What’s in a word? I’ve ask myself this question on a near daily basis since my son was old enough to crawl. It was evident at a very early age that something was just a little off with him. While I tend to be an advocate for acceptance of others’ differences, I was always quick to point out that my son did NOT have autism. “He has sensory processing disorder and a speech disorder,” I would say defensively. “He’s just really hyper and has anxiety and some behavior problems,” I would say. “Not that there’s anything wrong with having Autism, he just doesn’t have it,” I would rationalize.
He didn’t have the classic symptoms of autism. So in fairness, we didn’t think he had it. But as time went on and his problems became more prevalent, we knew we had to get an official evaluation. It’s safe to say that I dragged my feet on this one. I knew what the outcome would be. A part of me was hoping for a diagnosis because that meant he would qualify for more services and we would get more help. But, the other part of me was struggling with that word…the A word.
Now that we understand how broad “the spectrum” can be, we know that he should have had this diagnosis a long time ago. It’s even more frustrating when I see how much improvement he’s had since becoming eligible for more services. Still, it was an incredibly sad day when we heard those words.
Why did it upset me so much? I’m not sure. Did I love my son any less? No! Did I think any differently of him? Of course not! I knew he had problems. I knew he needed help. But this diagnosis confirmed all my fears. I had always tried to convince myself that he would grow out of these problems. The diagnosis proved that wasn’t the case. Sure, we can do a lot to help him succeed, but he will always suffer from this affliction. He will improve, but the struggle will follow him forever. My little boy is sick and he’ll always be that way.
One in 88 kids has autism. Some argue it’s closer to 1 in 30, depending on what statistics you look at. Either way, autism is hardly a rare condition. So, why are parents like me hiding in the shadows? I wish I had the strength to stand up and tell the world I am an autism mom. I wish I had the courage to put a puzzle piece sticker on my car. I wish I could say I don’t care what you think because I know my son is awesome. I wish that by telling my story more people would come to understand and accept autism. But I can’t. I’m just not there yet.
Even if I were that strong, I’m not sure it’s my story to tell. What if he doesn’t want to be a poster boy for acceptance? I tend to be an open book about myself (why else would I blog), but I worry how other people will react when they learn my son has autism. Will they have a preconceived idea of what autism is and assume my son is like that? Will they instinctively want to keep their children from befriending him? Will they be uneasy or uncomfortable around him? Will they understand why he does the things he does? These are all questions that swirl around in my head. But most of all, I’m afraid the knowledge will alter their opinion of him…especially if they don’t really understand the complexity of autism. These are all risks he should have the option of weighing before I openly discuss his story.
My son is very intelligent, so it’s possible he already knows what’s going on. But he’s young and I still haven’t told him that he has autism. He goes to speech, occupational and behavior therapy. I just call it school or “the clinic”. There are a few reasons for this. One being that I don’t want the label of autism to hold him back. He is very aware of what others are doing and I don’t want him to think he can’t do something because he has autism, nor do I want him to use autism as an excuse for not trying. The second is for the same reason I haven’t taught him our address and phone number. He is an open book and tends to tell people—even strangers—everything about himself the first moment he sees them. I don’t want him dropping that bomb on someone and creating an uncomfortable situation. Eventually I’ll have to explain it to him. But for now, he doesn’t know.
So, for all these reasons, I keep the A-word under my hat. Sure, I allude to it at times and I’m sure many people assume as much by the way I talk about him. I share with people we’re friends with and disclose on a need-to-know basis, but there’s no Facebook status update that refers to “my son with autism.” There’s no blog post on my site describing “my autistic son.” I talk about him, but I just don’t use the A-word. I’m sorry that it’s even a concept I have to contemplate. But that’s where we are….and I’m betting there are a lot of other parents feeling the same thing about his little word.
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