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Why My Son Is Not the Face of Autism

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“He doesn’t look like he has autism.” 

“But he seems so normal.” 

“Oh my kid does that, too.” 

Trying to advocate for my son while also attempting to raise autism awareness can be a tricky business because my personal experience with autism is limited to one person: Mareto. Yes, I know other children with autism (which wasn’t the case a few years ago), but I don’t know them or have experience with them like I do with my son. So, when I share about autism and parenting a child with autism, it’s from the perspective of Mareto’s mommy. And sharing can be frustrating because often I get responses like the comments above.

What do you say to someone who doesn’t think your child looks autistic? Does autism have a look? Yes, I suppose it does. It looks like beautiful brown eyes that sparkle in the light. It looks like a wide smile and a face that lights up with joy over the sight of a train. It also can look frightened and confused and bothered by loud noises. Autism can look like blue eyes or green eyes, blond hair or black hair or brown hair or red hair. Autism can look like eyes that never quite meet your gaze or eyes that have learned to make contact except when overwhelmed or frightened. Autism can look like diapers at 5 or potty trained by 3. Autism can look like flapping and spinning or sitting quietly with an iPad. Have you caught on yet? There is no one look to autism.

Did my son seem “normal” to you in the ten minutes you spent with him? Well, that’s nice because he is normal. He’s a sweet, normal, beautiful boy with autism. If you’re trying to tell me that you didn’t notice any signs of autism in your limited experience with him, that’s OK, too. But please keep in mind that Mareto has good days and bad days, and sometimes he has good hours and bad hours. But if what you’re really trying to tell me is that you don’t think he has autism, then please consider how hurtful that might be to us, his parents. Please consider how that might invalidate all our efforts, all our battles and all our triumphs. What you’re really implying is that we’ve wasted all our time for the last two and a half years because he’s just “normal.”

Or what about the little girl down the street? The one who doesn’t look or act like my Mareto. Her parents are concerned and have been referred to a specialist to evaluate her for autism. But she couldn’t have autism because she’s so different from my son. She doesn’t share the same struggles or act the same way. She eats just fine, and maybe she’s even potty trained. But she has her own list of quirks, and maybe it is something… but surely not autism. In comparing her to Mareto we make a common mistake. We forget that autism is a spectrum — a wide spectrum of incredible people with varying gifts, interests, looks and struggles.

There’s no one look to autism, and there’s no one face of autism. My friend’s son loves fruit, but my son is repelled by it. They both have autism. Her son is a blue-eyed, blond-haired little boy and mine is a brown-eyed, brown-skinned little boy. They both have autism. Sometimes my son makes eye contact, and other days he struggles to meet my gaze. He still has autism in each moment. Sometimes my son will play enthusiastically with other children, and other days he hides in the pantry to escape all the noise and interaction. In each scenario, he still has autism.

My son is not the face of autism.

But he is one of the many beautiful faces of autism.

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Originally published: February 20, 2015
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