What Non-Autistic People Don’t Know About Living With Autism

Autism Spectrum Disorder is a diagnosis that everybody seems to think they know about. And yet, I would prefer it if it was one of the diagnoses that people knew less about. Most people’s perceptions of autism are a mix of caricatures and harmful stereotypes. I see the same broken perspective of autism all the time and face negative consequences due to it. Usually around this time of year, at most there is a conversation or two about autistic people where people lie to themselves and pretend that they are sinless saints when it comes to how they treat autistic people. So, I would like to do something different. I would like to share my perspective of autism and the way society treats autistic people, and how people often mistreat autistic people without realising what they are doing. 

Part 1: 

The suboptimal daily reality 

Autism is now getting discussed more and more, which is a good thing. But the manner in which it is discussed is a major problem. When I see discussion of autism it is almost always neurotypical (non-neurodivergent people, so no autism, ADHD, etc) people discussing what they observe of people they know who have autism. Autistic people are almost always absent from the conversation. The fact that the whole conversation is held by neurotypical people leads to the focus being them looking at autistic people and discussing what they view as “wrong” with autistic people. This lack of communication leads to autistic people being treated horribly due to a combination of ignorance and the fact that malice towards autistic people is seen as acceptable. 

From the moment we are diagnosed, we are indirectly taught one message above all: we are broken and it’s our responsibility to fix that, as otherwise society will completely reject us, and we will live and die alone. We are taught not how to accept ourselves as we are, but rather how to pretend to be somebody who is not autistic. However, our peers were not taught to accept those who act differently to us, and because of that, for the most part they don’t. Therefore, bullying of autistic people for being themselves is widespread. So autistic people have to learn how to ‘mask’, to appear ‘normal’ so that society will accept us. It is a constant source of stress and energy as we have to do it all the time, even around our families. 

Bullying and making fun of people with autism is widespread and completely normalized. I know what you guys are thinking upon reading this: ‘I would never bully someone for being autistic’. However, many people say that and then make fun of people for not understanding sarcasm, being socially awkward, fidgeting a lot, having obsessive interests, having sensory issues, etc. The list of autistic symptoms that people make fun of goes on and on. So, in practice, people don’t make fun of us for having autism, but then make fun of us for displaying symptoms of autism. We have learned to mask for a reason. 

Media, Societal Expectations and Pressure 

The way most people are ‘informed’ about autism is through TV shows. Unfortunately, there are only two types of autistic people on TV shows. (I ignore autistic-coded characters here as people don’t usually make the connection.) The first kind is the autistic genius. He is an expert at whatever intellectually demanding thing he does, whether that is science, solving mysteries or something else. He will act differently than everybody else in some way. He is likely to be made fun of or judged for doing this, yet the characters who do this will never face any consequences or learn that judging him differently was wrong. (I say he, because this character is almost always male due to the severe underdiagnosis of women with autism). 

The second type is a child with low functioning autism. It’s rare to see an adult in this role as people like to pretend that autism magically disappears when the child turns 18. Of course, it is worth noting that defining us by our ability to function is highly derogatory, as it firstly assumes that we can’t be completely independent, and it is often judged based on how ‘normal’ we appear to society. 

But here’s the problem: if these are the two ways people view autism, we are under tremendous pressure to appear to be the genius rather than low functioning. We are afraid to speak about things we find difficult or challenging because of autism, as we know that people are likely to infantilize us because of it. Most neurotypical people do not understand that our unique abilities come with unique disabilities. So, in practice, we are expected to pretend that everything is okay all the time, even when it isn’t. We don’t talk about this with neurotypical people due to this exact fear. There is a reason I am writing this article anonymously. 

When it comes to people’s understanding of autism these days, for the most part all they know is Sheldon Cooper and the TV show “The Big Bang Theory”. For those of you unaware, it is a TV show that is homophobic, sexist, racist and also highly popular. But the main recurring joke on this show is that the clearly autistic scientists cannot achieve love, which is affecting their self-image, self-confidence, and happiness. And the general public believes this show to be hilarious. Mix this in with most of the characters clearly being caricatures of autistic people, while also presenting people making fun of their autism as hilarious and you have a truly damaging show. But if this is the most popular representation of autistic people, this shapes how people view them. However, the Big Bang Theory is far from the only show that does this. 

“Curing” Autism and Mental Baggage 

Mixed in with all of this, we also have anti-vaxxers and parents demonising autism. Having parents mourn when they discover their child is autistic is not some abstract concept but a reality that their children end up discovering. We also have psychologists looking into all of this: of course, they are assuming that something is wrong with us and not the general public, so all the blame and responsibility is dumped on us once again. 

And then you have the people who try to cure autism. These people who run courses, stealing money from the parents that will supposedly ‘cure’ autism by exploiting and perpetuating negative stereotypes about autistic people. In practice, these go two ways. The first and preferable kind is that they sell you a bunch of placebo pills and continue to convince you that the next type is the one that will do the trick. The other kind is not so good. They force autistic people to act ‘normally’ through punishment. They punish them for “stimming” (typically shaking of hands of hand that is used to burn out excess energy) among other autistic behaviours. It is based on the same pseudo-science that led to gay conversion therapy and is just as damaging, traumatising and ineffective. 

All this baggage is something that autistic people have to live with. Everything that they do, they will always have these concerns with them. It is exhausting and draining. I’m tired of it all. I’m tired of having the narrative surrounding autism being written by neurotypicals. I’m tired of all online information about autism and difficulties due to autism being for parents and partners of autistic people and not for autistic people. I’m tired of having to mask and not act how feels natural to me. I’m tired of being judged for being different. 

All this naturally leads to poorer mental health. It has only occurred to psychologists lately that showing any concern for the issues of autistic people might be a good idea, so there aren’t that many studies to cite on this (there isn’t even an Irish study on this, but the issues are the same worldwide). But the reports say that around 80% of autistic people have mental health issues, and the life expectancy of people with autism is far lower. When I first read this, I got scared: the reports were saying that autistic people were expected to have a 20-year lower lifespan. I thought I was going to die young for a reason I couldn’t control. I was terrified. But then I read why. It’s because of unusually high suicide rates. Autistic adults without a learning disability are 9 times more likely to take their own lives and 28 times more likely to think about it or attempt suicide. I believe that society’s overwhelmingly poor treatment of autistic people, and its refusal to empathise with us and accept us as we are must be the cause of this issue. 

Then, with all this, psychologists try to tell us we are the ones who lack empathy. 

Part 2: Moving to a better future. 

Things are nowhere near as good for autistic people as they should be. But that doesn’t mean they have to stay this way. Despite all the pessimism I have about society, I do see that it is possible for it to move forward and treat autistic people fairly and equally due to some recent experiences of mine. 

I do mask nearly all of the time, but I have learnt that there are times I don’t have to. When I am with my autistic friends we just completely unmask, and we have a blast. We can feel we are truly ourselves for a while and it is nice and energising. In general, autistic people tend to develop very strong friendships very quickly as we know what it’s like to be judged for being unusual, so we don’t do it to each other. It can lead to very good and strong relationships. 

Recently I went to a filmmaking camp during the summer, and most of the people there were neurodivergent (there were at least 4 autistic people of a group of about 20), and it was a great experience. We were making these crazy films of questionable quality that I will defend the honour of to the end of my life. But the best bit was just hanging out. I was able to stim and show the autistic bits of myself without feeling judged and that was empowering. Not having to mask was great. Not everybody there was neurodivergent, yet they did not judge either. It gives me hope that we could feel free to just show who we are in the future without being judged by neurotypicals. 

The Way Forward 

I would like to share an anecdote. I had a friend in secondary school, and we were both being heterosexual teenage boys. So, I tried to talk about girls with him, but he said he wasn’t really that interested. I couldn’t relate that much, but I accepted him and didn’t make fun of him nor thought anything was wrong. Sometime later I went to his house and saw that his sister was making fun of him for showing a disinterest in girls and the fact he never had a girlfriend. From what I saw, his parents weren’t intervening. I later asked him if his sister did that often, and he told she did it all the time. 

I later read a book with an asexual character and suddenly my brain made the link between my friend and asexuality. I knew what it was like to be made fun of for being born different, so I didn’t make fun of him for being different even before I made the asexuality connection. But his sister and likely others do. I know it won’t be long till his relatives start pestering him about girlfriends and all that when he doesn’t really care that much about it. (He is largely but not completely aromantic also). 

The day will come when he tells his family that he’s asexual. Once he uses the word ‘asexual’ and they make the connection, they will profusely apologise for teasing him about it. It seems that we make fun of and discriminate against those different from us until we make a word for them, then decide it’s politically incorrect, so we stop and then pick another group who don’t have a name.  

This can go on forever as we slowly invent words to cover more and more things, but I think it’s time to break this pattern. The way forward is not for society to come up with millions of diagnoses and for society to be forced to learn off all of them, as that will get too confusing. The way forward is to just accept different people the way they are. Obviously, diagnosis is important to understand what issues they face, but to truly progress we need societal acceptance of everybody who’s different. 

Stats sources: 

https://www.autism.org.uk/advice-and-guidance/professional-practice/mental-health-young 

https://www.autistica.org.uk/what-is-autism/signs-and-symptoms/suicide-and-autism