Image by Belle Maluf (edited)
“This is what Autistica is into,” Cos Michael commented on Twitter in response to a tweet by Damian Milton about the AIMS-2 trials. “They just did a great conference and have funded fantastic research that #autistic people actually want. But now they’ve returned to old alliances, with Autism Speaks, commercial gene editing and drugs companies. A tragedy for autistic people, I believe.”
I’m fine with research into gene editing. But they’re not focusing on autistic priorities. If they were, they’d prioritise things like genes associated with painful degenerative connective tissue disorders which affect so many autistics and their families.
Imagine some of that money was used to turn information like this into treatment for autistic people whose pain is ignored just because they have a psychiatric diagnosis.
Imagine some of that money was used to train doctors in these matters:
Imagine they used the money to create awareness campaigns of what we already know on a molecular and cell biology level about sensory overload — awareness campaigns for doctors. Just imagine how many hundreds of thousands of autistic people could suffer less if their doctors knew of the role of electrolyte imbalances in sensory overstimulation.
Just imagine some of those funds were used for that. It wouldn’t sell drugs, but it would help autistic people.
Imagine doctors were trained in the role of calcium dysbiosis in many of the health conditions affecting autistic people.
Imagine they learned how to prescribe individualised treatment plans based on existing knowledge about molecular pathways in respect of specific alleles.
Imagine doctors knew to avoid prescribing escitalopram oxalate to some autistic people. Imagine that.
Imagine doctors understood that autism is not a linear spectrum, but an umbrella term for a cluster of neurodevelopmental endophenotypes.
Imagine they understood the implications of that knowledge on their decisions of what treatments to prescribe to different autistic people.
Imagine the average GP knew to test for common deficiencies, overloads and intolerances when encountering a patient with ‘ADHD’ symptoms — Vitamin D, phenol intolerance, choline deficiency and all the other things that science has already taught us.
Imagine doctors knew!
But instead, AIMS-2 is going to spend vast sums of money developing new drugs to be prescribed by doctors who have a scant knowledge of what they are dealing with. Doctors who think autism is a behavioural disorder with red flags and ‘levels’.
Do we want even more novel drugs with effects like risperidone prescribed by doctors who can’t even recognise what hypomagnesaemia or hypokalaemia looks like in an autistic patient? Really? Shouldn’t we rather teach everyone what we already know about autistic people’s health?
By the way, I attended a webinar this evening facilitated by Spectrum. It was on DNA methylation. I could not detect any interest in entertaining autistic people’s concerns. It was all about changing genes, and doing early behavioural intervention to change autistic behaviour. Managing pain, assisting with movement issues, treating sensory overload? Not important to them. Autistic traits that we value? Not interesting to them. Autism is ‘risk’ and ‘deficits’ to them. They have one job: wipe out autism.
Our thinking doesn’t count. They hate what we are. Maybe they felt they could speak so callously because they didn’t expect any autistic people would listen in. Lots of talk about parent reports, and capturing placenta; nothing about self-reports and what we say helps us.
They don’t want to optimise autism. They want to end it.
I think about a boy I know who couldn’t communicate in any intelligible way until he was 14. Not even pictures. The first thing he said when he could finally use a form of AAC which allows him to communicate in words was, “Autism is my talent.” Turns out he can do amazing maths.
But we’re not allowed to say, “Autism is my talent.” We’re not allowed to speak if we can use words, because then we’re not autistic enough. For 14 years, they’ll speak for you, saying you’d want autism destroyed. But as soon as you can use words, your wants won’t count anymore.
There are things he does want. He has told us what they are. He cried bitterly when communicating some of those things. But the people who want to destroy autism are not going to listen to any of this. It’s all second prize to them.
They have a goal, and it’s not what we want.