Realizing I was on the autism spectrum was very eye-opening. Like most people, I had typical stereotypes surrounding what autism looks like. Rain Man is probably becoming an outdated example, but for the younger folks, think Sheldon Cooper.
More prominently, my assumptions about what autism looks like fell into very distinct personas. I always pictured a young boy flapping his hands, unable to speak and fend for himself, or an awkward man who was uber gifted in one area that consumed his life. And that was it.
Luckily, those views have changed dramatically. If you had asked me even two months ago if I ever considered myself possibly being autistic, I would’ve been very confused and in swift denial. Funny how life works.
It’s about time to break down the barriers of the spectrum and redefine what autism looks like. We may know now that autism isn’t a one-size-fits-all diagnosis, but even traditional high- and low-functioning labels perpetuate ignorance. There’s so much more beneath the surface we need to unravel.
Even if nobody in your life right now is autistic, I challenge you to reconceptualize your own beliefs surrounding what autism looks like.
autism looks like strong women.
On the personal side, like I mentioned, my autism diagnosis wasn’t even fathomed until very recently. In all honesty, I never even considered autistic girls or women. Virtually everything you see related to the subject involves boys.
There’s a reason for that. When first discovering autism and putting a name to the neurodivergence, we were only looking at boys. The outdated diagnosis of Asperger’s only involved testing on boys.
Thus we see a huge majority of autism cases in boys. Since we first started diagnosing autism in the 1940’s, there’s just over 4 boys to every girl on the spectrum. One might say autism looks like a male-dominate phenomenon, but I beg to differ.
Girls on the spectrum tend to show very different behaviors than boys. That doesn’t make them any less autistic or worthy of recognition. Not only do we have differing genetic makeup, but society also conditions us to fit into the girl-female mold of acceptable mannerisms.
In fact, women on the spectrum especially go undiagnosed because we’re masters of “masking,” or acting as if we’re normal by mimicking neurotypical expectations. We tend to care more about fitting in and making genuine connections. I know all too well the feelings of trying so desperately to form relationships, only to feel like I cannot actually connect with others. Like I’m from another era or planet.
Autism looks like every gender, every ethnic background, every anything. And yes, autism looks like girls and women who, despite trying to be “normal,” may never feel like they actually belong.
autism looks like functioning, capable people.
To make it easier for us to understand what autism looks like, we’ve made a spectrum. It’s wonderful to acknowledge how diverse autism is, but even a spectrum is essentially a long linear box. And on either end, we have the labels of “high-functioning” and “low-functioning.”
First off, what do those labels even mean? If and when someone is officially diagnosed, they don’t receive these designations. Instead, they’re used for others to understand how “autistic” someone is.
For example, if you were to call an autistic person high-functioning, then we assume that they lead fairly normal lives. They live on their own, have a regular job, and may have solid relationships to rely upon. One might even say they don’t seem autistic.
On the other hand, we may say someone is low-functioning if they rarely mask their behaviors. They may not be able to be independent, struggling with maintaining daily tasks. Maybe they have major difficulties with verbal communication. Meltdowns (or perhaps what you see as a “temper tantrum) happen quite often. This is often what autism looks like for the general population.
autism looks like real, complex lives.
Let’s challenge that idea of high- and low-functioning. Picture in your mind someone who looks and acts fairly normally. They have ambitions and have achieved major life milestones, like graduating from college with honors. They live on their own, pursuing their passions. Typically, they can speak well with themselves, keep up with conversations, and maintain close bonds with family and some friends.
Now looking at this same person. Burnouts, or complete exhaustion, are an ongoing struggle to simply fit into society. They’re virtually always needing to rock, fidget, or move in some way. Motivation for normal tasks, like personal hygiene and finances, can be extremely overwhelming. They have had difficulties holding down employment for longer than six months. Since they’re often absorbing every single emotion and sensation with acute sensitivity, they cannot handle a full day of activities that would be a typical day for everyone else.
Would you consider this person high- or low-functioning? What does their autism look like to you? Because this person is me. I’m multifaceted, and my ability to “function” can vary drastically. And, at the end of the day, I’m still autistic.
autism looks like a circle of neurodiversity.
Rather than a spectrum to determine what autism looks like, let’s try a different approach. I see it as a way that accepts every autistic person for who they are.
When we start thinking about the spectrum as a wheel rather than a linear diagram, there’s much more freedom and diversity available. Someone who may have amazing language skills could really struggle with executive dysfunction, while someone else may have the exact opposite reality. Neither of them are any less valid in considering themselves autistic.
autism looks like acceptance.
Since it’s been fairly recent since I’ve realized my autism, I’m still wary of speaking my truth.
Why? Because I know many people will question me. I can hear the thoughts already, saying that I haven’t had a formal diagnosis (which is quite expensive and difficult for women). That I don’t have the “correct” characteristics or mannerisms that clearly show what autism looks like. Heck, maybe I’m just throwing this label on myself blindly for attention.
All of these notions are damaging. Autistic people have a high likelihood of having accompanying mental illnesses. Rates of depression and anxiety tend to be high. As much as twenty percent of people with anorexia are also autistic. Of the number of autistic people who go to college, 85 percent are unemployed. Rates of sucide are rising in the autistic population, and for valid reasons.
With this plethora of burdens on our shoulders, on top of the pressure of fitting into the neurotypical mold of successful, productive life, autistics are stronger than we give them credit for. To me, that’s more defining than any functioning label will ever be.
autism looks like worthy human beings.
Redefining what autism looks like isn’t an overnight miracle, but I do think this process may uncover more opportunities for support. Autistics deserve to live their best lives, whether that’s in the workplace with adequate accommodations, in loving and accepting relationships, and/or in representation through accurate media portrayals.
There is no one way autism looks like. My best advice: treat us like normal human beings and be thoughtful in what we may need.
We’re much more than a sitcom character or critical savant. We don’t want you to fix us. We don’t want you to say that “everyone’s a little autistic.”
There’s nothing for you to cure. We don’t need your pity. All we truly need is for you to see what autism looks like, truly and authentically.
Take care, and keep the faith. -Allie
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