This article was written by autistic advocate Kieran Rose and was originally published on autismawareness.com and his website The Autistic Advocate. It is reprinted here with his permission.
If you are the parent of an Autistic child, I’m going to introduce you to a concept that’s going to scare the pants off of you: Your child is going to grow up to be me:
I am an Autistic adult.
Some people are of the belief that Autism can be grown out, or that with the right support and interventions, Autism can be cured or lessened.
In one of my articles called Talking without words, I wrote about what would have helped me to negotiate society as a child, what lessons could I have been taught to help me help myself. This is the story of what can happen if those lessons aren’t applied, or applied in the wrong way.You may be unaware of this, but there is an incredibly high number of Autistics who have been diagnosed late, that have attempted to commit suicide in their teenage years. It’s never something that has been studied deeply, but it is something that is being investigated now, as this report called Understanding and Prevention of Suicide in Autism, shows.
I count them out. Forty-seven of them. Not enough.
I lean over and pick up the box from in front of my tiny portable TV. Lifting the flap I let the strips of pills slide out onto my palm. Replacing the box, one by one I pop the pills from their tabs on the first strip and add them to the pile. I ponder them a moment and then repeat the process with the second.
I count again. Seventy-nine. Enough?
It’ll have to be, I sigh.
I look down at the pills, jumbled and mixed. I nudge them into two lines with the tip of my finger, white uniformed Privates on parade.
This is how I tried to kill myself.
Some of us have help hiding our Autistic nature and traits, through ABA or other interventions, those of us who went undiagnosed learn to do it ourselves; it’s called Masking.
Masking is exactly what it sounds like, we put a mask on. A Neurotypical one. Those of you that have young children who are fine at school and Meltdown at home, have already witnessed it, as they are the ones who are especially good at it. Conforming at school is masking.
All day we ‘pretend’ that we are NT. We might make eye contact, a bit of small talk, we certainly don’t Stim or fidget. We contain ourselves and outwardly make it appear that we are everyday people doing everyday things.
Some of us take off the Mask when we get home, we are the ones who Meltdown when they get home from school and you can’t figure out why.
There’s a reason for that Meltdown though.
If you can, imagine a day at school when you are Autistic: Hundreds if not thousands of children, bells ringing periodically, people bumping into you, touching you, trying to listen to a teacher but your brain can’t process it quickly enough, the roar of voices, the ticking of clocks, movement everywhere. A complete assault on each of your senses for 7 hours a day without a break or a let up. Then you get home, it’s safe and calm, so you take the Mask off. Kind of like shaking a fizzy drink bottle all day, then unscrewing the lid. Fizzy drink explodes everywhere.
This analogy works, whether the Autistic is a child or an adult.
Some of us don’t take off the Mask, we come home and conform. Whether as a child or as an adult, we lock ourselves into our Masks. Our parents, our partners, our friends, none of them see the real us, the way we are underneath.
Can you imagine holding all that your head while trying to hold a conversation? Or listen to a teacher? Or purchase something from a shop?
It’s physically and mentally utterly exhausting.
I notice the music thumping before I even get there.
I walk up the path and ring the doorbell hoping nobody will hear, so I can slip away unnoticed, but of course they do.
The door swings open. Light and sound explode outwards in my face, forcing me to involuntarily take a step backwards.
I shrug off my coat and pass it to the host, remembering to give them a winning smile. I don’t know what I’m going to win with it, but it’s there anyway.
A shake of the hands, trying not to die internally as my whole body wants to seize up, run away and scream at their touch, fire lancing from my palm, slamming up my arm and setting alarm bells off in my mind.
I deposit myself firmly in a corner, clutching a drink handed to me by the host. People talk to me but I’m separate to myself now, helicopter viewing.
Watching myself mutter and mumble painfully, not even hearing what the other person is saying. Screaming at myself to get out, to just leave, to escape and the silence of the night, the darkness. To get home where it’s safe.
I’m Masking and performing.
There are those of us who went undiagnosed, we are the expert Maskers. Some of us have been doing it for so long we run it on Autopilot. We’ve compartmentalised our brains so that we’ve cut ourselves off from that part of it. Some of us have convinced ourselves that it isn’t real, that we don’t do it. But it’s always there, that nagging memorandum, we’re able to tap into it at any time and remind ourselves that we are different, we don’t fit in…
There is a very good chance your Autistic child will die early.
A study called ‘Premature Mortality in Autism Spectrum Disorder’, which was reported by the NHS in this article called ‘People with Autism are ‘Dying Younger’ warns study’, recently showed that the expected average age of death for Autistic people is 54. The reasons for this incredibly low figure? Suicide.
The reasons for this early death toll have not yet been studied, the links to depression are obvious though. It will come to no surprise to the Autistic Community though, that all in all, when the studies are in, the conclusion will be (but never clearly stated), that Autistic people are killing themselves because they can no longer pretend to be Neurotypical. The Mask slips.
I can’t go back there.
Three years spent here and to a degree I’ve enjoyed it, but now? The pressure, the contact, having to talk, surrounded by people I have no interest in, who have no interest in me…
I phoned my Boss: “I’m going home now, I can’t take this anymore, I’ll be going to the Doctors tomorrow.”
I meltdown like I have never melted down before: my brain is on fire, my body a shattered ruin.
I am 34, my wife is pregnant with our third child.
I never went back to a job again.
There is such a phrase in the Autistic Community as ‘Autistic Burnout’. If you’ve known adults both diagnosed or undiagnosed that have managed to live relatively “Normal” lives, you’ve probably witness it in them. They plod along, perhaps forging a good career in a stable job, then suddenly they’re promoted, their job changes, or they change jobs and the world falls out from under their feet. They can no longer cope. This is usually when the realisation happens that they are different, that they’ve spent their whole lives pretending. The mask slips away.
Things have flipped around in the world of Autism again in the last twenty years. We’ve gone from generations of undiagnosed people, whose childhoods were spent alone, growing up trying desperately to pretend we are something we are not. To now, a generation of diagnosed people who have gone or are undergoing therapy based on Applied Behaviour Analysis (ABA) being forced to pretend to be something we are not.
We’ve gone from generations of undiagnosed people who burnt out from masking purposely to now generations of diagnosed people who burn out from being forced to wear a mask.
Something unstudied in the research community is the medium-long term effect of ABA on Autistic people. In the Autistic community we have public and on-line support groups for people directly affected by having ABA based therapies as children. The ages of the people in these groups ranges from teenagers through to grown adults. The level of ABA they underwent ranges from mild to intensive. I’m talking thousands of people. All of them, to a person, is suffering some form of PTSD.
The reason for this? Neurotypical people and Neurodiverse people, Autistics especially, have different brains. An Autistic brain work differently and functions differently to a Neurotypical brain.
If you try to make one brain work like the other, it’s the equivalent of putting Diesel into a Petrol engine. It works for a while and then comes to a grinding and sputtering halt.
To use computing parlance, the process of ABA overwrites Autistic coding with Neurotypical coding. The Autistic coding is still there, but the Neurotypical coding is going over the top of it. It’s like putting a plaster on a cut. At some point that plaster is going to come peeling off…
The narrative created around ABA is that it works, it has impressive results. It does. That cannot be denied. It impressively, for a period of time, makes a dog act like a cat. Then, at some point, it even more impressively stops working, and the dog spends the rest of its life confused and angry as to why it was ever made to act like a cat in the first place.
Obviously there are exceptions to this rule, like the gentleman i spoke to about exactly this the other day, who insisted his son was fine and perfectly “Normal” after intensive ABA. He’d gone to school and was now proudly serving in the US Army.
My first question was: If he is now fine, why are you have you just joined a support group for Autistic people and their families?
Answer: “My son is suffering from depression and is showing signs of regressing”
He’s obviously neither fine or “Normal” then…
I’m 38 years old and I didn’t grow out of Autism
Somewhere along the way growing up, I realised that i had to hide the real me away, because being different was dangerous, not fitting in drew negative attention to myself. Being me was BAD.
Children put through ABA therapies now, are being taught that to behave in a Neurotypical way is GOOD. They get rewarded for behaving like a Neurotypical. But, at some point the ABA wears off, or literally falls off in some cases, then the person is left with the knowledge, ingrained in them, usually from an early age, that Autistic behaviour is BAD. Except they can no longer use their Neurotypical programming, all they have is BAD.
The constant message Autistic people are given is: being Autistic is BAD.
Is it any wonder we kill ourselves?
This is why Autistic adults cry out to parents of Autistic children, this is why we plead and beg you to listen to us, please listen to us.
We don’t want you to be responsible for putting your children through something that will, in all likelihood contribute significantly to them suffering and dying.
We don’t want your children to grow up and hate you for what you put them through.
We want you to work with us, use our experiences and help us change the world for Autistic people. Help give us a voice and platform. Help us to stop being victims of love. Help us to stop dying because of a fear of difference.
I am an Autistic Adult, your child will become me.