The number of terms I’ve come across since the diagnosis of autism spectrum disorder was placed on my child.
And the list keeps growing.
Just days before we got Big C’s diagnosis of ASD, I’ll never forget what I said to a dear friend of mine with three NT kids (look at me showing off already):
“I just wish I knew some other parents with an aggressive child like mine. No offense to you, but you just don’t get it. I feel like I have no one to talk to.”
Oh, the irony.
I still feel quite a bit alone. You see, my son is tiptoeing along that line of autism or “something else” that no one can quite put their fingers on. Big C isn’t a simple case (who is really?). He qualified for autism on some tests and not on others. In fact, when his IEP was developed, the team that created it made it very clear that they bounced back and forth between the label of EDD or ASD and, in the end, went along with the medical diagnosis of ASD merely because the accommodations recommended were the same regardless. They also emphasized a strong need to re-evaluate him in three years to see if the label would even stick. It’s entirely possible it will be replaced with a new label or no label at all.
I’m not complaining. This is great news! To me, the label is really just a means to an end. Whatever the professionals wanna call Big C, I’m okay with, as long as it gets him the services he needs. It just makes it harder to find a community to call “home.” My son doesn’t have severe autism, so I cannot truly relate to those families; my son is not a “typical” kid so I cannot relate to the bulk of my friends. So where is my community? Where does my family fit in?
What all of this labeling creates is an ever-shifting line dividing “neurotypical” and “atypical.” Big C refuses to cross the line. He dances, runs, jumps, and leaps along that line which I love about him. He is uniquely himself, defying conventions, but it can be a very lonely line to walk upon because, inevitably, society tries to force us to choose a side, or else risk being an outsider.
That’s sort of how I feel right now: lost in a land of acronyms. For now, I think I’ll continue to dance along that blurry line with my little guy. He’s got some nice moves.
Oh, and make some flash cards.
That’s a lot of acronyms.
This post also appears on the blog, Sammiches and Psych Meds.