Don't ask...Don't Tell?

For almost a year after Justin's diagnosis, I hardly ever uttered the word autism. The only people that were aware of our situation were close friends and family. If the issue did come up with others, I would simply say that he had a speech delay. Deficits in language have always been Justin's biggest issue and at the time, I could write off any other strange behaviors as him just being two. He could quite easily fly beneath the radar.

Then he turned three and the gap between he and his peers widened ever farther. Yet I still struggled with saying Justin was on the autism spectrum. Not so much because I was in denial, but because I was always very careful to question my motives. Does my telling someone "our secret" make things easier for him or for me?

What I mean is, it would have been infinitely easier to explain away some of Justin's tantrums and meltdowns to the other playground moms by saying "My kid's really not a brat; he actually has autism". This would take care of the questioning looks and might even illicit some tea and sympathy. Well, that may make me feel better (in a "see, I'm not really a terrible mother, my child actually has a disability" kind of way), but was this really the best thing for him?

Because in acknowledging his "neurodiversity" I risked exposing him to everyone else's preconceived notions as to what autism is. This is particularly jarring when you realize just how many misconceptions are out there. We live in a small town and the same kids that he encounters on the playground are the same kids with whom he’ll be attending school. Did I really want to risk people treating him at best with pity and at worst as an outcast?

Ironically, I think it’s the invisibility of his disability that makes it hard sometimes to know what's best. As spectrum disorders go, Justin is mildly affected. As per his developmental psychologist, she believes it is possible that he will eventually “grow off” the spectrum altogether. But if I acknowledge him as being on the spectrum, even if at some point he loses this diagnosis altogether, I feared he'd still always be that "different" kid.

The kid that other parents might not let their kids hang around with or let their daughters date because they assume he's too weird. The kid that teachers might give up on because they assume he's unteachable.

Like it or not, there is a stigma associated with autism. Even if an autistic child is acting in a way that is completely typical, albeit obnoxious, it tends to take on much serious overtones. If, for example, a typical child throws a fit in a grocery store, they are considered nothing more than an undisciplined child in need of a good talking to. When a child with autism throws that same exact tantrum, they are seen as a mysterious "puzzle" of a child that people feel sorry for.

Given these two options of how Justin could be perceived, I didn’t like either of my choices.

I must admit, I really never used to “get” what autism awareness was all about. I mean really, isn't everyone aware that autism is reaching epidemic numbers. However, the more I travel on this road I'm starting to see autism awareness in an entirely new light.

It's about teaching people that our children (typical vs. ASD kids) are in many ways more alike than different. They all have their quirks and idiosyncrasies. They are all in need of our patience and support...just some more than others.

There is a wonderful writer named Jess Wilson who writes an achingly beautiful blog about her family. Her youngest daughter, Kendall is on the autism spectrum. I stumbled across her blog quite by accident one afternoon and found that an hour later I couldn't stop reading. One of her posts in particular resonated with me in a way that nothing else ever had. She wrote, "I feel like a broken record. I’m tired of hearing my own voice. But if we don’t talk about it, who will? If we don’t stand up and say that it’s ok to be different, who the hell will? If we don’t talk to parents of typical kids, how on God’s green earth will their children ever know that they can’t laugh at the weird kid in the corner who doesn’t quite fit the mold or the odd little girl who runs up to them and starts yelling entreaties to ‘do Deebahs’ with her? That kid is my kid. That kid is your kid. Hell, we are all that kid. I am frustrated. I am tired. I am angry. He was laughed at. Not ok. Not on my watch. Not in my own back yard. Do something."

So I did.

The very next day I started this blog.

I can't say that the word autism doesn't still get stuck in my throat. Some days I just don't want to deal with any of this. However, writing has been wonderful therapy and I will continue to do so as long as people are willing to read. With this blog comes renewed strength and energy to fight the good fight. Not just for my child but for all others like him.

Because, to borrow another powerful paragraph from Jess's blog,

"I don’t know what to do other than to talk to people. To educate them one by one. If they don’t know who our children are and what they face, then how the hell can they help us protect them? If we hide, do we not bear some of the responsibility for the teasing? Are we not to some degree complicit in making our children angry sad? I refuse to believe that there’s nothing we can do. I’m tired of helpless."

Rock on, Jess. You are truly an inspiration.