explaining autism

Explaining Autism (Part 2)

Last week I wrote about the emotional side of being a special needs mom. In the beginning, when dealing with therapies and appointments and paperwork, we were just in survival mode and Simon was our only focus. We didn’t have time or energy to explain what was going on in our lives.

After we got into Early Intervention and started to understand all about my son and his needs, we were able to take a breath. It was time to share with our family and friends what was going on.

I was very involved in Simon’s therapy and read every book I could get my hands on to learn about early childhood development and Autism. How was I supposed to condense all that knowledge into a one conversation? How could I possible explain what our day looked like? How could I help someone understand his spectrum?

It was really hard, at first, to find the right words.

Simon gets overwhelmed when there’s a lot of stuff happening – like if there’s a lot of people, noise, music, or toys everywhere. If there’s too much going on his brain kind of shuts down and he needs to escape to somewhere quiet.

Simon is very sensitive to textures. He’s hyper aware of everything and feels things way more intensely than you or I. So new flavors of food and anything sticky like glue or play-dough makes him really uncomfortable.

Simon doesn’t understand conversation yet. He know a lot of words, he just doesn’t get how to use them. He repeats what other people say. Echoing also helps him practice conversation.

I always try to make it relatable.

You know how you hum or tap your finger or twirl your hair without even noticing? It’s like just this thing you do when you’re bored or feeling impatient. He recites all the dialog from a movie or walks on his tiptoes for the same reason. If he’s feeling anxious or bored, he’ll sound like he’d reading a movie script from start to finish. But that helps him calm down.

You know how amazing it feels to get a massage or get your hair done? Simon likes to rub his face on the carpet. To him, it feels really nice and relaxing.

I try to remind friends that Autism on TV is not an accurate representation.

Remember that kid from ‘Parenthood’, he only portrayed a few aspects of Autism. Not every kid flaps their hands or doesn’t want to be hugged. ASD affects every child differently, that’s why it’s called a spectrum.

And then the quick-fire answers to the same questions that are always asked….

No, not all ASD kids are prodigies. Yes he will always be Autistic. No it wasn’t from vaccines.

And my favorite new statement….

Yes, of course you can help. Come over to learn about his world and what makes him so unique.



Previously posted at Hudson Valley Parent Magazine.