Shhhhh!

There is an autism support forum I frequent fairly often. I found it very early on in the beginning of our autism spectrum journey and it has been, at times, a light in the dark when I really needed one. This board and the parents who post on it have provided more information and inspiration than any doctor has been able to do for us.

A sad commentary in itself, but that's another post entirely.

Recently, one of the parents asked the question, "Do I keep telling?" Apparently, his 5-year-old son has improved and progressed to the point where he easily passes for a neuro-typical child.

I held back on contributing on this topic, until some of the other responses came back from the other parents. It seemed, as if most of the parents whose children also could "pass for NT" were staying mum about their child's diagnosis.

Now, I'm really not one to stir the pot. When it comes to message boards, I'm a lurker by nature. Especially when I read posts that have the potential for getting contentious, I prefer to keep out of it...I don't need the drama.

But this time I didn't stay out of it.

To be fair, I understand the reasons why so many of these parents keep quiet. As many of them stated, they did it for their protection; they did it so their children wouldn't be singled out; some of older children also said they did it because they didn't feel it was their "secret" to reveal and it was up to their child to discuss it if they saw fit.

I understand these reasons and yet none of them really sat right with me.

I just kept thinking of all of the parents of children who can't pass for NT. Maybe it's just me being overly sensitive, but the unspoken message seemed to be, "Autism used to be a problem for me, but it's not anymore, so the rest of you are on your own".

I just took it as such a sad commentary, that so many of these parents have gone through hell with their kids. Whether it was holding their child's hand through ABA or biomedical treatments or other types of therapy, there's no denying that life in the family where there is a child on the spectrum can be harrowing. And yet, for those lucky enough where therapy makes a difference, so many parents seemed to prefer to just keep that information to themselves.

It made me think about the picnic I attended at Ryan's school last year. Ryan and I sat across from a little girl in his class and her mom. I asked about the matching t-shirts they were wearing that read "Alex's Lemonade Stand". I remember the look on this mother's face when she told that her daughter and fought, and survived, childhood cancer and that Alex’s Lemonade Stand is a foundation committed to raising money and awareness.

There was no look of shame or apology. Just pride. Pride that her child fought with every ounce of strength in her body to be well.

What really didn't sit right with me was when the original poster wrote that his wife had "no intention" of parading their child around as "the poster child for high functioning autism".

What I really wanted to write (and didn't for fear of getting slammed and not having my message heard at all), was:

If not your child, then whose child?

Instead, I wrote the following:

...I'm not saying that I shout my son's diagnosis from the rooftops, but I also don't keep it a secret (which it sounds like a lot of parents are doing).

I guess I just get a little tired of hearing parents bemoan the fact that the most common images of autism we have in the media are the most severe of cases. Could that be because so many parents aren't willing to "come out" and say that their child who "can practically pass for NT" is (was) even on the spectrum?

Maybe it's because my son is so young and his diagnosis is still so fresh in mind. I was scared. Really scared. I had no idea if my son would ever live a fully functional life. Thank God I found this message board, because it was like a life line to me. It gave me hope that someday (with a lot of therapy and prayers) he would be okay. I can't imagine where I'd be if parents on this board weren't willing to share their stories. I guess I'm just a little sad that it seems like many of these same parents aren't as vocal in their day to day lives.

Having said that, everyone has to do what they feel is the right thing for their particular child and their particular circumstance. Maybe if my son was older or could "pass" for NT, I would feel differently. But he can't... not yet anyway...

...as far as your wife's sentiment as to her not wanting your son to be a poster child for high functioning autism, I wonder if instead you both could see him as a poster child for "hope"?

For some parents, that could mean a world of difference.