Parentella

April is National Autism Awareness Month, which makes me think back to the early days of our own journey. Back then, very few people seemed to know what autism was or to have met anyone with autism.  That’s changed hugely in the last fifteen or so years: these days it’s rare for me to meet someone who doesn’t have some connection to autism, either through family or friends.  It’s not surprising, since the current diagnosis rate is something around 1 in 150.

Back when our son was first diagnosed, autism felt much more rare.  It was hard to find information, hard to find clinicians, hard to meet older kids and adults on the spectrum.  I’m glad that’s changed. I’m glad that parents and teachers today have a wealth of information and shared knowledge to choose from.  Of course, not all the information out there is accurate.  It’s important for parents to find an expert they can trust, one who can distinguish between actual peer-reviewed scientific research and the latest fad.

One of the questions I’ve been asked most as someone who writes about autism is “Should we use the label?”   This can be broken down into several more precise questions, such as “Should we tell our child he has autism?  Should we tell the school?  Should we tell his peers?  Should we tell our relatives?” and so on.

There’s no right or wrong answer to these questions, but I can tell you what my own feelings are on the subject: the more we all get comfortable with the word autism, the less power it will have to spook people.  Back in the old days, when we said our son had autism, people only had Rain Man as a reference point; the more people learn about autism, the more they realize that the label covers a wide range of very different individuals.

On a practical level, I’ve found that schools, camps, and other programs are far more likely to be supportive and helpful if you’re upfront with them.  Of course, there are people out there who hear a word like autism and react negatively, who think, “This is going to be more work for me.”  But I’ve met very few people like that.  Most educators and counselors simply want to know the best path to a successful outcome for everyone involved and recognize that honest discussion benefits everyone.  Interestingly, kids are often the most supportive of all: even students who might be rude to a peer who simply seems “weird” will turn sympathetic and helpful if an adult explains that there’s a real neurological difference there.

As far as telling family and friends that your child has autism, well, that’s a very personal choice.  We were always very open about our son’s diagnosis, feeling confident—and rightly so—that the people who cared about us would be supportive and positive and understand that autism is a diagnosis, not a prognosis, and that our goal wasn’t any different for him than for our other kids: that he fulfill his greatest potential.

Within our immediate family, we’ve always freely used the word autistic to describe our oldest son (who’s now an independent college freshman), just as we also freely discuss how his brother has Celiac Disease and his sister has two other autoimmune diseases.  There’s no judgment implied in any of these diagnoses, no implication that our kids should be held back or pitied because they’re not exactly like everyone else.  There is no separate “who they would have been otherwise” regret: we love them “as is.”

Not every family feels the way we do, and I’m sympathetic to that too.  There are people who feel that putting a label on a kid instantly changes the way the world views her and may lead to diminished opportunities.  Sadly, there are times where that’s probably true, and I would never judge any parent who doesn’t like to use the label, so long as he also pursues the appropriate support for his child.  Avoiding a label is one thing; being in denial is another.

In the end, though, I always come around—selfishly—to hoping all parents of kids on the spectrum get comfortable openly and casually using the term autism at home and out in the world.  The more people use it, the less weight it will have.  It will lose its shock value and people will learn not to make assumptions about any specific child.  It will become a term like any other, one that suggests a neurological difference but leaves it up to you to discover the individual with all of his or her strengths, idiosyncrasies, challenges, and talents.

image credit: http://www.gracesgraphics.com/1/compliments/234.gif

—————

Claire LaZebnik is the co-author of Overcoming Autism: Finding the Answers, Strategies and Hope That Can Transform a Child’s Life and the author of four novels, including the recently published If You Lived Here, You’d Be Home Now. Contact her on Facebook.

Related posts:

1. Let’s Celebrate “All Types of Minds” During Autism Awareness Month
2. National Autism Month
3. Autism: How To get Support at School
4. Autism Through One Mother’s Eyes
5. Autism: How to Support Students and Their Parents

Tags: addressing autism, Autism

This entry was posted on Thursday, April 14th, 2011 at 12:00 am and is filed under Guest, Special Needs Students. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.