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When a Boy With Autism Asked Me What It Was Like When I ‘Had Autism’

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Last year, I was asked to be a guest speaker at a middle school in Brooklyn for their Peace & Diversity Conference day. I spoke there to a group of sixth-graders and then had lunch with a self-contained class of sixth-graders with autism. I was asked to return again this year, and I made the trek out to Brooklyn at the end of January, just hours ahead of a snowy winter storm.

I can still see him so clearly.

The small one, with thick, black-rimmed glasses that were almost too big for his face, sitting there tugging nervously at the hem of his shirt. He wasn’t as gregarious as some of the other children — not like the one I affectionately refer to as Mr. Mayor, because he probably will be one someday — but he made an impression I won’t soon forget.

It’s not often I have the opportunity to be around sixth-graders, let alone ones who are as self-aware and bright as they were. One by one, they came over to sit at my table and began asking me questions in that combination of wide-eyed innocent and weathered only 12-year-olds seem to do so well. They sometimes spoke over each other, and as their enthusiasm grew, the questions flew out almost before their brains had a chance to finish coming up with them.

Then it was the small boy’s turn. He cleared his throat and looked up at me shyly.

“What was it like when you had autism?”

I pause.

“Well… I still have autism,” I said, the full weight and meaning of his question just starting to sink in.

It’s no secret that most of the media portrayals of autism predominantly feature young children. Autistic adults are given very little of the spotlight in comparison. But perhaps there is more to it than that.

Every day, many children with autism undergo various types of therapies — ABA, floor time, social skills groups and so on. Self-contained classrooms are cropping up in schools all across the country, accompanied by a veritable army of teachers, psychologists, speech therapists, aides and other professionals. All of this in the name of helping these kids overcome challenges, thrive and succeed.

But increasingly, “success” seems to be defined as “no longer appearing to have autism.” Parents, teachers, people with the very best of intentions are doing a great disservice to children with autism if they send them the message that this is only temporary, something they are getting help for now, so that they — and everyone else — won’t have to deal with it later.

In reality, nothing could be further from the truth.

As a child, I did not undergo early intervention. My parents tried one thing after another to help me, a desperate if not futile effort in a world that had little (if any) awareness or understanding of autism. The challenges I faced were many, yet few were greater than the low expectations and doubt in my abilities that others had for me.

Today, I am an autism consultant, a professional public speaker, a writer and an advocate. I’ve surpassed the beliefs of those who said I would not amount to anything, who told my parents I would not graduate high school, let alone attend college. I have a Masters degree, I have my own business, and I have a life that took me years of struggle to build. My story only started because I believed it was worth writing, and even now, it is still being written.

I have overcome tremendous obstacles because I have worked hard to do so, not because I no longer have autism.

The fear of children with autism facing certain challenges for the rest of their lives is overwhelming, and it’s often the driving force for parents and teachers to find help for these children. But because autism is an integral part of who we are, overcoming those challenges does not and will not suddenly make us neurotypical. It just means we grow up and might have those challenges replaced by new ones.

Therapies have their place and can be meaningful and effective tools for assisting autistic children and their families. But preparing your child to be an adult with autism is the best and most important thing you can do to help them live in this world.

I hope I will get to see that little boy with the thick-rimmed glasses again.

I hope he grows into his striped shirt, grows into the person he’s going to become, a person who will give so much to this world. I hope he knows how special he is and that he can be autistic and succeed, be loved, be a friend and be just exactly who he is.

All of our children can.

A version of this post originally appeared on Amy’s Tiny Corner of Existence.

Lead photo source: Thinkstock Images

Originally published: March 4, 2016
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