Sunday, September 19, 2010

what's wrong with max?

In my recent post "autism, ethics, and genetic testing" a few commenters took issue with me writing "We wouldn’t have gone through the agony of searching high and low for an answer as to what was wrong with our son."  I was taken to task for stating that there is something "wrong" with Max.  Being someone who is typically careful with the words I write, I did take these comments seriously.  If you look at the definition of wrong, you may understand my use of the word in a different light.
  • Not fitting or suitable; inappropriate or improper
  • Not in accord with established usage, method, or procedure
  • Unacceptable or undesirable according to social convention
  • Not functioning properly; out of order
One only has to read the daily feedback journal I get from his junior kindergarten teacher to know that his behaviour is often not fitting, suitable or appropriate.  While this behaviour doesn't make Max bad, it is in actuality "wrong".  That's not to say we won't be able to teach him the proper way to behave in different settings - he just doesn't pick it up on his own like his neurotypical peers.

Because Max doesn't learn from his environment, he often behaves not in accord with established usage, method, or procedure. Again, the reason he is in such intensive therapy at such an early age is to get him to a point where he can figure this stuff out on his own.  He is not there yet, but we have high hopes that one day he will be.

Often his behaviour is unacceptable and undesirable according to social convention. You only have to spend a few minutes with Max to see this. Whether it is him screaming non-stop every time the back door is opened and not immediately closed, demanding to eat food only out of the original container it came from the store in, or refusing to take his shoes off, even when he is asleep in bed, or whatever else he cooks up on any given day - they all fit the bill.

Autism is defined as a "pervasive developmental disorder" - which means Max is not able to function properly in social settings, he often does things out of order. So, while it may make some people uncomfortable when I say we wanted to find out what was wrong with Max, we really did want to find out what was wrong with Max. It's as simple as that. When your child is banging his head on the wall to the point that he loses the hair on the back of his head, having meltdowns that last for hours, not able to speak or respond to his own name, feed himself or make eye contact, there is something "wrong" with your kid.  And as a parent, it's your job to get to the bottom of it - whatever words you want to use to describe it.

Fire away.

6 comments:

  1. I'm with you sister.

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  2. pffff. people are stupid. let them try and deal with a challenging child for a week and see what they say at the end. A parent gets to deal with their kid however they see fit, period. (can you tell i take great offensive to people trying to tell other people how to treat/raise/talk about/talk to their kids??)

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  3. Amen, Kat. Try living with our children for a year and see if you still think there is nothing wrong with my them. IMO the whole neurodiversity (see http://www.urbandictionary.com/define.php?term=neurodiversity) movement is complete nonsense.

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  4. Anonymous7:41 PM

    Well written, girl.

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  5. I didn't read your original post or comments but i love your response. fair and informed whereas I would have just cursed and probably said inappropriate things ;)

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  6. Anonymous10:08 AM

    I find the neurotypical movement to be quite tiring. The NTs hardly ever note those of more severity and thus marginalize my son further. Those with “autism” trumpeting their condition as social variation often have employment, family, university educations, and in some cases have even testified at the Supreme Court of Canada (see Auton v BC appeal). That my son will ever be able to comprehend what I write here is still an unknown. The dissenters that posted negatively certainly have a different type of autism than my son. Those that maintain trying to help and teach our ASD children is in some way not appropriate for who they are is beyond redemption. Not teaching our son the skills of independence (eating, dressing, toileting, functional communication) would plunge his life, after Mom and Dad die, to one of total dependence on parties that do not love him and see him as a daily chore for employment wages. How any party can rationalize this as fine is beyond any form of understanding. This does not mean to change him, simply teach him – I learned accounting, and other than the whirlwind secret agent lives many accountants lead, very little of “me” changed because I learned accounting. There is no intent to change my son and I have and will continue to sacrifice all that is mine for his betterment and education.

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