My eldest daughter has autism, she’s 4 years old and was diagnosed a year ago. She has pervasive developmental disorder (PDD), sensory issues, a speech delay, impulse control issues and other very small difficulties. On the outside she looks like a perfect blend between my husband and me, and her and her little sister look like clones.
Since her diagnosis, we’ve shared with several people about her autism. We’ve shared with friends, parents on her preschool class, parents of the neighbor kids whom she plays with in our building’s backyard, and even some strangers when we’ve felt it’s necessary.
This has led to various responses, many of which could be considered unfortunate, inappropriate or just plain rude. I’ve been told, “she does’t look autistic,” “I never would’ve guessed,” “she looks so normal,” “are you sure?” “I’m sorry,” and many other similar remarks. Many of those comments made me angry at first, but later, as I tried to understand what the person who said it might have been thinking — or what he/she might have really wanted to say — I stopped being angry.
I’ve read a lot about autism — in books, blogs, Facebook groups, etc. Many parents seem offended by these comments, these and many others I haven’t heard yet. I understand why they get angry, upset, sad and the many other feelings that parents of children on the autism spectrum have to deal with when someone says something unkind about their child. But, I’ve managed to find a way not to get angry.
I’ve come to realize most people are not trying to be mean, they might just be ignorant about autism. I don’t say this in a pejorative sense, I believe they don’t know what they’re talking about. Many people don’t know what autism means; they might think it’s a disease, or believe you can get autism, or they simply know nothing about it.
This means parents of children on the autism spectrum (or families) have to realize how important autism awareness is. Our society needs us to advocate for our children so others can understand what autism really looks like, our everyday experiences, what is true and what is a myth. It means we have a lot of work to do, and it also means we need to be patient, and understand that ignorance can be our worst enemy.
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