Functioning labels
I keep having to remind people of something significant in Patrick's history. His original diagnosis was SEVERE autism.
I'm so tired of people saying to me "at least he's high functioning' or 'look at that, he's so high functioning he can do x'.
It bothers me because the labels are so misleading. Ate the age of 3 Patrick had no expressive language (he spoke in echolalia, but had no purposeful communication) and little receptive language. He basically could not communicate. It also somehow puts a value judgment on someone. Low functioning = bad, high functioning =good. I don't believe that.
This is not to highlight what's "wrong" with my son. Or to say I want people to see how bad autism is. But when Patrick gets labelled 'high functioning' it seems to make others think he can function at a certain level, consistantly, and throughout a period of time. So they start to expect him to react, socialize, function, etc. the same way as all the 'normal' children around him. And that is not fair to Patrick.
And, for me, that just isn't what autism is. Unpredictability is a bit part of who he is. Yes, he's come a long way. And yes, if he were diagnosed right now he might have moved on the spectrum. But, I swear, if someone points out to me how 'high functioning' he is anytime soon, I'm going to scream!
I'm so tired of people saying to me "at least he's high functioning' or 'look at that, he's so high functioning he can do x'.
It bothers me because the labels are so misleading. Ate the age of 3 Patrick had no expressive language (he spoke in echolalia, but had no purposeful communication) and little receptive language. He basically could not communicate. It also somehow puts a value judgment on someone. Low functioning = bad, high functioning =good. I don't believe that.
This is not to highlight what's "wrong" with my son. Or to say I want people to see how bad autism is. But when Patrick gets labelled 'high functioning' it seems to make others think he can function at a certain level, consistantly, and throughout a period of time. So they start to expect him to react, socialize, function, etc. the same way as all the 'normal' children around him. And that is not fair to Patrick.
And, for me, that just isn't what autism is. Unpredictability is a bit part of who he is. Yes, he's come a long way. And yes, if he were diagnosed right now he might have moved on the spectrum. But, I swear, if someone points out to me how 'high functioning' he is anytime soon, I'm going to scream!
posted by mumkeepingsane | 7:38 AM
3 Comments:
I couldn't agree more dearie. Especially the expectation that they 'should' be able to to be doing what they're doing now all the time.
We still have PECs, we still use them, mainly as visual reminders, cues and prompts. There's still a load of scaffolding. Everything appears to still be there just watered down and layered with a better layer of coping mechanisms. Don't get me wrong, they're doing brilliantly, it's just that 'people' don't seem to appreciate how hard they have to work to do what other people do without thought.
Er....I think I begin to rant and ramble.
Cheers
We have the same issue especially when M's skills are so varied. Some are at grade level, some are still below grade K.
Been there, doing that... just keep pushing and the moment someone (school especially) says "but he did... " jump in and say "we told you so..."
Took me to Gr 4 to get the eldest EA support... and now I'm pushing for modification on his tests.
As the saying goes "Rome was not built in a day" and people never remember what was... only what is.
Which is why I've gone back to a paper journal... b/c hindsight can be cruel too and make me think of my "coulda, woulda, shoulda" list.
S.
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