SILVER SPRING, Md., July 6, 2011 — Those of us in the autism community speak often of autism acceptance. While there is much emphasis on autism awareness, many of us feel that awareness matters little without the acceptance that hopefully follows.
We strive for acceptance in our children’s schools, playgrounds, families and in society in general. But what about the place where it can be hardest to create acceptance—in our own hearts and minds?
My first real-life brush with autism came when my husband and I were interviewing doulas for our second child’s birth in 2003.
One of our doula candidates mentioned offhandedly that she had a young son with autism.
“Oh, I’m so sorry,” I said.
“I’m not,” she replied. “He’s a wonderful little boy.”
I had no idea what to do with that information. That concept of being okay with having a child with autism was so foreign to me that I couldn’t even comprehend it.
See, I was still at least three years away from beginning to understand what it was like to parent a kid with autism. Back in 2003, the idea of having a child with autism still meant nothing but horror to me.
At the time, I was watching my oldest son, who has turned out to be mostly neurotypical (but with his own quirks), obsessively stack his toy trains in the back of his toy dump truck. I watched him freak out when they didn’t all fit perfectly and I was mildly panicked. I vaguely knew that lining things up was a red flag for autism and even though he was organizing his trains in a grid pattern instead of a line, I was worried.
To my mind, autism was one of the scariest words I could think of. It called to mind Rain Man and a sad life with a closed-off child at home. At that time, it meant to me a child who couldn’t ever live by himself.
It seemed to be a practically life ending proposition for any parent unlucky enough to have a child with a diagnosis.
In a twist of fate, my oldest never ended up with a diagnosis, but that 2003 baby grew up to be my Jack, a delightful, wonderful child with autism. My path to accepting his autism was not an easy one. It came with many tears and my heart dropped out of my chest the first time someone said the word “autism” to me in relation to my son.
Yet, even while I was stumbling down that difficult road, my love and acceptance of my child never wavered. Once I realized that my child and the word “autism” were one and the same and, more importantly, that the word didn’t change the child, it was a quick step to accepting autism.
I am well aware that my son, who still faces very real challenges as to his present and his future, is at the less severely affected end of the spectrum and that this makes it easier to accept and not fight against his diagnosis. However, knowing my son, I know that I could never be sorry about who he is.
It is hard to imagine Jack without autism. If he were typical, would he still be so gentle and kindhearted? Would he still find so much joy in very small things? Would he still come up with the delightful and quirky thoughts he manages to articulate? Much as in 2003 I was unable to fathom a child with autism, now I cannot fathom my own child without it.
Having a child with autism has introduced me to a whole section of society that I never even knew existed before. The special needs community, while sometimes fractured and contentious, is full of incredible individuals and families that I am so grateful to have gotten to know.
If you were to ask me today if I wish that Jack had been born without autism, I honestly don’t know what my answer would be. Frankly, it is a moot point and therefore not one that I put much thought into mulling. The fact is that my son has autism and I love every single thing about him. Separating those two things is not something I can do—nor do I want to.
Even though I want to make my son’s life as positive as possible, I realize that every single person faces their own challenges. For some it is anxiety. For some it is financial troubles. For some it is difficult families. For my son, it is autism. We all work with what we have and learn to compensate to one degree or another.
I consider myself so lucky to have all of my children just as they are, Jack included. Jack has brought so many gifts to my family and has quite literally changed the way I view the world. Yes, life is harder when you parent a child with special needs, but it can also be so much richer.
Today, I recognize “Oh, I’m so sorry,” to be one of the harshest things you can say to a parent who has told you that their child has autism. Today, if someone were to say that to me, I would say simply, “I’m not. He’s a wonderful little boy.”
Jean writes a personal blog at Stimeyland and an autism-events website for Montgomery County, Maryland, at AutMont. You can find her on Twitter as @Stimey. Read more of Jean’s work at Autism Unexpected in the Communities at the Washington Times.
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