Autism and anarchy: self-diagnosis is valid

This story was originally published in February 2024 [editor]

There is much debate about whether self-diagnosis is valid for autism, ADHD and similar disabilities. Here is my position: Self-diagnosis is the only valid form of diagnosis.

I hope I have caught your attention with this provocative statement. Let me explain what I mean by it.

I have experienced being diagnosed with autism relatively well. I live in Sweden and have paid very little for access to the healthcare system. However, when my life was on the brink of collapse because I was overwhelmed by the world, I was initially diagnosed with bipolar disorder, sometimes called manic depression. I have spoken to many wonderfully qualified doctors and psychologists and they all agreed that this had to be the problem.

There was only one problem – the medications they kept prescribing were poisoning me without helping.

Despite being in a progressive welfare state with its system of “free” care, I was not making any progress and was sinking into a chemical fog. The turning point finally came when I met someone who had been through the same thing I had. “You know,” she said. “Autism and ADHD are often misdiagnosed as bipolar, especially in girls.”

At this point, despair ended and tactics began. I took the helping hand of another's experience and made it part of my own personal liberation.

I'm not saying this because I think everyone feels the same way I do; I'm using my own experiences to point out some basic facts about how diagnoses work, or don't work.

First, doctors get it wrong. They get it wrong a lot. They operate within a framework of prejudices and norms that influence their thinking. Are you quiet? Are you good? Are you a woman? You can't possibly have autism. Some researchers even refer to autism as an “extreme male brain disorder.” I'm not a woman, but I'm nonbinary and thus non-male enough that the doctors I spoke to didn't find any signs of autism—and I suspect once they decided on bipolar, they stopped looking. They just kept shoveling more lithium and other drugs into the wound. Although medicine is based on science, there's little attempt to prove the null hypothesis here.

What helped me was conducting my own experiment and treating myself as if I were autistic. Almost immediately, my energy came back as I used dark glasses, headphones, and curtains to block out the overwhelm.

When I finally asked for an autism assessment, the process was more like a self-diagnosis than outsiders might assume. “Are you doing x more than normal?” “Are you doing xx more than normal?” Now that's amazing. As part of the clinical process, I am asked to assess whether I am normal. This process would only work if the person seeking help already had an objective understanding of what “normal” is, as well as data on their own behavior. My behavior had grown over the years like a tree merging with a park bench. I no longer knew what autism was and what was “normal,” not to mention that I was so isolated in life that I had few peers to compare myself to.

In general, all the forms that autistic and ADHD patients must fill out to get a diagnosis are like asking someone with a broken leg to jump over a garden wall to get into a hospital bed. The system lacks a basis for objective observation, and it places a burden on those seeking care in a way that shows it does not understand what autistic people go through.

If we look back at what I and many other autistic people have been through, we can see that the process of official diagnosis is very similar to self-diagnosis with additional steps, or rather self-diagnosis under supervision and then receiving a seal of approval. So the gap between official and self-diagnosis is already not as big as outsiders might think.

At the same time, you can feel better if you do something good for yourself by making changes in your life that help autistic people or ADHD sufferers. If it works and makes you feel better, then do it! I'm not a medical researcher; I'm someone who wants human freedom, happiness and liberation. So whether you've identified the autistic particle or not, if self-diagnosis and self-treatment help you, then do it.

What matters are the results, regardless of the label. And the counterargument is that self-diagnosis can lead to bad results. Absolutely. Imagine if I had diagnosed myself with bipolar disorder and started taking lithium extracted from an old Samsung cell phone battery. But that's not the case with autistic self-diagnosis.

As teachers, we are trained to believe that a classroom that is accessible to children with “special needs” is usually a better classroom for everyone. Clear structures, less noise, less harsh lighting, better graphic support, clearer text. It's like the old cartoon, “What if this is all just a hoax and we're making the world a better place for nothing?” Yes. What if you don't really have autism and you're just making your world less stressful and less burnt out without exhausting yourself for nothing?

At the same time, the support you get from the medical system and health care is important, as is the support you get from an official diagnosis in other things like finding work. But this just goes to show that social support is good and that we make better decisions and are safer when we have support from others.

I will talk about this in the next article – self-diagnosis is actually community diagnosis.

~ Loukas Christodoulou

Image: Seth Martin