Saturday, July 01, 2006

Points of agreement?

I have been following autism blogs for some time now, and I'm terribly disheartened by the degree of hostility and deep devisions between constituencies.

It seems as if there are definite 'armed camps'. Cure/not cure, NTs/ACs, High functioning/low functioning. I'm sure there are more dichotomies I could come up with, but you get the idea.

Here's the strange thing--many of us live in *more* than one 'camp', or constituency. I'm a parent of a child on the spectrum. I'm also an "aspie" myself. I'm also a medical professional. (disclaimer--I don't work with autism--I'm a physical therapist) So at different times, I may wear different 'hats'.

But regardless of what role I take at any given time, here's what I believe:

"Function" is a matter of perspective. Someone using a wheelchair in an Escher house would likely be 'low functioning'. There is no clear line between what 'high' and 'low' functioning *is* in the world of the autism spectrum. And even within the same individual, level of function may change depending on outside stressors, physical health, and coping resources.

If 'cure' means obliteration of what makes my brain function in the way it does, no thank you. What I want is to decrease barriers to function and improve coping ability in an often chaotic world.

What is 'disabling' is not necessarily the *autism* but the host of secondary impairments related to fitting a round peg in a square hole.

In fact, I wish we could move the debate along the lines of the World Health Organization's terminology:

Impairment--any loss or abnormality of psychological, physiological, or anatomical structure or function.

Disability--any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being.

Handicap--a disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents that individual from fullfilling a role that is normal, depending on age, sex, social and cultural factors.

I'm all for decreasing disability and helping to mitigate impairments. Anxiety? Sure--take it. Depression--nope, don't want any. Face-blindness and difficulty reading non-verbal cues? Love to learn better ways of getting around that.

My autistic-thinking brain? Don't you dare mess with that. My ability to see patterns and hyperfocus is *not* disabling in my life. My sensory processing can get in the way at the grocery store, but my poetry is richer because of it. Special interests? Well, in my world, it's a good thing for a physical therapist to be intensely preoccupied with anatomy and kinesiology.

So what *can* we all agree on?

Maybe for starters, that decreasing disability by minimizing secondary impairments is a good thing. I can stand behind that and not feel as if my self-hood is being devalued.

Perhaps individuals would be willing to ask a different question.

Instead of:
"Will this treatment/medication/therapy/supplement *cure* autism?"

"Will this treatment/medication/therapy/supplement help improve my/my loved one's quality of life?"

Yeah--that works for me. What about you?


r.b. said...

"Quality of life" would individualize the process, and predetermined subjective standards of "normalcy" would not enter the picture.

I think it is an idea that would have been non-threatening to me even in my curebie days.

Shawn said...

I'm also disheatened by the hostilities.

I think the WHO terminology sounds a little more suitable to constructive discussion but I fear that it would only last a while.

It appears to me that we need to become less sensitive to semantics in order to have more productive discussions. An impairment to one person may be a disability to another. We can learn to accept that others use different terms than we do. The important thing is whatever specific characteristic / behavior / trait we are discussing, not what we label it.

María Luján said...

I am a mom- in a family- doing biomedical with my son, perhaps you have read some of my posts. My goal is life quality and happiness for my autistic son .
Yes, for me, it works too.
María Luján

ballastexistenz said...

I'm not sure all of us do have the same goals even there.

But with regards to "quality of life," that's a term that is already frequently twisted into meaning "predetermined subjective standards of normalcy", so I doubt that would work.

Joseph said...

"Will this treatment/medication/therapy/supplement help improve my/my loved one's quality of life?"

I think the debate already is primarily about this, with the answer usually being "most likely no" and many people insisting it is "yes" by citing anecdotal evidence and inconclusive pseudoscience.

Beyond that, clearly most parents must want the best future possible for their kids, regardless of which side they are on. If that's what "quality of life" means, then that's fine. (However, I would question referring to certain types of life as having "quality" and others as lacking "quality").

María Luján said...

I do think that "life quality" , as several pointed out , has been understood of different ways. by different people, probably with different expectations, attitudes and meanings.
I understand what ballastexistanz says about this, but my personal understanding is different.
For me, at the individual case of my son, what has been diagnosed as ASD presents also several medical conditions that I could detect/treat/heal. In terms of life quality I do think that the treatment of these medical conditions will improve my son´s life quality- not in terms of "normalcy (that is not my goal)- but in terms of the avoidance of all the negative consequences of this medical conditions, if untreated.
Joseph says
I think the debate already is primarily about this, with the answer usually being "most likely no" and many people insisting it is "yes" by citing anecdotal evidence and inconclusive pseudoscience.
I disagree with this. Again, the science I am based on is not pseudoscience. The supposed serious science in what the "most likely no" is not conclusive or complete. Many of the aspects of ASD has not been studied yet- at different levels of again biochemistry and physiology and impact of environment. I have problems with the understanding of the increasing published reports about biomedical as conclusive or proofs. But it is different to say that all has been done.

MAría Luján

Kristina Chew said...

I do ask myself the question of might this or that help Charlie. I don't tend to use the phrase "quality of life"; I prefer the more amorphous "the good life." In Charlie's cases, there are some things that do I would say certainly help him to have a better life, such as getting his self-injurious behavior under control and teaching him to read. And some things are more my and Jim's own choices for Charlie---such as our choice of ABA for him as a primary teaching method----a choice only made after observing and living with Charlie and seeing him have a very difficult time in classrooms with different methodologies.

I share Lisa's disheartened response about the hostility and divisions in the blogging community. I don't mind contention----my husband and I have huge debates between ourselves that might appear pretty divisive, but are not at all---and I hope we can keep listening to each other and learning.

LJCohen said...

I appreciate all the thoughtful comments on this post. Although I don't believe any group of individuals can ever speak in one voice, I do hope that members of the autism community can some to *some* points of agreement.

My fear is that if we don't, then the 'tyrrany of the majority' will continue to play 'divide and conquer' with lives of autistic people in the balance.

Ashley loves Leo said...

I couldn't agree more Lisa! I love how Leo can tell me what shirt I wore the last time I was at a certain friend's house. I love how he can tell me what track number is the song I'm looking for on a CD. I love how he sees the world in his unique way, and how wise he is because of his splinter skills.

But yeah, anything that gets in the way of Leo being happy was and is always my fuel for getting any help for Leo. Yes, I'd love to say goodbye to those things that caused stress and impaired him from the things he wants to do.

Symantics do get in the way. I'm shocked at how much people don't like me or my thoughts.

I love those many hats you wear Lisa! I love that you're a PT (my unrequited love, hmmm...maybe one day I'll tackle biochem). You must be so in tune - I feel like I am to other's physical states. One of my many genetic contributions. I also have serious SI issues and depression struggles. We all have stuff!

Keep on writing Lisa! Ashley Morgan, madly in love with ALL parts of my son. Autism=Leo=typical=funny=smart=loving boy