Q & A: What does society get wrong about those on the autism spectrum?

I can’t speak for all of society, but I can speak for myself. I associated autism with the most obvious physical symptoms of Down Syndrome. The rounded appearance, the odd gait, the stereotype. When I started researching what was wrong with me a voice in the back of my head, very early on (let’s call it “common sense”) said “you’re autistic”. My reasoning, superior intellect voice said “don’t be ridiculous! You’ve got amazing reflexes! You’re an athlete and could have been a model at one point. You’re gifted in communication. You don’t rock, flap, screech, scream or look rounded. You’re not autistic.” To which common sense whispered “… yes you are.”

It took me years and years and years to overcome my bias and prejudice against those who are autistic to admit I might have it. And several years after THAT to get tested. And now, two years after the diagnosis, acceptance is still a long way away.

So. What I got wrong. Autism CAN mean rocking, flapping, making odd noises, etc. But not always. In me it means ill adapted socially, lightening quick in many other areas, can’t solve for “x” (NOT NOT NOT my fault!!! NOT NOT NOT a character flaw!!!) but can understand theoretical physics (even if I find it nearly impossible to spell). It doesn’t negate you as a person (no matter what you privately think). I’m working on that last bit.

Michael Davis

I’m curious. “You’ve got amazing reflexes! You’re an athlete and could have been a model at one point. You’re gifted in communication.” And you apparently don’t stim. So what aspect of autism DO you have?

 

Great question Michael! It’s one my therapist and I go over quite often. Here’s the problem in a nutshell: “the criteria for diagnosing autism spectrum disorder (ASD)—a developmental condition that is marked by social and communication difficulties and repetitive, inflexible patterns of behavior—are based on data derived almost entirely from studies of boys.“ That’s from a fantastic article in Scientific American –

Autism–It’s Different in Girls

“New research suggests the disorder often looks different in females, many of whom are being misdiagnosed and missing out on the support they need “

The statistic they include in the article is wrong, though. The new statistic is 1 in 59, not 1 in 68.

“In short, the brain of a girl with autism may be more like the brain of a typical boy than that of a boy with autism.”

BINGO! Here’s the description of Jennifer O’Toole from the article. You might as well substitute my name for hers.

“On the outside, she looked pretty much the opposite of autistic. At Brown University, she was a cheerleader and sorority girl whose boyfriend was the president of his fraternity.

But inside, it was very different. Social life did not come at all naturally to her. She used her formidable intelligence to become an excellent mimic and actress, and the effort this took often exhausted her. From the time she started reading at three and throughout her childhood in gifted programs, O’Toole studied people the way others might study math. And then, she copied them—learning what most folks absorb naturally on the playground only through voracious novel reading and the aftermath of embarrassing gaffes.”

In fact I’m so good at it that I wanted to go into acting as a profession. My father decided that was too paltry a career for someone with a 155 IQ and shut that down almost at once. He didn’t forbid it. He just looked at me one day and said “You’re not really going into acting, are you?” And that was that.

Like O’Toole, I have a strong obsessive streak. If you get me started on a topic I’m interested in you’ll hear quite a lot about it. For example… this reply! LOL   I really enjoy giving detailed answers if someone shows interest, and I know what I’m talking about. The nickname for this is “Little Professor Syndrome” (again coined to describe boys with autism).

“…she can be overwhelmed by crowds and is bothered by loud noise and certain textures—and her social awkwardness made her stand out. Her life was dominated by anxiety. Speaking broadly of people on the spectrum, O’Toole says, “There is really not a time when we’re not feeling some level of anxiety, generally stemming from either sensory or social issues.” Story of my life.

Applied specifically to me, I understand theoretical physics well enough to actually promote some of my own theories. But until I was in my 30’s I couldn’t solve for “x”. It didn’t make any sense, because if 2+2=x, then x is obviously 4. So if you show me 2+3=x I was sunk. Because x = 4. We just established that. So HOW CAN IT BE 5???

Incidentally, if you have a moment, spare a kind thought for my father. The poor guy aged visibly trying to get me through algebra.

I also can’t spell. I’m faceblind. I’m highly empathic, so much so that I simply can’t function if someone is in pain around me. Two of my senses are maxed out – I can’t function if there’s a television blaring in the background, and my skin is extremely sensitive. My nose, eyes and tongue are all diminished.

What my common sense was picking up on was the IQ. How could I read books by Hawking and Penrose? how can I possibly grasp theoretical physics and imaginary time and yet not be able to solve for x? How is it that I’m primed for a Master’s and PhD but I couldn’t get an undergrad? The obvious answer is autism. I just had to work around the fact that I’m not a boy. 😉 It took a while!