Maybe ‘normal’ needs fixing

Published 12:00am Wednesday, April 3, 2013

Every year on April 2, the world observes Autism Awareness Day. At my house, the day started quietly. My daughter, the one who has autism, slept peacefully as I thought about what the words, “autism awareness” mean to me.

When we started this journey more than 20 years ago, there was not much awareness of autism. The only thing most folks knew about it came from the movie “Rain Man.” Even the special education experts in the school systems knew only a little about it back in the 1990s. My child was four-years-old before we heard the word “autism” as a diagnosis.

This was after months of visits to a psychiatrist specializing in children with special needs. He was not the one who said, “This child is on the autism spectrum.” What he told us was he wasn’t sure what was going on, but he said there were more children like our daughter showing up in his practice.

When someone did tell us what was going on, there was almost nothing in the way of treatment or services available, at least not in South Alabama. That is when I started reading everything I could get my hands on related to autism.

That was also when we bought a computer and jumped on the information super highway to learn as much as we could about this disorder. I read and read and read until my mind was tired. Then we tried one thing after another to see if something would help with the meltdowns and other behaviors that were so challenging.

We went to this doctor and that doctor. We tried this type therapy and that type vitamin. We spent a year on a special diet that was exhausting and expensive. Some things helped — a little. Nothing was the “cure” that many of the mothers wrote about in the books I read.

I look back now on those years when I was so frantic to find the key that would unlock the autism box. I thought there was some magic thing I’d discover. I thought that was what I should do to make sure my daughter had a happy life.

All the while, she was growing up and for the most part seemed to enjoy her life. She was, and is, happy when she is happy. When she is sad or frustrated, she goes fully into those feelings as well.

She hides nothing and is not worried about whether it is acceptable to be that sad or that happy. She is who she is without pretense.

People write about feeling grief, shock and even disbelief when their child’s diagnosis is autism. Those were not emotions I felt. I never grieved for the child I didn’t have because I was so thrilled to have this wonderful person in my life. That she has autism is just part of the package.

So, another Autism Awareness Day arrived quietly at my house. Hopefully observing this day internationally will lead to more understanding and more resources for those who have autism. And by the way, that is now one in every 88 people, 1 in 54 for boys.

Of course, for my family every day there is autism awareness because I see every day that my daughter experiences life differently. Therefore, for me autism awareness is about remaining open to what the experience of living with this unique person teaches me.

Once I thought I needed to “fix” her autism. Now I understand that perhaps she (and all the others with autism) is here to let us know that our way of thinking about people who are different from what we label “normal” is what needs fixing.

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