19 November 2010

Nothing at all or way too much?

A few weeks ago, we had a play date with new friends. The other child is also on the autism spectrum. His mom said something that really stuck with me - kids on the spectrum are sweet, innocent in a way that other children aren't. She said that she really loved that about her child.

I kinda shrugged it off, agreed but then talked about something else. It made me uncomfortable. I'm not sure why. Maybe it was something about finding some good in all of this - the behavior management, the food restrictions, the insane amount of effort it takes just to get through a day. Sometimes you're just too tired to find any good, or afraid that talking about it might make it go away.

As the days went by, I continued to think about what this mom had said. In fact, I couldn't stop thinking about it. I thought about all of the kids I knew who were also on the spectrum, and was struck by this commonality in all of them. Maybe sweetness isn't the right word - it's more like a purity of heart. It's certainly that way with my Diego.

If you haven't spent time around kids on the spectrum, a common misconception - even among autism professionals - is that spectrum kids don't want to make emotional connections. Nothing could be further from the truth. Our kids want desperately to connect - sometimes they just don't have the tools to do so. Some of the obstacles that stand in the way can be low language skills, visual or auditory processing disorders, social anxiety, sensory integration challenges, or difficulty with executive functioning (poor impulse control).

Recently, though, I read a study that got me thinking about how my son interacts with others and what gets in his way. Diego is the most loving child you might ever meet. He is sweet and empathic at times. While at other times, it seems there is a complete emotional disconnect. If he's confronted by another child's emotions Diego may internalize them as his own - insisting that he's the one that is angry or hurt. This of course, can upset the other child - but Diego is actually over-empathizing. He really feels the other child's emotions as his own. It's this inconsistency that affects relationships. And that's where the study comes in.

As posited by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, suggests that the fundamental problem in autism-spectrum disorders is not a social deficiency, but rather an hypersensitivity to experience, which includes an overwhelming fear response.
“There are those who say autistic people don’t feel enough,” says Kamila Markram. “We’re saying exactly the opposite: They feel too much.”  (http://tinyurl.com/pajrrk)
And of course, if you are overwhelmed by emotion - it is easy to just shut down. Imagine if 24-7, you always felt like the dial was up to 11. Imagine the coping mechanisms you'd resort to... tantrums and withdrawal don't seem that far off. 
The tricky thing is that sometimes you just can't know when the hyper-emotions will pop up. Last week Diego and I were on the subway and a man on the train was asking for money to buy food. Naively, I asked Diego if he was willing to share the snack we had in our bag with this hungry man. Well, that launched us into a very intellectual discussion about why the man was hungry, didn't have a job, why, why, why... my mistake.
Later on, Diego was crying. We had already been home for an hour or so. When I asked him why he was crying, he said it was because the man on the train was hungry and had no one to take care of him. He wanted to go back and give this man his snack. It broke my heart. It also reconfirms in my mind, that children on the spectrum are capable of so much more than they are given credit for - and that truly overwhelms me.