Thursday, February 7, 2013

Book Review: Look Me in the Eye

Every Wednesday morning, I get about 2 hours of kid-free time.  Two hours per week.  So I always feel like I have to make the very most of these two hours.  Do you know how hard it is to cram in relaxation?  So, I've defaulted to using my Wednesday morning time to run errands, and I pretty much always end up at Walmart.

A couple weeks ago, I decided that Walmart was forbidden for my Wednesday morning two hours of freedom.  I wanted to do something just for me.  But what?

I hesitantly ended up at the library.  Now let me tell you that I only go to the children's side of our library.  I never venture over to the adult side.  Once I went over there with two of my kids so I could go see the book sale room, and I felt every dirty look and glare that we got as we walked through the quiet rows of books because my children weren't silent.

So I decided to dip my toes in the water of the grown-up side of the library while I was alone.  I walked in, took a left to enter the silent side, and realized I had no idea where to go.  I took slow jerky steps to nowhere.

Then I spotted several tables with rows of books for sale laid out.  Aha!  I know how to browse the books for sale.  This felt safe.  So I spent 20-30 minutes developing a cramp in my neck by walking slowly past all the books and reading all the titles.

I really didn't see anything interesting, but I didn't know where else to go.  Finally, I stumbled upon a gem.  I found a book I've been very interested in reading, so I paid the $2 to buy it.  But I'll tell you about that book in another post.

Once I grew very bored of walking with my head sideways pretending to be interested in the books for sale, I decide that this would be a good opportunity to look up books about Asperger's.  But there was a problem.  There are several sections of computers in this foreign land of the grown-up library world.  And there were people on all of them.  And I had no idea how to look up a book on their computers.

So I earned the Dork of the Year Award by coming up with my own solution.  I casually made my way to one of the comfy reading chairs, got out my smart phone, and searched on the library's website for books about Asperger's.  Yes, I was too timid to figure out the computers myself and too afraid to ask for help, so I used my phone.

At least I remembered the basics of the Dewie Decimal system, and I found the book myself once I had it pulled up on my phone.  There were lots of good options in the section on Autism and Asperger's.  I chose "Look Me in the Eye" by John Elder Robison.

I had heard of this book from several people.  John Elder Robison grew up with Asperger's but wasn't diagnosed until he was 40.  I thought it would be interesting to read about his life with Asperger's.

I had been warned that the book has some strong language and adult content, so I was prepared and found it tolerable.

I poured over the first several chapters, trying to absorb everything he said.  I kept comparing his words to what I've observed in Griffin.  Then my fervor for the book slowed down in the middle chapters when Robison talked about designing special effects guitars for the band KISS.  He went into detail about the various engineering projects he mastered throughout various stages of his life, and to be honest, I just couldn't stay very interested in all those details.  But I pressed on and tried to stay in the mindset of learning about this man's life (rather than just trying to understand Griffin better).

I really picked up reading speed again at Chapter 20, when Robison switched from a chronological retelling of his life to discussing specifics of how he processes conversations.  I was fascinated as he explained what goes through his mind during a typical social interaction.  Those parts of the book were extremely helpful for me to understand Griffin better and think about how to help him more.

Here are some of my favorite excerpts from the book: 
"Asperger's is not a disease.  It's a way of being.  There is no cure, nor is there a need for one.  There is, however, a need for knowledge and adaptation on the part of Aspergian kids and their families and friends.  I hope readers--especially those who are struggling to grow up or live with Asperger's--will see that the twists and turns and unconventional choices I made led to a pretty good life, and will learn from my story."  Page 5
"My conversational difficulties highlight a problem Aspergians face every day.  A person with an obvious disability--for example, someone in a wheelchair--is treated compassionately because his handicap is obvious.  No one turns to a guy in a wheelchair and says, "Quick!  Let's run across the street!"  And when he can't run across the street, no one says, "What's his problem?"  They offer to help him across the street.  With me, though, there is no external sign that I am conversationally handicapped.  So folks hear some conversational misstep and say, "What an arrogant jerk!"  I look forward to the day when my handicap will afford me the same respect accorded to a guy in a wheelchair.  And if the respect comes with a preferred parking space, I won't turn it down." Page 194
I have actually thought about that before.  People can't tell by looking at Griffin that he struggles with social interactions or transitions or things not following the order that he thinks they should.  His missteps are usually chalked up to him being a difficult child or to faulty parenting by me and Jared.  It's not that I want him to have an obvious visible defect, but I would love for people to know that he is an imperfect human who may just have different struggles than the rest of us.

Robison discussed a particular conversation he had with a friend named Laurie.  He broke down exactly what she said to him and how he thought through what his response should be.  Ultimately, Laurie did not like the response he chose, even though he used his best logical thinking skills to respond to her.  Then he wrote this:
"Thinking about conversations like the one I had with Laurie makes me mad.  People approach me, uninvited, and make unsolicited statements.  When they don't get the response they expect, they become indignant.  If I offer no response at all, they become indignant at that.  So there is no way for me to win.  Given that line of reasoning, why talk to people at all?  Well, many autistic people don't, possibly for that very reason.  But, for some reason, I want the Lauries of the world to like me.  To not think I'm weird.  I can be eccentric, but I don't want to be weird.  So I persist.  I try to say things a "normal" person would say."  Page 192
This passage struck me because I've already developed a bit of a hot button with the word "weird."  Griffin is a lot of things, but please don't call him weird.

I also noticed throughout the entire book that John Elder Robison truly wanted to have successful relationships with people.  This part of Asperger's has been a mystery to me.  Sometimes Griffin says or does something with absolutely no regard for how it affects the other person involved.  Even when I point out to him why he was rude/offensive/inconsiderate, he usually has no emotional response and often combats me with an overly logical argument for what he said or did.  And yet at other times, he does show empathy and connections to other people's emotions.

Last week he was supposed to take a pair of old mittens to preschool for an activity.  We only had gloves, so my friend Megan let us borrow a pair of their mittens.  After school, he was on a mission to return the mittens clean, matched, and in their bag to Megan.  He was so determined that he totally interrupted Megan while she was trying to talk to the teacher (Megan's son is in the same class as Griffin).  He didn't notice the problem of interrupting because he was set on proudly returning Megan's mittens to her.  Furthermore, he told me that they were supposed to eat their pie for snack time while wearing their mittens.  "Mom, I didn't wear the mittens to eat my pie because I didn't want to get Megan's mittens dirty," he told me.  So he was being considerate of her feelings and her property.  {Also, he told me that the pie was moose pie.  I later discovered that it was a chocolate mousse pie!}

Sometimes he says things like, "I feel sad for Owen because he was sick and couldn't come to school today."  Other times he doesn't care one bit that his actions are having a negative effect on others.  Or at least he appears to not care.  He used to not care at all when I disciplined him, often raising my voice more than I should.  Now he has times of responding with crying and even saying, "I don't want you to be mad at me."

Some of these mysteries are what kept us from having Griffin tested for an Autism Spectrum Disorder in the first place.  They are part of why I feel like I still don't understand Asperger's.  But I feel like the author of "Look Me in the Eye" gave me a better understanding of the fact that people with Asperger's still feel emotions and still want to have successful relationships with other people, but they just don't always understand how to navigate emotions and social interactions.

Robison described in his book that he felt he reached a choice between Door Number One and Door Number Two.  A choice between pressing on and learning to navigate the "normal" world or retreating into his own world of machines and circuits and things he loved and understood.  He chose Door Number One, but he also wrote this:
"As a functional Aspergian adult, one thing troubles me deeply about those kids who end up behind the second door.  Many descriptions of autism and Asperger's describe people like me as 'not wanting contact with others' or 'preferring to play alone.'  I can't speak for other kids, but I'd like to be very clear about my own feelings:  I did not ever want to be alone.  And all those child psychologists who said 'John prefers to play by himself' were dead wrong.  I played by myself because I was a failure at playing with others.  I was alone as a result of my own limitations, and being alone was one of the bitterest disappointments of my young life.  The string of those early failures followed me long into adulthood, even after I learned about Asperger's."  Page 211

The book overall was encouraging to me.  It definitely had its scary moments.  I was trembling at his descriptions of the horrible pranks he pulled on people and his ability to lie to people in a way that they completely believed him.  I just reminded myself that he and Griffin don't have identical personalities, and they certainly don't have the same upbringing (Robison's dad was an abusive alcoholic and his mother suffered with mental illness).

I'm so grateful to have this insider's view of Asperger's.  I think the book challenged me more to nurture Griffin in a way that appreciates who he is and pushes him to integrate into meaningful relationships.  I'm still really overwhelmed.  I still don't understand exactly where Griffin's pitfalls are.  I still don't know how much of what he says and does is because he has Asperger's and how much is because he's barely 5 years old and just hasn't mastered being human.

The last few chapters of the book were enlightening and entertaining.  And inspiring.  I cried through the whole Epilogue, which alone would have made the book worth reading.  I secretly cheered as I learned about Robison's successes as an adult living amongst other people.  I took mental notes as he described things his wife does that make their marriage and life together easier for them both.  Seriously heart-warming stuff.

Griffin may not be the exact same person as John Elder Robison, and I bet their Asperger's affects them both in different ways, but I'm so glad I read this book to understand this man better and hopefully use his life story (thus far) as a resource to understand my son.


*Update:  Please check out the comment I received just hours after posting this book review.  That's right folks, it's really him!  THE AUTHOR OF THIS BOOK!  I think this is what normal people feel like when they encounter a celebrity.

1 comment:

  1. I'm glad you liked my story. As a mom you may be interested in my newest book, RAISING CUBBY, which is a tale of rearing my son who also has Asperger's.

    Also, just so you know, there is no profanity in the paperback version of Look Me in the Eye; that's the edition that's used in schools all over.