The Age Old Spectrum
I spent last night thinking about the autism spectrum. I went to bed fine but Sawyer woke us up around 11 with the flu. No good. Vomiting and sleep deprived parents is never good.
So, as I lay there waiting to sleep I started to think about the spectrum and Cooper. I always picture it as a straight line with high-functioning on one end and low-functioning on the other end. And the inevitable question….where is Cooper on that line. And an even bigger question…does it really matter where he lies on it.
The question of where Cooper fall plagues me non stop. I will start to categorize his traits. Makes eye contact….high functioning. Nonverbal….low functioning. No imagination….low. Doesn’t play with toys…low. Loving and snuggly…high. And so on. I will even give him double points for certain traits. It’s silly really.
The more I learn about autism though the more I realize it probably doesn’t matter where you fall. Like, you can’t have a ‘little’ bit of cancer. Or a little bit of SPD. You either have it or you don’t. And autistic is autistic. Maybe people with older children will disagree with me. And that’s fine. Like I always say…I’m new to this.
I am just wary of the term high functioning. I heard a mom at Cooper’s school talking (bragging) about how her son was high functioning. She said, ‘yes, my son is autistic but he isn’t full blown autism. He is high functioning.’ It was like she was trying to convince herself. As she was saying this her son was rolling down the hallway. Actually rolling and people were stepping over him.
I muttered under my breath I walked away…’I assume you begged Fraser to take him?’ This kid is in the same exact class as Cooper. Learning the same things. He’s still autistic…high functioning or not.
When I first realized (pre diagnosis) that Cooper was autistic I found A LOT of comfort in thinking he was high functioning. It was like this false sense of security. I would tell myself that because he made eye contact he was obviously high functioning and would have a normal life. And so on. I still remember saying it.
I was wrong. And wherever he falls on the spectrum we have an insane amount of challenges ahead of us. There is nothing small about it.
Maybe the spectrum shouldn’t be a line. Maybe it should be a circle. Or overlapping circles. And my kiddo is always moving around it. I just don’t think it can be straight. It’s too complicated for that.
I agree, maybe the spectrum shouldn’t be a line. But then again, even for me in a non-autism reality, very little of what I do is linear!
Wow, I could have written this post myself. When docs kept telling me my kid was super “high-functioning” I clung to it with everything I had. My son even has speech and good eye contact, but by god, one cannot call his journey through life high-functioning AT ALL. He is mired in repetitive behaviors that bring us to our knees on a daily basis. In three months we went from having the best possible prognosis to now having an extremely poor prognosis (who knows where he really is in that circle). It’s been soul crushing.
I figure people are at different places in their journeys and need to use different coping techniques to get through. I’ve been both in extreme denial and in the place of saying, “my kid will have a normal shot at life…he’s not like the others.” Reality has set in now, but I try not to take away the coping of other parents who are in a different place in their journey. It’s all just so hard.