Don't Speak for Me

by Barbara Bates | More from this Blogger

08 Aug 2009 08:56 AM

I am the parent of an autistic child. Unlike some parents who can attribute the onset of autistic-like behaviors to a certain timeframe or set of events, my son was born as he is. Different. Quirky. And in my mind, perfect.

To set the record straight, my experience with autism is not that of parenting a child on the extreme end of the spectrum. I would never presume to understand what families of low-functioning autistics live through on a daily basis, and I do not speak for them.

My son has immature language skills, but is completely verbal. He makes eye contact regularly. He hugs me and tells me he loves me. He can read and write and play games with his little sister. Although he hand flaps when he gets excited, lines up his Hot Wheels by size and color, and is sometimes lost to the conventions and graces of polite society, he is engaged in life and the world around him.

I know this is not the experience of many parents of autistic children, and I realize how lucky we are.

Yet, while I recognize my experiences don't speak for all parents of autistic children, my wish is that families of low-functioning autistics and others might recognize the same. The spectrum is wide, and all our experiences are different.

I get it when I hear another parent rant about autism. I empathize with the desire to have a whole, healthy child. I want that too. But in my mind, I have one already. A whole, healthy, autistic child.

I don't think my son is damaged, or dysfunctional. He's just different.

Long before we had a diagnosis of autism, I knew we had a child who wandered off the beaten path. He was fascinated with flickers of light and sparkles in the water that others typically missed. He saw wonder and magic in places others didn't notice. Through the years, he has never stopped amazing us with the wonderful ways he views the world.

A world he views through autism-colored lenses.

So when you talk about "curing" autism, it makes me bristle just a bit. Not because I don't believe you have good intentions or want the best for autistic children and adults. But because I love my son just as he is. Because different doesn't always mean defective or undesirable. Because my son and so many others like him have gifts because they are autistic, not despite it.

Some of the greatest and most talented minds in history have been those on the autism spectrum. Albert Einstein, Vincent Van Gogh, Sir Issac Newton, Charles Darwin, Michelangelo, and even Bill Gates are among them. What would our world look like today if they had been "cured" of their eccentricities?

Of course there are challenges.

Sometimes the fact my son is high-functioning works against us. People look at us critically. The disapproving stares are impossible to miss. People judge him, and they judge us as parents. They think he's undisciplined or my husband and I are ineffective, when really, we're just a family trying to do the best we can.

(And no, just for the record, discipline won't cure autism).

Even so, most of what we struggle with are the inabilities of society to adjust to anyone who exists outside the realm of "normal." Handflapping might be unsightly to neurotypicals, but what harm does it cause, really?

I won't believe my child is dysfunctional just because he has quirks others might not be comfortable with. I'm not interested in behavioral "doggy" training to make him appear more "normal," because I think it disrespects the person he is. He is autistic. His behaviors are normal for him, and he's happy the way he is.

Why, instead of expecting him to change to suit the 'norms,' can't we simply be a more tolerant society? Whose planet is this anyway? A world without our many individual differences would be a much less interesting and colorful place, indeed.

I stand beside all parents of autistics who want a better life for our children. I hope for a cure for the barriers to development so frequently found alongside autism that prevent our children from living full and complete lives. But I do not hope for a cure for autism itself.

Autism is a different way of thinking, a different sort of wiring. It's pervasive. It colors every thought and experience of who the individual is. It's the reason my son sees magic in ordinary places. Autism is a part of him as much as his blond hair, hazel eyes, and infectious laugh. How could I wish it away without removing the heart and soul of the very person he is?

Our human race has a wide, wonderful range of diversity that should be celebrated. There is a reason and place for us all.

Today you need only look as far as the biggest autism 'advocate' organization to find the many negative stories out there about raising autistic children. Tales that paint autism as a thief that steals children, hopes and dreams, and even sanity. But that is not my story, nor is it the story of many other parents of autistic children I know.

I freely admit that autism was not the life I dreamed of for my child. I admit there are days I want to sit and cry because it's hard, and I don't have the answers. But that's just life, and life is full of challenges brought on by things both good and bad.

There are more days that my heart nearly bursts with the overwhelming joy of loving a gentle boy with sparkles in his eyes and a happy heart. I am proud this child with all his quirkiness is my son, and am sometimes humbled by the very same thought. He has as much to teach me about life as I have to teach him.

I will always advocate for him and do my best to empower him to be everything he can be.

But please, don't try to cure my son. Be tolerant and kind. That's all he needs.

And when you speak about defeating autism, don't speak for me.

Learn more about Barbara Bates

Barbara Bates is a freelance writer and mother of two. Her work additionally appears in Good Sense and Military Spouse magazines, Military.com, and the Department of Navy LIFELines Services Network.

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Michele Cheplic (37339) 08 Aug 2009 09:30 AM

What do you make of the claims that diet can affect kids with autism? Jenny McCarthy has been battling experts about this topic for a while.

Barbara Bates (15) 09 Aug 2009 06:43 PM

My experiences with diet modifications have not brought about any changes for my son, although I have friends that fall on both sides of the camp. Some of them swear by the gluten/casein free diet, or the usage of certain supplements, while others have tried and discarded these approaches. My personal thoughts are that autism, in it's many variances, is a syndrome (versus a disease), and it's symptoms might find causes from different sources. In the same way motion sickness, a virus, or irritable bowel syndrome can cause the same unpleasant gastrointestinal symptoms, the treatments that bring relief for each vary. Yet, although I think there is too much anecdotal evidence to completely discount the use of these alternative therapies, I do not share the opinion that autism can be cured.

Gianna559 (29) 07 Sep 2009 01:57 PM

At my son's early intervention center. I was asked, "What do you like about your son?" I answered, "It's interesting you ask that. What makes him different from other kids, symptoms of his 'disability', is what I love about him. He's always exploring. He's got such a free spirit."