Are You Sure?

I had an interesting encounter with another parent and it left me wondering, what do other people see when they see me, my son? What do they really think?

We were at an extracurricular activity in the morning and someone had commented on how well Alex was doing. How well he was working in a small group and getting along with others. How he didn’t ‘look’ autistic, to the point of wondering if I had the diagnosis right. Like, was I really sure he had Asperger’s?

All based on a five minute encounter.

I didn’t know what to say. I found myself defending his diagnosis and, in essence, defending him.

It was weird, made me uncomfortable, and left me wondering about how the world sees us.

Because he didn’t look different, the assumption was that he wasn’t different; that he was – dare I say it – normal. There was an assumption that because it wasn’t seen, it didn’t exist.

I wanted to tell her all the therapies we’ve gone to over the years, all the hours spent at PT and OT week after week. All the social skills groups we go to, and the Child Psychologist we see each and every week.

All of this so he can work in a group for thirty minutes. I wanted to tell her, but I didn’t.

I wanted to tell her when he gets home tonight, we won’t be able to do homework because of the stress from the morning activity. That he will need all three of his sensory breaks at school and probably one right after the event, because I know what to watch for and I was seeing all the warning signs. I wanted to tell her, but I didn’t.

I wanted to tell her he was up the night before, nervous and anxious, and how he was up in the pitch dark hours before dawn – all for this one activity. How the shirt that he was wearing was chewed through and I was biding my time till spring because we have no more long sleeved shirts that have not been thoroughly chewed. I wanted to tell her, but I didn’t.

Mostly I didn’t say anything.

Because what was there to say? Autism is a tricky diagnosis. For everyone. It was assumed because the disability wasn’t seen it didn’t exist. For the most part, those with Autism are considered ‘normal’ until a person starts to see the differences – the flapping, toe walking, the perseveration, etc. And when those differences aren’t seen, does that mean it’s not there? That it simply doesn’t exist?

My short answer is no. It’s still there. Autism will never go away, it will always be there. We’ve just gotten better at disguising it. We’ve gotten better at covering; he’s gotten better at covering.

At a certain age, you come to realize you are ‘different,’ and in order to get along, you simply have to figure out how to work with others, how to work within the confines of our society.

I think he’s figuring that out…I’m not sure how I feel about it.

I think that’s what is bothering me. Someone second-guessed my child and made an assumption, all on a short encounter. That in passing judgment, a monumental error was made. It was assumed that our Autism didn’t exist, it simply went away. All those years of hard work were summarily dismissed with a quick wave of the hand, and because it wasn’t seen, it was assumed it wasn’t there.

And I don’t know how to feel about that.

Lizbeth is mom to three young children; her oldest has Asperger’s, Sensory Processing and ADHD, her second has Dyslexia. She writes candidly about parenting and everything that goes with it on her blog, Four Sea Stars.