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Autism and anarchy: Self diagnosis is community diagnosis

Loukas continues their series on Autism and Anarchy; read the first instalment here.

Humans are not simple beings. If you look at how we behave compared to other animals, you might conclude that we’re totally unhinged. Yes, I’d say we are unhinged. For whatever reason, humans are generally more detached from our animal existence. We live in our own heads as much as in the world of smells and tastes. We decide things based on shared language and culture rather than on instincts.

All of this is why I’m going to talk about how self-diagnosis (for autism, ADHD, etc.) should actually be seen as a kind of community process and is better the more community there is in it. This is all informed by my anarchist perspective but the arguments I’m making should be clear to anyone who wants human liberation.

Mental health treatment—that’s not a simple process either! You know this. That’s why you’re here. In my previous article, I said that doctors interpret people looking for treatment based on their own cultural norms and prejudices; mainstream research has shown this conclusively.

To take this further – doctors are always going to have a very poor understanding of a patient because they never really know them. Ok, we can maybe think of an example which disproves my assertion. Imagine a doctor who’s lived in a small community since they graduated. They eat, celebrate and work alongside the same 200-400 people all the time. They know the people who come to them since birth. Every time someone complains of distress to this doctor, the medical specialist in our example can think about this information in the context of knowing who they really are. What is going on in their life, and what unique spin may they put on how they understand distress? Even so, we’d expect the doctor to get many things wrong. Maybe they would treat women less seriously because of local patriarchal norms. Maybe they would think too much about defending their status as the lone village expert and ignore expertise from patients themselves or other local wise people. All the same, this imaginary doctor would have a broad and deep understanding of their patients as rounded people based on participating in life along with them.

Now imagine the opposite scenario, where a doctor with nothing but their experience from education and seeing isolated people is expected to understand what people are going through. Sure, this might be good enough to be able to reliably prescribe an antifungal when you take off someone’s shoe and see the toe has turned green – but if we’re talking about complex psycho-social distress related to things like autism and other mental health issues the chance for things to go wrong is clearly immense.

Now, consider other examples. People who know you and know autism. A community of discussion. Grinding slowly the information and finding the common patterns.

It’s not perfect, but just like professional medicine, it has its own benefits and pitfalls. Now imagine if this kind of community support got the resources of the medical system (or, even better, the x100 resources the medical system deserves).

So, to return to my earlier statement.

Why is self-diagnosis the only valid kind?

It’s because for a diagnosis to be useful for living a satisfying, hopeful, and contributing life, you need to take it onboard as part of your own personal journey of liberation and as part of your community’s liberation. As a thought experiment, we can imagine someone who gets a diagnosis, gets no help and gains no insights from the process. They are left with a label but nothing else. We all know of people who this has happened to, especially adults diagnosed with autism, especially women. Unless the diagnosis becomes part of your life changing for the better, it is essentially meaningless. Likewise, we can imagine the opposite: someone who never gets a series of appraisements with doctors and nurses, never gets an official label, but through seeing themselves as autistic or ADHD or similar, makes changes in their life which reduce distress and help them take control of their destiny.

So I’ve now made two points in two articles. Firstly, self-diagnosis is (the only) valid diagnosis, and secondly, self-diagnosis (is best when it) is really a community diagnosis.

In the third article, I’ll say that a real autistic community is a class community.

~ Loukas Christodoulou

Image: Some guy from Fediverse

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