Look Me In the Eye: My Life with Asperger’s

This post is sort of a book review and personal post all in one. You see, I just finished reading a book called Look Me In the Eye: My Life with Asperger’s by John Elder Robison (John was the older brother in the book/movie, Running With Scissors):

This book really hit home for me because I also have a life with Asperger’s – I do not have the disorder, but both my son Matthew AND my husband Mike have Asperger’s syndrome – so in one way or another, my own life is affected every single day.

Asperger’s syndrome is a neurological disorder that is associated mainly with difficulties in social interaction. It also involves obsession with specific interests, sensitivity to light and/or sound, a tendency to see things logically (sometimes to a fault – every issue is black-and-white with no shades of grey) and to be an extreme rule-follower (again – to a fault – there are no exceptions to rules for Aspergians). Creative writing is also difficult for people with Asperger’s – their writing and speech is simple, precise and to the point.

Which is why I thought it was interesting to read a book written by a man with Asperger’s. And the writing style was clearly different from most books – sentences were direct and short – almost as if written by a child in some ways.

But people with Asperger’s are by no means lacking in intelligence! They are some of the greatest minds in areas such as mathematics and science. Not in a “Rain Man” savant kind of way – people with the disorder are highly functioning and can manage quite well in everyday society – but some things that most of us take for granted can be a real struggle for them.

The book gets it’s name from the Asperger’s characteristic of being unable to make eye contact with others. As a child, the author was constantly told to “Look me in the eye!” And that’s something I especially notice about Matt – not only does he avoid making eye contact with others, but he even kind of curls up and turns away to get as far away from them as possible when he’s speaking.

Asperger’s syndrome falls on the autism spectrum and there is no cure – nor should there be. It’s not a ‘disease’ – just a different way of being. Reading this book helped me to better understand some of what Matt and Mike go through. The author explains that he never wanted to be alone – he really did want to socialize with other people – it’s just that he never knew how. He describes going up to another child playing with a truck and feeling like the child was playing with it wrong – he thought he knew a better way. So he grabbed the truck from the child and showed them how to play with it. His intentions were not to be rude – he genuinely wanted to help the other child learn a better way. But it never occurred to him that there was more than one way to play with the truck (part of the rule-following I mentioned earlier – there’s one way…black-and-white…no exceptions) or that taking the truck was socially unacceptable.

Empathy is also an issue for Aspergians. The author gives the example of someone telling him when he was a child that an aunt died. His resulting facial expression was a smile. Not because he thought it was funny…but because in his mind, the death of the aunt didn’t affect him and in fact, he was happy that it was not his mom or dad (hence the smile). The reaction was socially unacceptable – but how do we learn this?

Most of us learn from watching others and from some sort of instinct – it’s the same instinct that leads us to ask appropriate questions and make small talk – something Aspergians are unable to do.

So what’s it like to have a child with Asperger’s? It can be very frustrating, that’s for sure. I have trouble relating to Matthew’s issues because they seem so foreign to me. And it drives me crazy when he insists on correcting everyone (as he is doing right now with Emily on their new Wii video game – I have to keep in mind that he means well…but it can be very frustrating when his is so critical of others – it’s like the story of taking the truck).But at the same time, he’s sweet, bright, honest (lying never occurs to him – part of the black-and-white thing) and I love him for who he is.

And what’s it like bring married to someone with Asperger’s? I think Mike was scared when he went online and tried to find a support group for those with spouses who have Asperger’s and almost all of the posts were about how horrible it being married to an Aspergian and about people leaving their husbands/wives. But I don’t feel that way.

True…I had to make some adjustments in my expectations. Mike will never be a social butterfly or spend time talking with me all night long. But he, like Matt, is sweet, honest, caring, a wonderful father and is one of the smartest people I know. When we first got his diagnosis, I did have to take some time to absorb all that it meant. But instead of focusing on what he can‘t do, I like to focus on what he can do – and that is to love his family and to be the best father and husband that he can be. At that he is successful. And that’s more than enough for me.