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Wednesday, August 7, 2013

Untangling the "Why?"

Probably the most common questions I've fielded over my years working with individuals on the autism spectrum all start with the same word: "Why ... ?"

Why is he doing that?
Why doesn't he look at me?
Why did she run away?
Why did he melt down?

Some autism professionals will tell you that all of the information you need to know (to answer your question) can be found by observing the person's behaviour in the environment where it occurs. I would agree that this can be a good place to start (especially if the person is non-verbal) because you get some clues about what might have gone wrong, what might have irritated, upset or overwhelmed that person. But it's just a starting point.

Many human actions and reactions are more complex than "if this, then that" - they are driven by thoughts, feelings, perception, understanding - to figure them out, you will need to find a way to ask the ASD person what the situation looked like from their perspective and you will also need to listen to, respect and act on the answer you get.

So, a few personal stories to illustrate:

First, a story that I've mentioned previously in this blog. When Adam was in elementary school, a social goal was written into his IEP (Individual Education Plan) stating that he would learn to say "hi" to other students in the hallway. From the start, Adam was clearly (and observably) upset by this program. So, I drew a picture to "ask" him what was wrong - here's what he drew:

#1 is my picture "question" to Adam - pictures #2-4 are his "answer"

Picture #3 was the most compelling for me - Adam is inside the locker, hiding from the horrible smiling greeting girl (visible in pieces through the locker vents), his distress and upset clear for anyone to see (no lack of emotion on his part). While we still didn't know "why" it was so awful for him, there was no doubt that it was, so the "greeting program" was scrapped.

Respect for his perspective. In retrospect, my guess is that he was not able to process faces and voices very well at that point in time, so he couldn't really tell who was talking to him (or why they would be). When he got to high school, he seemed to suddenly be more comfortable with other people and started to spontaneously greet them and call them by name - because they were the same height as him? because his neurology had developed to the point the he could distinguish one person's face/voice from another? because life in general was more comprehensible to him? - maybe one or all of these reasons (or something else entirely). Interesting, but not as important as listening to him and respecting the fact that a program meant to be helpful was actually not.

Second story, also from elementary school, involves a different young boy with a diagnosis of Asperger's Syndrome. We had been doing a lot of visual work to help him figure out social dynamics on the playground (an environment that was full of conflict and distress for him). Suddenly, his EA (Educational Assistant) made a worrisome observation - the boy's eyes were rolling up in his head when he was out on the playground with his peers. Some of you may have jumped to the same conclusion that we did - fearing he was starting to have seizures, we discussed a referral to the pediatric neurologist. But just before we did that paperwork, I realized we hadn't really asked him what those incidents were like from his perspective.

So, I drew him a visual "question" (although this boy was verbal, his language often failed him when he was trying to discuss more abstract or emotional topics). The question looked something like this:

I asked him to fill in the thought bubble, and this is what he wrote: "I don't want them to read my mind". Interesting. We had been having a lot of discussions about the "invisible" social cues (facial expression, tone of voice, body language) and about how eye contact was important because it let you "read" these social cues and make guesses about what another person was thinking (to help navigate a social situation more successfully). This boy was very intelligent. He decided he wasn't all that comfortable with having other people know what he was thinking, so he purposely denied them eye contact to prevent them from reading his mind. A logical and reasonable conclusion based on the information he had been given.

So, we had a new discussion about the difference between guessing and knowing, and the fact that the other kids couldn't actually read his mind. Once he felt reassured that his thoughts were still private and it was his choice which ones he wanted to make public, the eye rolling stopped immediately, and the neurology referral was no longer necessary.

Not a "why" that could be figured out in any other way than by asking the person doing the behaviour.

Third and last story. This one is about another beautiful and sensitive young boy with a diagnosis of autism, preschool age, who suddenly seemed to go backward in his toilet training. It turned out that he was fearful of the noise made by the public bathroom hand-dryers and his fear quickly extended to all toilets. A psychologist suggested to the mom that she make the boy go into the public bathroom (drag him, I guess), stand him under the dryer and repeatedly turn it on until his "avoidance" response was extinguished. The mom didn't think this sounded like a good idea, so she asked me for a second opinion. I strongly backed up her intuition that this was a very bad idea.

Observation showed that the boy was terrified by the hand dryer noise, although he couldn't articulate "why". Parental common sense says that you protect your child from fearful situations, rather than purposely exposing them to scary and overwhelming situations (because that's abusive).

Here's what we did instead. I made him a tape of sounds - ones he liked (like my piano) and ones he didn't (like the hair dryer). Then I let him be the boss of the tape machine (this was a while ago, it was a cassette tape). He controlled the on/off, the volume, which ones we played and which ones we didn't. Very interesting because he would choose to listen to the "fearful" sounds in this context, very softly to be sure, but he seemed to want to figure them out.

At the same time, we got him some "over the ear" noise protection headphones from the hardware store, and he wore these many places outside of his house to control his personal noise intake. I can still clearly picture the day he arrived at my house with a determined look on his face, headphones in hand and announced: "Sheila, get the broom ... we're setting off the fire alarm!" ... and we did ... and then he asked me to get the hairdryer so he could turn it on and off while cautiously lifting up one cup of his headphones. A very brave boy, facing his fears on his terms.

What was important here? Listening to his perspective. Giving him respect for the magnitude of his fearful response to certain sounds. Giving him control over that scary part of his everyday environment. Giving him strategies to manage the overwhelming cacophony of the larger world.

And here's the most interesting part. The "why" of his reaction, which was revealed as he grew older. This boy is a musical genius. His auditory system is so fine-tuned that he can play back multi-part harmony after hearing a musical piece only once. His auditory processing is far too exquisite for the yammering jack-hammer nature of our mundane world, and that's why he was overwhelmed by everyday noises when he was a little boy. As a grown-up, he is an accomplished musician with a rare talent. Beautiful boy indeed.

WHY is the most common question, and also the most important question.
Always seek out the perspective of the person on the autism spectrum. Respect the answer that you get, even if it's not convenient or the answer you hoped for. Bend the world to accommodate the ASD person, smooth the rough edges, make things comprehensible, give them control and the power to choose what they want and don't want, what they will or won't do. Respect them as independent intelligent human beings who may not want to comply with your arbitrary demands, but so what?
Defiance tends to lead to more interesting and unusual places than compliance anyway.