Why is getting diagnosed with autism so difficult?
The Autistic community has written at length about why getting a diagnosis is so hard, especially with regards to those at particular intersections of experience. I myself have spoken about how our diagnostic understanding of autism is based on the Autistic person in distress. Current models used to diagnose simply do not work.
There is a wider issue to consider, though, than race, gender identity, or trauma. We have to consider the individuality of Autistic people.
Humans are never just one thing. We don’t just experience being Autistic. Every single one of us lives at the intersection of multitudes of experiences. Currently, diagnosis of autism is based on a collective understanding of a shared group of observable behaviour. This diagnostic conceptualisation was socially constructed (ironically) by people who rarely share in Autistic culture. This has resulted in very restrictive criteria that boxes out a lot of people.
Due to the intersectional nature of humanity, these criteria will never capture all Autistic people. Allow me to give an example:
I am Autistic, ADHD, and Schizophrenic. This does not mean that I have Autistic, ADHD, and Schizophrenic traits. None of these traits cancel each other out either. A more accurate description would be that I am AuDPhrenic. My experience arises from the interactions of my neurological systems. I don’t have separate parts of my brain for all three diagnoses. I have a human brain, and my observable behaviour has then be put into three categories.
This is why the medicalisation of neurodivergence has been an issue in perpetuity. We try and categorise human experiences despite its propensity to defy expectations. There is no such thing as an objectively neurodivergent brain. Some of us are just wired in a way that stops us from assimilating into normative society. Any categorisation is an abstract concept that is entirely constructed by humanity.
We can see the irony of diagnosis in neuroqueer theory. Anyone can queer their embodiment. It is not restricted to the Neurodivergent. Neurotypical people could, in theory, neuroqueer to the point that their observable behaviour is not neurotypical anymore.
So what does all this mean for diagnosis?
It means that we need to move away from one-size-fits-all approached to diagnosis. We need to move away from diagnosis altogether. In a post-normal society, we need to allow people to use the words that best describe their own sense of identity. As I talk about in A Treatise on Chaos, identity is a knowing target. The nature of the Chaotic Self is that we grow and change, and our identity is constantly shifting and changing.
We need to allow people to use the words that best describe their identity. Locking a person’s identity behind a diagnosis and then requiring them to receive that diagnosis is a paradox and a betrayal of the neurodiversity movement itself.
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