What Autism Means to Me

Autism

When my younger brother Willie was diagnosed with autism in 1990, the autism prevalence rate in the United States was approximately 3 in 10,000.

That said, we grew up in New Jersey, which had (and still has) an in-state autism rate higher than the national average. Nevertheless, my brother’s diagnosis was considered unusual.

Fast-forward to the present day, when recent government studies report an autism prevalence rate of 1 in 45 for individuals ages 3 to 17. Autism awareness has come a long way since Willie was diagnosed, but of course there’s still a lot of work to be done.

Writing about what autism means to me is a small way in which I can help to raise awareness, and I’m grateful to FirstPath Autism for inviting me to contribute. Based on my experiences, I believe:

Autism means talking about our differences and our commonalities.

When I was younger, I’d see blank looks on people’s faces when I’d say, “My brother has autism.” Hardly anyone knew what autism was back then, and I had trouble explaining the word myself.

I didn’t know much clinical language, so when people asked, “What does that word mean, autism?” I’d just say, “It means that my brother thinks and feels differently.”

Then I’d tell my friends and relatives that autism was part of why Willie needed to cover his ears in crowded rooms, part of why he liked to memorize and type out the end credits from films.

FirstPathAutism-Caroline-and-Willie.jpgMost of all, I tried to emphasize that Willie wasn’t defined by a diagnosis. Autism was never the first thing I mentioned when people asked me about my brother. Instinctively, I started using person-first language long before I learned the term for it. “Willie is smart, kind, and funny,” I’d say. “And he has autism.”

Autism means realizing that while some people hate and fear that which they don’t understand, many others are willing to learn.

Some people received Willie graciously, but others didn’t. Growing up, I remember critical stares and not-so-quiet whispers of, “What’s wrong with him?”

Nowadays, there’s much greater awareness around terms such as “autism spectrum disorder”. And though there are still some who make unkind comments and foster prejudice, I witness sensitivity and compassion more often.

As Maya Angelou says, “When you know better, you do better.” When people “know better” than to be insensitive about autism, they “do better” and choose kindness.

Autism means sharing what we know while acknowledging all that we don’t.

My friends and family members often ask me questions about autismsuch as, “What causes it, exactly?” and “What’s the difference between autism and Asperger’s Syndrome?” I welcome the questions and work toward a world in which the answers will be common knowledge.

That said, there’s much about autism that mystifies scientists and siblings alike. Autism reminds us that we know only a fraction of what the human mind can do.

As Faith Jegede said in her 2012 TED talk, What I’ve Learned From My Autistic Brothers, “… How little we know about the mind, and how wonderful the unknown must be.”

Autism means that the idea of “normal” loses its power.

When I was younger, I wanted my family to be “normal”. I wanted us to look and act just like everyone else. But having a brother on the autism spectrum meant leaving normal.

Eventually, I realized that normal is just a construct. Though most people I knew didn’t have siblings on the spectrum, no one had a cookie-cutter “normal” life. Every family has its difficulties, whether or not they involve autism.

I used to want to fit in, but special needs meant standing out. And that in itself was a strange and powerful gift. The fact that my brother was visibly different actually freed me to be myself as well.

Autism means connecting with people who “get it”.

The first time I befriended another special-needs sibling, it was a revelation. My grade-school friend Holly had a younger brother with special needs similar to Willie’s, so I could invite her over without feeling self-conscious about Willie belting out Disney songs or rewinding the same video over and over.

Around her, I didn’t have to apologize or “translate” for my brother, and it was such a relief. Fellow siblings may want to check out resources such as the Sibling Leadership Network and the Sibling Support Project to facilitate these kinds of friendships.

Autism means focusing on what really matters and letting go of what doesn’t.

To me, autism means letting go of the idea that there’s only one right way to think, feel, or love. As Tolstoy wrote in Anna Karenina, “If it is true that there are as many minds as there are heads, then there are as many kinds of love as there are hearts.”

With that in mind, all I can do is stay present, offer support, and give thanks for my specific brother. I’ll never fully understand Willie, and that’s all right. I don’t have to fully understand in order to fully love.

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Caroline Garnet McGraw is an autism sibling and a writer for FirstPath Autism. She’s also the creator of A Wish Come Clear, a personal development blog giving you carte blanche to change your life.