Asperger's Syndrome - The Road to a Diagnosis

My son used to ask me, "Why am I the way I am?"

Once we got the diagnosis, I finally had an answer for him.

When I told my son, age 11, the news that he had been diagnosed with Asperger's, I took him to the library. We go there to study and do homework sometimes because its quiet and there are no video games in the basement calling his name. There are less distractions.

First, I told him that it didn't change anything about his life except that he would get more help at school. I told him that Asperger's is just a word to describe how he isn't really great at making new friends and doesn't like to go and play with the other kids too much. How he kind of prefers to be alone sometimes, and how he only likes to focus on things that really interest him and not much else. I told him that having Asperger's also explained some really positive things about his personality as well and I gave him examples. I reminded him about how when people don't think he's paying attention, sometimes he is (his teachers have always been baffled by this and I describe it as learning through osmosis). He has a very strong sense of right and wrong and would make a good police officer perhaps one day, I told him. When he becomes interested in something I defy anybody to know more about the subject than he does. It started with Thomas the Tank Engine, then Dinosaurs, Trains, Lego, Star Wars, Pokemon, and now certain video games. I noted that some very famous people are said to also have Asperger's such as the guy who invented Pokemon (no surprise there are over 5,000 of them!), Einstein, Beethoven, and Bill Gates to name only a few. Bill Gates had always peeked his interest so I knew that would get a positive reaction.

His vocabulary is much more sophisticated than other children his age and therefore so is his sense of humor, he really gets a kick out of jokes with a play on words. So after I gave him my spiel and asked what he thought of it, he looked at me and said, "I only have one question. Can I get some cheese with my Ass Burger?" So yeah, he was OK with it. I anticipated that sort of reaction since the word ass has always made him giggle.

So now that we have a diagnosis, its a little strange because nothing has really changed. It's not like all of the sudden he's a kid with a disorder - he has always had Asperger's. His entire life. So all of the things we've done, and the programs he's in, they all just continue on. The good news is that with the diagnosis we will be taken a little more seriously by the school board. Since the diagnosis, they have granted him accepted into a program next year where he can go to a different location to work for half a day mid-week as a bit of a mental break. And there is a program in grade eight that I now have a better chance of getting him into that will have him fully prepared for high school including a few early credits! This is very exciting for me as I worry so much about how he will cope with secondary school.

The Long Road to a Diagnosis

My son's therapist recently gave me something of a backhanded compliment when she said that because of how I've accommodated for him all his life, he has fallen under the radar for his condition. His odd behaviour has always been chalked up to just odd behaviour. Darn me and my lists and routines.

I feel like I've been defending him his entire life as well. People think he's rude when he doesn't respond to them because, for all they know, he has heard them say hello or ask how he is doing. But what they don't know is that when he is standing there in line with me or at a restaurant with me, or at a social gathering with me, he is not really there, but inside his head somewhere, preparing Lego armies for battle, or replaying a funny video that he has memorized over and over in his head. His Stepfather took a long time to figure out that you need to get his attention, pull him out of his head first, if you want him to say hello to you. One teacher blamed his odd behaviour in grade one on the fact that his father and I were divorced. I call her Church Lady as she reminded me of Dana Carvey's character from Saturday Night Live, except not funny.

I once took him to a psychiatrist in Toronto referred to me by our family doctor. The man we saw did not speak English very well. As a matter of fact, in the hour we spent with him, I could barely understand what he was saying. He played some increasingly complex games with my son and then announced that he had ADHD. What the heck? My son beat him at 2 out of 3 of the games, despite stuggling to understand the instructions due to the man's thick accent. I don't remember him getting up and jumping on the chair or running around the room in circles. So how could he have ADHD? How could my son, who happily spends hours assembling 3000 piece Lego sets, have attention disorder? The psychiatrist even had the nerve to recommend drugs to us right there and then after meeting my son only once! Incidentally, he told me that he was on the board of directors for that particular drug (and probably got a kickback for prescribing it). Needless to say we never saw that doctor again.

My son and I are very close. Duh right? But people have commented on it over the years as though we have an unusually close bond. I think it's normal, but maybe it appears to be more than what is normal because he needs me more than other kids need their Mom. I have his back and he knows it. Plus I like his company - he makes me laugh and makes me proud. We moved around a bit when he was young and so I was his only friend for a while. In grade two we moved to where we live now and he made a friend at his new school that remained his one and only friend up until this year. Oddly enough, thanks to online gaming, he now has something to talk to the other kids at school about because they play online together, and he joins in with them at recess now.

Accommodations:

Here are some of the little things that I find have helped my son over the years.

Keep it simple. Short and direct reminders about brushing teeth and other things help. I never give him more than three things to remember to do at a time.

Make a list. My son has a reminder list on the fridge for when he gets home from school. Feed the dog, walk the dog, get homework ready...and so on.

Limit screen time: He can get a little too caught up in make-believe worlds and carry the stories into real life. Not realizing that nobody really knows what he is talking about, my son often blurts out sentences from a show or video and doesn't get right away why I don't find it funny since I don't know the context form which the reference came.

Communicate: He knows he can bring any issue big or small to my attention. Sometimes he needs confirmation that his feelings are legitimate or valid, especially due to his strong sense of right and wrong. Other kids may not think something is a big deal, but he might feel strongly about it - this is where a discussion about staying true to yourself comes in handy.

Get help: Unfortunately, Asperger kids are prone to depression. Unlike kids with more severe disorders, they are aware of the fact that they are different. My son used to ask me, "Why am I the way I am?" Once we got the diagnosis, I finally had an answer for him. He has support groups for anxiety and depression and social behaviour that put him together with similar boys to learn to handle conflict and make friends. A personal therapist is a good idea too. Asperger kids enjoy one on one attention and thrive in that sort of therapeutic environment.

If you can't beat em', join em': Especially without a diagnosis, it was hard to mentally accommodate for a lot of my son's quirks. He has always refused to sleep on regular sheets, wear most types of fabric, wear buttons, or touch wood. And for the love of Pete, do not mess with his Lego! My son is not a fit thrower, but the few times that I've accidentally knocked over one of his Lego masterpieces it was not a pretty situation. So, with compassion for his unique pet peeves, I accommodated him. I put soft blankets on his bed, and had him test his shirts and PJs before I took the tags off them. What else could I do? Get mad? I have reached frustration over some of these things but never anger. I don't like when people scrape their teeth on silverware, we all have these little things that bother us. He just has more than the rest of us. Empathy is the key to compassion.

The nice thing about having a child with Asperger's is that because of his strong sense of fairness, he is not very rebellious - yet. He has never thrown a fit over something I couldn't afford to buy him because he simply understood my reasoning. He does his chores with only a little fuss because he understands that it is his responsibility. He is a pretty typical boy in a lot of ways, and I wouldn't change a thing about him - he's pretty extra awesome to be with, he makes me laugh, makes me think, and makes me proud to be his mother every single day.

According to the US-based National Institute of Neurological Disorders and Stroke, children with Asperger's Syndrome find it difficult to identify and express their feelings, just like those with classic autism. They find it challenging, even impossible, to connect with others, often don't hold eye contact and have trouble reading other people's faces and gestures. They speak without much emotion (or have otherwise unusual speech patterns). They need to follow schedules rigidly or else the world feels out of control. They are intensely, even obsessively, interested in one specific subject, so much so that they become veritable experts in that field. They also exhibit sensitivities to various stimuli including sounds, textures (i.e., clothing) and tastes.

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