Thursday, July 10, 2014

"I'm so sorry" ...or... "Things You Should Never Say to an Autism Parent"

I was out perusing Wal-Mart one day with Johnny, and like he has a tendency to do when he's excited, he was chattering quite loudly and gesturing animatedly with his hands. Some of it was gibberish, but most of it was words he'd see on signs or numbers on price tags. I praised him for using his voice and his words, which only made him talk louder and get more excited. We were having a blast and I was so thrilled just to hear him talk and laugh, where as just over a year ago all he did was basically screech.

Meanwhile, the other patrons and some of the employees were either staring or glaring at us as we shopped. At one point, as we were in an aisle and Johnny was gesticulating wildly with his hands and sputtering jargon, a random person in the same aisle asked:

"What's wrong with him?"

I swallowed my irritation, plastered a fake smile on my face and answered:

"Nothing. He's just excited."

She frowns.

"Why's he doing that with his hands?"

"He can't verbalize his feelings yet, so that's how he conveys his excitement. He has Autism."

Her visible annoyance is replaced with pity.

"Oh I'm so sorry."

My ire bubbles up but I bite it back, smile, nod, and walk away.

This is unfortunately something we as Autism parents have to deal with every day. The public seems to feel that because our children are on the spectrum, that there is something wrong with them and we need their pity. I blame this view entirely on the media and their portrayal of Autism as a proverbial death sentence. To anyone who is unfamiliar and uneducated about the wide spectrum that is Autism, the media leads them to believe that all people with Autism are violent introverts who require constant care and supervision and will never truly be a part of society. They are also convinced that the parents and caretakers require sympathy because our kids are not "normal" and we as well will never live full lives because of that.

Well, here and now, that stigma ends.

"What's wrong with him?"

Nothing. What's wrong with you? Having an autism diagnosis doesn't mean that there is something wrong. He just learns how to interact with his environment differently than you do. I'll give you an example. If you see a pretty flower in the garden, you smile and stop to admire it. Johnny might see the same flower and also smile, but his excitement extends beyond his smile and he might run into the garden and mash the flower with his hand. Where you understand how to appreciate the beauty of the flower without disturbing it, he doesn't quite get that and has to be taught.  He's not wrong, he just learns at a different pace.

"I'm sorry"

I'm not! My children are as happy and healthy as yours! Why on earth would you be sorry about a child? Sure, they might react a little strangely when you first meet, and they might not look you in the eye when you talk to them. And yes I may look a little harried when my son is chatting up a storm and and my daughter has her hands clapped over her ears, yelling at him to stop because the sound of his voice is too loud for her. But I'm not sorry. I don't need sympathy or pity for any of that, because they are happy, healthy, and greet each morning with a  deep breath and a smile. Just like your kids.

"Just tell him to stop." (when he's screaming or jargoning)

Not that cut and dry. As I stated before. He learns at a different pace than you. He has to be taught with thorough repetition and often with  PECS (Picture Exchange Communication System) which behaviors are acceptable and which aren't in order to achieve what he wants. "Just telling him to stop" isn't effective, because what he's doing is his way of communicating. Would you like it if someone told you to stop when you were trying to talk?

"Isn't he too old/big for that?"

This is my favorite. I got this once when we took the kids out to eat and I requested a high chair for my son. He's a big boy (44" / 50lb at 4 years old), but still needs to be in a carriage at the store and often a high chair at a restaurant. He's getting better at learning the appropriate behaviors, but because of his delay he's still a bit wild and not always easy to control. He gets antsy, he runs, and he bolts. I have to do what I can to keep him safe and keep him calm. So no, he's not too old or too big for that. I requested it for a reason because I know what my son needs. Don't question me, just do as I ask.

"S/he'll grow out of it."

Um yeah. No. That's not how Autism works. The diagnosis doesn't just go away like a cold or the chicken pox, or a behavior like temper tantrums that can be unlearned. Though it is still unclear what causes it, Autism is an issue in the brain that causes the child to be sometimes slightly, sometimes severely delayed in their development. It is a life long "ordeal" for lack of better words, not a behavior that can be outgrown. Sure, there are certain behaviors and stims that may fade with time, but my children will always have Autism, and many people with Autism go on to live full lives. Just look at Temple Grandin!

There are hundreds of more inappropriate comments, but these are just a few of the most common ones I am faced with when out and about with Jordan and Johnny. So please, do yourself (and me) a favor when you feel the need to chime in when my child(ren) is/are having a hard time in public, or doing something that you think isn't "normal": don't.

I'll be blogging again soon with updates from this past (very exciting!) school year, as well as all the fun from this winter and spring! Until next time, friends!

Stay awesome!

Just two happy kids on the playground!

1 comment:

  1. GREAT post!!!! I learned something from you & your sweet kids today!!! Thank you for sharing!!! ��