…from the previous post.
That incident had just happened a day or so earlier, only it was colleagues, not a GP who had taken the stance. From my perspective, the group turned in an instant from one where I had felt an accepted member to one where I was firmly on the outside.
It’s unlikely any non-autistic considers for a minute the constant self-questioning that for many of us goes along with the diagnosis. There’s certainly enough people out there willing to jump on the ‘autism is just bad behaviour’ bandwagon, and having spent pretty much all of my life in terror of being seen as attention-seeking, this is just fuel to those fears.
Telling me that someone ‘cured’ their child of autism, and then shouting down my attempts at pointing out that autism is neurodevelopmental, and that there has never (despite the sums of money thrown at ‘cure’ by Autism Speaks *spit*) been any evidence that diet has an effect on the condition. All there is, is confirmation bias* plus neurotypical pressure on the child to conceal autistic behaviours.
And yet when bad stuff like this happens, it is as if a curtain is yanked away, putting my autism on full display. I cannot make eye contact at all. My need to stim, and stim to the point of pain, become overwhelming. I struggle to understand, let alone respond to conversation. The lights, sounds and smells of the world rush at me with the force of a train.
In that moment I know exactly what I am. It demonstrates how tight my self control usually is, and how much effort it takes, as I struggle to drag the shreds of it back into place, to get through every day as ‘normal’.
I am never so autistic as when I’m distressed. I suspect that’s true for many, if not most of us. And I resent that the people who doubt and deride my diagnosis are so often the ones that cause this. it’s hard enough dealing with the loss of control, the uptick in shakes, in stimming, without the rage at knowing that someone has done this to me.
I have spent all my life looking for people I can trust. I thought it would get easier, but every time this happens it reminds me how for the vast majority, their prejudices about autism take precedence over the experience and knowledge of someone who is autistic. It confirms again that I will never be counted as a full member of society because I cannot fit the template that defines normal. And though this piece is all about me, I know it is repeating again and again, a million times a day worldwide, to people who have done nothing more than try to be themselves.
And that’s the most depressing thought of all.
* Two studies demonstrate this with regard to parenting; one where parents who claimed they treated male and female babies the same, and then were conclusively demonstrated to be changing their behaviour depending on whether a child was identified to them as male or female, and not responding to the behaviour of the actual child. And secondly, a group of parents convinced their children were hyperactive after consuming food colourants, if blinded to whether the child had or hadn’t had colourants, couldn’t tell any difference in their behaviour, and if told the children had had colourants (they had not), immediately labelled their behaviour as hyperactive.
The problem with parenting and behaviour is that once you add a ‘need to believe’ in a certain type of behaviour, or improvement of behaviour, no matter what the reason, the vast majority of parents see what they want to see. They might not like that fact, but it is undeniably true.