Friday, February 24, 2012

Cr@p People Say to Parents of Autistic Kids

I'm sure you've heard of the recent "Sh#t People Say" video meme.  I've only seen a couple, but one popped up on my FB feed a couple days ago that is dead on.  This video is by Stim Nation, posted on YouTube, and shared with me by the ever-amazing, totally-gets-it stark.raving.mad.mommy.  This is SO funny, in a "sad that it has to be pointed out" kind of way:




I shared this on my FB page, and immediately came up with more things I could add to this list of inappropriate comments. Only, many of my ideas would fall under the heading of "Cr@p Ignorant People Say To Parents of Autistic Kids." Here are some of the lulus I've heard, or friends of mine have heard:

Regarding behavior and maturity:

"He just needs to grow up." 
       (Um, no - the delay in maturity is PART of his autism spectrum disorder.
       You can't force maturity.)
"Maybe if you disciplined him more he wouldn't act that way."
       (And you'd whip him into shape in a week, right?  You wouldn't last two
       days, my dear.)
"Just spank him, and he'll stop." 
       (Actually, no, it didn't stop his behavior.  It made it worse, so we stopped
       trying it a long time ago.)
"You know, that kind of behavior could land him in jail when he grows up." 
       (Thank you for combining in one comment every responsible parent's worst
       fear, a general condemnation of our parenting skills to date, and a put-down
       of our intelligence and understanding of the possible future consequences
       of his choices.)
"Does anyone else in your family act that way?" 
       (Are you related?  No?  Then you shouldn't even ask that question.  I
       certainly won't answer you, or ask you if others in your family also
       ask obnoxious personal questions to casual acquaintances.)
"He acts just like his (father/grandfather/cousin/grandmother/aunt/
mother/distant relative) who had "problems."
       (You may know us, but THAT was uncalled for.  And maybe they had
       undiagnosed issues that no one ever knew about to help them with.
       Diagnosis or not, how understanding were YOU about them?)

Then there are the fun and games of sensory issues, especially dietary ones,
that most people feel free to comment about at some point:

"Just make him eat it."
       (Yes, I tried that.  Projectile vomiting at the dinner table got real old,
       real fast.)
"If he won't eat what you put in front of him, let him go hungry." 
       (That didn't work either.  You severely underestimate the determination
       and stamina of a kid with sensory issues and autism, and the choice
       hell of low blood sugar on top of that.)
"Someday he'll grow up and eat like a normal person."
       (And would a "normal" diet be exactly what you eat?  Are you a dietician?
       "Normal" for which culture or philosophy?  Gimme a break - if he eats a
       healthy assortment of food throughout the day and week, and is polite
       about what he cannot/will not eat, we're good.)

And gross generalizations:

"You do know that Aspergers is way over-diagnosed, right?" 
       (Why no, we just wanted to add a nifty label to our son for the rest of his
       life, visit various doctors and specialists just for the heck of wasting our
       time and money, go through the process of testing and diagnosis so we
       could have reams of paper proving that our son is different and needs
       extra services in school, and assume a burden of worry and stress
       about him well beyond normal human endurance.)
"He's not autistic, he's just selfish and immature." 
       (So are you for saying that.)
"Wow, he must be really good at math."
       (Been watching "Rain Man" or "Numb3rs" recently, have you?  If you're
       nice, I might volunteer the information that he has a math learning
       disability, but is doing very well anyhow, thank you.)
"I bet he'll be a scientist someday."
       ("Big Bang Theory," anyone?  Although we've had fun discussing which
       past and present inventors, scientists and innovators we think probably had
       Aspergers, like Thomas Edison, and Bill Gates.  And Safety Guy would
       probably make a great safety engineer, so you might be right.)
"Have you tried horseback riding therapy for him?" 
       (No, but thanks for the suggestion - it's a good one, but he's not into 
       unpredictable large animals, although that therapy has helped many people
       with autism and other disabilities.)
"He needs a dog." 
       (We considered that, but it just wasn't right for us.  Thanks, though - 
       that's another good one that really has helped many kids with autism.)
"Does he take things apart and reassemble them?" 
       (No, although he's interested in how things work.  Just ask him about fire 
       alarms.  Go ahead, I dare you.) 


And, since we home schooled him for 6 years to address his sensory and 
social issues: 

"If he'd been in public school, he might be better by now."
         (The snarky answer:  You must live near the best school for kids with 
         autism on the planet  - why don't all of us with kids on the spectrum 
         move to your district?  What's the housing market like there?  Can we
         arrange a play date with your kids?
         The short answer:  There is no cure for autism, there is only gradual 
         progress over time - sometimes a LOT of time.  
         The long answer:  If we'd been convinced that public school 
         was the best place, we wouldn't have pulled him out.  But the fact that he 
         could hear everything for three classrooms around, was confused and 
         scared by large noisy crowds, was overwhelmed by the social 
         expectations in large groups, and was flat-out terrified by the 
         unpredictable fire alarms swayed us to seek a calmer, more controlled 
         environment for his education.  The teachers were great - it was the 
         physical environment that was the biggest barrier to his education.
"If he'd been in public school, you'd be better off by now." 
         (The snarky answer:  You can't know that for sure.  And if you could 
         see the future all those years ago, why didn't you TELL me then?  Pfft.
         The short answer:  This decision wasn't about me.  
         The long answer:  If you mean we'd be better off financially, that's true.  
         But this wasn't a financial decision.  If you mean emotionally, there's a 
         grain of truth to that as well.  Raising a child with an autism spectrum 
         disorder is exhausting in body, mind, and soul, and frankly it's wicked 
         hard on a marriage.  Home schooling compounded that issue.  But I 
         repeat:  this wasn't about just me.  It was about what was best for 
        our son and for our family as a 
         whole.)
"It's because he's been sheltered." 
         (Yeah, he was sheltered by socializing with people of all ages across 
         multiple situations and learning with lessons tailored to his skills and 
         interests using multiple learning styles and group classes and 
         extracurricular activities and field trips. . . .)   

       (Random thought:  someone needs to make a 
       Mythbusters episode spoof about home schooling.)

Please don't get me wrong - I'm glad to talk with people about our son's
Aspergers. And people who really care about our family get a "pass" for
the occasional abrasive statement. Anyone can blurt out something
inappropriate then regret it, and learn how to better ask the questions they
have. And I'll admit it - sometimes we're a bit hypersensitive about people
asking questions, after some of the lulus we've fielded. I'm okay with advice
from people who know our son, too. It's all in the delivery and the
assumptions behind the comments. If the premise is, "Maybe they don't
know this new research or therapy, and maybe they'd be interested in
hearing about it," I'm okay with that. Just don't assume that you know
better about my child than my husband and I do. Don't assume he's
somehow less intelligent or somehow defective because of his quirks
and issues. If you don't know, don't comment. Don't assume if you're
not sure, just ask us (or ask our son - he really can speak for himself).

Trust me, my husband and I would be happy to talk to you about how
autism and Aspergers really affects our son and our lives.  The cure for
ignorance is education.  (I also promise to suppress the urge to smack
repeat offenders up 'side the head.)

3 comments:

  1. I have always enjoyed SG JUST the way he is. I always felt priveleged when he would let me talk him 'out of his tree' at co-op. He is a great kid, a fantastic human being and just the way that God intended him to be. Just as the girly is. Anyone who judges is simply ignorant.

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  2. Yes. And I'm willing to work with "ignorant," since that's curable. It's presumptuous, pushy, thoughtless, and rude that gets on my nerves. I always loved your ability to get SG to open up and loosen up. He is a pretty neat guy, isn't he? And there's no end to La Girly's awesomeness.

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  3. Great post! My favorite is, "But he seems so normal!"

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