Today I read an inspiring post from a fellow blogger (Keeping up with Kya).
She was talking about the beginning of her autism journey and how she used to cling to the notion that her daughter was “high functioning.” But there is no such thing since their entire life is impacted on a daily basis and there is nothing easy about this life. I related to this because I was also that mom.
This post leads me to an epiphany of my own and a realization about myself.
While I try not to use that “HF” label because it makes our struggles seem menial, I do use it a lot. But I’m not using it to comfort myself, I use it to make other people comfortable.
Whenever I have to tell someone that my daughter and stepson are on the spectrum, I always find myself immediately reassuring them. Almost like, they have it but don’t worry—it’s no big deal, they are “high functioning.”
It’s almost like telling someone that I just got over the flu. It’s okay, don’t worry—I’m no longer contagious. It’s been 5 days and I’m on Tamiflu. Don’t be afraid to come near me!
I never realized that I did this until today.
In the beginning, I was like most parents and clung to that notion that it wasn’t going to be a big deal. We were going to catch up on skills and overcome it.
But that is not reality.
Reality is that there are major progressions and the things that are most difficult for both a child and parents will change often.
Then there are regressions. They come in ebbs and flows.
For instance, my daughter is doing karate. She is doing incredibly well. This is not something she could have done two years ago when we were getting kicked out of dance, gymnastics, and daycare after daycare.
But at the same time, she is struggling to maintain relationships with her peers. While she plays nicely a lot of the time, she struggles to control and direct everything and everyone around her.
She seems to be caught in this whirlwind where she has convinced herself that she has the be the best and better than everyone. Along with this comes extremely inappropriate responses to demands put on her.
This is an expected regression since she has spent the last six months at home with me versus her previous full-time experience at daycare with her peers. When she resumes that environment, she should progress again with prompting and direction.
High functioning is such a misleading term though, especially for kids like mine.
After the results came in on a recent IQ test performed at school, it was found that she is officially more intelligent than the majority of her peers. While that sounds great, it isn’t confirmation that she is fine because she isn’t.
Smart doesn’t equal easy.
Certain behaviors specifically related to her condition are going to continue to challenge her on a daily basis. And we are going to have to continue to battle them.
Every day beings unique challenges (and blessings too, of course).
We are going to continue to have major progressions and regressions. This is expected.
I’m trying to think of other ways to describe my kids and the first word that comes to mind is “capable.”
I have been trying to think of ways I can use it in a conversation.
“My child is on the spectrum, but she is very capable of participating in this activity.”
“She is capable and we are working on that.”
While it doesn’t replace the concept of what outsiders perceive to be “HF,” it does sound positive and that is the point. That is why I say it to people—I want to negate the looks and negative associations by making people comfortable.
When people are comfortable, they are more capable of understanding.