When autists attempt to blend in it is to avoid suffering the consequences of non-conformance – and not to gain or maintain social status.
Results confirm previously reported high rates of suicidality in ASC, and demonstrate that ASC diagnosis, and self-reported autistic traits in the general population are independent risk markers for suicidality. This suggests there are unique factors associated with autism and autistic traits that increase risk of suicidality. Camouflaging and unmet support needs appear to be risk markers for suicidality unique to ASC. Non-suicidal self-injury, employment, and mental health problems appear to be risk markers shared with the general population that are significantly more prevalent in the autistic community. Implications for understanding and prevention of suicide in ASC are discussed.
The thought hits me out of nowhere. I gasp for breath, tears suddenly right there, pressing behind my eyes, and I no longer know what I’m doing here. I don’t know why I ever thought I could be here. I’m not the kind of person who can sit at her tab all day and smile and work and chitchat. I’m not Dr. Meijer. I’m not Els’s colleagues at the university.
Sometimes I think I could be, and that I have a hard time because I’m lazy, and that the way I’m suddenly staring at the plant in the corner for twenty minutes straight and seeing how many leaves are on a twig and how many twigs are on a branch and if any branches break the pattern – that that’s me looking for excuses. I’ll think that the only difference between me and the rest of the world is that I have no goddamn discipline, and that all of this is in my head, and if I tried, I could fit in and be the productive little cog I ache to be.
I’m not like those kids at the shelter, the ones playing. Not really; not anymore. Maybe I’m not different at all, my autism is just bullshit, and all I am is a failure. I should do more than I am. I should be more than I am.
But if what my head feels like now truly is what other people feel all the time— if everybody I see on the street or on TV really manages this day in, day out –
They can’t be.
The world can’t be that hard.
Source: On The Edge of Gone
This is a book about an autistic girl, written by an autistic woman. This is the first book I’ve ever read in my entire life that is about someone like me, someone I really, deeply related to. It’s the first book I’ve ever read with an autistic protagonist that isn’t about autism. It’s about the end of the world, and it just happens to be told through an autistic person experiencing that. And it’s authentic, because this wasn’t written by someone who has studied autism, or who has a child with autism, but by someone who has autism. And this is the first book I’ve ever read that’s like that. I’m sure there are more books like it, but not many. Oh, there’s a wealth of books about autism, often written by parents of autistic children, often incredibly harmful books. Books that treat autism as a disease, that treat autistic people as something other, something not quite human. They treat us as if we don’t have a voice.
Do you know how tiring that is?
On The Edge of Gone made me cry, not because it was a sad book, but because I felt a little bit less alone. I felt seen. I felt like someone understood. A neurotypical person might read On The Edge of Gone and not understand. Or rather, they won’t feel it, not the way autistic people do. Or some autistic people, anyway. We come in many shapes and colours, after all. Not everyone experiences this. But I think that for a lot of us, it will resonate. I know that it did for me. And even if you haven’t experienced what the protagonist of Corinne Duyvis’s novel has, that doesn’t mean you can’t empathise with her. You might not be able to feel what she feels, but you can feel for her. Even if she isn’t ‘normal’.
Throughout my school years, I was taught to camouflage my symptoms in order to blend in and function in the mainstream environment. This was reinforced through behavioral therapy and the school system
What the people who helped me didn’t realize at the time were the future implications of my mental health as an autistic person. This was because their focus was on making me as self-sufficient and socially adjusted as possible, and by the time I reached adulthood nobody ever considered that what they were doing could unintentionally affect my self-identity and self esteem. But all my energy spent camouflaging myself in order to appear “normal” became mentally exhausting. I started second-guessing myself, and internally beating myself up, over minor social infractions. This is a big part of my anxiety in living as an autistic person.
My experience with special education and ABA demonstrates how the dichotomy of interventions that are designed to optimize the quality of life for individuals on the spectrum can also adversely impact their mental health, and also their self-acceptance of an autistic identity. This is why so many autistic self-advocates are concerned about behavioral modification programs: because of the long-term effects they can have on autistic people’s mental health. This is why we need to preach autism acceptance, and center self advocates in developing appropriate supports for autistic people. That means we need to take autistic people’s insights, feelings, and desires into account, instead of dismissing them.
Acceptance means training mental health service providers to look at autism and other disabilities as a part of a person’s identity, rather than a problem that needs to be fixed. Acceptance means helping to create a world where autistic people don’t have to camouflage themselves as neurotypical. Acceptance also means giving supports and accommodations to autistic people of all abilities and support levels when it’s asked for and needed. If the world becomes more embracing of the autistic lifestyle, I believe the severity of the mental health problems autistic people have can, in many cases, be lessened.
I updated “Bring the backchannel forward. Written communication is the great social equalizer.” with selections from “Valuing differences: Neurodiversity in the classroom – kappanonline.org” and “What CAN be misunderstood WILL be misunderstood | Autistic Collaboration”.
Sometimes it takes another person with your specific disability label, not another neurotypical teacher or peer, to help the world understand your experience. One of the first books I read about autism was Donna Williams’s memoir Nobody Nowhere: The Extraordinary Autobiography of an Autistic (Jessica Kingsley Publishers, 1998). One of her observations has always struck me as particularly apt: “Communication via objects was safe,” Williams says. For me, computers are objects that can be a bridge to interpersonal connection and growth. Those are things we all want, regardless of our differences.
I have developed a strong preference for written communication, which is a very effective strategy for avoiding the need for linguistic autistic masking.
I updated “Autistic Burnout: The Cost of Masking and Passing” with selections from “Ann’s Autism Blog: What do I mean by “We’re OK being Autistic” ? #TakeTheMaskOff”.
I’m really autistic now. But thanks to a lifetime of being told that I must disguise the pain, at all costs, I learned to mask. To put on a false front, be the person that others wanted me to be. Smile when in pain. Be really nice when in pain. Cope when in pain. Not Be Me. Never, ever be me. Never. If I was the real me, I would experience hatred from others, more isolation, more loneliness, more condemnation, more false accusation (because of ignorance of autistic culture and communication).
And, do you know what happened? It broke me.
I look around at my fantastic autistic family, friends, colleagues. The ones who have done the best masking, the best disguising? Broken. Or sitting amongst a trail of debris from broken relationships, broken job situations, broken health. I look at the research showing the suicide rates, the average age of death (54). Not from some genetic malfunction. From relentless pressure, relentless humiliation and pain. Anyone would die early from that. We need less focus on pleasing shareholders with news about ‘genetic cures’, and more listening to autistic people. More realising that actually we don’t need to be in that level of pain.
There is a myth that if we disguise being autistic, it’ll all go away. The future will be lovely. All will be well. A myth that autism was some sort of behavioural choice by us to annoy people around us. Rhubarb, to use an apt word.
It’s a myth. There is no perfect future from having to pretend we’re not ourselves. Only the extra hell of having to mask each day. Having to pretend that we are not autistic, and still endure the ridiculous expectations, sensory hell and social overload that non-autistic people place upon us.
I’m OK being autistic.
I updated “Autistic Burnout: The Cost of Masking and Passing” with selections from “Wasting Energy – Finally Knowing Me: An Autistic Life”.
Masking is exhausting. Utterly utterly draining. I’ve had people say to me many times over the years “But WHY are you so tired? What have you been doing?” and I’ve been unable to work it out. Even in my 20s I used to collapse with exhaustion on a regular basis. The brutal truth is that for an autistic person simply EXISTING in the world is knackering – never mind trying to hold down a job or have any sort of social life. And many of the standard recommendations for “improving mental health” (such as seeing more people in real life, spending less time on the internet, sitting still and being “calm”) simply make matters worse – solitude, rest, and stimming are much more useful tools. We need a LOT of downtime in order to recover from what, for most folk, are the ordinary things of life.
And this is at the core of the problem of masking. The perpetual acting, the perpetual stress levels on a par with what most folk would feel when at a job interview, the huge physical effort of sitting still and coping with sensory overload, and the conscious process of trying to work out how to interact with other human beings eventually takes its toll. In the short term it can lead to a meltdown (as it did with me in the supermarket the other day). In the long term it can destroy mental health and lead to autistic burnout.
Many autistics mask for years, putting in huge amounts of work to try to fit in to the world. Those of us who were diagnosed very late avoided some of the therapies that essentially force autistics to mask by using punishment when they exhibit autistic behaviours, although we were often taught to “behave properly” and the cane in the corner of the headmaster’s study was a constant threat throughout our childhoods. Some autistics become so good at masking that when they present for diagnosis they are turned away or misdiagnosed and when they tell people they are autistic they are met with disbelief and invalidation.
Research is starting to show that Masking is a direct lead-in to the very early Autistic average age of death, something Autistic people (inc. yours truly) have been shouting about for a very long time. You can read about this research in my article an Autistic Burnout.