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

I hope I got your attention with that provocative statement. Let me explain what I mean by it.

My experience of being diagnosed with autism was a relatively good one. I live in Sweden, I paid very little for access to the medical system. Yet when my life was staggering towards the brink because of how overwhelmed I was by the world, at first, I was diagnosed with bipolar disorder, sometimes known as manic-depression. I spoke to many wonderfully qualified doctors and psychologists, and they agreed this must be what was wrong.

There was just one problem – the medicines they kept on prescribing for me poisoned me without doing any good.

So, despite being inside an advanced welfare state with its system of ‘free’ care, I was going nowhere and sinking into a chemical haze. It all finally turned around when I met someone who had been through the same thing as me. “You know,” she said. “Autism and ADHD are often wrongly diagnosed as bipolar, especially in girls.”

At that point, despair ended, and tactics began. I took the helping hand of someone else’s experiences and made it part of my own personal liberation.

I’m not saying this because I think everyone’s situation is like mine; I’m using my own experiences to show some basic underlying facts about how diagnosis works and doesn’t work.

First of all. Doctors get it wrong. A lot. They are operating within a framework of prejudices and norms that colour their thinking. Are you quiet? Are you well-behaved? Are you female? Can’t possibly have autism. Some researchers even call autism an ‘extreme male brain’ disorder. I’m not a woman, but I’m non-binary and hence non-male enough that the doctors I spoke to didn’t detect signs of autism – and I suspect as soon as they had decided on bipolar, they stopped looking. They just kept on shovelling in the lithium and other medicine in increasing quantities. Despite medicine being based on science, there’s very little attempt to prove the null hypothesis here.

What did help was me doing my own experiment and treating myself as though I was autistic. Almost immediately, my energy surged back as I used dark glasses, headphones, and curtains to block out the overwhelm.

Then, when I eventually went on to ask for an autism assessment, the process was more like self-diagnosis than outsiders might assume. “Do you do x more than normal?” “Do you xx more than normal?” Well, this is amazing. The clinical procedure asks me to assess whether I’m normal. This process would only work if the person seeking care already has an objective understanding of what ‘normal’ is as well as data on their own behaviour. My behaviour had grown up through the years like a tree fusing into a park bench. I didn’t know what was the autism and what was ‘normal’ any more, not to mention my being so isolated through life that I rarely had peers to compare myself to.

In general, all the forms that autistic and ADHD people must fill out to get a diagnosis are rather like someone with a broken leg being asked to jump over a garden wall in order to get into a hospital bed. The system lacks a basis in objective observation, and it is also burdening those seeking care in a way that shows it doesn’t understand what autistic people go through.

Looking back at what I went through and what many other autistics go through, we can see that the process of official diagnosis is very much like self-diagnosis with extra steps, or rather self-diagnosis under supervision and then getting a stamp of approval. So, the gap between official and self-diagnosis is already not as wide as outsiders might think. 

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

What matters is the outcomes, regardless of labels. And the counter-argument is that self-diagnosis can lead to bad outcomes. Absolutely. Imagine if I’d self-diagnosed myself with bipolar and started swallowing lithium I’d taken out of an old Samsung mobile battery. But autistic self-diagnosis isn’t like that. 

As teachers, we are trained that a classroom made accessible for children with ‘special needs’ is usually a better classroom for everyone. Clear structures, less noise, less bright light, better graphic support, clearer text. It’s like that old cartoon: “What if all this is a hoax, and we make a better world for nothing?” Yes. What if you don’t really have autism, and you just make your world less stressful and less burning you out for nothing?

At the same time, the support you can get from the medical system and healthcare is important, as well as the support you can get from an official diagnosis in other things like looking for work. But that simply shows that social support is good and that we make better decisions and are more secure when we are supported by others. 

This is what I’ll talk about in the next article – self-diagnosis is actually community diagnosis.

~ Loukas Christodoulou

Image: Seth Martin