The following is the full video and transcript published in 2020 by Quinn Dexter from the YouTube channel “Autistamatic”. It expresses the sentiment that so many Autistic people feel.

Living in Fear (Why Autistic Life Can be Terrifying)… Autism Life

Hi and welcome to Autismatic Unfiltered. A series of unscripted or loosely scripted short films about autistic life.

Today I want to talk about an often neglected aspect of living in a neurotypical world that doesn’t tolerate differences easily. The very real fear that we experience often on a daily basis which limits us and shapes the way we lead our lives.

Autistic Fear

I’m going to talk about fear from an autistic perspective only. I’m in a very privileged position. I’m white; I’m male; I’m heterosexual; I have a job and a wife and I live in a wealthy western country; I’m physically disabled but other than that I don’t have to contend with anything else that might cause me to be marginalized.

Many people I know are not in as easy a position and have to deal with not only the kinds of issues I’ll be talking about but the fears that come with having different coloured skin; being transgender; being gay; or even simply being female. Intersectionality is something I’ll talk about at a later date but for today it’s just about how just being autistic can make everyday living a fearful experience.

The moment we tell someone we’re autistic their attitude and treatment of us can change. It happens all too often. Here’s a personal example: not long ago I was contacted by the GP of an elderly relative. They wanted to talk to me about a complicated family situation, a safeguarding issue. We had a productive conversation until I had to explain why I didn’t see a certain family dynamic from the same point of view as other family members. As soon as the words “I’m autistic” left my mouth I felt the change in the tone of the conversation. There was a sudden alteration in the way I was being spoken to. Their speech slowed down - their words becoming staccato - as they started thinking carefully about what they said. They started to explain how certain things were emotional reactions… as if I couldn’t understand my own family’s behavior. Their vocabulary became more simplistic. I was being told rather than asked. My own views were being explained to me and excuses were made for the bad behavior of others that was the the very reason I got the call in the first place. The conversation started with me being asked for help as a respected elder of the family, and ended with me being patronized like a naive 12 year old.

I’ve done a number of videos about the processes we go through following diagnosis; and another specifically about the process and considerations behind disclosing that we’re autistic in the workplace.

Emotional Rollercoaster

Being diagnosed is an emotional rollercoaster. There’s elation and relief - and sometimes grief and loss - whilst we get used to a new understanding of ourselves and our differences. Few people realize how powerful an experience it can be. But even less know that we go through an abbreviated version of it every time we disclose to someone.

When you tell someone you’re autistic there’s a list of cliched responses we expect - that get joked about on social media all the time.

• You don’t look autistic
• You must be very mild or very high functioning
• People mention autistic characters or public figures and expect you to be like them. They’ll talk about Rain Man or Sheldon Cooper and compare us to them.

Someone I know told someone else they were autistic and got the response: “Oh like Greta Tunberg! I guess you must really care about the environment then.” Then you get those who think they know something about autistic life because they know someone else who’s been diagnosed usually a child. They start to tell you about how hard it is for the child’s parents, and how they wouldn’t be able to cope if they had an autistic child. Um, Yeah. Thanks. You’d hate to have a child like me. Fantastic. That makes me feel like a million dollars. Believe it or not - these are the more positive responses we get. The negative reactions can be soul destroying - and even dangerous. You tell some people you’re autistic and they can turn against you in an instant; like the GP I mentioned earlier.

Attitudes can change. We get patronized. We get told what we should feel or think. Talked to as if we were children, or even left out of the conversation altogether. It can even lead to accusations of mental, or emotional instability. Even people flinching when we move - as if they expect us to attack them.

A while ago I wrote an article for Neuroclastic - which related to the story of a young man who was hired for a retail job, and went to an orientation thing before he was due to start working. When he disclosed that he was autistic to the person in charge he got sent home and his employment terminated with the excuse that by not declaring he was autistic on his application he was effectively a liar. That’s completely illegal but without the financial muscle to afford the lawyers he would have needed to fight it he had to suffer.

Aggressive Denial

Another common reaction is aggressive denial. We get told we can’t be autistic for some ridiculous reason. We can’t be autistic because we have friends; we have a job; we have kids; we’re married; or even because we have feelings. People can be really nasty about it sometimes. Like we’ve just made some horrendous confession they can’t quite take in. They think they know what autism is - and it’s something horrible. They won’t accept that somebody they like, or respect, can be that horrible thing. I even got the reaction of “you take that back” from someone once when I told them.

They also might compare us to some autistic child they know of, and say that because “we’re nothing like them” we must be lying. I’m sure you get the picture by now - and I haven’t even touched on the bullying that comes with being autistic; or the way that the very word autistic has become a playground insult. You can clearly see there’s a lot to fear in telling people that we’re autistic - but the fear doesn’t start there. I was diagnosed as autistic at the age of 13. At a time when hardly anyone knew what autism was. It was years before I was able to make sense of my diagnosis. But, the fear I’m talking about started long before the day the psychologist first told me.

Being Autistic

Actually thinking, feeling and expressing yourself as an artist - even one who hasn’t disclosed or hasn’t even been diagnosed - is enough to make our lives a risky endeavor. After bad experiences in my teens and early 20s I stopped telling people about my diagnosis. Like so many of us I mask myself as completely as I was able. I consciously suppressed obviously autistic behaviors like stimming and echolalia. I made a huge effort to make eye contact; to endure social events that burned my senses to a crisp; and I tried to play the corporate game to boost my career so I could feel more financially secure. My autism was a secret from everybody. Employers, friends, even my girlfriends - except for one person who worked it out themselves. But I kept my diagnosis under wraps for decades.

There have been times when I’ve left jobs because I was unwilling to go along with unethical, or even illegal activities, I’ve been asked to undertake by my employers. I’ve been hauled into the boss’s office and been given stern warnings for not wanting to go to social functions in my own time. I’ve had written warnings for lack of “team spirit” because I objected to racist jokes. And I’ve been told that if I reported someone’s sexual harassment of a colleague I’d lose my job. There was a boss once who told me off for always being truthful with customers. “People don’t want the truth. They want to believe. You don’t admit we made a mistake - you schmooze them so they think it’s their fault and apologize to you instead,” they told me.

Back in school I used to get in trouble for being a “clever dick,” because I answered questions correctly too often. I would be told off for being too interested in things, and for not being competitive enough. When I didn’t get excited - whooping and cheering at our school winning a sporting tournament - I got sent to the headmaster’s office for lack of “school spirit.” In all these situations nobody knew I was autistic. It was me being autistic they didn’t like. I got into trouble at school for being clever, and at work for being honest. On almost every occasion. I’ve tried to stand up for something that was right It’s been me that suffered for it, not the person responsible.

Being autistic isn’t about a diagnosis or a piece of paper. It’s a frame of mind. A spiky; uneven skill set; a way of seeing the world; and of processing information. It’s in the way we understand ourselves - and other people - and how we communicate. We cannot completely hide ourselves no matter how skillfully we mask - and it often gets us into trouble.

Autistics live in fear not only of being marginalized because of our diagnosis, but are being treated differently for exhibiting the very qualities society tells us it wants from us. Be honest; but not autistically honest. Tell the truth; but only the convenient truth. Stand up for what is right; but not if it upsets the social pecking order. It’s a terrifying world to live in for many of us, and it needs to change. But how do we do that?

Decision

I made a decision a couple of years ago; that I was going to do what I can. Would use my own strongest skills to try making a difference.

Something happened in my life that made me realize that if we as autistic people didn’t do something about this woeful state of affairs then nothing would change.

I said earlier that I’m more privileged than many of the artists I know. I’m a white middle-aged man; I have a reasonably secure job; and I have a wife who supports me. I’m in a safer position than some people - so I am better placed to take certain risks so that others can benefit later. I decided to stand up and be counted. I will never hide my autistic nature again. I’m as open as I can be, because if people like me don’t challenge the status quo, how can we expect others in riskier positions to ever have a chance.

Autistic Normalization

It’s not enough to talk about autism awareness - or even autism acceptance. The only way forward is autistic normalization. Being autistic will always be a disadvantage - and a source of fear for us - until it’s seen as part of everyday life. When I tell someone I’m autistic it shouldn’t be a conversation starter, let alone stop people dead in their tracks. They should just see it as normal as saying that you like detective novels or football or you come from a different town.

The more people who feel safe enough to take that step forward - who are in a strong enough position to take that risk and come out of the autistic closet - the closer we will get to normalization. The more of us there are visible in society, the harder it is to treat us like outsiders or anomalies. Every celebrity who has a diagnosis: tell the world in your next interview. Every business leader and politician: be open about your diagnosis. Or, if you just suspect: dig into your pockets and get one. Every artist who is more privileged than others like us; who has a job; a partner; or who may have kids: ask yourself “Can I take the risk myself? Can I do my bit to make the world safer for the millions of other people like me living in fear?”

Can I make it safer for more black autists; more trans artists; more women; more gay people; and all those others who have more than just being autistic being held against them in society - to have one less thing to fear. If the answer is yes, it’s a risk I can afford to take. What’s holding you back?

Autistic Fear

I took a stand, and I no longer fear what comes my way.

From now on, I will fight back if anyone tries to hurt me, or my reputation, for being who and what I am.

I will not lie for anyone, and I will challenge them for expecting me to.

I will not stand by and watch other people be abused; so I will make that complaint.

I will never hide who I am again.

I lived in fear for too long, and those days are over!

☘︎

– Dexter Quinn (@Autistamatic). 19 Nov 2020. Living in Fear (Why Autistic Life Can be Terrifying)… Autism Life. [Video]. YouTube. https://youtube.com/watch?v=xumPgktA_Gg