Diagnosis is a privilege, it’s a fact known by many in the autistic community. Beyond this, there are other issues with diagnostic criteria and how they were developed, but specifically I want to zoom in on one issue; the diagnostic criteria seems to be based on autistic people in distress.
Rather than looking at autistic people in their daily life, the criteria used to diagnose us seems to be reliant on us having reached a point of great trauma or distress. This presents a number of problems for access to diagnosis, but what how does this line up with the goals of the neurodiversity movement?
The neurodiversity movement has one big over arching goal; to create a more accepting and accessible society for neurodivergent people. It is the hope of many of us in the movement that we can create a society where neurodivergent people don’t have to fight to fit in, and are not tormented by a world not designed for them.
Let’s take a trip into the future, 100 years or so. Imagine a world where the neurodiversity movement has achieved it’s goals for the most part. Autistic people are now accepted by society and treated equitably. The world is no longer a constant assault on our senses, and we have the same access to education, employment, and healthcare as the neurotypical population.
A by-product of this world is that autistic people experience significantly less distress. What does this mean for autistics seeking a diagnosis? Happy and content autistic people are (in my opinion) much less likely to meet the diagnostic criteria currently listed in the DSM. Some might argue that a fair world would not require us to have a diagnosis, but lets assume that in our hypothetical future there is still some work to be done and a diagnosis is still an important part of access to services and support.
I suspect that in this hypothetical future, the number of autism diagnoses would begin to decline, resulting in a world of confused and lost autistic people, unsure of who they are. For this reason, it seems clear to me that the diagnostic criteria needs to change.
For the sake of future generations, we as autistic people need to embark on a campaign of activism. We need to show diagnosticians that the current diagnostic criteria is not fit for the purpose of the world that we are trying to create. Research needs to inform the criteria about what the average autistic looks like in day to day life, and not just how they appear due to trauma or distress.
The neurodiversity movement is a beautiful force for good in the world, and now it is time for it to create diagnostic criteria that reflect the world we are trying to create. Until this is done, there will be no accessible and equitable world for all of us. We owe it to our children, and their children, to plan for what we hope to build.