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Autism

"You Don't Seem Autistic to Me"

This statement can come with devastating invalidation.

Key points

  • Saying "you don't seem autistic" to someone who has autism can be invalidating and hurtful.
  • Masking often causes people with autism to hide their symptoms of autism well but can cause great distress.
  • For someone who has had to mask autistic symptoms all their life, being diagnosed with autism is a revelation.

I have autism. When I was a girl, I was called weird and difficult. I was asked why I couldn’t act right. I was often shunned by peers and adults. I was told that my behavior was bad or hurtful. I never understood what I was doing to upset people as much as I did, but I understood that most of what I did was upsetting to everyone around me almost constantly.

It took me years to learn to mask. It was like a science experiment. I would shift one behavior and measure the response. I would wait to see if people liked it and if they did, I would work hard to hide the old behaviors and present the new false ones. By the time I was in my twenties, I could mask well. I could hide most of my autistic traits for several hours, but it produced agonizing anxiety, stress, and constant self-loathing.

This process is one that most people with autism can relate to. We want to make people happy, but we know if we let any part of our real self out, they will be uncomfortable.

I have echolalia. I repeat things. I stim, move my hands, and rock back and forth. I am hyperverbal; I talk too much about my fixated interests. Suppressing all these things takes a constant relentless focus that is exhausting on a level I can’t fully explain. Yet, if I let myself be, most people think I am selfish and weird.

The most hurtful thing to hear when you have autism

As a therapist, one of the most frustrating things for me is how many of my clients come to me, sit on my sofa, and tell me that other professionals have told them “they don’t seem autistic.” These are clients who have been tested with valid and reliable testing instruments that show they do have autism. However, psychiatrists and other doctors and therapists say “you don’t seem autistic” because they don’t present with very clear versions of what society expects autism to be. Often, most of my clients are like me. They have learned to mask. What I wish I could explain to every person is how much this statement hurts.

Historically, autism research and treatment have been focused on children who have extreme symptoms that cause distress to parents and caregivers. (Broderick, Alicia. 2022). This has led to a number of stereotyped perspectives on autism in clinical and layperson populations. This means that if you are an adult with a job who can mask well, you will hear “you don’t seem autistic” multiple times. This hurts because it shows that professionals and nonprofessionals are ignoring us and not listening to our experiences and struggles.

I am an adult who spent most of my life feeling like an alien that didn’t quite belong with humans. I put so much stress and work into appearing human that at times it has come close to breaking me. My autism diagnosis was a revelation to me, and for most of my clients, it is the same. We feel like there is finally an explanation for why we have felt like aliens, and we can finally allow ourselves to be ourselves and give ourselves grace. So, when a professional or anyone we barely know says that a diagnosis that helped us understand our entire life is garbage, it is heartbreaking.

I had one client get full psychological assessments from three separate psychologists. She spent $3500 on these assessments and all she wanted was to hear her psychiatrist and her parents say, “You have had autism all your life, and I see how hard this was on you. I am sorry you have had to struggle. I want to know the real you.” Three testing batteries and still her psychiatrist would look at her and say, “you don’t seem autistic.” She was. Every test said she was. She was good at masking. She had been emotionally berated into hiding her atypical traits her entire life, but beneath the mask, she was diagnostically on the spectrum.

The need for validation

The truth is most people who have autism need validation more than anything.

La Cassette Bleue/Shutterstock
Masking can cause significant emotional distress.
Source: La Cassette Bleue/Shutterstock

They have been told they were weird or different or difficult their entire lives. They were asked why they couldn’t just be normal. So, when we get the diagnosis that explains all of this, it is a revelation, and when we hear those toxic words, “you don’t seem autistic,” they are the most hurtful words we can hear.

I have run a neurodiverse women’s group on Facebook for a while now, and there is one meme from this page that has been shared hundreds of times. It is a picture of a woman responding to someone saying, “But you don’t look autistic!” The woman responds by saying, “I learned against my own will how to hide my entire being at a young age as a result of chronic, repetitive child abuse, emotional neglect, bullying, ostracism, and social isolation simply because I’m autistic that lasts for over a decade, causing me to involuntarily mask on a daily basis and become a bitter, confused dissociating mess of a human shell who for a long time believed that there was something horribly wrong with me as an existing human being and couldn’t comprehend that I was just different and that there was actually nothing wrong with me and I never came to terms with it until early adulthood and that is why, my friend, I don’t “look” autistic to you.”

This quote has been shared hundreds of times on my page and I took it from a page called Spectrumy where it had been shared hundreds of times. This is important because this meme sums up how we feel about being told we don’t look autistic. It is shared over and over because there is nothing more hurtful than being told the very thing that has helped us love ourselves again is invalid to you.

References

Spectrumy: Thoughts on Neurodiversity and Mental Health (Facebook Page). https://www.facebook.com/profile.php?id=100044510616450

Broderick, Alicia A. (2022) Masking Can Cause Significant Emotional Distress. Myers Education Press.

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