"He doesn't look like he has autism."
"But he seems so normal."
"Oh, my kid does that, too."
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 in the same way I do with my son. So, when I share
about autism and parenting a child with autism, it is from my
perspective as 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, blonde 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 10 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. 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 are really
implying is that we've wasted all of our time for the last 2 1/2 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 ASD (Autism Spectrum
Disorder). But she couldn't have autism, because she's so very different
from my son, you say. She doesn't share the same struggles or act the
same way. She eats just fine, and maybe she's even potty trained. She
has her own list of "quirks," and maybe it's 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 is no
one look to autism, and there is 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, blonde-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 times he really struggles to meet my gaze. He
still has autism in each moment. Sometimes, my son will play
enthusiastically with other children, and other times, he hides in the
pantry to escape all the noise and interaction. He still has autism in
My son is not the face of autism... but he is one of the many beautiful faces of autism.
I found this on HuffingtonPost.com