Justin is 3-years-old.  He has Autism.

Some folks I’ve met have a hard time with me saying that – that he has Autism.

Very early on in our journey with Justin, we had to make a family decision: do we keep his diagnosis private, or do we make it a part of our lives, accepting it as matter-of-factly as the fact that we all wear clothes?

Our decision was the latter, and this is why:

Our world is full of labels.  Some labels are useful, helpful even.  Others are not, and may even be harmful.  We decided that with Justin’s diagnosis, “Autism” was a useful and helpful label.  Some might think, “Well, that’s a good crutch!” or “Wow, so, um, you use that whenever you want sympathy then, right?”  and I’m sure some people might use it that way.  That has never been our intention.  Early on, the label validated our concerns.  It gave evidence to our assertions that Justin, our first and only child, is not easy to manage – that our struggles were more than that of most first time parents adjusting to a new role in life.  In that regard, the label of “Autism” was a breath of fresh air.  It meant that others knew we weren’t crazy for being tired all the time – because their Autistic children didn’t sleep either and it had nothing to do with “sleep training”.

My husbands assertion was that we could make use of a label that meant something – that actually gives information – or we can let the world label our son.   Having attended public school ourselves, we could think of some of the labels he’d get that would be far worse than “Autism” - you know, like “retard”, “spaz”, “loner”, “jerk”, “creep”, and “weirdo” to name a few.

We are fortunate that Justin is as high-functioning as he is.  He has words even if he doesn’t always use them properly, or for the same reasons as us “neurotypicals”.  But unlike our friends with physical disabilities, you can’t see Justin’s label on his face.

I’ll never forget the first time I told a stranger that Justin had Autism.  We were at the soft play area at our mall and it was time to go.  I called for Justin, counted down “5 minutes” as always (we learned early on that giving him a count down provides a consistent and non-negotiable endpoint), and called for him again.  He almost never responds to his name being called.  It’s not personal.  He just can’t filter out my calling his name from the other noise and commotion – not to mention, in Justin’s world, words are used for describing objects, not for more complex meanings like “come here”.  Justin was running around the play area, feeding off the energy of the other kids playing chase (he gets excited and runs, but does not ‘get’ that they are playing a game with any structure – to him, they’re just enjoying running for running’s sake).  When I called again, then approached him, squeezed his shoulder and got down on his level and told him for the 2nd time that it was “time for socks and boots” and he ran away again, a woman I’d been shooting the breeze with said to Justin, “You need to listen to your mommy.”

Now, I totally understand that fear of strangers can be used to a correctional capacity in toddlers, and I definitely appreciate that.  In this case, she had no idea why I was just letting it go every time he’d rebuff my request.  For myself, I was using it to gauge the best way to get Justin into his socks and boots.  I told her that it was okay and that he wasn’t trying to be rude.  I went, got on Justin’s level (though not looking him in the eye), and told him, “Justin, it is time for socks and boots” and I picked him up and calmly sat him in the seat at the edge of the play area next to the woman and before putting on socks grabbed Justin’s shins and pushed his knees hard into his chest, repeating it several times.  With each compression Justin calmed, and after 3-4 compressions, he was able to sit still long enough for me to put on his socks and boots.  The woman just sat there aghast.  I could see in her face, “she’s not going to reprimand him?  what the heck is she doing?  How is that going to help him comply?!”.  When it worked, I just smiled and said, “My son has Autism.  It means it’s very hard for him to listen and understand my words, and when he’s excited like this, these ‘squishes’ help him calm and focus.”  What did this accomplish?  Well, Justin let me carry him peacefully from the play area; the woman was clearly in shock that I hadn’t lost my cool, that I wasn’t afraid of looking crazy with my odd approach to the situation, plus, I taught her something new about Autism; and I felt good knowing that I’d appropriately managed my son’s needs AND accomplished the task at hand.

Wha-bam!

There are tons of reasons to share about Autism to people.  Awareness is a faculty of advocacy.  Some studies show that as many as 1 in 148 children have some form of Autism Spectrum Disorder.   Socially, Autism is characterized by behaviors that often look like defiance, rudeness, being aloof, or just plain naughty.  I feel that the more aware people are that Autism is in their midst, the more patient and understanding we can be with one another.  Yes, there are crappy parents out there, but we all need to bear in mind that there is often more than meets the eye in our casual observance of other people’s children.

Whoa whoa whoa!  “Autism” is an excuse for poor manners?  Certainly not.  BUT.  Teaching social niceties, like not screaming in a restaurant (especially when screaming outside is okay), to a child with Autism is VERY difficult and not an exact science.  They often lack the ability to generalize or categorize when it is okay vs. when it isn’t so you have to teach it anew in EVERY situation – over and over again.  This of course means that there will be moments where, for example, ”breakthrough screaming” may occur with little or no warning.   It’s a lot like lion taming.  For all the training in the world, a lion is still a lion and a wild animal.  An Autistic child will, despite all the coaching in the world, have meltdowns from time to time (and, per Murphy’s Law, these meltdowns WILL occur at the least appropriate moment).  And since we don’t keep Autistic children in cages in this country, there will occasionally be casualties.  But I digress…

Other useful labels:

“Biohazard”

“Women’s Restroom”

“Cinnamon”

“Hospital”

“Expires 12-24-2006″

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