Thursday, April 21, 2011

Asperger's Syndrome

While John was in the hospital several weeks ago, he was diagnosed with Asperger's Syndrome in addition to the Bipolar diagnosis he's had for years. Those two words have been a Godsend to me. Being as I was trained as a special educator, I knew what those words meant immediately. They explained so many of the quirks that Bipolar didn't exactly encompass. It meant he really didn't get it (whatever the particular it of the day was) even though I'd explained it a million times. It meant I hadn't failed as a mother or a teacher and that he wasn't being disobedient in the ways I had presumed. It was a big moment for me and it changed so much about our relationship without ever changing anything about John.

Immediately, my school teacher mode kicked in and I went to work. Unfortunately, I kind of left a few people in the dust as I ran ahead. I think some of them understood some of why I was relieved but didn't quite understand why I was so different in my interactions with John as well as my greatly increased hope. (And my new busy infatuation with scheduling.)

At one point, a dear friend who also has a newly diagnosed Aspie, questioned me, "How do I know when he's being disobedient and when he's doing something due to Asperger's?" I tried my best in the moment but I think my attempt at helping her understand fell flat.

Two weeks later, my husband asked nearly the same question. But I'd been mulling it over for a while and realized the problem wasn't my answer but that the question was leading us all in the wrong direction.

You see, you will never be able to separate what is Asperger's and what is the individual child. The truth is that whatever is inappropriate behavior, is simply inappropriate behavior. It needs to change into an appropriate behavior. The diagnosis helps me to understand that the way I've been trying to train my son on appropriate behavior was never going to work. I could consequence till the cows come home (trust me, they had been mooing loudly and milling around my kitchen for years). Dealing with him as one would expect to deal with most children doesn't work.

I think, at first, my husband felt like I was excusing a lot of John's behaviors. No, just because I stopped yelling, scolding, removing privileges and sending him to his room, doesn't mean I was choosing to let him get away with it.

Since I've known John, I've seen the same pattern repeat. He makes a simple, normal mistake. (Or sometimes not so normal, but seemingly innocent enough). I then try to correct or steer him in the right direction and he then PANICS. He reacts in such bizarre and over the top ways, breaking 15 other rules and endangering himself and those around him in the process.

Nowadays, I tend to notice a problem area and think, "Hmm, he doesn't get this. I need to find a way to teach it to him." So I do what I can to calm him down. Or just wait out what is going on. Or simply non-emotionally try to explain it in the frankest and most simple of terms. He's a smart boy. He grasps certain things so easily and it was frustrating before because one had to assume he was not doing what other children naturally do on purpose. I mean, at least have the decency to act sheepish when I catch you in the act. Maybe, sometimes, it was on purpose. Either way, he needs to be taught an appropriate behavior instead.

Since his diagnosis, I've worked on his panicking and running out of the room when I say something he doesn't like. Fifteen times one afternoon, I walked calmly to wherever he ran and silently and gently and strongly took his hand. I pulled him back to where we had been talking and said, "It is rude to run away when someone is talking." Then I continued where I had been interrupted.

The fifteenth time (after doing this his entire life and my punishing him repeatedly and explaining) he took three panicked steps away and came immediately back. He said, "Running away is rude." I smiled and continued whatever it was. Whenever he runs away I repeat the process. Never again has it taken 15 times in a day and most days it doesn't even happen anymore but sometimes it does. He does, after all, have a lifetime of the habit and still suffers a great deal of anxiety.

In special education, there is a concept called remediation and accommodation. Remediation says you work on the parts where there are deficits. If they are behind in math, you go to the highest level they have mastered and work to help them develop new skills. You don't get angry because they are in fifth grade and haven't yet mastered simply addition, you just keep working at whatever pace is necessary to help them continue to move forward. In the meantime you offer accommodation. For a child who cannot walk, you offer a wheel chair, walker or crutches while you may still offer physical therapy to help them support their body weight on their legs, and so on. In John's case, remediation comes in the form of explaining what behaviors are unacceptable and showing what to do instead. And accommodation comes in the form of making his environment as predictable and safe to him as possible.

Now, a rigid schedule and very explicit rules are frequently preferred by children with Asperger's Syndrome, but it is obvious that you don't want to always give into that inflexibility and need for routine because they will never be able to handle any changes. So it is a balancing act. You hold as many things as possible in a predictable manner while you make small incremental changes. He feels safer and less anxious and many of the behavior issues are lessened just for that fact.

In the meantime, when I notice something is not right, I try to find out the reason. Because John thinks so differently than myself and most people, I'm usually surprised to find out why he's doing something. He was tilting his head back and forth in a sneering, disrespectful manner when I said something he didn't like. It was very easy to assume he was just being rude and nasty.

But he probably saw a teenager in real life or on TV and saw it as the way you respond when someone says something you don't like. He was executing it perfectly and in the right context but had no idea of the meaning behind his actions. And when I got angry at him, it bothered him and made him panic and usually run away. Suddenly, it dawned on me one afternoon. "John," I said in my non-judgmental, teacher voice, "tilting your head back and forth like that is just as rude as sticking your tongue out at someone." He looked shocked and then regretful. Sincerely and sweetly he responded, "I wasn't meaning to be rude, Mom." I told him I knew that now and thought I should explain that it wasn't appropriate. We are still working on polite ways to show you disagree with what someone is saying.

I'll probably have more examples to share as John and I continue to learn how to communicate with one another and I try to help him navigate the social world that eludes him so. For now, I hope that this might help some of you see a new way to interact with children on the Spectrum.
And maybe have a little sympathy for that mom who has a stressed out kiddo and is choosing to deal with that behavior in a way that will change it for life as opposed to "making" them apologize to the kid they threw sand at or whatever consequence seems appropriate to our experience with neuro-typical children. In fact, maybe those kids could use the same kind of teaching rather than punishing consideration.

I'm having to rethink all sorts of things these days.


JS said...

Thank you so much, Holly! You have thrown wide open a new door of understanding in my heart. God bless you all.

Mary said...

Thank you, Holly! Sending it to DH :)

Abigail said...

it is really interesting reading about how you are working through John's Aspergers.

My husband only recently realized that he is a borderline Aspie. as a child and young adult he muddled through social interactions, and only finally became comfortable and more understanding of how "us humans" behave and interact as an adult.

i know you already have a lot of info for helping John cope, but i figured some info from the perspective of a grown up Aspie who had to teach himself might help (if not, feel free to ignore ;) )

i asked Bill, and he said some of the books that really helped him lean an understand how to interact with people were:

almost anything by Dr.Paul Ekman, his research centers mostly on facial expressions, body language and etc, usually in light of detection of emotions and/or lying, but Bill said it helped him decipher other people's "nonvocal communications" during social situations.

Dacher Keltner is a student of Ekman, and Bill also found his books helpful.

Bill is also a voracious reader of etiquette books, he especially likes Emily post and Judith Martin, and I think there are several etiquette books geared towards children and/or families.

"the Art of Mingling" by Jeanne Martinet
"the Art of Conversation" by Margaret Shepherd
and P.M. Forni's books on civliy
John Gottman's "Raising an Emotionally Intelligent Child" may also be helpful.

Anonymous said...

So glad I read this. And I can't say it enough - God prepared you (and Theo) for John. And he is right where he needs to be. Like you, I am so thankful for this new diagnosis that will help us all - especially through your explanations - help us understand him better.
We love you, John :)
The Callans