Autism Research aways seems so far behind community experience.

Once you’ve been aware of being autistic for a while, there are patterns you begin to notice. I remember realising, for example, that autistic people are pretty much always infantilised by professionals – especially doctors and social workers. I also recall the first time I noticed that autistic people were very poorly represented in the media, with stereotypes dating back to the 1940s at centre stage.

Another thing we’ll all notice eventually is the curious lag of research into autism, compared to what autistic people report openly of their own experiences.

Research often lags behind anecdotal evidence. It kind of has to, as the scientific method promotes rigour and detail, which is slow and painstaking. So to an extent I can understand this lag. However, autism research almost always boils down to measuring autistic peoples’ experiences, often by simply communicating with us in methodologically controlled ways. So why such a lag when it is the anecdotal that actually forms the bulk of the evidence?

I write this in a slightly irritated mood, in response to reading some research from last year which declared that autistic interests might actually be beneficial to autistic people. This was published in May 2021.

I have been personally extolling these virtues of special interests since at least 2018, and mostly as a result of listening to other autistic people’s thoughts on the subject dating back probably a further five years. I even wrote a book about the topic, which was mostly written around the time the research was published, and the idea for the book had existed since early 2020.

There is a definite and bothersome delay when it comes to the scientific community’s understanding of autism and it is a natural result, in my opinion, of their pathological model. Everything to do with autism is inherently viewed as bad, until proven otherwise. Not neutral, as you might expect, but actually bad – a deficit, a problem, a challenge to be righted.

Then, eventually, with tremendous groans and shrieks of resistance from the establishment, thoughts turn to the novel idea that maybe autistic traits have positive aspects – snd the autistic community shrug their shoulders, in unison stating, ‘no shit, Sherlock – if you’d listened to our giant collective literature (there is so much autistic writing out there, formal and informal – it’s really quite amazing) then you’d have had this as your damn baseline hypothesis’.

We’re used to not being listened to, of course. It’s just very galling when the researchers manage to light upon basics that we already take for granted, and act like it’s some incredible new take on autism. It’d be like someone excitedly proclaiming in a national newspaper, “extra extra, read all about it, enjoying hobbies is a positive thing in life!”

Laughable, isn’t it? Well that’s how it feels for the autistic community when research finally catches up to us, all because they are running to catch up from an unnecessarily regressive position, and refuse to do the simple thing of listening to us.

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