Monday, June 18, 2007

What Makes You You?

When Patrick was younger and I would mention that he had Down syndrome, often people would respond with "I'm sorry."  My grandmother once told me that she felt sorry for my mom, having to "care for a child like that."

Every once in a while, people would ask me if I would change the fact that he has Down syndrome if I could.

It's an interesting thought experiment.  It's the old nature-nurture thing.  How much of Patrick's personality is genetic?  How much is based on experiences he would not have had if he had not had Down syndrome?  If he had not played Mrs. Wishy-Washy in his speech therapist's play in elementary school, would he have played Dr. Frankenstein with equal aplomb?

But underneath the thought experiment are some pretty heavy-duty questions, not the least of which is: what right would I have to change -- to utterly, irrevocably alter -- everything about him?  His very DNA?  What right do I have to judge the quality of his life, and judge it lacking just because he doesn't read or do math as well as I do?  What right do I have to reshape him in a "better" image?

And what message would it send to him, if he found out it was being considered?  In a Deep Space Nine episode ("Dr. Bashir, I Presume?") it's revealed that a character had genetic resequencing because he was developmentally slower than his peers.  After the treatment, he is at the top of his class; but he lives his life feeling that the old "him" had died, feeling as though he was a great disappointment to his parents.

In the episode, of course, the sanitized Star Trek view of the universe prevails; while still upset with his parents, Julian does come to realize that his parents were -- if misguided -- acting out of love and concern for him.

Honestly, the answer I eventually arrived at was that if the option ever existed to remove Down syndrome from a person's makeup, then it should be the person's choice.  If Patrick wished, for instance, to have cosmetic surgery to alter the shape of his eyes or extend the length of his fingers, that would be his decision.  The same would be true of any hypothetical cure for Down syndrome.

Some may say that that's all well and good for Patrick: his life is well-rounded -- he has a girlfriend to whom he plans to propose, interests and enough literacy to read about them, and hobbies (including abstract photography).  But what if the same were offered to one of my students, E., who is significantly more challenged than Patrick?

E. has vision issues, may have kidney issues, has little reliable speech (she can imitate words in a low-stress environment and can make one or two requests; she's also learning to use this to request attention without pulling hair or pinching/scratching), requires extensive adult support throughout her school day.

But by and large, she's happy, as is Patrick.  She gets off the bus with a grin and a "wow!" or "I know" (which seems to be her current way to say "hi" or "please talk to me").  So who am I to judge the quality of her life?

I teach her to the best of my ability.  I provide ways for her to communicate; I search daily for ways to engage her and keep her learning.  I also make sure she understands that she's cared for and welcomed in our classroom -- something she hasn't had for years.

If she does indeed have kidney problems or other internal maladies, certainly those should be treated.  Her teeth need considerable work, and when she's been to the dentist, her outlook and ability to learn improve tremendously.

But going to the dentist and having her mouth not hurt does not make E. not have Down syndrome.

And thus I get to the real point.  Over on Kristina's blog, there was a fairly long discussion a few months ago that I just read today, partly a debate about the cause of autism and partly a heated debate about cures for autism and how they are perceived by some in the autistic community.

Many people who have autism are opposed to the idea of a cure for autism -- ultimately for the same reasons I spoke of above in regards to Patrick.  They feel that it would fundamentally change their experience of the world -- an experience that many people with autism do not feel needs changing.

Unfortunately, the entire debate seems to -- as many heated debates often do -- have boiled down to two extremes: the group that believes in a cure and characterizes anyone who does not as not wanting to do anything to educate or help children who have autism, and the group that believes in neurodiversity and views any talk of biomedical interventions and some other approaches to autism education as offensive in the extreme.

Add into this the question of the causation of autism -- thimerasol in vaccines, other heavy metal poisoning, genetics, other environmental or biological factors -- and you have one huge mess.

So here's my two cents.

If I had a child with autism, I would look carefully for any of the concerns that seem to occur with autism -- for instance, lactose intolerance.  If my child had stomach issues that required a gluten-free diet, and that diet helped them feel better, I would do it.

Would my child appear to have "recovered" from autism?

Well -- my child would probably be more comfortable and more able to devote mental energy away from "ow, my stomach hurts!" to other tasks.  But that just means I cured their stomach problems, not that I did anything for their autism.  The results might look similar because I might have freed up some more energy "packets" to use for social interaction, speech, or coping skills in order to avoid overstimulation or overload.

(I borrowed the "packets" description from a description of multiple sclerosis I once read that said that you started every day with a set number of energy packets that you had to expend throughout the day, and when they were gone -- boom, that was it.  If you used all your energy packets going to the grocery store, you might not have energy to cook, etc.)

Ultimately, I believe that there's a difference between curing autism and educating people with autism.  That education should include social skills, coping strategies, how to recognize and deal with overload/overstimulation, and other skills unique to the requirements of having autism.  To discuss and advocate education and amelioration of physical discomforts is not to advocate taking the autism out of someone any more than teaching Patrick to remember that his Down syndrome had caused him to have a dry mouth and large tongue, and that he, therefore, should never, ever eat without a liquid nearby.

What makes a person with autism the person that they are?  What could you safely remove without altering that person's personality -- the core of who they are?

There's no real good answer to that question -- we just don't understand enough about the human brain yet.

For that reason, I think that even if an external cause for autism were to be found, if a way to ameliorate it were to be found, it should be an individual decision -- just as it should be for people with Down syndrome.

Meanwhile, I think it does us all good to remember that a life can be full and interesting even if it's unusual.  The gentleman I referred to in my previous post who created a Star Trek home theater certainly seems unusual to me, but if that floats his boat, fine.  Writing fan fiction is viewed as strange by lots of people, but it floats my boat.

And if lining squares of blocks out on the floor floats your boat, who am I to judge that?

(And if this wasn't long enough or philosophical enough, just wait for my rant on the Ashley Treatment.)

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