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Thursday, July 5, 2012

Through the Eyes of Autism - part 2

Autism is an invisible disability. Because of that, people with autism are not always understood when they go out into the larger world. I have met too many ASD people over the course of my career who develop the assumption that anything that goes wrong at any given moment in any place with any crowd of people is most likely their fault. And others are happy to back them up on this.

Parents like Brenda ("Mama be Good" blog author) worry about how their children will react to this prejudice when they are old enough to recognize it (see her recent string of posts on their family trip to Disney: Autism, Disney and Accommodation , Autism, Disney and the Bigger Problem  , Letter to Disney: Autism is a Disability).

So, I'd like to share with you some of Adam's thoughts and reactions on the topic of "disability", and I'll start with an incident from his high school years:

A blind student enrolled at the school, and every time Adam met her in the hallway, he was quite upset. We did the following visual work to help him make a "plan" for what to do when he met the girl in the hallway. I drew the first picture, setting up the situation, and using a circle with a diagonal slash through it (a symbol that Adam understood) over the girl's eyes to explain to Adam that her eyes didn't work. Pictures 2, 3 and 4 were drawn by Adam:

We ended up with a solution for the hallway distress, but the more interesting thing that came out during this drawing session is best illustrated by the third picture:

Take a look at the expression on Adam's face. He is taken aback and slightly frightened by the fact that the girl's eyes don't work. This, to him, was the scariest part of this situation, the reason that he became so distressed when he met her in the hallway - as a person who depends on his visual sense to understand and communicate with the world, to negotiate even the smallest of daily events, he couldn't imagine a worse disability than not being able to see. It had never occurred to him that someone could be without that information channel, and the thought of it was unnerving. What the girl represented was scary. And that was the core of his reaction to her and her disability.

What about Adam's reaction to his own "disability"?

Well, interestingly, I'm pretty sure he doesn't view himself as disabled in any way. He knows that the world and other people can be difficult, but he generally thinks that any fault in the situation lies outside of himself. Here's just a couple of examples from his life that show his attitude:

... from the earliest days of our work together, I would try every possible method and mode to connect and explain/teach any given concept to Adam. When we would finally hit on the "key" explanation and the light bulb would go on over Adam's head, the most accurate words to describe Adam's reaction to my efforts were not "it's so hard for me to understand things" but "could you not have just done that first?" (I'm sure he wondered many times why his parents couldn't afford better help).

... when others would talk down to him (like he was a small child or not smart), I would feel outraged. But Adam's reaction was interesting (and more mature than mine). He would look puzzled, begin to really observe the person who was talking "baby talk", then he would kindly and gently indulge that person (I once watched him pat a teacher on the head who was talking to him as if he were 2 years old). He wouldn't conclude that they were underestimating his intellect, instead he would assume that they were not very smart themselves, so he would politely accommodate their obvious intellectual disability.

So what has been his insulation from seeing himself as "disabled" or "lesser than"?

From a very early age, Adam's parents have treated him with the greatest respect. When he was younger and totally non-verbal, they assumed he was smart and did their best to figure out his perspective and his wishes. Any success in my therapy with Adam has been possible because of this family attitude. We have all worked together to help Adam make sense of the world, to build his communication and academic knowledge, to modify his environment to allow him to cope, and to shield him from the negativity and ignorance which can exist in the larger world.

When you grow up knowing that you're smart, that you're okay, that the people closest to you believe in you, it's much easier to accurately assign blame for prejudice and nastiness. It's not you, it's them.

We all need to continue to work together to advocate for people with disabilities, but at the same time realize that you already have the power to protect your child - your respect will be the key to helping them build a positive self-image strong enough to protect them from ignorance.


  1. This is the first post that I have read since I connected with you. it was fantastic! Loved it and will keep reading. Thanks for the great insight!

  2. Thanks Annette! Glad you liked it.

  3. As one of the parents that Sheila cites in her latest blogs I feel compelled to add a comment. The other day we were going for a walk on one many hiking trails that surround Canada's beautiful capital city. Adam was clearly struggling, this has been a difficult summer for him and he was well on his way to a sensory overload. While his mum takes pictures I do what I can to help him cope, which lately means lots and lots of applied pressure at specific areas. On this day it was particularly acute, and I thought, for perhaps the thousandth time what I would give to spend 5 minutes seeing what he sees and feeling what he feels. What insights it would provide. In the mean time we get these glimpses like the one that Sheila describes so well in her blog. Working with Sheila, Adam and his mum has been an endless series of aha moments. Our son is a smart guy and everything that he does is rational from his perspective. He gets frustrated when we don't pick up the clues on whatever signal he is sending. Much of what we do is trying understand what the meaning of those clues are. While our relationship with Sheila has evolved with time (it has been 20 years after all) the one enduring role that she plays is that of a guide to help us better understand our son.

    Its never been a dull process.

  4. It has definitely never been dull Casey! And it has been a privilege and my pleasure to share in Adam's life so far.