It’s been a week of revelations.
We were vacationing in Tofino last weekend and one evening at the resort’s indoor pool we were joined by two young girls. They were best friends, avid swimmers, and engaged me in much conversation as they horsed around with each other. I found out they were the same age as Daughter, and was then struck by just how different my girl is from others her age. She watched them with a mixture of curiosity and shyness and I wondered if she, too, felt the differences between herself and them.
Later that week, an incident occurred to remind me that Son still cannot be left unattended with small children. Fortunately nobody got hurt, but his propensity to push toddlers over appears to be as strong now as it was when he was younger. This hadn’t happened in so long – mostly because of preventative measures – but when it did this last time I was struck by the realization that he is long past the age at which he should have outgrown this. At age 6.5 this behaviour was now firmly in the camp of “not normal”.
As with all these incidents, I filed the information away in my mind, pondering and wondering and trying to make a pattern out of all this seemingly jumbled information. It was like I had dozens of puzzle pieces floating around in my mind with no idea of how or even whether they fit together. And then, all of a sudden, within a few short days they all came together to form a very clear picture. I’m now quite certain that both my children have Asperger’s Syndrome.
It started when I was venting to my best friend, telling her of my frustration that while I could predict these behaviours in my children, and could describe the circumstances under which they were likely to occur, I really didn’t understand what was causing them. I was finally coming to realize that they weren’t just “behind” in these behavioural issues, but that they were clearly different from other children their age. “He’s not going to grow out of this any time soon” is a common phrase, so I’ve learned, in the world of AS when parents first begin to consider that something else might be going on. My friend recognized this expression immediately because her 22 year old son was diagnosed with AS when he was 11 years old, and she has been on this journey for a long time. She began to ask me some very specific questions which, as I answered them, formed my first clue as to what the “big picture” might be. Son’s propensity to knock people over when obviously not angry or malicious made sense in the context of an inability to understand social conventions, something I had never realized or thought of before but which, upon considering, began to explain so much that I had puzzled over. The pieces began to fall together and a picture was starting to emerge.
I was so excited by this information that I went the next day to the library and took out what is considered to be the best reference: The Complete Guide to Asperger’s Syndrome by Tony Attwood. The more I read, the more I became convinced that Son has AS. I won’t go into detail as to the diagnostic criteria but it fit him to a tee, including his incredible food sensitivity (i.e. he’s extremely picky about what he eats) and his sensory issues (like not being able to handle the sound of the toilet flushing, or not feeling the cold). Even his aggressive tendencies when frustrated and angry fit into the category of anger management problems, also common in AS kids. I cannot tell you what a relief it was to suddenly understand where all these behaviours were coming from. While most kids intuitively pick up social conventions and the ability to read body language, etc, AS kids struggle and often just can’t. My son’s tendency to tackle a child he just met to initiate play, or to smash a child’s Lego creation because “I shot it and it’s supposed to explode” without being able to empathize with how that child would feel…I can’t begin to tell you how wonderful it is to think I may finally have the picture on the front of the puzzle box, and my growing excitement as I take each piece and find its place in the big picture, seeing how they all fit together.
Son’s aggression issues (and when I say “aggression” I include acts of physical aggression that have no malice or ill intent behind them) have dominated my concerns over the years, but certainly I have had my problems with Daughter. Her issues were simply not focussed on as much because at least I didn’t have to worry that someone would get physically hurt. But as I got to the section of Dr. Attwood’s book regarding AS in girls, I was stunned to read a section that described her so perfectly that it could have been written about her alone. Dr. Attwood believes that AS is less frequently diagnosed in girls in large part because they have better coping mechanisms, and because the underlying issues manifest themselves differently. This explains why I hadn’t ever considered it for her (whereas we had thought about it back when Son was 3 years old; he was evaluated and it was ruled out, but now I learn that it’s almost impossible to diagnose prior to age 6). As with Son, reading about the issues Aspie girls face made me understand Daughter in a way I never had before. Suddenly her bizarre behaviours (which, being uncommon, were often overlooked as her being “eccentric”) made sense and again the puzzle pieces came together rapidly to form a picture of Asperger’s Syndrome.
It’s funny how life works sometimes. Two days after I had that first conversation with my best friend, I ran into another acquaintance (“M”) with whom we’d spent the day a month or so ago when she visited the Island and stayed at the home of a mutual friend (“L”). I saw both M and L together the other day and told them about my suspicions of Asperger’s. Turns out that M was a schoolteacher before having her two kids, and when we’d left her and L that day last month when we all visited together (and she’d gotten a good dose of both my kids’ issues) she had turned to L and said “I’m quite certain her kids have Asperger’s.”. They discussed whether or not to share these observations with me but eventually decided not to say anything, since some people can take it in a very negative way. Now that the cat was out of the bag I asked her to “tell me everything” and M shared her experience with Aspie kids in her classroom over the years and we all had a laugh that so soon after she’d talked about it with L, the information had found its way to me.
As if that weren’t interesting enough, I then informed our Learning Consultant of my suspicions. My kids have been in our homelearning program for four years now (2 years for Son) and both have had the same LC all along. It’s Annual Review time right now, when the LC’s pour over the year’s worth of reports and put together a summary. Turns out my LC had independently been developing the same suspicions about Aspergers – as she reviewed the reports (in which I often detail social interactions) she saw a pattern emerging, and had consulted with someone else familiar with AS. She had been composing an email to me and had finally decided to just phone me to discuss it in person when I sent her the message saying we were considering AS. I felt in my heart that this was yet another sign that we are on the right path.
If you haven’t figured it out already, I don’t consider this to be a bad thing at all. The truth is, I couldn’t be more excited and happy. It is such a relief I can’t even put it into words. Finally, I have a context into which my children’s behaviours fit perfectly. Finally, I can understand the errors in processing and thought that lead to these behaviours. Ever since Son was a toddler and first started being aggressive I have puzzled over the single question – WHY? Whenever Daughter would fly off into a rage, directed at some poor innocent child, I wondered – WHY? Now I have answers.
My kids are who they have always been, and this discovery hasn’t changed them one bit. It’s not like I’m suddenly dealing with things I didn’t know were there, like an illness or a cancer. Instead I’ve found a framework that describes and explains their issues, and best of all provides me with hope that I can find support and guidance for them. As much as I have always loved them and honoured their differences, I find that this has made me feel even more sympathy for them as I begin to understand just how much they’ve been dealing with in their short little lives. I feel as though I will be able to be even more patient with them, now that I can see just how difficult “simple” issues are for them. And I’m excited about the future as I learn about all the programs that are available for them.
Many people with AS emphasize that it is not a disability, it is merely a different way of being. Like a stranger in a strange land, they need help understanding the customs and ways of doing things. But when that help is provided they can be successful, happy, and lead fulfilled lives. I’m very positive about the future, and you can expect my blog to regularly delve into this fascinating world as we begin this amazing new journey in our lives.