Tuesday, July 5, 2011

The Need For Awareness and Acceptance

There is often talk in the autism world about the need for more awareness and acceptance of people with autism.  But what exactly is meant by awareness and acceptance changes depending on who is doing the talking and what group they are talking for.  If you spend any time at all listening to what all of the various groups want, you would come to the conclusion that there is an entire spectrum of what exactly awareness and acceptance means.

But one thing that I feel gets overlooked most of the time is basic awareness of what autism is (and isn't) and the acceptance of the fact that, some of the time, people with autism are not able to properly react to a given situation.  There are going to be times when a person with autism is not going to be able to control themselves and they are going to have a meltdown.  Or they are going to act in such a way that could cause problems for themselves and others.

The general public just doesn't get it and that is a problem.  A problem that is mostly overlooked by the autism self-advocacy and neurodiversity groups.

Take for example an opinion piece that appeared today on CNN entitled "Permissive parents: Curb your brats".  In this lovely article, LZ Granderson exudes acceptance and awareness as he prattles on about how parents need to control their children better -
If you're the kind of parent who allows your 5-year-old to run rampant in public places like restaurants, I have what could be some rather disturbing news for you.
I do not love your child.
The rest of the country does not love your child either.
And the reason why we're staring at you every other bite is not because we're acknowledging some sort of mutual understanding that kids will be kids but rather we want to kill you for letting your brat ruin our dinner.
Or our plane ride.
Or trip to the grocery store.
Or the other adult-oriented establishments you've unilaterally decided will serve as an extension of your toddler's playpen because you lack the fortitude to properly discipline them, in public and at home.
He goes on like that for some time.  In a way, he does have a point.  We have all run across parents who seem unwilling or able to control their children.  But then again, there is also a large group of children (perhaps as many as 1 in 10) that have "invisible" disabilities such as autism or ADHD that hamper their ability to properly behave in public.  These children look "normal" but have very real problems that they need help with.

But Mr. Granderson seems to be in such a rush to judge that he doesn't stop to consider that fact.  He doesn't seem to understand that, sometimes, parents are doing the best that they can to manage their child's behaviors.  Nor does he seem to understand that sometimes you have to let the child misbehave, scream, or cry in public in order to break them of the behaviors.

There was a time a few years back when we were glared at every time we went into public.  Back then, twin B decided that she wasn't going to walk in public and she didn't want to go into any store.

Obviously, that was somewhat of a problem and we had two choices on how to handle it.  We could either stay at home and hope that someday she would learn how to deal with walking in public and being in a store or we could push ahead with going out and teach her how to deal.

We chose the second option and, for the next few months, we tried a variety of approaches to help her deal with her problem.  During that time I could frequently be spotted trying different ways to get her to walk or pushing a cart with a child screaming bloody murder at the top of her voice  (as an aside, during this time we learned that she has very health lungs and an extremely good vocal range).

To make a long story short, we eventually found ways to break through the behaviors and now she will walk in public and go into any store without even a whimper.  But for a while there, it was a little rough and we were on the receiving end of a lot of angry glares.

I imagine that if we would have run into Mr. Granderson he would have given us "the look" for daring to inconvenience whatever it was that he was doing. By his way of thinking, we should have kept Twin B at home until we had disciplined her enough so she knew to behave in public.

But what he doesn't seem to be aware of is the fact that the only way that we were going to stop the behavior was by going into the environment that triggered it.  You simply can't address a location specific problem without going to the location.

What he also doesn't seem to realize is that you can use "the look" as much as you want on some children with autism - it just doesn't work.  Many children with autism simply don't process facial expressions well enough or don't process them well enough in stressful situations for that to be an effective method.

And other forms of traditional discipline can be almost as worthless.  If you want to have a good time, try putting a child with vocal stims in timeout.  They won't care because they can amuse themselves for hours with just the sound of their own voice.

Mr. Granderson clearly lacks the awareness of what exactly is involved in dealing with autism and I am not sure that he would accept it even if he heard it. But if you think that Mr. Granderson's ignorance is bad, try reading the comments on the article.  I think this one my favorite -
AUTISTIC CHILDREN THAT ARE NOT CAPABLE OF BEHAVING DO NOT BELONG IN RESTAURANTS! PERIOD! YOU ARE NOT "ENTITLED" TO RUIN EVERYONE ELSE'S MEALS WITH YOUR UNRULY CHILD. Sorry about your luck, life hands out tough ones sometimes and you will have to deal with it.
Talk about needing some awareness.  I would love to be able to drop on my children off at this person's house for a weekend and see if he changes his mind about autism by Monday.  However, I like my children enough to not want to subject them to this idiot.

However, people like this are really just an annoyance that parents of children with autism need to deal with.  I find that, for me, simply standing your ground and glaring back takes care of most of these people.

Unfortunately, there are other times when awareness literally means the difference between life and death.  Such as this story out of Florida -
Largo, Florida - Police called out to a domestic disturbance Thursday say they were forced to shoot and kill an 18-year-old man armed with a knife shortly after entering the apartment he shared with his mother.
Nicholas Pesare had Asperger's Syndrome, a form of autism, and difficulty with social interaction. His mother, Anne Polce, says she called officers hoping they would take him to a mental evaluation center for medication. Instead, she says two officers walked into her apartment and, within seconds, there were three gunshots and her son was dead.
Based on the little bit of information that is available, I don't think this young man had to die.  If the police had had a better idea of how to deal with an autistic meltdown then perhaps Nicholas would still be alive.

This is definitely an area were more awareness of exactly what autism is could save lives.  Emergency personal and police need better training on what to do when dealing all types of autism - from non-verbal children to sometimes violent young adults, and everything in between.  It is literally a matter of life and death.

4 comments:

  1. Awareness of the full array of NTSD (nuero-typical spectrum disorder)maladaptive behaviours MUST be increased! ;)

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  2. Great post. Sad, and powerful, and accurate. I hope many people read and take-to-heart your message (I'll share it through Twitter and Facebook).

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  3. Would'nt it be nice to have a reality tv show on families with ASD kids at different levels, what everyday life is like? I would also love to see a "survival" type reality show with reality survival stars dealing nonstop with an asd child or colicy baby, and see what kind of survival tips they can come up with. HeeHee

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