So, here’s the thing… I don’t really fit in
with the parents of “high-functioning” kids, because most of them have kids with Aspergers. In fact, many people seem to think HFA and Aspergers are synonymous.
Then, the communities, message boards, etc. for Autism in general seem to spend much of their time making snide comments about “cute Autism,” meaning anything other than severe/”low-functioning” cases.
My daughter is somewhere in between. We’re stuck in the middle ground of “moderate” (occasionally, on a good day, “mild”) Autism.
I feel very alone and pushed aside at times. It’s like being in middle school again: I’m not geek enough for the “geek table,” not cool enough for the “cool kids” table. Neither side wants to claim me.
It’s similar to my somewhat “middle of the road” religious beliefs. I’m not “religious” enough for some people, but too spiritual for others.
When people who don’t have much experience with ASD are told my daughter has Autism (or is Autistic, whichever phrasing you prefer), they either picture a severe case and say “I’m so sorry,” or they say something like, “oh, that just means she’s too smart for her own good, right?,” because they picture Sheldon from The Big Bang Theory.
My daughter is wedged somewhere in between someone who will need to be in a group home or assisted living, and someone who will just “blend in” and be considered “quirky.”
Of course, part of the problem is she’s only five years old. It’s really hard to know now how she’ll be as an adult. It’s hard to measure function in a child, in my opinion, especially when they’re stuck in the middle and it’s not one end of the spectrum or the other.
If she stays exactly as she is and makes no progress over the years, then, yes, she’ll be staying at home with us her whole life.
A lot will depend on just… maturity and waiting. The old “wait and see” I’ve grown to so despise.
The rest will be about therapies, interventions, supplements, etc. and the progress made on that side of things.
Who is to say where she will fit in at my age. All I know is, as her mom, I feel kind of alone.