Tuesday, November 27, 2012

Oh, The Things People Say Revisited—What Not to Say About Autism

When I first started my blog, I wrote a post about the insensitive things people have said to me about my son’s autism.  I should be used to it by now, but just last week, I had another such encounter when an acquaintance was talking to me about a child at her son’s school.  She said, “He’s retarded…you know, he’s like your son.”  Where this once would have taken my breath away, I have learned not to get angry at the sheer ignorance of some people.  Instead I channel my energies to try to make a difference in the lives of people with autism. 

So let me first say that children with autism aren’t “retarded”.  Frankly, I think that’s a word with all its horrible connotations best relegated to the garbage bin.  Children with autism are developmentally delayed, but are generally not cognitively impaired at a significantly higher rate than the general population.  It is difficult to accurately measure the intelligence of an individual who lacks the ability to adequately communicate knowledge.  Autistics learn differently to be sure, but they can and do learn.

Secondly, my son is very bright—he’s especially intuitive with electronic devices.  He knows so much more than I had realized until we gave him an iPad and he was able to easily demonstrate what he knows.  That said, his communication circuitry is broken and a lot of effort has gone into not only teaching him HOW to communicate, but that he NEEDS to.  He is improving…the intensive therapy he receives is creating new pathways in his brain.  I suspect he will always be different, but that’s OK.  I just want the best quality of life for him he can have.

But back to my original topic—the sometimes outrageous things people say.  The following is from an earlier blog…I hope those reading it who have had similar experiences with blissfully ignorant people—or with those who are just full-on jerks, will share their experiences.
Oh, The Things People Say…

Just read the Autism Island blog entry, “50 things you SHOULD NOT say to autism parents”. LOVED IT!!  It really hit close to home. I hear the most insensitive things all the time from well-meaning (??) people and sometimes I just don’t feel like launching into “A day in my life”.  A few gems that stand out…

  •     “Have him play with my child…he’ll learn how to talk!”—oh, you mean I don’t have to pay $100 an hour for speech therapy?
  •    “You’re lucky he can’t talk. My kid talks all the time!”—that’s a problem I wish I had with Ryan.
  •      “All people have autism if you look at the symptoms.”—really?? No, not REALLY!!
  •    “I know exactly what you’re going through. My cousin’s friend has a child with autism. It’s sad.”—yeah, that’s right…you know. EXACTLY.
  •     “Maybe he’ll outgrow it.”—yeah, sure.
  •     “At least he doesn’t have cancer.”—well, yes, thankfully…
  •     “Do you get Social Security payments for that?”—as if!
  •     “Do you think vaccines caused it?”—I don’t know, but it doesn’t really matter now, does it? 
And my personal favorite:
  •      “Well, a prenatal blood test indicated my child could have had Down Syndrome” (she didn’t), “and that’s so much worse than autism.”—just wrong on so many levels!

What is so interesting about telling someone you have a child with autism is how often it becomes about THEM in some way—it almost becomes a “Six Degrees to Kevin Bacon” with autism serving as the connection to themselves…maybe they know someone with an autistic child, or saw something on the nightly news, or even worse, “Rainman”, but they “get autism”. I realize people don’t always know what to say, but it surprises me they think it makes me feel any better when they tell me how their typical kid (or better yet, Einstein) didn’t talk until age 3 or 4, sometimes walks on her toes, potty trained late, etc…as if this means Ryan is just a “late bloomer” who doesn’t have autism at all. 

There is just so much misinformation out there and I often wonder why people who know us can’t take a few minutes to Google “autism” and learn a little about it and try to understand our circumstances.  But people are busy so I’ve resigned myself to being a one-woman autism education crew.  

The next time I tell a new acquaintance I have an autistic child, I will be hoping for just a simple, “How is he doing?” That would make my day.

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