When you find out you are autistic…
I Am Autistic, and I Want A “Cure”
In my personal experience, autism is a very painful condition that I would gladly have treated.
This may be a bit of a niche topic. Or it may be not. If you are not familiar with the world of autism, I’ll sum it up for you: the autistic community has been strongly pushing back against the idea of a “cure” to autism over the last couple of decades. While academia and the medical establishment keep defining autism as a pathological list of deficits, the more recent neurodiversity paradigm has focused on highlighting the (monumental) deficits that society has in making space for human diversity, often arguing that being autistic is disabling due to our differences not being respected, more than our differences being disabling in themselves.
I consider myself a proponent of the neurodiversity paradigm, and I have written about it. I think it is revolutionary to abolish the concept of “normal.” To abolish “normal” is to abolish normativity in all its aspects, to open up the definition of human from the cultural, neurological, biological, political, economic, gendered, and ecological points of view. It is to make space for our free existence as autistic people and to demolish the colonial prototype of “human” that has led to planetary catastrophe. I love this paradigm just as much as I love my life and this world we live in.
So — how do I reconcile singing praise to a movement that celebrates our differences with the statement that I want a cure for my autism?
Well, I reconcile because “cure” is not, in fact, the correct word exactly. “Cure” implies that autism is a pathology, and to be neurotypical is to be healthy. I strongly disagree. “Treatment”, though. “Treatment” implies that I feel unwell and I want to feel better — that I feel imbalanced physically or mentally, I struggle with specific brain functions, and it creates significant issues in my life. And, oh boy, does my brain create significant issues in my life.
The thing is, “autism” is not one single thing. It is a broad categorization of experience. It is a real thing, but likely to include a multiplicity of causes and a multiplicity of aspects that can be experienced differently by people. Autism is a neurotype. If an autistic person is depressed, you can say that they have a “comorbidity” of autism and depression or that they are autistic and feel depressed. You can say that anyone can feel depressed. You can also acknowledge that autistic people have statistically absurd rates of depression and wonder why.
Theoretical arguments like these hit a dead end at some point, in my opinion. What “autism” is, or rather how it is viewed, depends ultimately on its definition. I can’t claim to be making a universal argument. I can only express my own personal experience here.
The Dark Side of Autism
My own personal experience is that, for me, autism has been an immensely painful condition to bear. Literally, I am sure my autism affects the parts of my brain that are involved in mental pain because living is excruciating. Mental, emotional, or sensory overexertion transmutes for me into that pain, which can exceed what my brain can contain and become a meltdown. Alternatively, the whole thing can be turned off by a dissociative shutdown.
As an autistic person, I can’t find it in me to “normalize” a nervous system condition that causes such extreme and disrupting experiences as shutdowns and meltdowns just from simple, ordinary daily life. That is, precisely because I know for myself exactly what a meltdown and a shutdown are.
Meltdowns and shutdowns are often mistaken for “emotional reactions.” Meltdowns are still often called “tantrums” by many people. They are not. They are, rather, shortcircuits of an overloaded nervous system. They’re the product of a limited or uncalibrated processing ability way beyond the conscious level, which drains the physical resources of the brain until it can’t cope anymore, and entire parts of the brain misfire or go offline. That is such an immensely disrupting experience that your entire psyche comes out of it feeling like it has been shattered and then recomposed.
I have been told by the autistic community that I have “internalized ableism” for wanting a treatment. I struggle to understand this. How is believing that I deserve to be free of such extreme suffering, being ableist? Is ableism not the force that believes our lives and well-being matter less?
Here’s what a shutdown feels like: I can talk with someone in person roughly for one hour (or even much less, depending on the situation) before I start feeling pressure in my brain. The feeling cannot be described in common language, really. I start feeling very exhausted, and I can feel my brain literally shutting down its functions. It’s just as if someone pushed an “off” button. Words and vision start turning into meaningless white noise, and I start mixing words up in sentences. My smile starts betraying my exhaustion. Movement becomes hard. I can’t think of what to say next. My brain feels stretched beyond its limits, and I feel like I am disappearing from this realm entirely and going “somewhere else.” I struggle to stay present and remember where I am, let alone looking “presentable.” I forget to hear what’s going on around me. It begins to feel like this conversation started an undefinably long time ago. I have been in many situations where I started begging god to make me faint rather than having to take any more stimuli at all in those moments. “Please, please make me faint; give me a break.” This is what a shutdown is. I never fainted.
A meltdown is a different kind of beast. Meltdowns can feel like some kind of seizure to me (sorry, epileptic people, according to doctors, I don’t have epileptic seizures, so please don’t take me too literally; I’m just trying to describe a feeling). Something takes over my whole brain and body like an overwhelming force. My brain shortcircuits. There are “emergency” alarms going off all over my brain. I feel overworked and exhausted but heightened, and my brain feels like an exploding fireworks depot. I get suicidal. I start sobbing uncontrollably. The mental pain gets so unbearable that it’s all I can focus on, mentally begging for it to stop, feeling my brain misfiring, but the energy needs to run its course until it’s discharged. I may forget where I am, and I may even wail from the mental pain I am experiencing. If you see me from the outside, you would guess I am either in devastating grief or in severe physical pain. It’s not fun — I don’t really have words to sugarcoat it. For some kind of neurological miracle, my brain is able to delay my meltdowns until I have no one around me, but not all autistic people have that privilege.
Meltdowns and shutdowns are the price I pay for existing and attempting a tiny fraction of what is considered “regular activity.” Now, my question: why would I not want a cure for this?
There are so many more aspects of my autism that affect my life severely. For example, something that is not often talked about is the ways in which autism can affect memory. I don’t have a coherent, reliable autobiographical narrative of my life available to me. My episodic memory is impaired — that means that people constantly tell me of things that happened while we were together that had been completely erased from my consciousness. I forget what I read, talk about, and hear. I forget entire projects I started.
Sometimes, when I’m told about something, I do remember it, but the memory feels distant as if it were from another lifetime. My brain generally does not spontaneously recall things, which means I can’t rely on my automatic memory processes for meaning-making and conversations. I can go to the shop and know where it is. But I cannot spontaneously recall by association anecdotes or things I know when I speak with someone unless I make a superhuman effort to go beyond myself (and still). That also includes job interviews, by the way.
I have extremely limited processing capacity. When I do physical activity, I normally lose speech. Or not exactly, but speech will be very unnatural and difficult for me because the resources have been depleted by movement. Forcing myself to speak may result in a shutdown. I also generally struggle to literally understand what people are saying in my daily life due to auditory processing problems. It gets worse in loud environments like parties, weddings, groups, and pubs — conversation becomes pure gibberish and I might as well be attending a party full of Minions speaking in Minion language.
This adds to things like difficulty with applying knowledge — I can handle extremely complex concepts, but they usually remain dissociated from their practical meaning. Or the struggle with generalizing knowledge — what I learn in one context will be tied to that context in my mind, and I will struggle to carry it into another context. For example, I know martial arts moves, but I can’t learn them in sequence because my brain will learn them as a sequence only, and won’t apply them in isolation.
I could go on and on, but the truth is that in my personal experience, autism has essentially boycotted all my attempts to do anything in my life. It has made me experience agony in lieu of what could (and should) have been very pleasant experiences. It has made easy things extremely hard. For example, last year, I went on a trip with some friends and acquaintances. The social and physical demand of being constantly in a group, speaking and doing things away from what is familiar to me, was enough to make me spend half of the time hiding in the toilet or the room, claiming I had a headache and silently sobbing my very soul out in repressed meltdowns, all the way into having a meltdown in the plane’s toilet and one in the middle of the bus from the airport. That’s a trip that was made to have fun.
After these episodes, my mental faculties are impaired. I feel as if a train just ran over me. I can’t formulate thoughts. I can feel the physical exhaustion of nerve cells all over my body. It takes a toll. In the example above, I very much wanted to be part of the trip and enjoy and make funny jokes that would make me a pleasant presence to the rest of the group, but I couldn’t because I was busy feeling like I was dying.
Autism always felt like an external thing imposed on me. This is my personal experience. It has always felt like being trapped behind a glass and unable to get through, no matter how much I persisted in my attempts to break it, melt it, circumvent it, or trick it out of existence. I am sorry, fellow autistic people who have endeavoured to dismantle this trope, but this is an image I came up with before even knowing I was autistic. It perfectly describes my experience of it.
I can speak the language of “comorbidities” and say that I don’t want to cure my autism. I‘d like to cure my nervous system’s lack of tolerance, my speech processing issues, my auditory, visual, and touch processing disorders, my chronic fatigue, my severely deficient autobiographical memory (SDAM- yes, it’s an official name), my slow processing speed, my dyspraxia, my proprioceptive impairment, my emotional dysregulation, my depression, my alexithymia, my executive dysfunction, my lack of social awareness, and the lack of connectivity between different brain areas. Thank you.
And sure, I can keep my natural sense of ethics, imagination, drive and independence, depth, ability to focus, sense of awe, questioning attitude, logical abilities, and openness to “difference,” thank you very much. I like these traits. As you can see, this second list is shorter.
Whether my treatment is acupuncture, psychiatric medication, transcranial magnetic stimulation, neurofeedback, stem cells, tai chi, nutrition, genetic manipulation, or a miracle from the lord, I honestly do not care much anymore. I also do not care about being “normal.” God, no. All I care about is to have a chance to live a decent life as a human being.
This is merely my own experience. I do not believe that “autism is a pathology that needs to be cured” or a monster that takes people’s children (hello, Autism Speaks); on the contrary, autism is an identity that needs to be respected, and profound social change is needed for that. I also believe, however, that autism can be profoundly impairing for many people, and those people deserve to have a chance to freely make the decision of whether or not they wish to receive some treatment (and for that, research about treatments needs to continue, though hopefully with a more respectful approach by researchers). I believe that parents essentially torturing their children to “cure” autism out of them, and a rigid stance accusing people of “internalized ableism” for expressing the need for basic well-being are two sides of the same coin. And the coin is called Invisibility. “Autism acceptance” and the pursuit of treatment are not antithetical but can be complementary sides of a new coin that our community has never known before.
Thank you for reading! Leave a comment if you wish.
