Expanded definition of 'autism' goes astray - Page 2 - Mothering Forums

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#31 of 34 Old 05-13-2013, 07:58 PM
 
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Originally Posted by kathymuggle View Post


I will be happy (yup, happy) if they separate out autism from Aspergers.  I am entirely tired of people thinking autism is just a "brain difference" and that autism simply means "quirky kids."  We will never do proper research into the disorder  if everyone thinks autism=Abed from Community or Sheldon from Big Bang.  I feel lumping Aspergers in with autism has caused less real awareness of what autism can look like than perhaps anything else.

 

 

the problem is that this isn't just about your nephew vs. Sheldom. There are so, so, so many in-betweens. A  person who seems high functioning in some areas can be quite low functioning in others. And some kids on the spectrum seem very behind at certain stages of life, but not so behind at other stages.

 

My DD is considered "high functioning."  We don't know if she will ever live on her own, though.  She can discuss the pros and cons of autism research, so she meet the author's litmus test of not counting, yet in this description of what counts:

 

 

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They have no bearing whatsoever with the experiences and suffering of those who must daily face what I can only call “autism prime.” Such people exist in a swirling, nearly impenetrable world of their own punctuated by violence, lack of articulate speech, weird obsessions, incredible indifference and a hundred other heart-breaking negatives.

 

every item has been true about my DD except violence, and violence is less typical of girls on the spectrum than boys.

 

She doesn't bang her head into the wall any more, hasn't since she was about 12 or 13. She doesn't line up rocks, at least while any none family members are around. She understands what is "typical" behavior, and can pass when she wants to.

 

The author sees a clear line dividing who counts and who doesn't, and I don't see where you would draw the line. May be because I know too many people on the spectrum?

 

I think an analogy to the word "autism" could be the word "cancer."  Cancer is used to refer both to certain types of small moles that can be easily removed and require no further treatment, as well as an aggressive illness that can quickly kill. Just as we have different words to specify the different types of cancer, we need words to describe the different  presentations of autism.

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but everything has pros and cons  shrug.gif

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#32 of 34 Old 05-14-2013, 07:15 AM
 
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the problem is that this isn't just about your nephew vs. Sheldom. There are so, so, so many in-betweens. A  person who seems high functioning in some areas can be quite low functioning in others. And some kids on the spectrum seem very behind at certain stages of life, but not so behind at other stages.

 

My DD is considered "high functioning."  We don't know if she will ever live on her own, though.  She can discuss the pros and cons of autism research, so she meet the author's litmus test of not counting, yet in this description of what counts:

 

Sure. It does not change my opinion that the highest functioning and lowest functioning have very different needs, and require different services. There is also the issue of where do those with asynchronous development, or those squarely in the middle fall (which is not up to me to sort out) - but my opinion is the umbrella is too large.  I believe the overly large umbrella, coupled with a white-washed media portrayal, has given the public a false idea of what autism can look like - and this affects such things as research dollars.


There is a battle of two wolves inside us.  One is good and the other is evil.  The wolf that wins is the one you feed.

 

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#33 of 34 Old 05-14-2013, 08:25 AM
 
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I missed a few things in my first response.

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Originally Posted by Linda on the move View Post

 

 

The author sees a clear line dividing who counts and who doesn't, and I don't see where you would draw the line. May be because I know too many people on the spectrum?

 

I know a lot of people on the spectrum.  It has not changed my perspective that the umbrella is too large - in fact, it might have increased it.  The highest functioning child I know fairly well is a friends daughter, and she is also in a group I lead.  She is prone to raging, sleeps very poorly and is highly sensory seeking.  She also talks, goes to the bathroom on her own, has some friends, etc.  A snapshot of her life and needs looks very different from a snapshot of my nephews.   

 

I think an analogy to the word "autism" could be the word "cancer."  Cancer is used to refer both to certain types of small moles that can be easily removed and require no further treatment, as well as an aggressive illness that can quickly kill. Just as we have different words to specify the different types of cancer, we need words to describe the different  presentations of autism.

Yes - people get the spectrum of cancer.  I do not think they get the spectrum of autism, for a variety of reasons  The goal is that people are aware what autism looks like and the challenges that are faced across the spectrum.  Maybe that can be achieved while keeping the big umbrella, but maybe not.  i also think cancers share other similarities that autism does not - such as understanding of causes, and goals.  

 

 

We do not have a good handle on autism.  We do not know what the real numbers are (they shift constantly) we know it is growing, but we do not know how much is due to real growth and how much is due to better diagnosis (a problem that could be solved by parsing out the groups: Let's face it - low functioning autism is not easily "missed" and if it grows from year to year, it will be illogical to blame it on "better diagnosis").  We do not know much about the genetics of autism and we have a laundry list of environmental things that may contribute to autism - but as far as I know we do not have any movements to get the word out on environmental triggers. Autism is a big black hole of lack of knowledge - and maybe breaking it up into smaller chunks will help us understand it better.  

 

From a studying autism POV, parsing out the groups might make more sense and give us more answers.  

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There is a battle of two wolves inside us.  One is good and the other is evil.  The wolf that wins is the one you feed.

 

Book and herb loving mama to 1 preteen and 2 teens (when did that happen?).  We travel, go to school, homeschool, live rurally, eat our veggies, spend too much time...

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#34 of 34 Old 05-17-2013, 07:56 AM
 
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Originally Posted by Linda on the move View Post
...There are so, so, so many in-betweens. A  person who seems high functioning in some areas can be quite low functioning in others. And some kids on the spectrum seem very behind at certain stages of life, but not so behind at other stages.

 

My DD is considered "high functioning."  We don't know if she will ever live on her own, though.  She can discuss the pros and cons of autism research, so she meet the author's litmus test of not counting, yet in this description of what counts:

 

 

Quote:
They have no bearing whatsoever with the experiences and suffering of those who must daily face what I can only call “autism prime.” Such people exist in a swirling, nearly impenetrable world of their own punctuated by violence, lack of articulate speech, weird obsessions, incredible indifference and a hundred other heart-breaking negatives.

 

[snip]

 

The author sees a clear line dividing who counts and who doesn't, and I don't see where you would draw the line. May be because I know too many people on the spectrum?

 

 

 

I agree with you, Linda.  I don't think there are clear lines in how you can categorize one form of autism another.  Even under the old system the division between autism, PDD-NOS, and Asperger's was fuzzy at best and was diagnosed differently by different doctors. 

 

I also agree with you that an individual can be high functioning in some areas and low functioning in others.  We see this with DS.  Even at age 9, he certainly has some strong opinions about autism and at times he is able to articulate them.  He can read at a remarkable level. He understands complex geometry. He has an amazing visual memory. 

 

He also can't function in a regular classroom because he cannot process the verbal language fast enough.  He needs to be "retaught" arithmetic with regrouping every couple of months.  He can spell words at the college level, but can't comprehend the rules of the spelling bee.  He cannot tolerate changes to his schedule. He has the exact same conversations with us day after day after day, sometimes several times a day.

 

I don't know if my son will ever live on his own, hold a well-paying job, or have romantic relationships. We do everything we can to build on his strengths and better develop his weak areas. I worry about his future constantly.

 

I think articles like the one in the OP only serve to create divisions and animosity within the autism community, when we ought to be focused on supporting each other along our different, but similar, paths.


Lolly
Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)

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