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How a Lifetime of Masking My Autism Has Affected Me

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I read with interest today an article that suggests babies as young as 6 months old who are neurodiverse (on the spectrum) have been observed masking. Many people, especially those of older generations have a strange perception that a child with an autism diagnosis somehow outgrows it, which isn’t true. Many simply get better at hiding it!

There is no cure for ASD. Masking is exactly what it sounds like, simply putting on a metaphorical mask. In my case and that of many others of the autism spectrum, that mask is a neurotypical (“normal”) one. It is when someone on the spectrum either consciously or subconsciously hides the telltale signs they are autistic. I have read articles that suggested subconscious masking was actually an innate survival mechanism, to stop one from standing out or revealing a weakness. Masking is like applying camouflage. Some who received a diagnosis at young age are taught to mask by professionals who think hiding autism will make for an easier life for the youngster. I taught myself.

Autism is frequently portrayed in the media as being something awful, something to be feared, contributing to feelings of needing to hide it. I have been masking for as long as I can remember. I do it consciously as well as subconsciously.  I have become a master of disguise, so much so I got to 35 before receiving my own diagnosis. Many friends still don’t know, many relatives too, including my own middle child.

The perfect example of masking is when a child with ASD behaves perfectly in school but comes home and explodes into a meltdown. In school they masked their autism. As the coke can example suggests, there is a price to be paid for masking, whether at the time or much later.

This is my mask. I can make eye contact. I know not to take things literally and to read between the lines. I don’t chew my clothes or fingers or hair. I am never without gum though, ever. I can behave beautifully in public. I don’t show anxiety around changes. I can interact with other people “normally.” I don’t flap or fidget. I can tell jokes. I can imitate facial expressions. I don’t freak out when someone touches me. I don’t have meltdowns in public. I know not to say what I am thinking. I know the majority of people don’t want to hear about orca sightings or other random animal facts, even though I would love to share them. Some of these are subconscious, others not so.

Since receiving my diagnosis, I have been letting my mask slip a little. In some ways, especially at home, I am more relaxed in my own skin. It only took 30-plus years to get to this point! I caught myself flapping recently, when I heard news that one of my favorite places to visit had a new arrival. I stopped as soon as I realized, embarrassed in front of my family. I learned not to flap or talk with my hands at school. I can remember being forced to sit on my hands. I can remember being mocked for flapping and hand talking, so I learned not to do it. When I get excited a voice in my head says “no flapping.” The girl in my head flaps, but I don’t. I still talk with my hands when I feel comfortable in a situation. When not appropriate, I still sit on them!

I have a mask I put on when required; it is my autopilot. Autopilot is how I survive social situations such as parties, meetings and any situation where I have to be the “normal” me. Autopilot consists of the list above. I psych myself up, take a huge deep breath and on it comes.

Two of my children are brilliant maskers, so much so it took 10 years and an appointment with a recognized world leading expert in ASD and his team to get a diagnosis for one. The other child is still without diagnosis, though the day and time will come when it becomes necessary to pursue this further. I can see their masks because they take them off at home. I see how hard they try to keep their masks in place. I also see the price they pay for wearing their masks. Masking comes at a huge price.

I read with some horror that the life expectancy of someone with ASD is just 54. One of the main reasons for this is suicide. Suicide. Please stop a minute and think about that, really think. Why do you think the risk of suicide within the autistic population increases ninefold? I believe the reason is the huge damage caused by trying to conform to society’s idea of what normal is. The brain of someone with autism is wired and works differently to someone considered neurotypical. It can take a tremendous amount of effort and energy to make an autistic brain demonstrate behavior considered neurotypical. Someone once explained it as being a Mac in a word full of PCs. I like that one because I love my Mac far more than I ever loved any PC! Or trying to run a petrol car after putting diesel in it.

In my teenage years where I have struggled most in life so far, and where I first realized I was an Aspie, I had huge difficulties with my identity, conforming to society’s expectations and peer pressure. I didn’t fit in, no matter how hard I tried. The cost of masking took its toll. On three occasions I was pushed to the point of almost no return. I tried to end my own life, not as a cry for help, but because I was so alone, confused, overwhelmed and exhausted, I didn’t want to live. Every day I tried to conform in school, not that it always worked. I was famous and had a reputation for throwing classroom furniture at teachers and running out of school.

I didn’t fit in anywhere — at work, with friends, even in my family. When I was myself I got into trouble constantly, so I learned not to be myself, learned there are times where you definitely don’t give an honest answer, learned that being honest often lead to me getting hurt. I did what many autistic young women do; I modeled my behavior the best I could on those around me. I perfected my mask. Sadly I now watch my children doing the same, making the same mistakes, trying to suss it all out the same as I did. One who knows nothing of my furniture-throwing school days has been in trouble on numerous occasions for exactly the same stunt!

Can you understand how hard masking is to maintain? You are at a party, you are talking to a friend, there is music blaring, faces, some you don’t know are everywhere. In your mind you are telling yourself to focus on the conversation. Make eye contact, don’t wave your hands or flap, don’t say what you are thinking which is “I want to run away.” Smile, laugh at a joke whether you understand it or not and constantly try to keep the conversation flowing while inside anxiety has its hands gripped tightly around your neck, your heart is racing and your mind is working at a thousand miles an hour.

Masking is not letting any of this show. Masking is maintaining that conversation. Masking is appearing as normal as the next person, whatever normal may be. The cost is exhaustion. The ultimate cost of masking is burnout. Burnout is different from tired. It is being so tired you can’t move, you can’t think, so tired you can sleep for days, so tired there is nothing left. Inside you feel completely empty; there is just a thick dead blackness.  So tired and broken that death seems welcoming. For me burnout was depression. Post-traumatic stress disorder. Anxiety. Self-harm. Suicide attempts. I can’t cope with what is considered “normal life.” I never have been able to.

From high school onwards I have really struggled.  I never managed more than a few weeks at college before dropping out because I couldn’t do it any longer. It was frustrating wanting so badly to learn and get a good job and build a decent life but not being able to manage more than a few weeks before totally burning out again.  It can take a week, sometimes more of sleeping almost solidly, plus high dose vitamins and painkillers to put me back on my feet.

For every day or week I pull off living in the neurotypical world, there is payback. When I was a teenager it came in the form of meltdowns that saw me crying uncontrollably for hours at a time most days, followed by deep sleep that nothing could wake me from. It became a vicious cycle — too much overstimulation meant exhaustion, meant unable to attend college etc.  Now it is sleeping for days at a time at the end of each university and school term, living with constant gut issues, thyroid problems, hair loss and physical pain.

I have learned to manage burnout. To cope with university, I keep all social activities to a minimum in term time, I space meetings as much as possible and I plan nothing for the first week of the holidays so I can just sleep if necessary.

Why are autistic adults driven to suicide? We live in a world where being different is feared, mocked and bullied. We need to teach children and adults that different is OK, different can be good, different is nothing to be afraid or ashamed of.

I learned to hide my autism for all those reasons. It worries me that 35 years on, I have seen children run from my youngest who is very visibly autistic for the same reasons. As a society we are more autism aware, but we are no more accepting and I believe that is why the suicide rate among adults with autism is so high. People can’t thrive in a world where they don’t feel accepted.

Today’s children with autism like my own are going to grow up to be adults with autism. Please learn to be accepting of different. Model this behavior for your children so they do the same. Then maybe this tragic trend will start to reverse.

Getty image by Grapix.

Originally published: November 7, 2018
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