For people on the spectrum, how well someone fares in the general public or on the job often depends on someone’s ability to hide his or her autistic traits and mannerisms. This survival mechanism is known most commonly as masking, though some call it passing, armoring, or camouflaging. One of the most difficult aspects of masking is the suppression of stimming, which is short-hand for self-stimulating behaviors in which autistics engage to help maintain neurological equilibrium. Some examples of stimming could be hair twirling, hand or arm flapping, rocking back and forth, tip toeing, fidgeting, spinning around, humming, making sounds, or even chewing gum.
When autistic people suppress stimming behaviors, their stress heightens and their ability to focus and regulate their emotions diminishes. Other behaviors an autistic person may engage in to mask are imitating social mannerisms which are unnatural to them, trying to be still, forcing the self to smile or laugh at the right times, pushing themselves to make eye contact, engaging in small talk, imitating the voice inflections and facial expressions of neurotypicals, reading the scene and finding the most innocuous space to inhabit at all times, and even rehearsing how to seem more “normal” before a social outing.
Leo Yates has spent his whole 48 years of life masking his autism in front of others, but he recently made an announcement in an online community for autism. It went like this:
I am going to try totally unmasking and being honest about my totally autistic self tomorrow.
From community members, he was encouraged and sent well wishes. One woman responded, “Acting all time is exhausting, I hope your brave decision makes you free!! Good luck.” Another replied, “Good for you. Sometimes it feels great just to…stop pretending. I’ve been experimenting with that more and more lately.” The people of the community The next day, Leo made his first update:
The doorbell rang.
The loud sound triggers me, and worse, it means that there is someone I was not expecting at the door. I hate it when this happens. I normally try and seem normal when answering the door.
It was a parcel with a postman attached. I opened the door stimming like mad, something that I normally would try to suppress. I don’t think the postman noticed my stimming to start off with as he was logging the parcel as delivered. He asked how I was. I hate meaningless questions like this. I said autistic as f*ck and proud of it. I think he might have been confused and said, “I don’t understand.” Still stimming madly, I asked him to look it up.
As result of this [answering the door unmasked], much less recovery time was needed for me and hopefully someone else in the world will understand a bit more about autism.
To this first update, one man who is just discovering that he is also on the spectrum, responded, “You’re my hero, Leo!” Others commiserated with their own anxiety when someone unexpected shows up at the door.
Later, Leo makes another update:
Went food shopping.
Never a good move. I hate supermarkets… all the noise, beeps, clanks, people. I needed to go though as a few of my favourite foods are only sold in the supermarkets and not the nice quiet local stores. I was prepared, though, and had my headphones, shopping list, etc.
I get there, and it’s reasonably empty. (Hurray!)
Headphones on, music playing, shopping, and stimming. The stimming is something again that I try to avoid where there are other people present, but not today.
Seem to be getting a few people looking at me as I smell the apple and pork sausages and cheese I have just picked up.
Then it happens. A couple starts arguing. This is a bad trigger for me, and I start to meltdown. I leave my shopping and head towards the exit stimming like an Olympian.
On the way, a security guard next to the door sees me and asks if I am okay.
I’m becoming non-verbal by now, so I point to my autism medical wrist band. Again, that’s something I would not normally do.
I sat in the car park for a while recovering, listening to music, and watching the pattern the cars made entering the car park. Twenty minutes later, I’m ready to try again.
On the way in, the security guard asks if I’m ok. I say, “Not really,” which again is not something I would normally do. I asked him if I could please speak to someone.
A manager came, and I briefly explained my autism. He took my list and £20 and asked me to sit outside in comfort. About 10 minutes later, an employee came out with my shopping and my change.
I did not avoid the partial meltdown but by being my autistic self and not masking, I was able to get the help I needed.
To this, community members were heartened by the manager’s and security guard’s actions. Several, Leo included, implied that they intended to contact the corporate branch of the store or the store itself to commend the store staff on how they handled the situation. Later, came Leo’s final update on his first day of participating in the world unmasked:
I was happy about how the day went, so I went for a pint in my autistic-friendly pub.
For those who do not know about this, it is where I first unmasked to a few people there about my autism. I am the quiet person in the corner.
There was a new barman, and he kept on asking me things.
One of the locals who knows about my autism said, “This is Lee. He’s autistic, so he has difficulty with understanding people sometimes. Please don’t keep asking him questions. If you talk to other people, and he is interested, he will join in the conversation for a short while.” I was grateful for that man stepping in on my behalf to explain.
I told him that things that are not factual or that are based on emotion cause me a lot of difficulty understanding them, and that I see the world in a totally different way than he does.
I said that I need time to process the words and try to work out the non-factual bits in each statement.
He said he didn’t really understand, so I said, “I will give you some sentences that might do the same thing for you.”
I thought for a bit then said, “The the fax machine was invented before the telephone.” He spent a while thinking about this, and I said, “This is what I am like with your language.” I then told him, “When the Great Pyramid was being built, mammoths were still roaming bits of the world.” Again it took him time to take it in.
I think he understands my struggle now.
I am off home now, my social battery is empty. I will be online, but my masking day is over.
Group members congratulated Leo on his day spent unmasked and thanked him for sharing his story. One neurotypical woman suggested that he turn his story into an article so that others can better empathize for what it’s like to walk a day in the shoes of an autistic person and understand how it feels. Another woman, an aspie, responded, “I hope more of our friends decide to unmask and keep us updated about it! I think unmasking is the most loving and helpful things we can do for ourselves. I’m so happy for you! And for the kind people who understood and stepped in to help today!”
Leo feels that he is not good with words, though the words he used to tell his story are as beautiful as the motivation behind sharing it. He wants to help other autistic people to find their voices. Leo wasn’t the only sympathetic character in his vignette, either. For many autistics, unmasking in public doesn’t go so well. The terrifying reality is that the security guard who caught him leaving the store could have jumped to conclusions that Leo was on drugs or was dangerous. This often happens, and when the autistic person is triggered and tries to run away or becomes non-verbal and is unable to answer questions coherently, the outcomes can end in arrests, tasering, or worse. The store manager could have called the police instead of finding someone to do his shopping. The new bartender could have felt that Leo was intoxicated or hostile and kicked him out of his favorite safe place. Instead, Leo was lucky to end up in the right place at the right time, with people who extended to him tolerance and acceptance.
Not every autistic person has the same struggles as Leo, but all people on the spectrum face tremendous difficulties in social circumstances. It is a moral imperative that people take the time to learn about what autism means and how to best support the people in your world who are on the spectrum.
The featured image is a painting Leo did of his favorite pub. He uses art to paint the world as seen through his eyes.