Making friends whilst hunting monsters
By Quinn Dexter (Autistamatic)
When someone in the autistic community meets a parent whose child has just received their autism diagnosis, it’s a critical point. You don’t have to be autistic to have the best interests of autists at heart. Being autistic doesn’t guarantee it either.
There are scary people are out there who send chills down the spines of all who strive for autistic equality. We need to know our potential friends and allies from the monsters.
The monsters are all over the internet and the proliferation of ABA funding demonstrates that some have powerful roars influencing government policy. Some nest at the heart of certain autism charities and foundations, making the struggle for the fair treatment of autistic people ever more urgent.
The voices of thousands of advocates plus millions of autistic people and our allies are united against these purveyors of falsehood, the snake-oil peddlers and the glory seekers. We rightly expose the monsters’ use of restrictive diets and toxic chemicals to supposedly cure their children of the incurable.
Countless conversations and media go into detail about the perils of ABA hoping to limit the damage caused and help parents find a better way to understand autism. We each spend hours every week, every day, trying to shut them down whilst putting out a positive message that autism is nothing to be scared of.
It’s a mountainous climb at times. It can feel like for every one we shut down, another two pop up. Some of us fall by the wayside – exhausted and emotionally drained by endless onslaught, yet we almost always drag ourselves back into the fray to fight another day.
We have too much at stake to give up, whether it be our own lives, that of the people we care for, or from a profound sense of love and duty to all the autists of the world. Slowly, but surely, we make progress, but the end is far from in sight yet…
As Monster Hunters we seek out those who abuse their autistic children and those of adult autistics, too. Like modern day Van Helsings, we delve deep into the underbelly of the internet, rooting out vampires leeching off their children for notoriety, for sympathy, or profit– yet think themselves heroes.
“Look at my Johnny, a super-high-functioning Asperger’s genius. He’s got a part-time job in a fish packing factory and a girl told him he was sweet the other day. Maybe they’ll get married? What a great parent I am for making his life such a success. It’s been so hard to get him this far. I’m an autism warrior!” they cry, whilst other monsters fawn over them in a masturbatory huddle of self congratulation.
It’s absolutely right that we challenge these people. Not only do they harm their autistic progeny, but they harm our entire community. Johnny might have missed out on the career his “genius” may have predisposed him to thanks to his parent’s meddling.
Their continued depiction of autism as nothing but parental tragedy and an adversary to be fought frustrates every effort we autistic people and our friends undertake to bring about the acceptance and equality so vital to our human dignity.
What creates an Autism Monster though?
Is it fear? Parents may be fearful that their child will be denied opportunities in life so they seek to remove the factor they see as preventing their progress – their autism. They want it cured or mitigated. They seek the quick-fix, the long fix, the temporary or permanent fix – anything that will give their little Johnny a better chance at the life they want for him.
We make ourselves available to them as autistic adults with the combined experience of ourselves and the many others who’ve learned from the mistakes our own families have made. Trying to offer them a better way. We could steer them away from the false promises and the tragedy narrative.
There is hope if they learn from what we know. If they collaborate with us they may avoid hurting Johnny. Working with us to support his needs instead of struggling to change him may allow him to grow up to live the life they want to give him. We offer to pass on what we have learned through trial and painful error, how to be happier and make the best of our lives, often in spite of the “help” our own families, schools and doctors thought they were offering.
Why do some of them throw it back in our faces?
Why do they attack and undermine us? What do they hope to achieve by questioning our diagnoses, doxxing us, making false complaints about our websites or media and issuing aggressive yet bogus legal threats?
The monster’s fear comes from a darker place. Those who seek to undermine the autistic advocates, activists and our allies are bigots, plain and simple. Their fear of the different motivates them more than their hope for Johnny to have a better life.
They would rather he was a beer-guzzling, game-watching, part-time fish packer with superficial friends and an unhappy wife, than an academic with maybe one or two friends and may take years to click with someone well enough to consider marriage. They want what they consider “normal,” and any deviation from the path they followed is to be resisted at all costs.
As bigots do, they build their lairs in cavernous echo chambers, salivating and chittering. Patting each other on the back for every intervention that prevents Johnny from expressing his differences. It’s no coincidence that many of these parents can also be found expressing other intolerant views: views about race, religion, sexuality, gender – in fact, anything that deviates from their narrow view of right and wrong, good or bad.
To them the phrase “successful autistic adult” is completely alien, a contradiction, because to be autistic is itself a failure in their eyes. There is no chance of accepting they might be holding their “super-high-functioning genius” back. Even less that he could actually just be an average kid with social and sensory difficulties and the “high functioning” label they fixated upon doesn’t translate to “genius.”
They are only one kind of monster though. We’ve not even yet mentioned those who cater to the catastrophe fetishists and the video voyeurs. Nor those who name and shame, the anti-vaxxers, the stool-excavators, and others.
We have no way of reaching the monsters. No clever words, no evidence, no statistics or scientific papers can ever overcome their fundamental revulsion at our differences. They are a lost cause to us. We can only work to avoid adding to their numbers.
In 1000 words I have described the people we are united in fighting and you may well ask why? Surely those of us who are immersed in the struggle for autistic equality and support know exactly who our adversaries are? We can spot them a mile off.
Or can we?
I’m not alone in meeting parents who were scared witless when their child was diagnosed with autism. They knew nothing about autism before the diagnosis, and everything they have been told has terrified them. Free of preconceptions but full of doubt, they know there’s no cure – but they want their Johnny to have the best opportunities in life.
When they come online to seek clarity, parents will speak the language of the doctors and the autism brochures they were given. They’ll say “Asperger’s Syndrome” but be shouted down by someone pointing out the changes to the DSM and Hans Asperger’s alleged unsavoury past.
Instead they try “Autistic Spectrum Disorder” and someone else angrily informs them it’s not a disorder, it’s a condition. Maybe they tell them they shouldn’t call autism a disability at all. Asking for advice about the ABA that the welcome packet recommends is met with a wall of resistance– not only resistance to ABA itself, but to the charity they thought was helping them. ￼
They came online having been force-fed misinformation and unhelpful jargon. They had open minds, ready to learn from those of us who’ve been through it all. Their fingers were burned because they said the wrong things to the wrong people though.
If we meet them with criticism and derision, is it any wonder that many parents have withdrawn from the online autistic community? Is it surprising they’ve retreated from engaging with autistic adults? Is it unexpected that when they meet one of us who seems kind and tolerant, they think we are an exception to the rule?
Not everything that looks like a monster, IS a monster. We could do with reminding ourselves of that sometimes.
The story continues…
The video below expands on this topic and looks at how we can improve first contact. There’s a look into why it’s understandable for autistic people to sometimes make mistakes when we meet parents new to autism. More on the difficulties parents have grasping the subject of autism and meeting the expectations of autistic culture is also explored.
Please take the time to watch and share with your autistic friends and with parents new to autism. Perhaps those who are not monsters but are wary of autistic adults, too. Hopefully both sides can learn to understand each other a little better and get off to a more productive start…
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