While reading this brilliant and informative article, Destroying the “Lack of Empathy” Myth in the Wake of Bleach Enemas & Autistic Abuse, I was reminded of the many times in my life that I wanted to “cure my autism,” too, which prompted me to want to tell my own story of internalized ableism.
I had absolutely no idea how much I hated myself (or even what internalized ableism was) until I was in my mid-thirties and had a complete nervous breakdown.
It took that, me completely losing my sanity, to realize what I had been doing to myself, why it was wrong, and why I needed to accept myself exactly the way I was created if I was to be happy and do what I came to this planet to do.
This is my story.
I Not Only Cried Over Spilled Milk, I Punished Myself for It
Have you ever heard that expression, “Don’t cry over spilled milk”? It’s a statement that’s meant to be reassuring when you’re upset. It means that you’re wasting your energy crying or getting angry about a minor change or inconvenience in your life.
As I said, it’s a statement that’s meant to be reassuring. Perhaps for some people, it is a comforting thing to hear. Not for me. I always felt the statement was an attempt to minimize my feelings, and this and other attempts to quell my “overreactions” to things just made me stuff everything inside, which, as I would later learn, would lead to an explosion.
I’ll give you an example. When I was in my 20s, I hadn’t even begun to recover from my trauma or uncover the truth about myself (that I was autistic).
When I was a child, and I would drop or spill or knock something over, I was usually abused in some way in reaction to it. I got yelled at, startled, grabbed, smacked upside the head, or excluded and neglected because, “nobody is that clumsy.” The common and staunch belief in my family circle was that everything I did was “for attention,” and that I should be punished accordingly.
Well, obviously that was not the case. As an autistic person, I have poor proprioception, which means I have trouble understanding where my body ends and other objects begin. This, coupled with autistic shutdowns and my brain’s constant attempts to dissociate from my abusive and sensory-exhausting environment, caused me to drop, spill, and knock over more things than I can count.
You’d think when I was an adult who’d moved out on my own, I would be safe from any type of abuse if I spilled or dropped something in the privacy of my own home. Oh, no. No. Sadly, and this is difficult for me to admit and talk about, I was not safe from the abuse—because I took over exactly where my abusers left off!
For example, let’s say I knocked a glass off the table. I would stare at it in abject terror as it fell, time seeming to slow down as it plummeted towards the floor. I could hear the crash before it happened, and my muscles tensed as I waited for the screaming, the smack across the back of the head, etc.
But none came. There I was, having broken something, and there was nobody there to punish me. So, I punished myself.
I assure you I was not conscious of this behavior, and it is only now looking back through a lens of years of therapy and knowing I’m autistic that I can share this experience in such detail with you.
Warning: Potential trigger. Self-harm mention.
So, there the broken glass was, and there I was. I would dissolve into a complete meltdown and berate myself in my mind for being such a clumsy, stupid, worthless piece of crap, and I would smack myself either in the head, the chest, or the arms. (I’m literally crying right now as I type this.)
Was this every single time I dropped or spilled something? No. But, it happened more frequently than I’d ever care to admit.
It’s true what they say. The abuse does follow you. The trauma of being abused either causes you to be abusive to yourself or others or get into relationships where you will be abused. Sometimes, all three. And it takes a tremendous amount of therapy and soul-searching and self-love to undo it all, and that can take decades.
“I Can Fix This!”
I’ve always been a fixer. That’s part and parcel of being an autistic person, I think. That’s why, if you are a neurotypical person venting to us about your problems and frustrations, we will be far less likely to listen and more prone to try to fix whatever is going on in your life, even if that’s not what you were looking for from us. I think it’s just the way our brains are wired.
- The gluten-free diet
In 2003, I found out I had Celiac disease, and I began eating an exclusively gluten-free diet. I found out from a friend that eating gluten-free “cured” her nephew’s autism, and I 100% believed it.
Again, I didn’t know I was autistic at the time, but I knew there was something different about me, that people didn’t like it, and that I wanted to change it.
When I realized I was autistic (2008), I also read about how gluten-free diets could help treat autism, and I was thrilled that I was a “step ahead of the game” in this area.
Listen, a gluten-free diet doesn’t cure autism. Nothing does. Autism is not a disease to be cured. It is a neurological difference.
However, I have noticed in my own personal experience, that if I accidentally eat gluten, the challenges associated with my being autistic do get worse. That doesn’t mean that there’s a direct link; but, in people sensitive to it, gluten can do serious damage to the brain.
For me, gluten causes me to dissociate, be unable to maintain eye contact even if I try (it’s 10X more painful for me than it normally is), I get very irritable and even more confused than usual. I don’t feel at all connected to my own body, everything is too loud, too bright, and too smelly for me to bear.
I experience these things anyway, but with gluten in my system, it’s much worse.
- Homeopathic Brain Protocol
In addition to being autistic and having celiac disease, I was also having chronic health issues that brought me to a naturopathic physician who did a series of homeopathic treatments on me called ‘Brain Protocol.’ This was meant to stimulate my brain’s development, which, according to the rationale behind this protocol, had been halted by trauma.
Did it work? Well, yes and no. It definitely did something because I noticed changes in the way my brain worked. I was able to make connections to things I’d never been able to before, so I was actually grateful for that.
For example, it’s the strangest thing, but I noticed something very interesting after I went through this months-long process:
I had bought a gluten-free pizza for myself one day, and I was about to put it away by sticking the entire box with the rest of the pizza into the fridge. Suddenly, a light bulb went off in my head, and I thought, “That’s going to take up too much room in the fridge, and it might get in my roommate’s way. I should put the remaining pizza in a smaller container.”
My eyes popped out of my head, and my stomach felt like a jolt of electricity had gone through it as this realization entered my mind. I had NEVER thought like that before. I had never been able to or even known that I could. It was as though I was suddenly aware of an expectation of me that was unspoken, and that was the first time something like that had ever occurred in my brain!
So, overall, the Brain Protocol was a strange process, but I don’t believe it did any harm to me. In fact, it may have even helped! However, the next series of homeopathic treatments I put myself through would land me in the hospital. I just didn’t know it yet.
- Bring on the chiropractic neurologist!
When I was in my early 30s, I had just escaped an emotionally traumatizing relationship where I was shown, in stark and terrifying detail, exactly how emotionally vulnerable and out-of-my-element I was in this world. This prompted me to continue to seek a diagnosis and a solution to whatever was “wrong” with my brain.
At this point, I knew I was autistic, but I couldn’t prove it or get a diagnosis, so I did the next best thing. I went to a chiropractic neurologist. He did something called a saccadometer test on me that measures eye movements and response time in the brain. Based on my results, he diagnosed me with a traumatic brain injury.
I was ecstatic! Finally, I had concrete proof that my behavior and clumsiness was the direct result of me having a different brain than those around me! I wasn’t an attention-seeking jerk, I just had a TBI!
Well, guess what? Nobody really believed that diagnosis, either. “A traumatic brain injury from what?” They would ask this with very suspicious looks on their faces. Um…I don’t know. How about all the times I was smacked upside the head, abused, or banged my own head into walls during childhood meltdowns?
The diagnosis was a blessing to me, but what I didn’t realize was that trying to change these brain differences was going to nearly destroy me.
In an attempt to improve my brain function, the doctor who diagnosed me gave me a series of brain exercises to do where I would move my eyes a certain way a certain amount of times each day.
Instead of improving my quality of life, these exercises started to very rapidly change my behavior and cause sensory processing issues that I hadn’t experienced before.
I didn’t know it yet, but what I was doing wasn’t helping my brain, it was hurting it!
- The homeopathic mistake
The second time I tried homeopathic treatments for my brain was right around the same time I was doing these exercises I had been given. Now, this is totally my fault here, and I’m not blaming the guy who tried to help me.
I bought these remedies at the suggestion of an Indian homeopathic specialist whom I’d never met and only found on an online forum for fixing health problems with homeopathy.
[Enter autistic naiveté here where I put my complete and total trust in a stranger to “fix” my brain. It literally never entered my mind that something could go wrong.]
He prescribed the proper dosage according to his diagnoses, and when I bought the remedies, I was supposed to mix them a certain way. Well, I messed up big time.
My brain doesn’t allow me to understand math, and I’m very literal, so something he said got lost in translation, and I ended up taking a whopping overdose of whatever it was I was using (no clue what it was at this point).
It Took Me Losing My Mind to Return to Myself
Here’s what I know from all of these experiences: I spent the better part of a decade trying to fix my brain, trying to fix myself, and trying to change myself to better fit into a neurotypical society, and it backfired in a BIG way.
And, it is my sincere belief that it’s because I’m autistic that these treatments didn’t work for me because they were not designed for the autistic brain. That, and my inability to understand instructions and overdosing myself didn’t help, either.
There were a bunch of supplements involved, as well, but this article is getting way too long already. Suffice it to say, in 2014, after two months of non-stop panic attacks, barely any sleep, paranoid thoughts, rapid weight loss, and extreme skin picking, I finally checked myself into a hospital, was admitted, and remained in a psychiatric unit for five weeks.
I had lost my mind completely. I was a shell of a person, and there was nothing left. It was there that I met a young woman whom I’m certain was autistic. One day, in the cafeteria, I caught myself trying to give her “tips” on how to fit in and not stand out so much.
That’s when it hit me…that’s when everything hit me.
That night, in the shower, I sobbed in a way I never have before. It was an all-out, crying, sobbing, hyperventilating, weeping, grief-stricken, third-eye-opening spiritual experience for me. I apologized to myself over and over and over again for trying to “fix” how I was created, how I was meant to be, and I found peace.
I vowed never to try to change myself again. In 2015, I finally got my autism diagnosis, and that’s when my life began. My real, authentic life, and despite that I mask from time to time so as not to call unnecessary attention to myself and not hurt the feelings of others.
I am me, I am Jaime A. Heidel, and finally, I love myself completely, and I know there is nothing I need to fix or change because I am exactly who I was born to be.
Buy Me a Coffee
- Could Student-Focused Learning Help Neurodivergent Learners Get a Better Education? - January 19, 2020
- Don’t Confront Your Autistic Loved One About Concerning Behavior… Investigate Instead - December 9, 2019
- Why We Need to Start Treating “Autistic” As Another Language Instead of a Condition - November 16, 2019
13 Responses
Thank you so much for writing this, you have had a hard time in the past, sounded so tough, but so pleased you have now reached acceptance and you are happy in yourself. Parents reading this I hope will realise that helping build their kids to be happy with who they are, is so important.
Thank you so much. Yes, I want more parents of autistic children to read this!
Mind you, some of those treatments don’t work for anyone. I mean, it’s true that certain things don’t work as well for autistic brains as they do for neurotypical ones, but a lot of these homeopathic, chiropractic (as in chiropractic remedies other than fixing back issues) and other such alternative medicines don’t work for anyone. So even if a neurotypical did these things, they would not have their issues fixed. There’s even a name for these sorts of non-medicines touted as medicine – woo. Meaning fake medicine that doesn’t work and yet is billed as medicine. And the only ones who currently claim to have an autism cure are selling woo. I’m sorry you got subjected to that.
And I’d like to add one more thing – it often seems like woo “works” better for neurotyicals because neurotypicals are better at a self-deception technique called “compartmentalization” in which they prevent certain types of thoughts from connecting with certain other thoughts in the brain, and it’s cousin, anti process, in which details that confirm a belief simply don’t reach the conscious level of awareness in the first place. This suite of self-deception techniques enables NTs to be better able to convince themselves that woo treatments work and to use confirmation bias to note the ways in which woo made things better while ignoring the times woo made things worse. You did not employ these self-deception techniques (since autistic people tend to do this less), and so your eyes remained open to the times in which the woo explicitly did not help you. And so you knew it didn’t work with your brain.
Thank you for your honest thoughts and opinion. However, in my own personal experience, there’s plenty of “woo” that worked for me. Supplements, homeopathic remedies, etc. There were definitely measurable changes, and I’ve had both good and bad experiences with said remedies. I don’t believe everything that’s natural is snake oil. Quite the opposite, in fact. Still, there are plenty of people who try to sell products just to make a quick buck, not to help others, and that’s a serious problem.
And I’d like to add one more thing (you may see a repeat because it seems to me as though my last comment failed to submit): The reason it might seem to you that woo brain remedies work for neurotypicals but not for autistic people, even though they don’t work for anyone, is because neurotypicals utilize more self-deception techniques than autistic people do. Two major ones (which autistic people still use sometimes, mind you, but to a far lesser extent than neurotypicals) are compartmentalization, in which certain types of thoughts are kept apart from one another in the same brain (this allows people to hold conflicting ideas in their head at the same time and see both as equally true), and also antiprocess (in which details conflicting with your beliefs never make it to your conscious awareness in the first place). The NTs who thought the woo worked used these techniques a lot and so they did not notice the ways in which the woo made them worse. Whereas you did little to no compartmentalization, and far less antiprocess, and so you could not so easily ignore the evidence that the woo treatments were not working for you.
Thank you for your honest thoughts and opinion. However, in my own personal experience, there’s plenty of “woo” that worked for me. Supplements, homeopathic remedies, etc. There were definitely measurable changes, and I’ve had both good and bad experiences with said remedies. I don’t believe everything that’s natural is snake oil. Quite the opposite, in fact. Still, there are plenty of people who try to sell products just to make a quick buck, not to help others, and that’s a serious problem.
Congratulations on accepting yourself as you are! It’s brave of you to share your story of going through so much. I hope it will encourage others to choose healthy attitudes about autism.
I’m working on a wikiHow article called “How to Stop Hating Autism” (for both autistics and parents who need an attitude adjustment). Your piece gave me a few ideas for more advice in it.
Also: Have you switched to plastic drinking cups instead of glass? Clumsiness runs in my family, and that’s one easy way to make accidents easier to clean up. 🙂
Thank you so much for your comment! 🙂 I do use mostly plastic now, but I’ve gotten a lot better about dropping things. As in, I don’t do it NEARLY as often as I used to. 😉 And, if I do, I don’t get that mad at myself anymore.
In my experience, supplements MAY help in some ways, because if we have gut issues — like celiac — in conjunction with autism, we may have problems in absorption of some vitamins. I know in my case, I have problems with a lot of the B vitamins and have to supplement to have “normal” levels. My daughter is likely to be the same.
As for Homeopathic remedies, there is documentation of the placebo effect in both neurotypicals and neurodivergents going back over 30 years. This is not necessarily due to compartmentalization because some of the documentation is from double-blind studies.
Thanks so much for your comment. 🙂
I’m so sorry for everything you went through as a child. My experience was different, but I understand the tape that runs in your head even after you’re out on your own. I’m glad you’ve gotten past a lot of that.
I had a similar catharsis after my diagnosis. I apologized to my younger (roughly 3 year old) self for not loving her and accepting her as I would any other autistic child and I asked for her forgiveness. It’s better, but almost 3 years after diagnosis, I’m still finding the authentic me. I hope to be where you are soon!