difficult as I got older, I was slow to gain confidence and independence, this was exacerbated by parents who did everything for me. I’ve never been able to graduate, not from secondary or tertiary education, I’ve never been able to hold down a job for more than a few months. For some reason I kept failing, I kept pissing people off and I didn’t understand what I was doing wrong. Then at 21 I got ME for the first time and that’s pretty much taken me out of the game since then. I’m not physically capable of studying or working any more. Just maintaining this website is hard enough.
My mother always claimed I was a perfectly normal child, but I just dismissed her, so many autism parents want to believe the same thing. But now I look back on it, she was right, even looking back at my school work from around the age of 11 onward I would talk about how I wished things could go back to the way they were before. How I would describe those years as being the “dark times”. Even in my limited child mind I could tell something had gone very wrong. But from my perception I hadn’t changed, it was the world that was suddenly giving me grief. Suddenly everyone else was more hostile, suddenly everything was too loud and and too bright, it wasn’t me.
Examining my childhood before this time I can see only a few minor signs of autism, my teachers would often write in my report cards that I needed to socialise more. I was perfectly happy playing by myself, I liked playing with other kids, but I lacked that craving for social contact. I was a smart, imaginative kid, I’ve always been good at entertaining myself. I’d get so busy with my own little projects that I’d lose all sense of other people or the passage of time. I sometimes freaked out about noise being too loud, and there was a particularly nasty synthetic fabric in the 90’s that I couldn’t stand against my skin. Other than that, barely enough to qualify for an autism diagnosis.
What I am realising now is that when I got sick at 11, something drastic changed in my body, perhaps some upset in my gut microbiome, an inflammatory response, or an epigenetic change. Perhaps I was born with a genetic predisposition towards autism, but it only emerged under certain circumstances. I had a SAD diet throughout my childhood, but at a certain age my body stopped being able to handle it. Hard to say why, I guess little kids are way more resistant to crap food, something we lose as we get older. Can you imagine eating the amount of candy now that you did as a child? Nauseating, right?
Another factor to consider is that the autistic brain has an overcrowding of synapses, it’s not good at clearing out these unwanted structures. However fasting promotes autophagy, the body’s way of clearing out dead and unwanted cells. While doing keto I was doing intermittent fasting, eating during an eight hour window. I found I still ate a lot though, and I didn’t notice many benefits, but it was a more convenient way to live. When I got really sick I unintentionally started doing one meal a day, I was just not hungry most of the time. Ever since then I’ve stuck to OMAD. Meat and dairy are super satisfying, I’ll eat a plate or two which comes to about 2000-3000 calories and I am done for the day, I will not think about food again until the next day. And what this must have been doing was giving my body the opportunity to do proper deep cleansing for the first time in its life. Let me tell you, it saves a lot of time, energy and money too.
These changes have given me a lot to think about, I now wonder if I was ever really autistic to begin with. The kind of violent outbursts I used to have are not typical for autism, I’m wondering if my food intolerances merely caused a chronic condition that simply presented itself with many of the same symptoms. This leads me to wonder if those out there who have also cured autism with diet are actually dealing with a similar but different condition. There’s simply too little research to make any definitive claim. Some studies indicate a change in diet can help manage some symptoms of autism, reducing anxiety for instance. But a complete cure? That’s mostly anecdotal, based on reports by parents.
How do I feel now? Honestly, I don’t know. Am I happy to be neurotypical? It’s too early to say, I’m still adjusting. I don’t recognise myself, I’m a new person and that’s a bit scary. It’s kind of a Flowers for Algernon situation here. It is wonderful to be able to look my friends in the eye and really connect with them. I feel so much more calm and present. But it’s also easy to become overwhelmed with all these non-verbal cues and all the body language I was oblivious to before. I’m overthinking these things. Interestingly enough, my friends and family don’t notice a dramatic difference in me. I hadn’t realised until now how good I was at hiding autism. I was the proverbial duck madly paddling beneath the still surface of the water. Losing autism also has its pros and cons when it comes to dealing with ME. I find the isolation harder to deal with, I suddenly don’t like being alone for days at a time, I crave social interaction and I am energised by it. But on the plus side I’m not being tortured twice over by sensory pain. Just once over! I am able to think more clearly, though I still have to fight through brain fog, I am not getting as distracted as I once did. It’s hard to see this as a good thing because I never saw autism as a bad thing. I’m just different now and this is going to take me a long time to adjust to. I look back on the last fifteen years of my life and I don’t know how to feel about it, was I robbed of the life I was meant to have? Was it really me?
I would never advocate for a cure for autism and I find it unlikely that every autistic person is going to have the same “success” I did. But I do think my story is important to share. I’m not some desperate parent trying to rid this evil thing stealing my child away from me. I’m not some anti-vaxxer. I am an autism advocate who accidentally cured the wrong disability. Damn it, I wanted to get rid of ME!