7/29/2009

Reflecting on neurons, cures, and the imprecision of language

We are our neurons. I’ve said it several times in several places since I began to look at blogs, Huffington Post, and Age of Autism back in March.

Hard to believe that before March of this year I didn’t know about all the blogs or Age of Autism, I know. I knew of some websites and forums because I had done a paper on the culture of autism in 08, but I really didn’t know about much of the internet stuff available out there, nor the huge rift between the parents of children with autism along the lines of vaccines/not vaccines and neurodiversity/antiND, and I am sure there are more, but I haven’t been on any forums that are out there, except WrongPlanet, so I’ve missed a lot of what goes on for actual discussion boards. I think I’ll count myself lucky on that front and stay away from those.

I have argued that we were our neurons and that saying autism was evil was tantamount to saying our children were (based on another’s comments one of the first times I ever commented on a blog), although it became apparent after a few exchanges that we were having some miscommunication problems since English was his second language.

So, yes, I did write that schizophrenia couldn’t be separated from the person (I never wrote it shouldn’t be cured). I wrote on April 10th (and I put on my pissy hat and threw around my teaching psychology --since I was two weeks post hysterectomy, bored, and in pain, I'm not going to be sorry for that bit of pomposity): “ You can't separate autism from the child, or schizophrenia or bipolar from the person. They are neurological disorders and we are our neurons. You called those things evil; I, from my vantage point as a college instructor of psychology, stated that this was tantamount to calling our children evil.” The individual had written these things were evil. We figured out his idea of evil and mine differed tremendously because of the language barrier; we agreed to disagree on some stuff and we parted ways amicably.

On Best’s blog yesterday, someone brought up the schizophrenia/autism/same thing/cure/I’m deranged argument, and I argued that schizophrenia is not the same thing as autism and that I’d cure it in a heartbeat. And I would. Of course, I’ve said I wouldn’t cure autism and people mistake what I mean by that even when I explain what I mean, because cure in different cases to me has different meanings.

And semantically I contradicted my post of April 10th and argued that schizophrenia was not a systemic difference in wiring and that it would be easier/theoretically possible to cure. Of course, that is imprecise. Easier to treat, bring the symptoms under control, but permanently cure, probably not.

So you’ve got a contradiction. Me saying schizophrenia couldn’t be separated from the person and me saying recently it could in that it was not like autism. That pissed people off because autism used to be called childhood onset schizophrenia. They’re not the same and they don’t look the same. Of course, you’ve got people out there thinking that autism and mercury poisoning are identical, so there’s no accounting.

So, which is it; what do I really think? Well, it depends on how I feel about my brother that particular day, I guess. And whether I’m keeping in mind some of the research on schizotypal personalities and the theory that schizophrenia is schizotypal to excess, a problem with neurotransmitters causing the condition. And whether I’m popping off a quick answer to someone who’s irritated me.

My brother’s been a pain in the ass in the past, notsomuch now since his medication eliminates the behaviors and thoughts that made living with him difficult. Neurological disorders can be a pain in the ass for the family members without being a pain or a problem for the individual, even if you personally think it’s destroying his/her life. He doesn’t seem unhappy, and on his meds, he isn’t such a pain in the ass. So: pain in the ass to me; let’s cure it. Not so much a pain in the ass to me and he’s not clamoring for a cure; not so much a drive to look for a cure, but effective treatments. It isn’t perfect and it isn’t consistent across domains, but it is real. As my father says, if it ain’t eating no hay….

Does that make sense? The drive for a “cure” means different things to different people at different times. I often conceive of cure when it is used in relation to autism as the same thing a cure for Down Syndrome has meant: a genetic test while in utero allowing 90% of all identified Down fetuses to be aborted. I’m not for that. Others mean cure by reducing a child to an NT stereotype; wipe all of what autism means out, the good with the bad.

Now, I think this depends on how one conceives of autism.

If you think everything going on with your child that you find difficult and irritating to deal with as the autism, then it means you are creating a distinction between the good parts and saying that’s the child, and the parts you don’t like and saying that’s the autism. And a parent can do this and not have any particular point of view on causation. I think there may be some existential beliefs behind this one. Who wouldn’t, though, agree, that yes, if you could lift the burdens your children bear from their shoulders, you’d all do it. So, in this sense, if you could take the parts of the child that you term autism as being the maladaptive behaviors and remove those maladaptive behaviors from the child, who wouldn’t?

If you conceive of everything that is medically wrong with your child as being the autism and the child has accompanying medical conditions besides autism, I can understand parents desire just to wipe it all out: autism is a scourge to them that has taken their child away from them and is causing the child all sorts of ailments. If you add on top of that the idea that the government, the medical community, and industry intentionally caused this to your child, thereby robbing you of your child the way the child was supposed to be, I think anyone could understand the anger, rage, bitterness, all while thinking that, hey, not the best way to move forward in life. Who wouldn’t be for eliminating, reducing, removing those medical conditions? We can deal with the conspiracy theory stuff separately.

Autism, for some parents, is a horrible thing to deal with. It is their worst nightmare. Well, it is. They should be able to say, here's my story; I just think that some parents go WAY too far in their pity parties and do so at the expense of their child, and then it turns out it these parents aren't even dealing with the most impaired on the spectrum. Some children are profoundly impaired, have accompanying intellectual disabilities, epilepsy, intestinal issues, food allergies and are on the extreme end of the spectrum. These parents are forced with hard decisions to make as their child is so profoundly impacted that they require around the clock care and will always need such care. They deserve empathy, compassion and people getting off their asses to offer real assistance. If they start to use the language that some AoA parents have used regarding their children being “dead” and cancer being better (which should be beyond offensive when the parent then goes on to say the child is “recovered”), then there ought to be a “Gosh, I think you might need a safe outlet and a trained therapist to work this out with because that isn’t right and it sure isn’t healthy” along with the compassion. I get that everyone handles adversity differently and have read people defend some of these folks by saying they are entitled to their feelings. You know what, I disagree with that. It's like to saying to a child abuser, well, you're feelings were valid. Bullshit. Some feelings aren't valid. Aren't acceptable. Ever. And most people would agree with that assessment. We'd just draw the line in different places.

This extreme end of autism isn’t the case for the majority of autism parents, although autism is never easy or it wouldn’t need the diagnosis, would it? But it doesn’t have to be a tragedy or the end of the world. Even when you are faced as a child reaches adulthood with the realization that all the effort that you still haven’t created enough functional life skills for the now grown child to live independently or even assisted, it doesn’t have to be a tragedy. It doesn’t. You work at creating the best life possible for the now adult child of yours.

I’ve stated that I would cure my son in a heartbeat of the cognitive impairment that holds him back. If I could lift that damage out from the stroke (and same for my brother who also had a stroke), I would.

Folks can take that and run with the idea I would do nothing to help my children with their ASDs despite my having written in detail what I believe in and how hard I work with them.

I am lucky; my daughters are so much easier to deal with than their brother was. They have no accompanying cognitive impairment and the little one has progressed so far with traditional therapies and hard work on social skills and appropriate behavior. My son is happy with his life; he toodles off to a center for the disabled each day and comes home at the end of the day having had a life of his own with other individuals with similar difficulties. He’s relatively well protected and so has not suffered the bullying and abuse that many of the children who attend public schools face. I think it’s likely he is as happy as he is because he was spared that gauntlet, a gauntlet of nastiness that is alive and well and dished out by so many autism parents.

I can’t help but think, wow, sometimes, people, it doesn’t have anything to do with autism. Some people are flat out bullies and having autism somewhere in their lives gives them a convenient excuse to let it all hang out, especially when they are protected behind a screen name and relative anonymity.

This brings me back to the idea of a cure. If one could separate out all those things that people “hate” about autism and leave who the person was, the good things, the things about one’s child that one loves, how is this any different from picking traits about a NT person and saying I’d wipe that out about you? I mean, I’d like my husband to rinse the sink out after shaving and pick up his dirty laundry. Can we find a cure for absentmindedness and not caring about the same level of cleanliness?

I think despite people’s best intentions, language remains imprecise because it is a personal construction. Each person brings connotation to the words we use, as well as their built-in biases. If you’ve already decided you hate me and everything I stand for before you’ve even read me, based on hearsay, there isn’t anything I can do about that except to keep explaining who I am and what I stand for, as well as what I stand against.


As a parting thought on autism and maladaptive behaviors: which behaviors do you want to eliminate in your child? Because isn’t that a more workable way to handle it than this cure/not cure mentality? This particular behavior isn’t working, so let’s work on providing a more adaptive behavior to put in its place. At the same time, let’s work on figuring out what was prompting the behavior. All behaviors are engaged in because at some level they are fulfilling a need. Figure out the need and substitute a more suitable behavior to fulfill the need.

Those last two sentences apply nicely to bullying, too, don’t you think?



For a book that deals with the struggles of what a cure would hypothetically mean and an interesting read, I recommend Elizabeth Moon’s The Speed of Dark. Whether individuals feel Moon adequately and accurately conveyed autism or not is not what I find relevant, but the struggle behind the book at a mother’s feelings about autism, cures, and what it means to be a person are. The work also raises societal questions as well relating how society treats the disabled, and how they would potentially treat people who are happy with who they are if there were a cure to “fix” them.


http://en.wikipedia.org/wiki/The_Speed_of_Dark

9 comments:

Mom26children said...

When a parent speaks about how horrible Autism is for them or their family, they are forgetting about their child with Autism.
Example:
They had a horrible vacation.
They cannot enjoy their NT children.
They cannot go out to eat.
They spend all of their money on treatments.
They have lost all of their friends.
They are inconvenienced because of potty issues.
They are lacking in sleep...etc.

How sad for their child(ren) who are on the other end of this self-pity...

Nostrum said...

My only nitpick on the whole 90% of Down Syndrome babies are aborted statistic is that as far as I can tell it's coming from 1990's European data from women who were tested and told the results.

I know in the US, testing is optional. Many people do not get tested because they don't want to abort. As science progresses, testing also can help you correct heart abnormalities right away, so there might be more people getting the test that don't want abortions now. Our attitude about Down Syndrome has also improved over the years, now that children aren't routinely institutionalized.

Not to say that it isn't pretty grim to know people specifically seek out tests in order to abort children with disabilities, but I don't think it's quite as simple and accurate to say that 90% of babies with Down Syndrome are aborted. Make sense?

Just a nitpick of mine that really had nothing to do with your main point, which is that you find the idea of "curing" autism by removing it from the gene pool horrific. I do, too.

kathleen said...

Really well put Kim. I have read the speed of dark-I found the idea of it very thought provoking...but was disappointed in the ending.

KWombles said...

Kathleen,

I was disappointed with the ending, as well. But even it left one wondering if that was the author's wish fulfillment there? What does that say about the societal pressures people with a particular disability would be made to feel if a "cure" were found for that disability and they refused it?

KWombles said...

Jeanette,

It does tend to be about them and not the child, not how difficult it is to be the child and have the difficulties and on top of that, all the negativity the parents are no doubt putting out.

KWombles said...

Nostrum,

I love nitpicking! :-) It seems too neat a number since it is rounded off, and I should have provided some sources.

Near as I can tell, though, it is the "official" number.

http://scienceblogs.com/gnxp/2008/09/down_syndrome_and_abortion_rat.php.

About 70% of women in the US choose the screening, so it would perhaps be more precise to say that where and when it is screened for, the vast majority will abort if the test indicates Down:
"Recent US studies have indicated that when Down syndrome is diagnosed prenatally, 84% to 91% of those babies will be killed by abortion." http://www.physiciansforlife.org/content/view/1301/26/

Personally, since I knew I wouldn't abort, I did not have amnios on any of my three. I'm not judging people who make the best decisions they can on that matter, but it is something that gives me tremendous pause as a society deciding on who deserves to be born and who doesn't.

Look at India and its overselection of female fetuses to abort. Somehow we have to balance the rights of the individual to maintain the right to make those decisions while members of society work to foster an attitude of openness for those with disabilities and a sufficient support and education system so that parents make informed decisions.

:-)

Nostrum said...

Those are the same studies I've seen elsewhere. There's a study from China, which we all know is an apples and oranges situation, and then there's a 1999 UK study and two European 1996 studies.
I've looked, but I've found no studies of Americans, and other than the Chinese study, there isn't even anything younger than a decade.

I would not be shocked to find out that most people who opted for screening did so in order to abort, but I think we're really just guessing about the numbers.

Nostrum said...

Oh, and I missed the second link. It's on "Physicians for Life" which sounds like a very unbiased source, no? But it looks like they've got some actual citations for some actual American studies. Finally!

http://www3.interscience.wiley.com/journal/109608754/abstract
Looks like it also covers 1999 data, even though it was published in 2004. And even though it's a public domain document, they're charging to access the full text, grr. There's no actual rate listed!

Ok - found one for 1996 in Hawaii, and that listed a rate of 84%. http://www3.interscience.wiley.com/journal/60500567/abstract

And then there was a similar Atlanta study with a rate of 86%.

Ok, my nitpicking tangent is satisfied.

KWombles said...

Glad you were able to satisfy your nitpicking.

:-)