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What Does Autism Really Look Like?

Personal Perspective: What happens when an invisible disability becomes visible?

Key points

  • Many people know the word "autism," but few know the world of autism.
  • Society cannot truly accept an issue that it is not completely aware of.
  • As a grown man, I do not represent the prevalent mental constructs of what autism “is.”

Many people know the word autism, but few know the world of autism, and while there has been a huge push for “autism acceptance” as of late, society cannot truly accept an issue that it is not completely aware of. Acceptance without awareness becomes hollow, a small band-aid for an ever-increasing wound.

While autism is mostly represented in the media as unique, different, cute, sweet, gifted, etc. and is celebrated by many aspects of society as simply a “different way of thinking,” there is a tremendous amount of struggle and suffering that takes place behind these platitudes and adjectives, unbeknownst to many who are only familiar with the word “autism.”

In the world of autism, the amount of pain and trauma stemming from isolation, bullying, being frequently left out, misunderstood, and always trying to fit in, alongside mental health struggles that are rampant with individuals on the spectrum, is vastly underrepresented, and when it is given attention, it is misrepresented.

I don’t look like The Good Doctor. I don’t act like Atypical or Sheldon from The Big Bang Theory. I’m 6’1”, 200 lbs, fit, and good-looking. I make eye contact and speak very eloquently.

Autism is the last thing you think of if you see me walking down the street or conversing with me after a speech.

So what happens when you can see my autism?

Ironically, you wouldn’t think it was autism because, during my moments of severe overstimulation and sensory overload, you see a grown man curled into a ball, sobbing, pounding his chest and head, cussing, and being unable to answer the simplest questions.

And when those who adhere to thinking of autism in the simplest terms see me like this, they either think I’m crazy or pretend I’m invisible, and every time this reaction kills me a little bit on the inside. I’ll tell you why.

Russell Lehmann
Source: Russell Lehmann

The push for autism acceptance has gained momentum in recent years, and most are indeed open to accepting such a nuanced diagnosis when they hear about it. However, when they see it, this invisible disability that only becomes visible during moments of crisis and high stress, the aforementioned lack of awareness unconsciously leads to rejection of actions that can manifest during a meltdown, whereby the autistic individual is stripped of their dignity and humanity simply due to a societal knowledge gap that generates ignorance of this fragile aspect of the human condition.

For example, I had a meltdown at Dallas-Ft. Worth International Airport earlier this year after the boarding process was completed earlier than scheduled. I was thus denied entry on my flight home from a speaking engagement as the doors to the plane had closed. My brain felt like it had been lit on fire as this was completely unexpected. The plane doors should have been kept open for another 5 minutes, and as I advocated for my needs to the agent at the gate, I was met with a very cold response, even after I told her that I had autism and needed some extra support.

You see, I didn’t “look” autistic at this very moment; thus, the word “autism” fell on deaf ears, for our brains prioritize what we see, not necessarily what we hear. After a few more blunt statements from the gate agent that there was nothing she could do, even to help support me, the fire in my brain was now all-encompassing, which quickly led to a meltdown where I sunk onto the floor and began crying and hyperventilating.

Fortunately, when the gate agent saw this, she approached me and told me that she has two young sons on the spectrum. Unfortunately, I am a grown man and did not represent her mental construct of what autism “is,” and she subsequently told me to stop crying on the floor like a child. This broke my heart, shattered my soul, and frankly pissed me off, for it was a stark realization that we are nowhere near full awareness of autism, even among those in the autism community such as this gate agent. All I needed was a little comfort and compassion, simple validation of my struggles so I could feel a little less alone. However, this is difficult to come by in this modern day and age, and I was left to figure things out on my own. In short, my autism wasn’t accepted. In fact, it was completely rejected. Rejected by none other than a mom of children with autism.

The autism spectrum is almost as wide as the spectrum of human experience, and when we hold tight to preconceived notions of what autism is, we become narrow-sighted as to what autism might be and how it can manifest.

Public meltdowns will continue to occur for me, a by-product of putting myself out in a world vastly unaware of my condition. People may say they accept me when my autism isn’t apparent, but when it becomes visible, how fleeting that “acceptance” can become.

This is the totality of autism for me and for many others like me. Please don’t forget.