Autism Awareness Month: The Child Versus the Label

Eddie in front of a striking high-rise building

Many children who are visually impaired are also diagnosed with autism, including my son Eddie. For Eddie, it was simply because his blindness alone could not explain his developmental delays…and we needed more answers. When he was given the “label” of autism at five, it seemed the best explanation for concerns that could not be explained otherwise.

After the diagnosis, we were met with questions and concerns from educators in the field of blindness. Is he really autistic? Are you sure it isn’t just blind “mannerisms”? How do you know that an autism diagnosis is the best thing for Eddie? For all of these questions all we could say was “I don’t know.”

I wasn’t sure if the diagnosis was appropriate, but at the time it explained why his language was behind. It explained why he didn’t seek out affection, and why he spent most of his time avoiding people, and being alone. It gave us something to provide the school, so they could attempt to determine what kind of program was appropriate for him.

It was something to hold onto, so with sadness, we reached out and grabbed it.

Now that he’s ten, I still don’t know. I spend doctor’s appointments and late night conversations with my husband rolling this question around. Because of the diagnosis, he’s had access to more programs and increased services. Because of the diagnosis, I’ve become part of another community of people I adore…people affected by autism. However, is it fair for me to be a part of that world, when the answer is unclear?

I asked that same question to my son’s neurologist, and his answer was simple. Regardless of Eddie’s “label,” he contains all of the characteristics of a child who is autistic. He benefits from the services, programs, and supports. He fits in that club, too, and for that reason alone…it’s fair.

Fair as it may be, I worry. I worry that his “label” is met with lower expectations. I worry that others will not set the bar high for him because he isn’t just blind…but also autistic. I worry that he’ll miss out on opportunities, relationships, and an appropriate education.

But when I think about Eddie, as my son, and as an individual…I’m in love. I’m in love with his quirky sense of humor, and the way he can impersonate me with accurate pitch and intonation. I’m in love with his musical inclinations and desire to dance. I’m in love with the way he runs faster than his sisters to the door when I return home from work, and he even has an orthopedic impairment, too!

The reasons we initially sought the label “autism” are some of the same reasons I’m in love with him now. For that, I embrace the diagnosis and I embrace Autism Awareness month. We may never know for sure if Eddie is truly autistic, but if autism is responsible for what makes him unique, then I’m grateful for it. I may not love the way Eddie has to struggle to find words and meaning in an abstract world…but I love Eddie, the child…label or not.