Maybe Everyone Gets a Raw Deal When It Comes to Autism

We are in the great autistic awakening. We are rapidly learning more about autism. Autism was originally developed by scientists observing young white boys with abnormal behaviors. With time, the Diagnostics and Statistics Manual used the name “Autism Spectrum Disorder” and defined autism with lists of symptoms based on these observations.

They didn’t realize two key flaws. One, the symptom list was primarily based on external behaviors. Two, the external behavior of autistics varies based on gender, race, age, and more.

Illustration by Jackie Schuld

Thanks to the neurodiversity movement, we are learning more and more about the interior landscape of autism. We are understanding how autistics perceive, feel, and think. We now know that some autistics can mask and camouflage so that their external behaviors are as socially appropriate as possible.

All of this new information has led to a flood of women learning they are autistic as adults, myself included. Many of us go on to write about our experiences and how the conceptualization of Autism Spectrum Disorder left us out.

This focus on women can make it seem like it is primarily women who got a raw deal. In truth, the Autism Spectrum Disorder falls short for everyone.

First, Autism Spectrum Disorder frames autism as a “disorder.” It compares us to the neurotypical norm and cries, “This is what is wrong with you.” Through the neurodiversity movement, we know that autism is a different neurotype. There is nothing wrong with being autistic. We do not need to be fixed or made to be more like neurotypicals. This framework harms any child or adult who is diagnosed with autism.

Second, Autism Spectrum Disorder focuses on external behaviors. It names abnormal behaviors such as rigidity or difficulty socializing. The focus on the external completely misses what impacts autistics the most: how they feel internally. It is their internal environment that causes them to act externally. Autism impacts information processing, intensity and frequency of emotions, body sensations, thought flow, and far more. Without this key knowledge, many autistics go through their lives not understanding their interior world. This occurs irrespective of age, gender, or race.

Furthermore, autistics are deeply misunderstood by others who focus on external behaviors, including those trying to “help” them. Medical professionals may try to change our external behavior, without understanding or addressing the underlying cause. We may learn to change our external behavior but feel deeply distressed internally. This is one of the reasons so many autistics struggle with anxiety and depression. When we understand how our brain works and the impacts it has on us, we can learn to work with our brain. We can learn strategies that support us. We can actually begin to feel better.

By framing autism as a disorder and focusing on external behavior, everyone is negatively impacted.

• Medical and mental health practitioners don’t appropriately understand autism and therefore cannot provide help that makes a difference.

• Autistic kids receive ABA therapy to improve their external behavior but don’t receive support for their internal world.

• The public is miseducated about autism and therefore cannot fully understand autistics or connect in a meaningful way.

• Unidentified autistics of all genders, races, and ages can be undiagnosed or misdiagnosed.

• Autistics do not have the opportunity to understand their interior landscape.

• The focus of autism is on negative symptoms, instead of a full portrait.

I don’t believe some sinister plot is at hand here. I don’t think scientists intentionally set out to create the errors they did. They were myopic in their studies of white boys. This is what happens in a white supremacist culture, we center ourselves and what we can see. The scientists centered on white boys and the external behaviors they could observe.

Luckily, we are now doing far better. We are now getting to hear the voices of autistics from multiple genders, ages, and races. We are now developing our understanding of autism through the lived experiences of autistics, instead of the outside observer.

It will take time for our systems to catch up. For medical and mental health practitioners to be fully educated. For our society to start making accurate portraits of autism in media.

It is already happening. You can see it in books and tv shows. You can see it in the increase of autistics on social media. You can see it in the doctors who listen and believe the lived experiences of autistics (you can read my essay about my greatest doctor experience here).

We’re not there yet though. There are still a lot of people getting a raw deal. However, autistics are doing the work to change that.

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