Improving The Diagnostic Process

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I’ve written before about barriers to diagnosis. Autism diagnosis takes a long time. It can also be costly, difficult to get an accurate result, and heavily influenced by the biases of the diagnosing specialist. When you’re looking at an 18-month waiting list with “higher priority” cases skipping the queue, it can quickly put you off seeking a diagnosis that would allow access to accommodations that could improve your quality of life.

It’s a common topic when talk turns to diagnosis. Frustrated autistic adults ask each other why it takes multiple appointments and months on a waiting list for someone to diagnose something that we have an inkling of within minutes. For many of us, other autistics or those with a Broad Autistic Phenotype (matches a lot of criteria but usually not enough for a diagnosis) shine out like beacons. We get that sense within a very short time of someone with a similar neurotype. I’m speaking anecdotally here, of course, but we also seem to be very accurate in our observations, and generally agree on them.

Autistic people are in a unique position when it comes to diagnosis. Once freed from the hampering stereotypes and the bad science and inaccurate descriptions perpetuated by professionals, we’re very capable of describing our experiences in ways that strike chords with other autistics. The thought occurs – why is community recognition not an accepted diagnostic alternative?

Diagnosis is based on a history, self-report and a bit of observation. History can be difficult if there are no parents or teachers available to describe childhood behaviour. Self report is also problematic. With the DSM-V’s criteria, it’s possible for the diagnosing specialist to fail to ask about autistic experiences that are very common and recognised by the community but didn’t make it into the manual. Lastly, observation. If there is one thing we’re sick to death of as a community, it’s being told “you don’t look autistic”. We have often been pressured to hide autistic traits, learned to fake social interactions. We will often fall back on scripts in order to pass in social situations. If we’ve made it to adulthood without a diagnosis, it means some of these techniques worked well enough to make us less visibly autistic. The idea of a non-autistic “expert” looking for autistic traits in someone who has become used to hiding them is ridiculous.

Mel Baggs recently wrote about how it’s possible that autistic people read body language with a different set of senses, or using senses differently to how non-autistic people do. If that’s true, then it’s not only possible but probable that autistic people notice a different set of behaviours to non-autistic people when determining if a person is autistic. Mel suggests that we are also better suited to reading autistic body language, and communication differences are the result of autistic people struggling to decipher non-autistic behaviours whilst non-autistic people similarly struggle to decipher autistic behaviours.

So it makes sense that in addition to being able to quickly spot another autistic person by their behaviour, we should also be better at spotting autistic people who have learned to pass by neurotypical standards.

All of this is neatly ignored by the diagnostic criteria.

I would like to propose an alternative: a system by which an autistic person is diagnosed not by an expert by clinical criteria, but by a jury of their peers.

The observation should be informal, and should take place in a variety of environments in order to allow discussion around sensory or social difficulties. What do you notice? How do you feel about this environment? The panel should of course be trained in how to handle the situation should the environment have severe negative effects, and would benefit from having access to a room or large vehicle in which facilities for calming and sensory regulation are provided.

The panel should be made up of a variety of people with different characteristics. Different ages, genders, backgrounds and a variety of autistic subtypes would be ideal.

After some meetings in different environments and an informal discussion to replace the observation and interview parts of the process and cover any easily accessible history, the panel members would each submit a short response describing anything that stood out to them, and a ballot on whether they would describe the test subject as Autistic, Broad Autistic Phenotype, Otherwise Neurodivergent or Non-autistic/Neurotypical.

This evidence could then be examined by a third party, possibly in combination with a questionnaire or brief interview. The third party would not need to be a specialist, as a panel of experts in the field (autistic people themselves) have provided evidence.

Peer consensus diagnosis has the potential to significantly ease the pressure on psychologists tasked with examining adults for autism, shortening waiting lists and may even yield a more accurate analysis of the test subject’s autistic traits.

This method would of course need to be tested thoroughly with a range of neurotypes to establish the accuracy and develop specifications of how to compose the panel, but if it proves successful, may pave the way for the approach to be used for diagnosing other minority neurotypes.

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