To Tell or Not to Tell: Is My Son’s Autism Up for Discussion?

by J

So, I’m a pretty open person. In fact, I would say that in most cases, I tend to over share. I have a background in sales and work with the public. It is my job to be engaging and personable and that usually includes giving people a little bit of info about yourself to make them feel more at ease. Though, I won’t lie; I’ve always been that way, and I think that I really just like to talk. And, so what? Until now, that didn’t really matter; my business is my business and I can choose to share it with whomever I please.

In the past, I’ve never had problem’s keeping S’s, or any other family member’s, information private because it is their personal information and no one else really needs to know.

Enter autism.

Now, my son, S, his autism is just that… HIS autism. But right now, while he is mostly unaware of his condition, it is having a monumental impact on our family. It is pushing the boundaries of our finances, our marriage and our sanity. My world has become therapy sessions, group meetings, evaluations and picture charts. Every moment of my day I’m concerned with engaging someone that does not want to engage and trying to find new ways to interact with him. While this is S’s autism, it is affecting the entire family. However, you can’t un-tell things. Once someone has been told about S’s autism, it is out there and cannot be taken back.

So, for me, this is rather tough. When is it okay to tell?

For now, I have told people on an absolute need-to-know basis. Obviously S’s doctors and teachers know. I’ve told my mother-in-law and a close Aunt as they have helped us with getting S to some of his therapy appointments. I have told my sister, as she has a degree in special education and she has been of great support. My father knows, and two close friends know. I also told my former employer as I had to start taking off a ridiculous amount of time during the diagnosis process, and I only felt it fair that they know why. (They were absolutely fantastic at making sure I was available for all of S’s appointments).

But, no one else knows. Not my mother, none of S’s cousins, no other friends, no one on Facebook, not S’s hair dresser, the people we buy his shoes from, his God parents, our minister,  acquaintances…. no. one. else.

Now, overall, I have felt that this is a good approach. S has autism. I don’t like to say that S is autistic, as that makes it sound like autism is his whole self, and it most certainly is not. The average person meeting S, or even spending a great deal of time with him, might not pick up on his diagnosis, unless they are inherently familiar with autism. I mean, there were several months during the diagnosis process where we, his parents, thought he was ‘just fine’… and we were on the lookout for autism. However, it is a big portion of him, and as he gets older, it does become more and more apparent.

My hesitation in telling people is not only that it is his personal information, but that he will eventually become known as “that autistic kid” at family events and friend’s birthday parties. I don’t want S to be singled out… good or bad. I just want him to be a kid and have people include him as they would any other child. However, is this realistic? Will not telling people actually achieve in S being perceived as ‘normal’ or maybe just a bit quirky or will it eventually be so obvious to everyone that there is no denying it? As his autism becomes more obvious, it becomes harder to keep quiet and I wonder if my efforts to keep his personal information private do more harm than good. Sometimes I wonder if people would make more of an effort to engage him if they were to know why he doesn’t say hi or play with their kids.

Then, there is going out in public. I know that I shouldn’t care what people think of my parenting. But hey, I think most of us do on some level. When my kid has taken his shoes off and then demanded them back on ten times in the last 30 mins of our time at a restaurant, you start getting looks. “He really likes his shoes!” is becoming a less accepted response. When we are in a store and my two year old randomly tosses himself on the floor, picks up a piece of cardboard, lays on his back and uses the cardboard as a skateboard while holding his feet up in the air and screaming, you get more looks. And when family and friends can’t seem to get his attention to say hello, or get a response when they ask him a basic question, you get looks and some “awesome” advice on how to improve your parenting skills. Unsolicited advice is usually crap when it is given for typically developing children. When people who raised typically developing children 30 years ago, give you advice today for your child with autism, it is beyond crap. But we won’t go there.

Sometimes, I wonder if things would be easier if I just said “S has autism, so that is why he…”. But, who would that be easier for? Mostly me?.. that I can’t justify. But would it be better for S? Will the hair dresser be more patient with him during hair cuts? Will the person fitting his shoes get less irritated with him wanting them off as quickly as he wants them on? Will the parents on the playground encourage their children to try just one more time to play with S?

Will people  really be more tolerant and accepting of his quirky behaviors or will he just more quickly be written off as ‘that weird kid’? And really, is my telling or not telling really going to have that much of an impact on how he is perceived and treated by others? Are people just going to form their judgements anyway?

It’s a cruel world out there… especially for “that kid” with autism and I know I can’t protect him from it forever.