Our son’s diagnosis with Autism, specifically Asperger Syndrome, was a big piece to a very unexpected puzzle our lives had become. I’ve not written about it since last December because honestly, I’m fiercely protective of our son’s privacy. How can I balance protecting his privacy with sharing information I think can be helpful to others? This is my attempt.
Asperger Syndrome is an autism spectrum disorder considered by many to be the mildest and highest functioning. Because of this, many children go undetected for quite some time or undiagnosed. Once social interaction and life demands increase, symptoms begin to show much more and specific characteristics can vary. For example, some children have difficulty making eye contact when speaking, lack social and conversational skills, and fixate on specific subjects. (Of those three examples, only the last applies to our son). Studies suggest boys are four times more likely than girls to have Asperger Syndrome. When our boy was about seven, I wondered if he may have Asperger Syndrome. My curiosity was brought on by his disdain for being touched or hugged, which I found to be unusual considering we didn’t experience this with our three other boys. After searching around about “the signs” there were things that didn’t match, like the fact that he was very social and had lots of friends, so I dismissed my hunch entirely.
Had I spent more time really investigating autism, his life and our lives would have been much easier.
I can’t stress enough how important having a diagnosis and understanding what’s affecting your child is. Yes, it’s very helpful for the family, but even more so for the child. For our son, his struggles really became an internal affliction – feeling different, seeing the world in a different way, and processing life differently than others. He slowly became deeply depressed, yet he nor any of us understood why. We visited doctor after doctor who couldn’t see beyond the fact that he was depressed. We needed to get beyond that. Yes, he was depressed, but why?! One year after his diagnosis we now understand that many children with Aspergers suffer from depression, brought on by their differences from the mainstream world. For our boy, getting the diagnosis changed everything for him. He was able to understand that yes, he sees the world differently, but he’s not crazy, and that’s what he’d been thinking all along. I’m different, so I’m crazy. I’m crazy = there’s no hope for me.
A few of the outward signs in our son:
As a child, he was very sensitive to loud noise.
Doesn’t like to be touched.
Fixation on a specific subject: When he first began to walk he began fixating on basketball. He’d climb out of his crib at night and shoot baskets into his little Fisher Price hoop. Over and over and over and over…. saying “Shoot a hoop”. “Shoot a hoop”. “Shoot a hoop”. Put him in his crib, he’d climb back out. Repeat Repeat Repeat. Night after night. When he began to read, the fixation turned to baseball. He’d read the baseball encyclopedia of stats and memorize each player’s stats, from the beginning of baseball to current day. He’d listen to old recordings of the World Series, talk incessantly about anything baseball, and collected baseball memorabilia. On the playground, he’d create baseball teams and became manager of players, complete with contracts that he’d write at home and have his friends sign.
Highly intelligent and very well read. It’s normal for him to check out 20 biographies at a time at the library and read each one. (Of course, each book pertaining to his favorite subject).
I want to tell you that life after the diagnosis has been easy but it hasn’t. The reality is that learning to live with and manage this is hard work and we take it seriously. Sometimes for half a second, Colin and I wish that we could just take the easy path and not sweat grades, rules, and parenting quite so much. It’d be easier in the short term, that’s for sure. But that’s not what we signed up for when we made the choice to have these boys of ours. We’re obligated to the boys and this world to create fine men, show them the way, and be loving in the process. And I’m not telling you this so that you’ll praise us for our parenting. I’m telling you this because it leads me to the last part of what I want to say today about families living with autism.
Although this isn’t our experience, there are many families with children whose Aspergian meltdowns occur in public. At the store, school, the pool, parties, and family gatherings. I’m not saying any or all occurances you see of what the world would describe as “poorly behaved children” are related to autism. I just ask that when you see this happening, that you show kindness, refrain from judgement and hold these families in your heart. They’re doing the best they can, whatever their story may be.