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I am formally diagnosed, and I don't feel that self-diagnosed people are appropriating anything of mine. Yes, some people fake disability, but that is pretty rare in my experience, and I know a LOT of disabled people. Ironically, one of the suspected fakers got an official dx.
And just to reiterate: I did not "seek an autism diagnosis". I did not self-diagnose. I had NO IDEA that I was autistic.
Subsequently, through me, many people around the world have become aware of their own autistic traits and the majority of these eventually sought and received a formal diagnosis.
There have been three people whom I believe(d) to be autistic who did NOT receive a formal diagnosis. In the one case, I believe that the psychiatrist was particularly inept and he had in fact admitted that he wasn't good with autism a year or two earlier.
Last year a friend (also formally diagnosed) went to him for help with ADHD. She is a masters student in autism, and she was able to provide him with knowledge he didn't have, so that he could serve future patients better.
At the #AutisticHealth2018 Seminar, we (autistic people, including one self-diagnosed) trained health professionals in aspects of autism with which most were unfamiliar.
Two doctors said that in medical school they had received only two hours of training in autism. The average self-diagnosed person has (in my experience) studied autism for many days and has often spoken to other autistic people too to try to figure out whether they relate.
These doctors did not have such a background. The one doctor had a non-speaking autistic son, but had never read the writing of non-speakers and wasn't aware of the inner workings of autistic apraxia. (She went on to get communication therapy for her son thanks to the event.)
At the end of the event the doctors suggested that if we draw up the curriculum, they would lobby with their medical organisations for us to present this course to doctors in training.
While the seminar included a lot of anecdotal evidence, we had solid formal research to back us too. All the presenters were autistic. One was a neuroscientist.
Although autism is an umbrella term for a cluster of neurodevelopmental endophenotypes (or more accurately, a cluster of clusters), I am keen to see how the work of Dr. Elizabeth Torres turns out in terms of creating micromovement signatures for these endophenotypes.
Because right now, autism diagnosis is indeed messy, and the purely deficit-based model based on external observations and in some cases even value judgements, is often not valuable.
I find a lot of value in the writing of both Ido Kedar and Paul Whiteley on this subject, even though I don't agree fully with either (and for different reasons). idoinautismland.com/?p=496
Like Paul, I use autism as a plural -- autisms -- and I don't think that the DSM with its levels is helpful to understanding what autism is either physiologically or even psychologically.
From a physiological perspective, there is no clear linear progression of a single factor or set of factors that map to these levels.
There is a tendency to confuse 'degrees of autism' with the amount of support someone will most likely need, and BOTH of those scales are messed up, because NEITHER is linear.
To declare self-diagnosis inherently invalid when formal diagnosis is itself such a quagmire of problematic premises and in some cases ill-equipped, inexperienced and narrow-minded diagnosticians, is simply unfair.
Yes, we need better ways. But autodidacts shouldn't have their attempts at self-knowledge curtailed just because they may go off on a wild goose chase. Rather, there should be attempts to provide similar intensive learning to those whose place it is to serve them.
And for goodness' sake, don't make disabled people jump through hoops and cough up vast sums of money to get their official autism label. How many times do we have to remind our governments that they signed the #CRPD?
Disability doesn't sleep quietly in its kennel and come out only once the official chub is there. UNDIAGNOSED PEOPLE ARE OFTEN MORE DISABLED THAN DIAGNOSED PEOPLE.
The #CRPD recognises that disability the result of a complex interaction between the individual and the environment, and that part of this is social: according to the social model of disability, society contributes to disability by disabling people in multiple ways.
Failure to diagnose someone, when diagnosis would provide that person with a key to support and ENablement, is DISabling to the individual.
I have issues with the word 'diagnosis' to signify the identification of some aspects of human neurological variation, but I accept that it is the current vocabulary that unlocks services, support, recognition and a semblance of understanding.
The abuse of a system or thing by a few individuals - a communication method, a diagnostic label, a community tap, a means of transport or mobility - should not result in the lambasting of people who legitimately deserve access to that system.
Fix the system. Don't break those who struggle to use it.
Now, let's hand the mic to a professional who is licenced to make a formal diagnosis.
