Tuesday, September 20, 2016

Lack of Awareness

I was talking to a lady who does observations at Knee's headstart about HB.  As she put it, people often lack awareness because autism is an invisible disability.  Basically you don't see the autistic as being disabled because there's nothing a person can physically see thus there's a lot of misconception.

For example, last Sunday I was talking to the assistant to religious education director.  She's an older lady and I'm not sure what background she has.  But as I was mentioning my concern of HB when cliques and social pressure comes into play (usually 3rd grade), she brought up another autistic child from the past.  She said that he was a bully and that he chose to hung out with bullies and that his mother was simply unaware and concerned more about him being bullied.


I don't know the particulars so I hesitate to judge and simply nodded.  The problem is that 1) just because he seems like a bully doesn't make him one.  Autism is a social disability.  This child may simply not be aware of what harm his behavior was doing.  So to label an autistic as a bully.  Well....I wouldn't.  2) He may have chosen to hang out with bullies but again that doesn't mean that he's aware of what their behaviors mean. 

In other words, I don't think the assistant really is aware that this kind of judgement call is rash judgement.  Unless the autistic child can confirm definitely that they are aware of what bullying is and that they are actively engaging in it, you cannot positively assume that they are in fact a bully.

Something similar happened to me the other day that made me almost jump down the throat of the secretary.  She basically said that HB was aware of what he was doing was "wrong" in this case his echolalia where he says potty words on repeat because whenever the principal asks him to stop he does.  Just because he stops when the principal asks him to doesn't mean he did it because he knew it was "wrong."  For the record, I don't find echolalia wrong.  Yes, it can get out of hand and be a distraction but assigning morality to a disability is simply wrong.  Making the assumption that HB knew it was a distraction is wrong.  Furthermore assuming that he has the ability to stop himself on a dime whenever he wants is also wrong.  But the principal acknowledged that his secretary has zero training with autism.  He said "she doesn't know what she's talking about."  And sadly she works at a school.

To make it more sad, a teacher said that HB laughed in another teacher's face, which socially in our culture is meant to be insulting and belligerent.  I had to explain to her that again autism is a social disorder what it means to him is not the same as what it means to us.  For him, I'm not sure what it means, but nobody should take it as an insult.  You have to assume that he doesn't know because he's disabled. 

Last year he struggled and I would ask him "What happened?  What did you do?"  And he didn't know.  Not the type of "I don't know" children say because they don't want to be chastised, but truly he didn't understand.  This year he acknowledges that he was too loud or what have you, but again he doesn't know why those things get him into trouble.  He's only at the beginning of understanding and he's not able to put himself in other people's shoes yet.

Autism is a neurological disorder.  And at age 6 HB (and various other autistic children) should not be held to the same standard as other children socially.  Why?  Because they truly don't understand.  They appear to.  But ask them to explain it back to you before assuming that they get it.  As I said, HB can't think of how others feel yet or understand completely the consequences of his actions. 

And I wish people would give him the benefit of the doubt and stop assuming that because he seems normal doesn't mean he's less disabled or that he completely understands.  This I think is what autism awareness really is.  It's not the basics of understanding autism to be a neurological and social disability but to actually be aware that your assumptions of what an autistic knows and understands can be wrong. 

So today as you go about in public, try and be aware that the odd ball person you meet may have a disability that hinders them.  Assume that they are intelligent but don't truly understand.  As an autistic adult described it imagine you are an alien and landed on a strange planet.  That's autism. Thanks.

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