What are some ideas you hold about autism, and where do they come from? Even as autism becomes more frequently diagnosed, many of us have skewed perceptions of autism–largely impacted by the media. This has led to negative mental health impacts on both diagnosed and undiagnosed autistic people. Whether you have autism or not, it’s worth adjusting your view of autism in 2022.
- Who do you think of when you think of an autistic person?
- How do autism and identity interact to influence mental health?
- A personal story of late autism diagnosis
- POC with autism
- Redefining stereotypes about autism: work to do
- What can you do to be an ally to the autistic community?
- In conclusion…
As it goes for any marginalized identity, common notions about autistic people have a direct and indirect mental health impact on autistic people. For example, misconceptions about the way autism “appears” contributes to the frequent late diagnosis of autistic people of color (POC) and people assigned female at birth (AFAB). Late diagnosis can add trauma to the already trauma-filled experience of having autism.
A late autism diagnosis impacted my personal mental health as someone assigned female at birth. In this article I share my story to help you, the reader, better understand the impact that stereotypes have on the autistic community. But do not fret, I also make suggestions for how all of us, autistic or not, can make the world a more hospitable place to autistic people.
Who do you think of when you think of an autistic person?
While there are more and more autistic characters starring in the media every year, mainstream media seems to have a false understanding of what it means to be autistic.
Almost every autistic character portrayed in media is a cishet (cis gender, heterosexual) white male. This leaves marginalized communities out of the story. It also creates a false idea of autism in the minds of people who watch or read their content. Some examples are Sam from Atypical, Shaun from The Good Doctor, or Sheldon from The Big Bang Theory and Young Sheldon.
I’ve had friends text me about Atypical and have had my dad tell me I remind him a lot of Dr. House. I’m nothing like any of these characters despite us being autistic. That is the representation autistic people as a whole get in our mainstream media. It’s weird to have people around you make assumptions about how you live your life, how your internal world works, and laugh at things you do, just as if you were on a sitcom.
Caricatures of autism
I’m sure there’s at least one autistic person out there who acts just like any of those characters. However, most autistic people tend to see these characters as caricatures.
For instance, we see the “autistic savant” character type (an autistic person who is extremely gifted/genius) in people like Shaun from The Good Doctor, Dr. House from House M.D., or Sherlock from the BBC series. While many popular representations of autism depict savants, in reality only about 1 in 10 autistic people are gifted.
Millions of people collectively watch shows depicting autism or autistic characters, but most only show one face of the neurotype. I believe it is important to learn about intersectionality and the diversity of autism. Stereotypical views of autism can be especially harmful to marginalized people seeking an autism diagnosis.
How do autism and identity interact to influence mental health?
Each of us experiences interactions between different parts of our identity. This concept is called intersectionality.
Every aspect of one’s life context connects to form a wonderful, unique person. The parts of one’s identity that intersect with one’s autism, such as gender and race, can influence the path to diagnosis and accommodation. This can create another layer of trauma to deal with.
For instance, it’s a lot harder to get an autism diagnosis when you are a person of color and/or assigned female at birth. The “autism” diagnosis is not something only young male white children face, despite media representation skewing in that direction. This unfair perception has caused a lot of unnecessary trauma in many autistic people’s lives that don’t fit into the “correct” stereotypes, and thus can’t get the correct diagnosis and care.
Peers’, care providers’, and loved ones’ perceptions of autism have a concrete impact on mental health. When our needs are ignored or we can’t get the accommodations a diagnosis could bring us, it’s traumatic.
AFAB vs AMAB autistic people
For every four AMAB (assigned male at birth) people diagnosed with autism, one AFAB (assigned female at birth) person receives a diagnosis. Personally, I believe that this statistic exists because AFAB people learn from a young age to not be “too much” or to be “ladylike” in order to be more desirable or meet their mentors’ approval. They learn to mask their needs and maintain a persona. Combined with stereotypes, this factor plays into the lack of diagnoses of AFAB people.
A personal story of late autism diagnosis
If doctors and society as a whole didn’t have one version of autism spelled out to them through the media, I could’ve been diagnosed 20 years ago.
I so badly want to invent time traveling just to be able to go to my young self and tell them that they’re autistic. I was being bullied and had no idea what for. At another point, I was assigned friends because I was not actively socializing. I would have meltdowns over lots of things because of the amount of stress I was under.
I thought something was wrong with me. Why couldn’t I stop crying and why couldn’t I seem to “be a person” very well? I was told to just “chill out” when I went to my teachers for help. Unable to calm myself down, I had panic attacks and meltdowns in fifth grade.
I somehow made it to high school where the healthcare system failed me again and again. It is so evident to me now that I was an autistic person under terrible amounts of stress and burnout. But instead of relevant treatment, I was labeled simply “depressed” and prescribed a different SSRI every month. Dissociating almost all the time, I would have meltdowns every day.
I couldn’t tell anyone why, though–I didn’t know. I just thought the doctors were right. Surely, I was depressed.
How my #ActuallyAutistic diagnosis helped my mental health
After all this sad jumble of words, I made it to college and found the #Actually Autistic community online. Everything clicked into place for me.
Yet, I still had family members and friends tell me I couldn’t possibly be autistic because I didn’t match their perception of autism. I wasn’t like their 6 year old autistic cousin, nor was I as smart as Dr. House. It wasn’t fair that I had to live so long not knowing I was autistic. Then, it hurt even more to be met with doubt. But, I had reached a point in my life where I knew I had to stand up for myself.
I printed zines out and mailed them to all my closest family and friends stating proudly I was autistic. I wasn’t going to allow myself to wallow in my sadness and confusion anymore. It was up to others to catch up to me as I rode my horse into the beautiful sunset of self-acceptance.
Having a diagnosis has been important to me, especially given the mixed opinions of those around me. It’s helped me to treat myself more kindly and allow myself to unmask.
Self-diagnosis of autism can be valid as well. As TikToker “RogueNeuron” recently pointed out, the University of Washington Autism Center considers self diagnosis to be a useful tool:
“In our experience at the University of Washington Autism Center, many professionals are not informed
about the variety of ways that autism can appear, and often doubt an autistic person’s accurate self diagnosis. In contrast, inaccurate self-diagnosis of autism appears to be uncommon. We believe that if you have carefully researched the topic and strongly resonate with the experience of the autistic
community, you are probably autistic.”
At the end of the day “autism” is just a word to describe your experiences.
POC with autism
Being a white autistic person is completely different from being a black autistic person because of the systemic racism POC face in the healthcare system, government, and society.
I can never speak to the extent of trauma and hardships that creates for the autistic POC community as a white person myself, so I contacted autistic BIPOC advocate, Diane Wright. She started the website Autastic.com after being diagnosed with autism at 42 years old. The website provides education, inspiration, and support to those diagnosed with autism in adulthood.
Autastic exists for every autistic person who wants to relearn what they know about autism and create a life that they love. Resources like this have special importance for autistic BIPOC, as some autistic spaces fail to include their stories or fail to engage actively in anti-racism. Check out her website!
I asked Diane how she believed media representation has negatively affected the community’s public perception, and how these perceptions interfere with diagnosis for BIPOC. A big question.
She answered that erasure harms BIPOC in more than one way. “When we can’t see ourselves, we don’t get the opportunities that exist for others to compare internal experience with the group, we don’t get to dream of what’s possible for us beyond our immediate life experience, we don’t get role models, and more.”
There are almost no autistic BIPOC in the media, meaning no scenes of genuine autistic happiness or characters that inspire others to form self-recognition. “They say if you can’t see it, you can’t be it.”
Lack of representation prevents self advocacy
I could’ve told you I was autistic years ago if I had the knowledge I had now. It was one person (my therapist) who asked if I was autistic that led me to do some research. I wish I had seen well written autistic characters on TV when I was little; I would’ve seen myself up there and been able to understand myself through their experiences.
It’s even harder for autistic POC because there is still a lack of POC in shows and behind the scenes–let alone autistic POC. I sat and couldn’t even think of one good representation of a autistic POC character in the media and I’m a film student!
Luckily, Diane Wright had my back and said her favorite autistic character is Holly Gibney (played by Cynthia Erivo) in The Outsider, a horror miniseries based on the Stephen King book. She said that she especially loved Holly because she wasn’t just the token “autistic character”. She had autonomy, feelings, social value, and an unconventional romance.
This definitely beats the status quo when it comes to autistic media representation, especially because Holly is played by a black woman (rather than the typical cis white male). It’s so refreshing to see not only Holly being an amazing detective, but also an amazing black autistic woman.
Underrepresentation, diagnostic hurdles, and autism stereotypes
Without diverse and positive representation, marginalized groups, such as POC, women, and trans people have a much harder time receiving diagnosis and care. To learn more, I listened to NPR’s Life Kit Podcast episode where they spoke to Latino autistic author, Eric Garcia.
Eric talked about his book, We’re Not Broken: Changing the Autism Conversation, and about how the media’s representation of autism has affected diagnosis for so many groups of people. He brought up amazing points about how doctors actually believed for a long time that only cis-males could be autistic, or that only white people could be autistic.
Eric also talked about how diagnosis rates have been impacted by media’s representation of autistic people not being able to form relationships, only able to work in certain settings (science, STEM), and not being able to “properly” communicate.
Redefining stereotypes about autism: work to do
Autism doesn’t look one certain way and shouldn’t be portrayed that way. There are so many stereotypes surrounding autism. In writing this article, I did lots of research and listened to amazing autistic people on what they wanted to tell non-autistic people. Below, find a few stereotypes debunked:
Autism is beautiful
Autism isn’t an illness. It’s a neurodevelopmental condition. I love the way I am, even if things can be harder for me. If I took away my autism, I simply wouldn’t be me.
Autistic people are not made of glass
Autistic people can get married, have jobs, and do any of the things you can do. We aren’t emotionless monsters! We’re people!
That doesn’t mean that every autistic person will want to do those things. No autistic person is absolutely the same, as stated before.
Autism isn’t something to mourn over
Being autistic is not a purely bad thing. I love to devote my time to my special interests, feel autistic joy that flows throughout my body and mind, and be able to have amazing sensory experiences.
Autism is not an anger problem
Autism is not an anger management or tantrum problem. Autistic people have meltdowns involuntarily when overwhelmed. It’s important to figure out what is causing the meltdown rather than reprimanding or being mad.
Not everyone is a “little bit autistic”
Not everyone is “on the autistic spectrum.” I hear that quote a lot when I happen to mention my being autistic. “Well isn’t everyone a little bit autistic?”
No! We can have similar experiences and traits just through being human beings. By suggesting we’re all autistic, this takes away the need for accommodations autistic people have.
What can you do to be an ally to the autistic community?
The autistic community is happy to partner with allistic (non-autistic) allies. Help to raise our voices and change the unfair perspective media has instilled in society!
Use your viewership as a tool
Promote autistic creatives’ work so we can see more autistic writers, directors, actors, etc. in the media. Also, use your viewership as a weapon; sounds deadly, but watch and stream content that promotes autistic diversity and is showing autism in a good light!
Question what you think you know about autism
Relearn what you learned about autism. Follow more #ActuallyAutistic people on social media and learn about what current things are threatening the autistic community. Use your voice to promote change and help debase stereotypes.
Also check out Autastic.com because it is written by autistic people and advocates and is an amazing resource! And read Eric’s book, We’re Not Broken: Changing the Autism Conversation, because he goes into much more detail than my article could. This talk by Melissa Simmonds also provides amazing information about autism, especially focused on the black autistic experience.
Autistic people know more about autism than anyone
When in doubt, ask autistic people what they need and take those needs seriously. We are self-advocating and know our community better than anyone.
“Communication is the key to success. All people communicate. That’s an assumption we have to have, even if people are non-speaking, even if people communicate in a variety of ways, even if they don’t have a formal communication system: our job is to try to figure out how that person communicates best, and partner with them.”
I want to end by saying that autistics are not counting on me to solely proclaim their words. I am not an autistic prophet, nor do I claim to be a spokesperson for every autistic person out there (2.21% of the world’s population seems like too much to speak for).
There are surely autistic people out there who love shows like The Good Doctor or Atypical and even see themselves in those characters. That doesn’t mean that the shows don’t implement wrongful stereotypes into the heads of its allistic (non-autistic) viewers, who are the vast majority. There are millions of autistic people in the world and seeing our representation be left to one white cishet male after another is tiring.
Autistic characters’ stories deserve to be written by autistic people, portrayed by autistic people, and written for autistic people. I don’t want to have my life caricaturized. Promote shows and films that are doing good for the autistic community on and/or off screen.
The best way to combat autism stereotypes is to let autistic people share their experiences directly, through their creative work! Autistic creatives have so many amazing things to add to the media world, so promote their work and push for autistic diversity in the media’s representation of our community.
Do your work as an autistic ally; yes, it’s official, you’re our partner now.