Ask any parent of a child diagnosed with Autism Spectrum Disorder what the majority of people say when they discover your child isn’t “perfect”. My experience is that most people immediately become uncomfortable.
Think of the time when your child was a newborn. Whenever you went out in public people couldn’t wait to look at your baby. I remember being in the grocery store with my oldest daughter when she was about 10 months old. She just received glasses for an eye disorder. At the time (more than 16 years ago), I don’t recall seeing many babies with glasses. Looking back now I’m sure there were babies with glasses, but for some reason I felt singled out.
I remember people looking at my daughter with concern and curiosity.
They didn’t ask why she had glasses, they just stared. By the time I gave birth to my third daughter less than four years later, I had grown accustom to people looking at my toddler and her glasses.
Time marched on and my babies grew up.
When our school district told me that my oldest should repeat first grade, I felt the eyes of other parents whose children didn’t need “extra attention”. Once again, I felt the glare of the spotlight, other parents’ whispers, and looks of pity.
Fast forward a few years when my middle daughter’s preschool teacher said she couldn’t understand a word she said and needed speech therapy several times a week. She did have difficulty with her speech but she was only four. I started to develop a thick skin when it came to questions about my daughters.
It wasn’t until my oldest and youngest daughters were diagnosed with Autism Spectrum Disorder when I received the most troubling comments. I heard a lot of “I’m so sorry”, or “it could be worse.” I had people tell me that my daughters looked “normal.” (I’m not really sure what normal looks like, do you?) People told me what a strong person I am and how brave I must be.
The thing is, none of these comments were appropriate or even correct for that matter.
To the people who said things like I’m sorry, I want to ask them why they are sorry. I’m not sorry I have three beautiful, unique daughters. I’m not sorry two of my daughters are on the spectrum. I can’t imagine ever being sorry that my daughters are wonderful individuals. Each one has her own talents to contribute to society.
Why should I be sorry when their diagnoses also freed me to discover who I am?
My daughters are quirky, silly, and outspoken.
Why would I want to fix something that isn’t broken? There it is, the words I heard most often after my daughters were diagnosed. Are you looking for a cure? Do you want to make your daughters normal? What is normal? Why would I want to fix them? You fix a broken bike, not a child.
My reality is autism. I am autistic. My daughters are autistic.
I do not want a cure. The fact remains that everyone has something to offer. Everyone is worthy. The next time you meet a parent of a child with special needs, think carefully about what you want to say. People are uncomfortable with the unknown.
It is easy to say I’m sorry you have a child with autism. It seems that society has taught us to think that autism is horrible. Society says autism needs to be cured. Autism has given me a wonderfully unique family. I am happy to be autistic.
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Photo by Allef Vinicius on Unsplash
The post Why I Don’t Need Your ‘Sorry’ About Our Autism Spectrum Disorder was written by Jodi Murphy and first appeared on Geek Club Books.