Thursday, January 7, 2010

That little thing called Aspergers.

Yeah. So, buried beneath my recent revelations http://http// from my last 6 months was this little tidbit...

#6. I found out our son has Asperger's syndrome.

I didn't bury it for reasons that you might think. I didn't even bury it purposefully. It's just that it is so new, so raw, so complex that I just can't really articulate myself at this point. Of course there are much, much worse things for a child to have. I know that, really I do. But as a parent, who loves her children to the core, it is a revelation that just slaps you in the face and thrusts you into a reality you didn't plan for, you didn't ask for, and that YOU DON'T WANT.
I'm not sure how much to say here, and how to say it. I'll do my best. Evan is a unusual child, with a super creative brain, an insatiable curiosity, a huge heart, and the face of an angel. I feel like I'm shortchanging him by describing him so succinctly, but that is the way communicating words on a screen can fail you.
We have had many challenges with Evan since he was a little guy. In some ways, it feels like we went on a merry go round for years and years and the diagnosis of Asperger's has made the ride stop. As much as I hate it, it fits him. There is a bittersweet comfort in getting an answer...the answer. I know it has been helpful to him. He finally has a basis to start understanding himself. This is a child who has told me repeatedly... "I'm different. Why am I different?" We have always told him to celebrate being different, and he really has. He has a book he reads about Asperger's and other autism spectrum disorders. It is called "Different Like Me." It highlights noteworthy people who have been on the spectrum. It has given him a positive perspective and role models to look up to. His latest dream is to be like Albert Einstein (who had Asperger's). My dream for him is to be the best he can be, all while loving himself and accepting himself.

This school year has been difficult for Evan. As he grows up, it is increasingly apparent to the other boys that he is different. It is hard to be an eccentric introspective 8 year old. Especially one that doesn't like, and can't really play sports. He has been getting bullied. A lot. We are in a simultaneous process of trying to figure out what his needs will be in the public school, all while researching private alternative educations for him. Lots of details. Lots of changed plans. Lots of shattered dreams, and new dreams forming. I wonder if I'm grown up enough to handle all of this.

I'm not sure how much to go on here, so I guess I'll leave it where it is for now. I'm happy to answer questions, or discuss details that I didn't cover here. Just let me know what, if anything, you would like to know. In the meantime, I leave you with some pictures.
This is not Asperger's. This is my son...

We will make it. He will make it. We won't let him down.


The Mom Jen said...

You exude strength in this post and you are amazing! Remember this is a place to scream, cry, laugh, praise, and applaud all of life, we're here to listen and support!! ;)

phd in yogurtry said...

New dreams forming. Yes. You're embracing this new understanding of your son and that's what he needs. He's a lucky boy, having such a receptive mom.

dental4usa said...

I agree with Jen - you do show strength. You were there for me when I needed it - I am here for you now when you need it. Answer your damn phone once in a while though!! Or return a text! :-P Seriously though, you are going to do fine and Evan will be fine. You have strength and motivation to learn, teach, and do what is necessary for him. Believe in yourself.

David said...

Hey Debbie,

I didn't mean to imply you were hiding something, when I said you "buried the lead." It's just a newspaper expression that means you didn't start with the most interesting part of the story.

I totally get what you mean when you say that it's not a diagnosis that you want to hear. And I know that neither I nor Einstein are going to convince you otherwise.

However, the more I learn about it, the more convinced I am that, unlike autism, Asperger's is not a disease or disorder, but just a different, and in many ways superior, way of looking at the world. Sure, some things that seem effortless to boring "normal" people can be tricky for people with Asperger's, but the reverse is almost always equally true.

And this fundamental apprehension, that Asperger's is not actually a disease or disorder, has a profound implication for treatment. Just as nobody aspires to study only just enough engineering or mathematics or music to be just as good at one of those disciplines as somebody with Asperger's might be without even trying, neither should anybody--with or without Asperger's--aspire to be merely as good at understanding people as somebody who does not have Asperger's. The goal, for all of us, should be to become "better than well," and to never stop honing our skills at dealing with other human beings.

Accordingly, I highly recommend the book "Emotions Revealed," by Paul Eckman, the world's foremost expert on facial expressions, who is best known for being the technical consultant for the FOX TV show "Lie to Me", and for his appearances in Malcolm Gladwell's books. "Emotions Revealed" is not a book written for people with Asperger's. It's written for anybody who wants to become expert at detecting the emotions of others and at knowing how to react to others displays of emotions to achieve the best possible result.

I personally spent most of my life very weak in that skill. But after about a year of studying in this area, I suddenly find that I am now much better at reading people's faces than most of my friends. I don't do this automatically, the way most people do, but through rote book learning. I am certain that there is no reason why a motivated person with Asperger's cannot do the same thing.

I actually think that someone with Asperger's might have a huge advantage in learning this material over unexceptional people who rely on their unaided feelings of empathy to read facial expressions. First of all, people with Asperger's tend to be exceptionally good at comprehending clearly-laid-out systems of rules, and that's what this is. Second, by not being distracted by automatic feelings of empathy triggered by facial expressions, someone with Asperger's can more easily recognize which facial expressions are reliable, and which are easy to fake. For example, we can all fake a frown, but very few people are able to nor would think to fake the triangles that appear between the eyebrows, the eyes, and the nose when someone is truly sad. We can all bare our teeth and narrow our eyes, but very few people can nor know that they should narrow their lips as people who are truly angry typically do.

In short, while it is not at all easy for someone with Asperger's to learn these skills, I am convinced that it is much easier for them to do so than it is for people without Asperger's ever to obtain the special abilities that people with Asperger's typically possess. When you combine that fact with the idea that the goal of this training is not to become normal, but to become better than almost everybody else at reading faces and recognizing social cues and demonstrating empathy and so on, you can see how I've arrived at my conclusion that Asperger's is not a disease or disorder at all.

Here's a link to the book, which I recommend to everyone reading this: Emotions Revealed, 2nd Edition

David said...

Oh, here are a couple of other great resources:

Mind Reading is a very comprehensive computer program that describes and displays thousands of video examples of 412 different emotions. It includes appearances by Daniel Radcliffe (Harry Potter). It is designed to be used by people with Asperger's, by actors, and by anybody who just wants to become better at recognizing facial expressions.

The Definitive book of Body Language is a great book that not only helps you recognize the body language of others, but also to control the body language signals that you broadcast.

The Mystery Method was the book that got me started into this whole field of study. It is a book about how to behave in social situations from the focus of attracting women. It's not necessarily the best book on the subject of human interaction, and your son might be a little young for it. But, like I wrote the other day, it's effect on me was like the old joke, "SEX! Okay, now that I have your attention . . . ." In particular, the book is excellent at conveying two ideas that I think will both be easier to grasp for someone who has Asperger's than for someone who doesn't. First, the most effective strategy for getting what you want in a social situation is often highly counter-intuitive; and second, the way to behave in general is to try different things and to keep doing things that work and to stop doing things that don't work. I sure wish I'd read this book when I was a kid. However, there is a follow-up by the same author called The Pickup Artist: The New and Improved Art of Seduction that is scheduled to be published on January 26th, so you might want to wait for that.

And my first choice remains Emotions Revealed, 2nd edition by Paul Eckman, which I discussed at length in the previous comment.

David said...

How could I have forgotten the life-changing book Emotional Intelligence (which I also think every new parent should be required to read), and the quite disappointing follow-up Social Intelligence, which is not nearly as good, but still somewhat useful?

Megan said...

You're a good strong mama for him!

My friend Val has her Ben. And you could describe him just like you describe yours. If you need help, advice, a friend, a penpal for the boy, etc... Val is a fantastic resource and Ben is a great kid.

We hope for a kinder world for spectrum kids to live in. *hugs*

Cindy said...

How fortunate he is to have you in his corner. I know you will all be fine, regardless of the tough road ahead. And btw, what a beautifully written post. I know there are a lot of Aspergers parent in the bloggin community--hope you can connect with them and find some support that way too. Hugs to you.

The Pink Putter said...

First of all, a belated welcome back to the blogging world! I'm glad to see you back!

Second, I know that this is difficult and you have conflicting emotions about Evan's Asperger's syndrome. As a former teacher who is now a principal, my advice to you is to stay in communication with his school-and be clear that you expect them to do the same.

One of my most memorable and rewarding students was one who had Asperger's syndrome. His mother was very open about it and she and I were in constant communication. I knew very little about Asperger's and it was through her communication that I was able to meet his needs. He was a quirky, fun kid and I thoroughly enjoyed having him in class.

Now that I have a few more years of education under my belt, I've had more experience with students who have Asperger's. If you ever need any advice or suggestions, I'll be glad to help you.

Hang in there, you are a great mom!

Tawanda Bee said...

I am full of emotion as I read your post. My son had similar experiences at school. He too was incredibly gifted and had a huge heart. He too was often misunderstood and responded to life in ways different from the other children.

I am so grateful that I learned to love him unconditionally before he died. It was not always easy... not easy at all. His energy would suck up all of the energy out of a room, and before I learned how to best parent him, I made a lot of mistakes.

Life is a process... a process I trust today. Gratitude for each moment keeps me grounded in the blessings of the pain... and the blessing part of it shines so brightly today.

Love and peace to you and your precious son.

Jen said...

Sorry I'm so late to the game here...But you know how I feel about you, Evan, and the whole diagnosis. You are an wonderful mom and you'll get Evan everything he needs and more to cope with this new beginning and to love himself throughout the process. Hang in're doing great!