Why Unmasking Is Critical for Autistic People
Autistic adults’ suicide rates are three times higher than that of the normal population, and autistic women have almost double the suicide rates of autistic men (South, Costa, and McMorris, 2021). Some research has shown that the average lifespan of an autistic adult is 58 and this is largely due to suicide rates.
Many autistic people struggle their entire lives and some don’t survive. Despite this, we rarely talk about treatment modalities for autistic adults, nor do we look at the long-term quality of life outcome-based data for childhood treatments like applied behavioral analysis (ABA). A quick Google search of the most popular treatments for autism includes ABA, speech therapy, occupational therapy, relationship integration therapy, and sensory therapy. These have great outcome data in childhood as far as integrating children into neurotypical society and creating children that make the neurotypical adults in their lives happier.
But what about autistic adults? We know that autistic adults are significantly disadvantaged with regard to social relationships, physical and mental health, and overall quality of life. (Howlin and Moss, 2012). How do we change this?
Within the autistic community and within the research, the answer to this question is clear. The biggest part of changing this is unmasking. Masking is what autistic people do to try to blend into neurotypical society. It is the act of trying to repress and hide your autistic traits while acting like you believe neurotypicals are supposed to act. It is a skill learned by autistic people over the years to survive in a world where we are told that our behaviors are too weird and that we are too difficult. Most of us, even those of us who weren’t officially diagnosed as children, have had a lifetime of being told that our behaviors are repellant and that we should learn social skills to have friends. We have been taught by teachers, parents, peers, and mental health professionals that who we are and how we behave will drive people away and that if we want to have happiness, we must learn to cover up our intrinsic traits and act like neurotypical people.
This act of masking has been shown to contribute to anxiety, meltdowns, burnouts, self-loathing, and depression in autistic adults. There is a direct correlation between masking and poor mental health outcomes for autistic people.
Tree of Life Behavioral Health has a weekly support group. Almost every member of the group struggles with trauma, depression, and anxiety. The biggest notable exceptions are the few people who were diagnosed early in childhood. This makes a huge difference because they were raised in homes where their autism was accepted. They had mothers and families that fought for their rights and encouraged them to be themselves. They don’t mask. They don’t even know how to mask. They have never thought that they should hate themselves.
This is the most important part of mental health for autistic people. We must learn to be ourselves and love ourselves as we are. We must accept that some neurotypicals may dislike us and we must be ourselves despite this.
I was diagnosed with autism very late in life. I had an entire life before my diagnosis and that life was driven by masking. I was married to a doctor. I had three children, and they all went to an affluent Catholic school. I spent most of my life watching the other wives of wealthy men around me and trying to mimic behaviors I thought would appear most normal to them. For the most part, this worked. I had the same friends for 10 years and they liked the masked version of me that fit in with them.
I worked relentlessly to keep up with my mask. I never talked about my past. I tried to hide my stims and my preferences. I pretended to eat food I hated and to drink alcohol and poured glasses of wine down the drain when no one was looking. I worked hard not to infodump or say anything weird. I tried to limit my social interactions to less than three hours because I knew that after three hours, the mask would slip and the real me would come out and I lived in constant fear of this.
When I finally began unmasking, it was agonizingly apparent how little any of these people cared about me. They all fled very quickly. I tried to have coffee with one of them last week and she made it apparent that the unmasked version of me was a horror show.
I spent 10 years of my life biting my lip until it bled, giving myself regular panic attacks, and focusing on trying to appear normal so I could be liked and nobody really liked me at all. They liked the mask and if I had ever shown any part of myself, they would have run away. The mental health toll this took on me was unfathomable. I was constantly anxious, depressed, and overwhelmed. I had to watch every behavior. I have fewer friends now but the friends I have love me for myself and I never have to mask. The anxiety is gone. The depression is gone and the feeling that there is something horrible hiding in me that should be hidden is gone.
I am not alone. Unmasking is the critical work I do with many of my autistic clients. The saddest part of this process is that most of them have been masking for so long that they don’t even remember who they are anymore. They don’t remember what they enjoy. They only know it is their job to try to figure out what others want and do it to avoid rejection. Unmasking can be a miraculous thing—because once you figure out who you really are and live an authentic life, almost everything becomes better.
So when we address the growing evidence that autistic adults struggle with having a decent quality of life, we have to embrace the notion that to really support autism awareness and want what is best for autistic people, we have to provide spaces in which they can unmask and be themselves and we have to learn to stop teaching autistic people to try to learn neurotypical social skills and instead start loving and embracing them for who they really are.
South, Costa, & McMorris (2021). Death by Suicide Among People With Autism: Beyond Zebrafish. Journal of the American Medical Association. 4(1).
Hendricks, Dawn (2009). Employment and adults with autism spectrum disorders: Challenges and strategies for success. Journal of Vocationa Rehavilitation 32 (2010) 125-124. `
Howlin & Moss (2012). Adults with autism spectrum disorders. Canadian Journal of Psychiatry. 57 (5) 275-283,