Friday, April 2, 2010

Autism Awareness

As you wake up to your hot cross buns and dream of the chocolate the Easter Bunny will be dropping off this weekend, I just want to point out that it is also World Autism Awareness Day. I'm sure most of you already have some awareness of this issue. I mean really, who doesn't have a kid on the spectrum these days?! But just in case you don't know anyone with the disorder, I thought I'd put something out there in hopes of raising awareness just a little. I can't speak for all parents of kids with autism, but this is what I would personally like people to know.

We all have our causes, so I'm not going to try to convince you to drop your paycheque on a donation. But there is something you can do to help that doesn't require a ridiculous level of commitment or time. For a parent dealing with this problem, your empathy can actually go a really long way.

Here's what we know. When certain parts of the brain are not working the way they should be, you get a sort of sensory chaos. When I'm working in my kitchen with the radio and dishwasher going, the fridge turning itself on and off and my awesome lighting flickering every three seconds, and then Firstborn comes in and asks me a question (usually a hypothetical one involving zombies), my brain can tune out all those background distractions and focus on answering him. For an autistic child, that ability to filter stimulus is seriously dysregulated. Everything comes at him with equal intensity, or the things he should focus on aren't coming at him with the intensity they should, and others are coming in at a level that is actually painful. It's a brain glitch that makes it literally impossible for our kids to naturally learn the things they normally would, like how to communicate, or how to behave in socially appropriate ways. They can learn to cope in familiar environments by doing things the same way over and over, and for this reason they might like rigid routines. I don't mean to oversimplify here, or to make generalizations. This neurological mystery affects each child differently. But for the sake of creating a little understanding, I want to give some background as to why some of our kids do the things they do.

So, at home or at preschool my kid is comfortable. He knows what to expect from his environment. But what if I take him to Wal Mart? Or to see his brother perform in the school theatre with the choir? All of a sudden we have a whole new set of unfamiliar stimuli attacking his senses: crowds of people, artificial lights, colourful displays everywhere, music, new smells. With that kind of overload, and little to no verbal skills to communicate what they're feeling, is it any wonder our kids get so stressed they start making noises, running around like crazy people, or throwing tantrums?

I gave Rosemary's Baby his pseudonym long before the diagnosis. Actually, it was long before we had an inkling that anything was up at all. We just thought we had a naughty little monkey who liked driving us crazy. But that illustrates my point. Autism is not something that the untrained eye can recognize very easily. To a passerby, a normal-looking kid throwing a hissyfit at the mall is just a spoiled brat whose parents don't know how to keep him under control. And I admit, in years long past, when I was young enough to think I knew everything, I would see these situations and think, "Duh! Get a grip on your kid!" Thank goodness I at least had the sense to not say it out loud. Because for the helpless parent trying to keep a lid on things, the scorn of strangers can turn an already stressful situation into a downright unbearable one.

I truly believe that the majority of people in the world are understanding. They see a screaming kid and they'll give you the "been there, done that" grin. But you do occasionally run into someone who (well-meaning or otherwise) wants to fix your kid's behaviour for you, or give you parenting advice, or just say something downright rude. So, I ask you all to reframe your perspective when it comes to seeing kids acting out in public. It's true that the kid throwing a fit, racing around like a tasmanian devil or suddenly yelling out for no apparent reason might just be being naughty (anyone with a two year-old knows this), but please always assume that there might be more to it. Give a sympathetic smile and keep moving. You'll have the best karma ever.

One last thought. Wherever possible, I like to promote a "we're in this together" attitude for parents of kids on the spectrum. Whether we take our doc's advice as gospel or stubbornly stomp out our own path, follow Greenspan or Lovaas, love or hate Jenny McCarthy, every single one of us is fighting for our kids' place in this world. Whether that be a place where they are just like everyone else, or a place where they are accepted and valued for their differences, we are doing a job that is harder than any other job. And I know about hard jobs. I used to teach Sex Ed to sixth graders.

I'm personally not partial to the term Autism Mom. I prefer the blonde one's Mother Warrior. But whatever you choose to call yourself, and whatever you're doing in support of your child, do know that there are many of us out here who have your back.

We need more research. We need compassion. We need understanding.

Now, go spread the word.


Suburban Princess said...

Well said mama!

Stephanie Faris said...

Thank you for the reminder! It's alarming just how prevalent autism and Asperger's are these days. I seem to learn more about it with each year.

In Real Life said...

YES! Love this post!
I totally agree with you that as parents with children on the spectrum we need to stick together and support each other regardless of whether or not we are choosing different paths with regards to treatments, therapies, etc.
And yes, we need more compassion - I think that the world in general would be a much, much better place if we could all show a little more compassion for one another.
Thank you for writing this!

Melanie Jane said...

Very well said.


I have to hand it to you, Mama, you have to be one of the strongest women I have ever run across! All this and a husband in the service. Such strength!

Deb Neerman said...

A fabulously well-written essay! I hope everyone reads this ... or something similar today.

Autism is occurring at an alarming and ever-increasing rate ... this disease WILL affect your family; it's just a matter of time. In fact, I don't know a family that isn't dealing with autism. Sad and scary, but true.

Lisa Kind said...

I agree...well said! I'm a teacher who sees (and deals) with this all too much of late. I have had to change my approach to these sorts of behaviors many times.

Savvy Gal said...

Very well said!!!

Sunshine and Shadows said...

Great post and advice. Thanks for saying it so well.

Tater Tot Mom said...

Awesome post. I have never heard autism explained so matter of factly and it gives me a new vision of what the disorder really is.

Unfortunately there are always those people that think they know better than doctors and parents and give their homegrown advice though they've never dealt with you situation. It would be so nice if those people would actually show compassion, I agree.

Janine said...

Thanks for all this info Wendy and yes WELL SAID!!!

Jenn said...

I've always like the term Mama Bear too. Kinda soft and cuddly until you get between me and my kids so to speak. Or in my case, till someone annoys me.;)