Ok so, I’ve been reading around. I noticed that there is a new wave of ‘autistic people are their own experts’. This got me thinking……..
I come from a long line of autistic people, who didn’t know they were autistic. They struggled, some more than others. Some of them just came across as difficult, but were tolerated because society wasn’t as demanding as it is now. But, my point is, they didn’t know they were autistic. They never knew the reasons for their difficulties ( I can still see this with undiagnosed adults) and because they didn’t know, they reasoned it off with mental health issues or that they were just ‘gifted’ and so daily life was beneath them.
But, here’s the thing, it wasn’t autistic people who identified their struggles or broke down their issues. It wasn’t autistic people who began to observe the developmental differences between themselves and others. So my question is, how can autistic people call themselves the experts, when the information they use is not that of autistic people in the sense that their identity itself was recognised by non autistics.
Now, I’m not saying that non autistic people are the ones to judge the autistic experience, they most certainly are not! I’m not saying that autistic people are not the best ones to go to, to understand, in context, the daily struggles and strategies that help. But, what I see is a very clear divide. Non autistic people can never understand the autistic experience, just the same as if a mother looses her child then the only people who would truly understand her would be other mothers who have lost a child.
However, there are many autistic people I’ve met that don’t even understand their own autistic experience (diagnosed or not) and are not empathetic or helpful to other autistic people. Yet I have met non autistic people, who, couldn’t relate, but were more open and willing to do anything to support someone or just be there for them. They couldn’t understand, they can’t, their brain translates everything we say into their own neuro-experience.
It seems that both are lost in translation and the answers lie in both experiences. It seems that autism is on its own progression. But we are far from merging the gap of expertise and balance. Support and diagnostic criteria are still based on what is seen, and not what is experienced, yet our autistic experience would never have been discovered if this wasn’t the case.
Just some food for thought…..