I was talking to an occupational therapist about our respective work. She asked me how I got into autism training and I explained that I became interested in autism and indeed passionate about spreading information about autism due to discovering I was autistic five years ago. Her head jerked up, she looked straight at me and asked, well almost snapped, “How do you know you are autistic? Who diagnosed you?” I got the impression that if I was not able to answer these questions to her satisfaction, my autism would be considered invalid. In that moment I was glad that I had an official diagnosis, so I could be believed and also bothered that it was needed for me to be believed.
The question that I asked myself is who should be believed about autism – people identifying as autistic or the disparate professionals empowered by the establishment to deliver diagnosis (which even their own peers or other groups of professionals often dispute)?
While it seems that there are people who are clearly autistic and others who are clearly not, there will always be some whose neurology is more difficult to call. This does not negate the concept of autism, or the fact that autism can be an important part of a person’s identity. I would however argue that the definition of autism is cultural rather than scientific.
The fact that there is bi-sexuality and that some people are initially attracted to the members of one sex but then spend the lives with someone of the other sex does not invalidate the gay movement or the fact that homosexuality is a condition. Homosexuality was removed from the DSM (the US psychiatric bible) as a result of pressure from the gay movement, society not the condition itself changed.
In the brilliantly engaging book about maths for non-mathematicians “How not to be wrong - the Hidden Maths of Everyday Life” Jordan Ellenberg mentions how useful it was to think about how things should be defined rather than what they were. If we look at autism from this point of view the issue is not what specific neurological differences underpin autism (nobody claims to have discovered this yet anyway) but who should define autism. Should it be people who have studied psychology or medicine and looked at autism through that lens or should it be people whose life experience resonates with the current view of autism and the autistic people they connect with?
I find the insistence on the need for an “objective scientific” diagnosis when we have yet to identify biological markers somewhat bizarre (maybe it is my autistic literalism that says if you are saying it is more reliable and scientific, you need to evidence to support this). It looks to me like a power grab by a group of people who have made careers in a field they see shifting away from their control.
Uta Frith, for example, previously suggested that Asperger’s Syndrome might better be regarded, not as “a very mild form of deficit” but as “compensatory learning in the presence of a severe deficit”. This statement appears to acknowledge that it is not possible to calibrate the level of difference or difficulty experienced by an individual from the outside. However last year she claimed in a radio debate “Rethinking what is normal” that many people are inappropriately claiming they “have autism” when actually they ‘just’ have social difficulties. I fail to see how Uta Frith can legitiately claim for herself and other similar professionals the ability to know what is inside another person. In the October 2014 issue of the Psychologist she says “If the voices of people with autism are also heard they will give an important counterbalance to researchers’ and professionals’ pronouncements” but apparently only if the professionals get to validate which voices count as truly autistic.
My belief is that if we start to think of autism as a way of describing a natural part of the human neuro-diverse constellation rather than a definition of a medical disorder that needs to be diagnosed by a professional, we’ll be moving forwards.
The question that I asked myself is who should be believed about autism – people identifying as autistic or the disparate professionals empowered by the establishment to deliver diagnosis (which even their own peers or other groups of professionals often dispute)?
While it seems that there are people who are clearly autistic and others who are clearly not, there will always be some whose neurology is more difficult to call. This does not negate the concept of autism, or the fact that autism can be an important part of a person’s identity. I would however argue that the definition of autism is cultural rather than scientific.
The fact that there is bi-sexuality and that some people are initially attracted to the members of one sex but then spend the lives with someone of the other sex does not invalidate the gay movement or the fact that homosexuality is a condition. Homosexuality was removed from the DSM (the US psychiatric bible) as a result of pressure from the gay movement, society not the condition itself changed.
In the brilliantly engaging book about maths for non-mathematicians “How not to be wrong - the Hidden Maths of Everyday Life” Jordan Ellenberg mentions how useful it was to think about how things should be defined rather than what they were. If we look at autism from this point of view the issue is not what specific neurological differences underpin autism (nobody claims to have discovered this yet anyway) but who should define autism. Should it be people who have studied psychology or medicine and looked at autism through that lens or should it be people whose life experience resonates with the current view of autism and the autistic people they connect with?
I find the insistence on the need for an “objective scientific” diagnosis when we have yet to identify biological markers somewhat bizarre (maybe it is my autistic literalism that says if you are saying it is more reliable and scientific, you need to evidence to support this). It looks to me like a power grab by a group of people who have made careers in a field they see shifting away from their control.
Uta Frith, for example, previously suggested that Asperger’s Syndrome might better be regarded, not as “a very mild form of deficit” but as “compensatory learning in the presence of a severe deficit”. This statement appears to acknowledge that it is not possible to calibrate the level of difference or difficulty experienced by an individual from the outside. However last year she claimed in a radio debate “Rethinking what is normal” that many people are inappropriately claiming they “have autism” when actually they ‘just’ have social difficulties. I fail to see how Uta Frith can legitiately claim for herself and other similar professionals the ability to know what is inside another person. In the October 2014 issue of the Psychologist she says “If the voices of people with autism are also heard they will give an important counterbalance to researchers’ and professionals’ pronouncements” but apparently only if the professionals get to validate which voices count as truly autistic.
My belief is that if we start to think of autism as a way of describing a natural part of the human neuro-diverse constellation rather than a definition of a medical disorder that needs to be diagnosed by a professional, we’ll be moving forwards.
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