By Kieran Rose, Founder of The Autistic Cooperative
The quote on the attached image is a real one. Words spoken by a young Autistic to their Mother.
This person had been crippled by spending years Masking, fighting to fit in and trying to be ‘normal’ and tipping themselves over into Burnout so extreme, that at the age of 19 the only way they could see out, was out…
This young person was not ‘suffering from Autism’ as the mainstream narrative would have you think.
They were suffering from invalidation.
An Autistic invalidation.
19 years of being bullied, of being excluded, of trying desperately to fit in with your peers, with your environment and for what? To be so physically and mentally exhausted by it that you actually feel like you can no longer live.
From a certain perspective, this young person is lucky. That or just more resilient. It happened to me at 14 as I described in ‘How to Hide your Autism‘ and ‘An Autistic Education‘. Mid teens seems to be an optimum age for Autistic young people to want to step out of life. Please bear in mind I use ‘lucky’ flippantly. He wasn’t lucky at all. If your life has been driven to that point, lucky should not be in anyone’s vocabulary to describe it.
What is it that’s driving large numbers of Autistic children and young people to self-harm, to become so anxious and wound up that they refuse to go to school, that they withdraw to their rooms?
What is it that forces many of them to go through this alone without seeking help from parents; and that, if they survive through this, sets them up for a life time of successive failures and periods of repeating this over and over again.
What the young person is referring to in the quote above is Autistic Burnout. What causes Autistic Burnout, aside from the stresses of actually living, is Autistic Masking.
But what causes the Masking?
#TakeTheMaskOff has been a six week campaign aimed at educating the world about Masking. You can read about it in #TakeTheMaskOff, watch the live launch video:
Or you can follow the hashtag on Fcaebook, Twitter, Instagram and Youtube.
During the campaign, I and many other Autistic people have talked about why Autistic people Mask from an Autistic perspective. I’ve used words and phrases such as self-protection, hiding in plain sight, fitting in, normalising, camouflaging and passing…
What I haven’t really touched on yet, and this post, a summary of the previous six weeks, is the perfect opportunity to do so, is why Autistic people Mask from a Non-Autistic perspective.
The answer to that is the word ‘Invalidation’.
Before I go any further into what I mean by that exactly, I want you to read the heartbreaking words of Autism Amazon.
Autism Amazon is a Late Diagnosed Autistic person who wanted to share her story. It’s broken into two pieces – the second part will appear in a later article, but I wanted to include it as part of this one, as not only does it highlight well the impact that Masking was having on her life unbeknownst to her, but also the fact that it was shielding her from being recognised and diagnosed.
It also leads perfectly into what I want to talk about later.
“I almost died from Autistic Burnout…
Can a person overwork their brain to the point where their entire body is threatened with collapse?
Turns out, you can!
I wish I didn’t know this. I know a lot it sounds weird, but since my diagnosis only two years ago, I decided I have a License to Weird.
I’m just telling you what happened, okay..?
I had a Perfect Storm.
While still dealing with a sudden, hellish, menopause caused by medical incompetence, I got a promotion that came with a lot of public contact, with random & sudden responsibilities.
My body knew: the night before I started this new job, with no clear directives and no support, I had my worst panic attack.
I had always attributed these to low blood sugar, or my own perfectionism when I have a challenge. Now I know: they are shutdowns.
When did I start masking?
Probably as soon as I was born, since I wasn’t in a family with a carefree nature and a culture with a lot of acceptance for eccentricity.
I don’t know when I am doing it and I am still trying to figure it out, because it seems natural; and yet I long for solitude when I do it too much.
By high school, I actually could make more than one friend at a time by falling in with the art crowd, who tolerated eccentricity and valued creativity. Now I know I had been masking my whole life, and had a “lesser capacity” for stress which I attributed to my chaotic adolescence. Certainly, getting out on my own improved matters, stress-wise, and at the time I thought that was the whole explanation.
One college semester, when I took a full course load, a full time job, and kept my A average, I would “blank.” I would have short-term memory problems that left me reeling, like finding bills stuffed in a bookcase and realizing I hadn’t paid them.
I sensed how close to the edge I was getting, but I was about to graduate, I could not make the effort to slow down.
This meant I couldn’t consider a real “career,” with the crushing hours required. Thankfully, I was good at computers. This was the very beginning of me and my Mask infiltrating the work world, I could learn on the fly.
My own competence tripped me up though.
I was so good at people-handling and not needing directions that when a remote office needed a “Jill of all trades” type to run it, I was given the promotion.
Sometimes it was fine.
Sometimes, the meet and greet part was wearing, but worst of all were the floods of strangers that periodically flooded through the place in need of guidance and support.
I started being unable to sleep and struggled with incredible, crushing, fatigue. I had periods of can’t-move-can’t-think and all kinds of bizarre sensations throughout my body, heightened anxiety, and memory issues.
Getting hormones for the menopause issues helped for a while… then stopped.
I got a neuropsychiatric medication for an attack of shingles brought on by stress, and that helped with the anxiety… then stopped.
My GP, the only medical Hero in this story, ran every test he could think of, and I was utterly “normal.”
I drove myself to keep doing my job, managing tough tasks in the morning, simple ones in the afternoons, all the while scrambling to keep a full time job, care for a chronically ill partner, and cope with the “life-threatening stress” my doctor diagnosed me with, without knowing the cause.
I was told to “relax.”
So I went out to fun things on the weekend and met friends in cafes, when really, looking back, I should have been in a sensory deprivation tank.
I started putting my symptoms into search engines.
Salt craving, wide temperature fluctuations during the day including fevers, total lack of appetite and lots of nausea; slow healing, anxiety, terrible sleep, dizzy on standing; 90% of the whole list for Addison’s Disease.
My doctor checked my adrenal hormones: I had plenty.
Still, he referred me to a big shot Endocrinologist.
I had to wait three months for a disastrous appointment, where he informed me that “If I had Addison’s disease, I’d be really sick.”
Then he wrote me prescriptions for Ambien (which makes you wander around like a zombie, eat cigarettes, and sleep with strangers) for my sleep problems, Prozac (I had every reason to be worried) for my anxiety, and Lipitor (when he hadn’t even done a cholesterol test) because I was middle-aged, I suppose.
All of these had side effects I couldn’t live with on top of my other issues, and I never filled those prescriptions. Each of them would have made me worse, and all of them together would have really done me in.
My attitude was, “I just spent tell minutes telling you about the hell I am going through, living on cold cuts and ice cream, because I can keep them down, working so hard to NOT DIE, and you barely look at my meticulously crafted temperature chart?”
I demanded a fancy Adrenal hormone test. Which, I found out later, he did wrong. But for me, it was very informative.
I had lots of cortisol. But it was at all the wrong times.
His response was, “See? You don’t have an adrenal disease.” Because in his tiny mind, there was only too much or too little and it being all over the map meant nothing.
Then, a work crisis caused by an absolutely horrible Manager, plunged me into incredible stress.
I navigated it, but I was so stressed out that I had giant Hives all over my body, which then turned into eczema (you don’t want your doctor saying “wow”); and by now I was in danger of further Autoimmune issues.
An online friend mentioned how an explanation I gave, sounded like the children she taught, who were autistic.
But I’d been around computers for so long I figured it was my programming experience talking. It wasn’t until I read ‘The Journal of Best Practices‘, David Fincher, that I realized my Sensory Things were exactly how he explained his Sensory Things.
I took an online test and just looking at the questions, I knew before my score came up.
I believe eventually this saved my health, if not my life.
At first it only added stress, as I had to make dozens of ridiculous phone calls because my insurance company confirmed there was no one in the network to diagnose me. I had to take a whole three days to travel to someone out of the network, who gave an all day assessment and was very helpful, probably the most Autism help I have yet gotten.
Then my insurance company refused to pay.
Because even though it was a “positive diagnosis,” they said “nothing could be done.”
Even things shown to be helpful, like my weighted blanket and mini-trampoline, they won’t pay for, even though my GP wrote a prescription. I am now allergic to corporate customer service, phone calls, and people so incompetent I have to tell them the steps to do something; and people who pretend they can do something, but in the end, the corporation does not allow them to.
So now, when a quarter of my body is covered with ominous warnings, they will pay: for a ton of steroids to be pumped into me…
I got through the tear-my-skin-off-from-the-itching crisis, and sought something better. This treatment — their only option — would eventually make matters worse and worse until my immune system gave up entirely.
I had to figure this out myself.
My Autism diagnosis changed my life.
And then I had to change my life.
I almost died from not being able to #TakeTheMaskOff.
I didn’t even know I was wearing one.”
Autism Amazon didn’t know she was wearing a Mask because she was not given the opportunity to find out that she was.
Her whole life up until she was diagnosed was invalidated.
There is story, after story, after story, of people being turned away from diagnosis by Doctors, whose understanding of Autism seemed to stop being added to, shortly after the release of Rain Man.
There is story, after story, after story of children taking years to get a diagnosis (if they get one at all) by diagnosticians whose knowledge of Autism is reliant on the DSMs and ICDs of this world; and whom have no wider experience upon which to base their decision.
There is story, after story, after story, of Autistic people young and old, who have Burnout repeatedly dismissed by medical professionals who do not understand what it is, have no clue and seem to think that the answer to everything is Depression and anti-Depressants.
There is story, after story, after story, of people who have been diagnosed with anything and everything except Autism (Bi-polar and borderline personality disorder diagnoses are really common in Autistic women BEFORE Autism is identified), because the Diagnosticians and medical professionals cannot join dots together and look at the bigger picture (Oh look, something Autistic people are always being accused of being incapable of doing), even when the patient puts the evidence in front of them, is jumping up and down and pointing at it.
There is story, after story, after story of Autistic children and young people put into environments and situations that hurt them and that they spend much of the time expected to conform and ‘behave’, like school and then whom are blamed for ‘not behaving’ and ‘not conforming’…
What does all this add up to?
Society invalidates the Autistic state of being, daily, hourly, minute by minute – every time one of those scenarios, plus a million more occur.
Daily on social media I see parents who invalidate Autistic Adults, because as much as they comprehend they are talking to an Autistic person, they aren’t really talking to an Autistic person; because the societal narrative of Autism, the negative narrative, has framed Autism in a certain way – and that way is not people who can type words into a keyboard coherently…
It’s not the parent’s fault, they’ve been spoon-fed misinformation, from even before they had an Autistic child, but that doesn’t make the invalidation any less so.
Daily I see people posting things in Autism support groups like “Don’t be offended but…” and then they post something blatantly offensive about Autistic people, that humiliates and dehumanises us, that invalidates us and then the poster is horrified that they get a negative reaction.
Every time a shooting occurs in the United States, what’s the first thing the Media say? “He was a loner, he was probably on the Autistic spectrum…” I saw one recently where they brought an expert in to talk about how Autistic people are prone to violence – she was an expert on Tribal magic in South American tribes… I kid you not… But she was a psychiatrist and spoke with Authority, so what does it matter? Am I invalidated by that? You bet!
I sit in GP receptions and see posters about Autism calling it a Disorder. Yup, I’m broken and damaged and disordered – that’s not invalidating at all…
In pretty much every country in the world Autism is legally deemed a Mental Health condition. Except it isn’t a mental health condition at all. I’m not disparaging mental health conditions here, but Autism isn’t one. Being deemed one means that in the UK I could be detained under the Mental Health Act, for being Autistic… So blatant falsehood. Not too invalidating.
Daily I see and hear Autistic people berating themselves, hating themselves – even denying that they hate themselves, that it’s just Autism they hate – without even being able to recognise that Autism defines them as much as being human does, as being black or white, being male or female or something else, being straight or gay – that whether you choose to define yourself as any of those things or not, it’s irrelevant, because you still are those things and society defines you and addresses you accordingly because of it.
The whole narrative of Autism is negative and that invalidates us.
This is the real reason we Mask. We are invalidated. We are made to think of ourselves as something that is less and we are made to think it by YOU.
But you know what?
We ARE disabled. Not because there is something wrong with us, but because we live in a world that chooses to treat us like we are broken and not adapt itself to accept us in it.
How would you feel if that was you?
If every day, all you hear and see is people talking about how you are damaged, or equally not damaged just enough, or damaged too much – because that’s the other thing, at any given time an Autistic person is Autistic, not good enough at being Autistic or too good at being Autistic, depending on who is talking to you.
How would that make you feel?
Perhaps, you would feel… Maybe a little… Just a smidgen… invalidated..?
Now imagine that every day for your whole life?
This brings me back full circle, remember at the beginning when I said that we don’t ‘suffer with Autism’? There’ll be one person reading that and saying “Yes, you do!”
Everything I’ve written here is an example of how the world makes us feel, not how Autism makes us feel.
Too many of us have similar, depressing stories. I used to think that it was because I was missed like so many others, but the sad truth is that kids who are diagnosed are experiencing the same things as we, the Late Diagnosed did.
Why has nothing changed? Well, because nothing has changed. Parents, teachers, health professionals, service providers, plus everyone else, still have a complete lack of understanding of Autism. The world is still geared towards non-Autistic people.
So people like Autism Amazon go undiagnosed and people like the young man at the start feel like they have nowhere left to turn.
I saw someone write the other day that no Autistic person can deign to speak about Autism for Autistic people, because it is a uniquely, personal experience.
Well, what he said was half true. Autism is a uniquely personal experience, because first and foremost we’re Human Beings – each and every one of us different to the rest of the Human Race. We have personalities. We have life experiences that shape us and our views. Just like you do…
It’s also partly true because we each have differing co-occurring conditions, that we each have to figure out and that puts a unique slant on our perspective.
He was of course non-Autistic.
I always find it amazing how Autistic people aren’t allowed to speak for Autistic people, but non-Autistic people never seem to have to justify their right to speak on our behalf, even when we don’t want them to…
He had a huge flaw in his view – because he is not Autistic and therefore, because he has not had the opportunity to share his experiences with other Autistic people, what he failed to realise (and understand, even when it was explained to him) is that Autistic people have a shared, collective experience, where we all, for the most part, overlap with each other.
Sharing our experiences with each other helps us to understand ourselves much better and also to understand other’s perspectives.
We empathise with each other and gain a rounder worldview, a better understanding of ourselves and each other that makes us more qualified to speak about the Autistic perspective (singular and plural), than anyone who is not Autistic, regardless of how many books we may have read on the subject or how many external Autistic behaviours we may have observed.
None of this is very hard to understand, so I genuinely have a difficult time comprehending why non-Autistic people find this concept so difficult to grasp.
The only conclusion I keep coming to is that they don’t like being told they are wrong. They are too narrow minded and binary in thought; and they really, really, really seem to lack empathy for our situation.
So all they need is to avoid eye contact and they can all be diagnosed Autistic.
You mean the diagnostic criteria isn’t actually Autism criteria at all, but one vast collective projection…?
Meanwhile for the Autism Amazon’s of the world, for me, for any Autistic person reading this, diagnosed or not, nothing changes.
The world keeps turning and every now and then, a part of it bleats something positive about Autism and the rest of the world floods in to wash it away with negativity.
So we carry on Masking
We carry on hiding our true nature and our true selves.
We continue to shout into the darkness.
We continue to be ignored.
We continue to be invalidated.
But I don’t want to end this on a negative note.
Firstly I want to say that there is a second part to Autism Amazon’s story and I’ll be sharing it soon (As fast as she can write it), a second half that talks about recovery from Burnout and how she changed her life for herself and for the better.
Secondly I want to say a little about #TakeTheMaskOff as this week is all about summing up what we have learnt.
This will probably be my last Article for the campaign.
These last six weeks have been exhausting for me personally.
I’ve been applauded and I’ve been criticised.
I’ve talked and talked and talked and my fingers have pounded my keyboard.
I’ve made videos, been interviewed on camera and in print.
I know I’m going to collapse in a heap in five days time when it’s officially over and enter yet another phase of Burnout.
But it’s all been worth it. So worth it.
For every negative comment, there have been a thousand positive ones. For every non-constructive criticism there has been a thousand constructive criticisms.
I’ve spoken over and over about the fact that #TakeTheMaskOff is not a directive, it’s not an instruction. In fact I’d encourage you not to do it, at least not fully and certainly not until you know for certain that you are safe doing so.
What it has been is one of the most touching experiences of my life.
You could almost say it’s been validating…
When Hannah and I conceived of the idea, we had no idea that it was going to be embraced as largely and widely as it has, that it’s reach was going to span the planet.
And for the most part, people have seen it for what it was meant to be: education.
A platform, an opportunity for Autistic people who don’t understand themselves very well to learn about themselves.
An opportunity for Parents to gain insight into their children like never before.
An opportunity for researchers and clinicians and diagnosticians and anyone who daily comes into contact with Autistic people to better understand who they are dealing with.
There is so much material about Masking online now, such an abundance of resources focused not only on Masking but specific aspects and facets. Much of this did not exist before July of 2018; and I am so intensely proud and thankful that so many Autistic people have stepped up to the plate, seen the campaign for what it was always meant to be, have shared like never before and have collectively taken the mask off of Masking (Do you get it now?)
I want there to be a #TakeTheMaskOff II of some sort, I really do and I hope that more people will feel empowered enough to take part and join in. I hope that one day we reach a saturation point and with true knowledge and with lived experience we outweigh the utter crap that is written about us.
You will never, ever find a better source of information about Autism than from Autistic people.
So how about you stop invalidating us.
Because if you lift us up, there’s no telling where we might take you.
Much respect and thanks to everyone who took part.
5th September, 2018
More from The Autistic Advocate on #TakeTheMaskOff:
The launch article: #TakeTheMaskOff
The Live Launch with Hannah Molesworth, Agony Autie and Neurodivergent Rebel
The Autistic Advocate interviews Spectrum Women’s Kate Ross on Masking and Burnout: