On not needing a cure

[This post was published on a former blog, “Autistic Empaths.” It was written while I was still a medical student and new to my understanding of myself as autistic, as well as autism and disability.]

My very recent autism spectrum evaluation and diagnosis was quite clinical. I knew that I had sensory processing difficulties and that I was likely borderline for the spectrum, but did not want to self-diagnose in an era when people often toss out lines like, "We're all a little bit on the spectrum." I saw a clinical psychologist who is often referred adults for late-diagnosis who are "close to the line" as she called it. Her approach was methodical, rational, and replicable (she had my partner fill out the same questionnaire to compare). 

While she struck me as a kind and understanding person, her training in clinical psychology views the spectrum - and therefore my experience - as strictly pathology. There was an undercurrent of how my brain worked less, or was just a bit broken. While it was a relief to have official confirmation of what I have always known - that my brain works differently -  I found myself revving up to defend that I do not have a disability so much as a difference.

In the inevitable post-diagnosis internet black hole, I was struck by how many non-profits and parent organizations are calling for a "cure" for autism. I suspect that many parents and practitioners who use the language of "curing" autism would see someone like me and consider me cured. I am fully independent, have "passed" rather successfully for three decades, and am on my way to becoming a physician. I doubt the intention is to offend or dismiss, but language is important: you cannot cure me without erasing me.

To cure me would be to change my brain, how my mind works and how I experience the world. What is that, if not who I am? There are aspects of my experience that are more difficult than they are for other people (particularly around sensory processing), but there are just as many things about my mind that make different things easier for me. I would not give up my intensity of focus and ability to process detail in order to be able to easily sit and talk to a group of people under fluorescent lights. 

I cannot imagine what it would be like to have a nonverbal or self-harming child, and can certainly understand why a loved one would want to change that experience. Many people on the spectrum also have co-occurring diagnoses, such as intellectual and learning disabilities, that greatly confound with autism and I suspect worsen the symptoms; I am not addressing those situations here.

However, from my perspective, autism is a different way for a brain and nervous system to function and process their environment (just like other conditions, like ADD, that fall under neurodiversity). We are born with these different brains. I highly doubt any refrigerator mothers or vaccines suddenly changed us from neurotypicals. However, different nervous systems require different care and may show distress in very different ways.

My mind is fond of song lyrics. Alanis Morissette: "Treated like a rose, as an orchid." Spectrum orchids, neurotypical roses. All beautiful, but if you try to grow orchids the way you would roses, you will not have healthy orchids.

I will not question the experience of so many parents who insist that symptoms of autism appeared after vaccination, but I will offer two plausible alternatives to the vaccines "causing" autism. One: the symptoms of an overloaded nervous system are more likely to appear as a toddler is engaging with more of the world - right around the age most children begin the vaccine schedule. Two: vaccines are a burden on the body because it has to process both the micro-disease itself and the carriers. What if people on the spectrum are more physically sensitive in general, and therefore more likely to have an adverse reaction to a vaccine? I know that when I am sick, my ability to process and engage is greatly diminished; I can only imagine a small child, barely verbal yet to begin with, would have an incredibly difficult time. And then the stress of not being able to communicate your needs would add to the overall burden, persisting symptoms until something shifts. (This would be a good place to note that none of this is based on anything more verifiable than my own musings; i.e. I very well may have no idea what I am talking about but feel as an autistic person myself I have the right to muse.)

The conversation around a "cure" is fundamentally about improving people's lives, allowing those of us on the spectrum to function independently and engage with the world as fully as we desire. We really want medicine to learn how to help us keep our finely tuned nervous systems in balance so these symptoms of a taxed and again, different, nervous system are diminished. There is risk in assigning what counts as a symptom: stimming, such as hand-flapping or spinning, certainly makes it more obvious that someone is not neurotypical, but I do not think it constitutes a symptom if it only has the potential for making other people uncomfortable. The symptoms that we want to avoid or manage are the things that negatively impact our lives, such as shutdowns and meltdowns, self-harming behaviors, and an inability to communicate and express ourselves fully. We do not need a cure for autism, we need medicine that understands how to work with our brains and bodies to help them function optimally. I am an Aspie and I do not need to be cured.

It is time to change the conversation. We do not want to cure autism, we want to treat patients - treat people - who have a different nervous system and experience of the world.