Early in my career, I would use the term ‘autistic child’ when describing a case while writing papers. My wife, the speech pathologist ever so connected with her families, would always correct me that it’s a ‘child with autism’… the child has autism…. autism doesn’t define the child. I would change the wording to appease her but thought it was kind of silly, surely there’s no real difference in semantics. Well, I am realizing that I was wrong.
Not so much about the phrasing as I still maintain these are interchangeable; however, the sentiments behind the perception of children with autism are very real. I have long expected Caleb to be seen as autism incarnate by strangers when out in public. They don’t know Caleb and will not get to know him so it’s whatever, no skin off my back. What’s becoming more apparent is how close friends and family perceive him. To some, he’s Caleb this cool kid who also has autism much like other kids might have asthma or diabetes. Others see Caleb as autism, full stop, and all conversation must revolve around this. The fixation is not something I had anticipated.
Caleb’s godfather is a great example of not defining Caleb by his autism. Heck, I don’t think I’ve ever even heard him say the word autism over the past several years. This isn’t because he doesn’t know or doesn’t care, but rather that he’s just interested in Caleb being Caleb. Sharing a new word that Caleb just said doesn’t evoke the all too common response of “how many words should he be saying” or “that’s great but when will he talk normally?”. I really appreciate this and I know Caleb will too. He deserves to stand on his own without every action being constantly put under the autism microscope (not microscope with autism, Erin!).
The truth is that we don’t know what’s going to happen, and you probably won’t either with your child. The best we can do is to try our utmost to provide Caleb with all of the tools he needs and take one day at a time. Sometimes when Caleb does something awesome, Erin and I will say “Yeah! Take That, Autism!”. But sometimes, Caleb just needs to hear “Awesome, buddy!” and that’s it. He can be awesome on his own without needing his awesomeness to always be defined in relation to autism.
I don’t want to this sound critical, or even forbid, whiny. I really appreciate having friends and family who love Caleb and have his best interests at heart. I just don’t want them to miss out on Caleb himself though with the autism filter removed. The Caleb who enjoys sitting still while bird watching, figured out how to make his own roller skates out of toy cars, and has already taken a strong interest in helping me build with tools.
….He’s a pretty cool kid once you get know him.