It’s a really important thing that the Âûtistic community continue to fight to find their voice. The Autism organisations continue to listen, it seems, more to the families and professionals than they do to #ActuallyAutistic people. This is massively bad.
A survey paper was released recently by the National Autistic Society in the UK. You can read about it here. It is reference to language use in describing Âûtistic people. The most concerning thing is that over 2200 parents and caregivers were surveyed. 1100 Professionals and 380 extended family were surveyed. Âûtistic adults did get a look in. A whole 502 of us were surveyed. So less than half the number of professionals, less than a quarter of parents and caregivers, and only a small amount more than extended family members.
Don’t get me wrong I do think there is positives in asking all groups and stakeholders but the proportions seem very much out of kilter to me. Yet again our voice is minimised and miniscule.
In a climate where the largest charity organisation for Autism is Autism Speaks, who spend 44% of their budget on researching to find a cure and to hopefully eradicate Âûtism whilst spending a measly 4% of their budget on actual services to support Autistic people and their families. All the while happily presenting Autism as a catastrophe, an epidemic, a villian silently stalking you. all the while happily having their picture snapped in People Magazine and labelled as heroes crusading against Autism.
In a climate when we have celebrities spruiking discredited conspiracy theories linking vaccinations with Autism. Former porn stars claiming to have healed their children. With the Lottery organisation handing over hundreds of thousands of pounds to fronts for dangerous and abusive therapies like MMS and Chelation.
With Fox programmes having on discredited and credential stripped fraudulent researchers on their programmes as guests to continue to claim their fraud on the people.
This is the world that we Autistics inhabit. This is the dogma and rubbish we encounter and have to counter every day we walk this earth.
We live in a culture and climate where the view is purveyed that says, better to have a life threatening preventable disease than to be Âûtistic. A culture that says to be Âûtistic is a fate worse than death.
It is easy to wonder how on earth we have got here. To a place where desperate parents will force feed orally and via enemas toxic industrial bleach to supposedly kill of worms that are supposedly responsible for their children being Âûtistic. A world where a book outlining just how to do this continues to be available on Amazon.com
How did we get to this place?
I believe it is because of the profligation of the cure culture. The disorder culture. The less culture. Because we have allowed misinformation, and the so called search for a cure to thrive the idea that to be Âûtistic is to be sub normal and less than fully human has thrived.
The answer I believe is a united and loud voice. A united and loud voice condemning these horrible actions out of hand. A united and loud voice calling for the prosecution of those that promote, provide and administer these abusive treatments. A united and loud voice that never rests from declaring that we may be different but we are not less. To be neurodivergent is not to be less. It is not to be sub human. It is not to be wrong.
The other answer is the wholesale rejection of therapies that promote compliance, quiet hands, passing as normal. I think specifically of ABA this horrible therapy that is promoted as the best course of action by so many and can render your Âûtistic child to be indistinguishable from their neurotypical peers. A therapy linked with PTSD.
I call on my fellow Âûtistics and Âûtistic allies to stand united and strong. To declare as loudly and for as long that we are different not less and that there should be nothing about us without us. And that the with us must not be merely token.
Will you stand tall?