6 Myths About Autism We Wish You'd Quit Believing
As written by an autistic guy.
getty One of the worst things to deal with is people presuming who you are and what you do based on how you look or act.
It becomes even more difficult to deal with when you have to give explanation after explanation for why it happens, day-to-day, because it is invisible to the human eye.
That’s how I feel, being someone who is autistic.
Whether through negative portrayals of how we act, on TV and in movies like Cuba Gooding Jr’s Radio, to the anti-science and totally false anti-vaccine movement devoted to not vaccinating yourself or your kids because of the “fear” of them turning out autistic, debunking myths about autism adds to the horrible feelings we have to deal with every day.
When the world presumes you aren’t who you say you are, or presumes that you act a certain way because of how your brain functions, it is dehumanizing.
To counteract this, I spoke to a handful of people who identify as being autistic and discussed some of the myths and misconceptions that people have when it comes to identifying on the autism spectrum.
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Before we start, it's important to know that the CDC defines Autism Spectrum Disorder (ASD) as more than a simple diagnosis of autism.
According to the CDC website, "A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder."
Ultimately, I hope this list of myths about autism gives a better understanding of who we are as people.
1. Not all Autistic people are white, heterosexual, or cis-gender.
A major oversight in the United States is the bias — implicit or explicit — that ASD is only identifiable in cis-heterosexual white children.
This misconception not only leads to young Black and marginalized folks of different communities being misdiagnosed as children, but it also leads to the children themselves growing up without knowing why they act a certain way until much later into adulthood.
I was reminded of this when speaking to Evan, who identifies as Black, non-binary and transgender.
Evan, who uses the pronouns "they/them/their", spoke about originally not knowing the overlap of behaviors that could occur between having gender dysphoria and being autistic. They talked about how they didn’t have the language to express why they acted the way they did.
Evan says that being Black and queer has forced them to "mask" in ways that medical professionals don't often consider, which has been one of the factors that has stood in the way of Evanm receiving a proper diagnosis.
"To go through all of that and then realize that people still have this stereotype about autism that is thoroughly white and male, it just adds another layer of invisibility to the scenario. So now I have to both prove that I'm autistic and prove that people like me can be autistic."
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2. Keeping an ASD diagnosis from us is not healthy and it doesn't help us feel "normal".
Some parents may believe that they can either wish away their child's diagnosis or pretend their child never got the diagnosis in the first place. But this is a mistake.
Evan, who I talked to in the point above, spoke to their family to learn if their parents ever prevented them from getting diagnosed when they were younger.
Ultimately, Evan found — on their own — the language that would best describe some of the experiences they had that most neurotypical folks (defined as, "those individuals who do not have a diagnosis of autism or any other intellectual or developmental difference") never experience in their lives, helping Evan on the road to better self-understanding.
“I start realizing that these things I thought were totally normal (brain fog, nausea, sensory overstimulation) are not things the average person experiences," Evan explains. "I have had extreme shutdowns two or three times as an adult, but had no language to describe them."
Evan had to discover for themself, whether through the legal system, their primary doctor, or anything they could think of, why they might be having these experiences.
"So I had this whole 'aha' moment in which I realized, okay, this explains some things. But the major complication started when I approached my family to figure out if I had ever been diagnosed as autistic," Evan says.
"As soon as I started talking to my family members, they started having these reactions that were way too misinformed — like they already knew this about me — or way too strategic. My mom said I didn't have autism but literally sent me an academic article via text that's abstract, [suggesting that] people with Asperger's were bad at conversation because they think in ‘black and white’.”
Evan is now seeing a therapist, but that person doesn't do diagnoses. They had to get a referral from their primary care physician, but their therapist says she can't give a 'yes or no' answer about whether Evan has autism or not. So, instead, Evan and a therapist work on other issues.
“Our conversations keep being about how I might be using autism to obscure my emotional wounds with my family," Evan explains.
Evan also saw a resident who said, "autism is a disease" and asked why they'd even want a diagnosis.
"The thing that people kept saying to me that stood out is that I seem to socialize fine and that, because I write and can express myself, I'm probably not autistic. This was especially painful for me because the more I think about growing up, the more I start putting some of the puzzle pieces together. It felt like my family had actively conspired to hold this information from me.”
When autistic people experience this kind of pushback from family, it falls on the person to discover for themselves who they are, why they experience certain sensory developments as they grow, and what happens when being able to learn more than you knew when you discover communities of people that have experienced similar situations.
“I just think it's really disheartening to go through this experience where, if I had known that I was autistic, I could have had a community of autistic peers earlier in my life," Evan says.
"What stood out to me was that I made several friends, often through online interactions, who also happen to be autistic and they were often the ones where were like ‘yeah, duh, you're autistic.’
Evan also keeps having these sensory shutdowns in public places and would like to better understand and control them.
For instance, they share the story of taking a fight over Thanksgiving weekend. "An alarm was going off in the terminal for 45 minutes. It gave me brain fog and nausea while I was trying to navigate a delayed flight."
Ultimately, Evan thinks people need to "reframe autism as a sensory disorder as opposed to being organized around social ‘deficiency’ as the DSM suggests.”
3. Not all people with autism lack humor or are socially withdrawn.
When speaking to an art teacher by the name of Windy O, she reminded me why these misconceptions and myths are so ridiculous.
“I think the biggest myth that bothers me is that we don’t have a sense of humor. A lot of us have a pretty good sense of humor. It doesn’t seem like we have it more or less than neurotypical folks," she says.
"Another one that bothers me is how people almost always believe that all autistic people are really quiet, or that we all talk a lot. For example, if they believe all autistic people are really quiet, they won’t believe someone who is autistic and are very talkative as part of their personality. It doesn’t occur to people that we can be extroverted or introverted just like neurotypical people can be.”
4. The autistic brain is full, not empty, like some people assume.
When speaking to the next person, who requested to go by the pseudonym "Levo", they spoke on people’s misconceptions of what goes on in an autistic person’s mind, how we cope with being in certain settings, or what makes us feel better when we are emotionally distraught.
“One myth that I’ve been examining a lot lately is the oft-cited feature of autistic people being inwardly-focused to an extreme," Levo says.
"Ask a generic allistic (another term for "neurotypical") person on the street and they’d probably picture an autistic child – likely a boy – sitting, facing a corner of the room and quietly rocking or mumbling to himself.
Levo thinks a lot of allistics see this as a catatonic state, but they want to debunk the myth that "autistics don’t have anything going on in our heads, that we are empty inside our minds.”
Levo makes a great point. That society has this perception of people with autism perplexes me, personally, to no end, as well.
“I have a lot going on in my mind," Levo explains, "and it’s a source for me to dip into in time when I need to relax or stay focused, or when I’m just bored."
Levo explains what that "dipping into" is like for them.
"I drift off into thought and into my 'inner world' that’s full of songs I like, moments from videos or TV shows that make me laugh, stories that I’ve written and characters I’ve created.:
"I need constant stimulus or I get restless," Levo elaborates, "and my brain does a fairly good job of getting it to me in moments like brushing my teeth, doing the dishes, or waiting for my cold cuts at the deli. Whatever that could help get through the day, I did it.
People may assume they know why an Autistic person is smiling or laughing to themselves, but they might just be wrong.
"Maybe I start moving for no reason or laughing seemingly out of nowhere, but it’s because I’m supplying my own internal entertainment and — importantly — my own comfort. Around other people I can feel on-edge and fear sounding fake, but in my head I am confident and am my genuine self.”
5. Autistic people have feelings, too.
The best way to summarize my feelings on these misconceptions is to ultimately remind folks that we are human beings, and we are not empty vessels of flesh that lack empathy or any other defining emotion.
An artist by the name of Alison Robin put it best:
“One myth about autistic people that bugs me is that we aren't deeply emotional beings. People think that because we struggle to read people and thus empathize appropriately at times, that we don't feel," she explains.
6. We are not all the same.
The biggest myth about autism is that autistic people are all alike, or that being autistic always looks just one way in a person’s peripheral vision.
Once you get to know someone, whether they were diagnosed as a child or adult, you can see very clearly that we are as diverse as anyone else. Some of us are funny, some of us are serious. Some of us are social, some of us are not. Our range of abilities and skills, our disabilities and challenges, are huge. They vary, and something that affects one person might not affect another.
The best way, in my opinion, to counteract these myths, is to stop expecting us to act one way when people should just get to know us for who we are. That sounds simple enough, but unfortunately, it bears repeating. Ignore the myths and caricatures in the media, and pay more attention to the wonderful people around you.
Michael Baginski is a writer, video editor, and Events chair of theFreelance Solidarity Project. You can find him on Twitter talking about pop culture, politics, and Tim Curry at @bagmanman.