One of the things that has come to light since my Autism diagnosis is when my core values appear to me to be either under threat or are being transgressed in any way, I become very black and white in my thinking. I’ll admit, this came as a bit of a shock.
Whilst I have always been very social justice driven, I never really considered myself black and white in my thinking. In fact, I have always considered myself to be bordering on the quite flighty end of things, easily led away from the things that mattered to me most.
What I didn’t know is that this “flightiness” was a form of masking – a constant unconscious attempt to hide those behaviours that we automatically know aren’t acceptable. The social nuances inherent to most people don’t come naturally to us, so we observe and mimic. Without a true sense of self to guide me, I would adopt what other people would do.
As I aged though, my ability to maintain that masking ability began to wane, and with it my ability to mask my true feelings about things. Enter black and white thinking.
Turns out I am not flighty at all when it comes to my core values, I just used to mask them really well.
It was this break down of masking ability that led me to get a diagnosis. I was so exhausted, so burnt out, that simple day to day functioning became impossible and I was especially on high alert, ready to pounce whenever I felt my core values were threatened. This isn’t a conscious choice, it is just there. It eventually made relationships almost impossible.
My psychologist and I have been talking about ways I can still maintain my core values (we all have inherent values that we abide by and can rarely change them fundamentally) and yet survive in a world that is flawed and will inadvertently, daily, transgress them in some way. Whilst she is quick to say this isn’t about changing who I am, it is about finding ways to cope in a world that doesn’t always see things as clearly as I do. I will talk about this at length in another post.
But today, I read this blog post written by Ann who flagged some studies into what amounts to autism eugenics:
https://annsautism.blogspot.com/2020/08/making-autistic-people-comply-ethical.html
There is no question that my core values have been transgressed here, that core value being common human decency! Immediately my blood boiled. What are these people thinking? Where in this day and age is it okay to talk about modifying behaviour of a child or adult in the same vain you would a cow?
This is why GOOD science is so important. This is why advocates are so important. This is why black and white thinking is so so important.
Unfortunately Ann, understandably not wanting to give the study credence, doesn’t cite the original paper, but knowing that there is still funding available to those who would attempt to genetically modify or behaviourally program children solely based on their disabilities really angers me.
Autism is not a disease. It is a neurodivergence of the way our brains work. Collectively, we display similar traits, but individually we all sit somewhere different on the austim spectrum pie. I have heard some Autistics refer to themselves as a minority, rather than a disabled person. I kind of like that.
Globally, it is estimated that 15% of the worlds population has a disability, amounting to 1.1 billion people.
It is admittedly difficult to get any consensus on global data, but generally it is estimated that autism is prevalent in 1 out of every 60 people (this varies from country to country, so is an average of all the countries). That is 1.6% of the global population amounting to 125 million people give or take which is five times the population of Australia, over a third of the population of the USA and 1.8 times the population of the UK.
Thus of all the estimated disabled in the world, Autistics make up 11.3%.
I feel indignant at this constant push to snuff us out. I feel indignant the parents still want to cure us, like we are some disease.
Surely by now, after over a hundred years of Autism first being identified, we should have moved beyond trying to “cure” it or behaviourally modify it?
Instead, the focus must to move towards helping neurotypical people understand autism and how they react to it.
Parents, rather than trying to modifying their Autistic children’s behaviour, which research has shown to be 1) not very effective and 2) is nothing more than forced masking, like teaching a dog new tricks, they need to educate those around them on how to embrace their Autistic child and keep their child safe. That safety will enable the child to grow and develop in a way that suits them and when given that kind of chance in life, we know people start to thrive.
When Jordan was 18, he left school four months before the end of VCE. Four months! After 13 years of struggling to get him to school each day, he simply said no more. Deep inside, I wanted to push him, make him finish. But by then I knew how demolished he was by the school system and I couldn’t do it. I knew that my desire to make him finish school had nothing to do with him and everything to do with how other might people judge me and us as his parents, for not making him do it. I felt societal shame and up until shortly before this point, I had succumbed to it, trying to make Jordan adapt so I would feel less shame.
By the time VCE came along, though, I had learned that it wasn’t what people thought about me or Jordan, that mattered. It was Jordan that mattered and only him. It was his mental health and how to live in a world that demanded homogeneity and some twisted form of perfection. It did not matter what people thought of us as parents. It only mattered that Jordan knew we supported because of his autism, not in spite of it. To my shame, I had spent many years previously trying to “modify” Jordan’s behaviour in public – trying to make him less Autistic. But now, I didn’t care.
It has been four years since Jordan left school. He has struggled to find his place in the world, but we have been beside him in that struggle. We haven’t tried to make him do anything that made his anxiety worse. Has he got a tertiary education, or a job? No, no he doesn’t? Do I care what people think about that? No. Because he feels loved and safe. I am so proud of him because he wakes up every day determined not to be beaten down. He tries things all the time and makes plans for his future. That he has to take them slowly is no problem at all. We don’t have to move to the ever changing expectations of the world.
Life in this world as an Autistic is not easy. I am only now, since my own diagnosis, really getting to grips with how damn hard it is. We aren’t the ones who make it difficult. The neurotypical world does that for us. We are expected to behave in a certain way and when we don’t, the world shuns us. We get that messaging every single minute of every single day.
To fund and conduct research that would culminate in potentially eliminating us, or at the very least the essence of us, is the worst kind of atrocity. 125 million beautiful minds and souls contribute to the fabric of our world, as much as anyone else. To even imagine that someone out there feels that this would be worth sacrificing simply so we can behave in accordance with some norm or fit into some non-descript, ever changing mould is soul-wrenchingly heart breaking.
We are not a disease. We are neurodivergent and I will continue to fight for a world that not only accepts that, but embraces it. Yay for black and white thinking!
Until next time,
