Saturday, November 13, 2010

Forget False Dichotomies: The Bell Curve of the Autism Community

Diane Yapko writes an interesting piece at PsychCentral on neurodiversity, noting that the stark contrasts that many would place, neurodiversity versus cure, on the autism community, really don't exist. Perhaps it's inevitable that the debate gets rendered in black and white so that neurodiversity is presented as an ideology that would leave autistics without treatment, without therapies, the them in this us-them tug-of-war.

Perhaps there are people who are that two dimensional; perhaps there is a group of people who claim to be neurodiverse and think that means no treatments, no interventions, no help for a child. I hate the thought that there are people out there who would literally do nothing to help their child to grow, to develop, to overcome obstacles, who wouldn't move heaven and earth to help their child. Of course, we know there are parents out there like that in the general community, parents who fail their children in every conceivable way, and that undoubtedly happens for autistic children as well. On the flip side, there are no doubt parents, who in their zeal to cure their child, go too far, and in the process of running down every possible cure, subject their children to nearly equally abusive experiences. And maybe both sets of parents conceivably do all these things and more in the name of love.

I heard someone say, in a recent interview I was listening to, that it's out of love parents do things and who are we to judge. But we do, each and everyone of us judge. Even this person. We can't get around that. We hold up other people's behaviors to our owns, we compare, and we place our decisions as the right ones. If other parents deviate beyond the threshold of what we'd be willing to do or believe to be morally plausible, then they are wrong, they're bad parents. We all do it, and we do it with pride in our decisions, in conviction of the superiority of our positions, convinced we've displayed clear critical thinking skills and that anyone who disagrees has failed to exercise those skills.

I tell my students, sometimes daily, that we are always assured that if we believe it, we are right, and "if I'm right and you believe differently, you have to be WRONG." A lot of the rhetoric on autism talks about how two dimensional autistic individuals are, how hard a time they have of seeing shades of gray. The reality is that we are all hardwired for black and white. All of us. It's only when we begin to shift our own personal actions into what we'd have considered no-no areas that there become shades of gray. Grays only become visible when we mentally place ourselves in other people's situations and try to get a sense of what we'd do faced with the same situation, when we really think about what we'd do and start chasing down possible consequences.

Children see the world starkly: right or or wrong, heroes and villains. Our cartoons and comics often reinforce this flatness: Batman is a moral arbiter; while attracted to Catwoman, he rejects her because she operates outside the law, even though her aims might be laudable; he ignores that his actions arise from the same moral stance (been rewatching animated batman with the kids, offers lots of opportunity to discuss morality and theory of mind issues). Our fiction also renders things flatly, especially the popular fiction. Most of us, despite our tendency to think starkly (us-them dichotomies), find ways to navigate the world more multi-dimensionally. We ignore those differences we've decided don't matter in our real world relationships and only attend to those belief systems that are fundamental to our core identities. Not into politics? Then you probably don't care if someone is republican or democratic. Not into religion? Then you don't care overly much whether someone believes. We do this for countless potential differences.

If we have one core dimension that we consider foundational to our identity and we find others who have that commonality, we focus on core commonalities and ignore the differences, dismissing the importance of those characteristics. This happens in our autism community as well, but instead of focusing on the overarching commonality of autism, what we do, some of us, is focus on differences, real or imagined, to create a clear us-them dichotomy. We do this, even if it means we create huge strawman arguments to create the other side so that we have a clear group identity.

That means some of us set ourselves up as the aggrieved ones who are woefully misunderstood and persecuted. Some of us set ourselves up as martyr parents. Despite the desire to believe there are clear us-them divisions, there aren't, and if one takes the time to read through the lines of some of the more strident postings out there, it should become evident that we are often more in agreement than not. I think most of us, though, reject that hardcore us-them mentality. I see it daily on the blogs on our directory. Some are fringe bloggers, but most just want to talk about their lives, the good and the bad, and get support while giving it.

Let's assume that there are fringe elements that would either do every conceivable woo treatment out there as well as some who would do absolutely nothing at all, not even basic parenting skills, to help their children. But let's also admit that we'd be hardpressed to find actual concrete examples of either true fringe as they are often argued to exist. We'll place a bell curve on the autism community, if you please.

Oh look, more of us have to be in the middle, with more in common than not. Go figure.

I choose to not define myself as part of the fringes; I would not do absolutely anything, but I would never do nothing. I do not believe that believing in neurodiversity means what some insist it does, but let us say it does: that it is a do nothing philosophy that would not help individuals overcome any challenges or learn anything (rather absurd).  Let us say it is the right side of the curve. Let us say the curebies are on the left and they would do a complete reboot if that's what it took. These fringe elements, these outliers, are not the driving force, either perspective, of the autism community. They're loud, certainly, but that's only if you're fixated on the edges. I'd bet you most people in the autism community are not.

Most of us agree: 

We want our children to be accepted into mainstream society as individuals who have innate value regardless of functional levels.

We want research into therapies that will mitigate the symptoms and behaviors that cause them disability, pain, and difficulty.

We want access to effective therapies to help our children overcome their challenges.

We want safe places for our children to be cared for when therapies and treatments do not remove all disabilities and impairments.

We want meaningful work for our children when they grow into adulthood, so that they can feel they are of service and make meaningful contributions to society.

We want support services, education and training for family members and professionals working with our children so that we can best serve our children.

We want acceptance for our families as we work to navigate this world and do the best we can for our children.

We are members of the autism community and encompass family members, individuals on the spectrum, and professionals who provide services to autistic individuals and their families.

We can forget about false dichotomies that do not exist in reality.

We can embrace pluralities of opinions and acknowledge that we are one group, united under a bell curve.

We can work to create the world we wish for our children and ourselves.

Even better, each and every day, most of us do just that.


Happy Elf Mom (Christine) said...

Word verification: curel

Well. I would be more toward the "do nothing" side, but certainly my children who need it get speech therapy and that sort of thing.

The problem comes when things like this are NOT COVERED by insurance. Are you going to mortgage your house a second time and risk bankruptcy on the CHANCE that a treatment will help? I look at it as, I'm probably going to at least be living with Woodjie for a good long time, and shooting myself in the foot retirement wise would be poor planning for HIM, too.

But I think most of us are somewhere near the middle but get pushed toward either end sometimes. Just ask a mom if she vaxes or not and look at her face, yk? And we really don't need to fight like that...

Kim Wombles said...

Well, but I'm sure you don't do nothing; you parent the child, right? You do what you can to help the child master new skills, learn how to control his impulses, navigate the world, right? The folks who put out that there are parents who do nothing for their kids appear to mean do absolutely nothing to help the child grow and improve.

I can honestly say that we've paid copays for speech therapy, but that's all we've done out of pocket; I've bought books and read them in order to work with my kids, and it could be argued that my master's in psychology was all about helping my kids better. I don't think we have to go broke or mortgage our own futures to help our children. I think we need to think about things carefully, be prudent and frugal and consider outcomes before we plop money down.

I guess I wasn't even really considering that one would think "do nothing" meant not spending money on therapies or treatments, as I've never seen anyone who accuses parents of doing nothing mean it in that way. They've always twisted it to mean if one had a non-potty trained child, one wouldn't work to help the child become continent, for example. And then they put on a "can you believe there are people who would think it's okay to let their child smear feces?" moral outrage that anyone would keep them from helping potty train their own child. That seems to be the kinds of arguments that folks on the fringe are coming from.

My main argument is that people aren't, for the overwhelming majority, at all like that, on either side of things. No one in her right mind would leave a child in whatever stage of development he is and not work to help him master new skills. No one. No parent in her right mind would think that vaccines are the root of all evil, the source of a programmed and intentional eugenics program and yet think that absolutely anything that can be bought on the internet and promises to cure autism is okay to put into her child's body.

Thankfully, most of us aren't on the edges and it's time that those of us in the mainstream are louder than those on the edges. :-)

Floortime Lite Mama said...

very well written post

Happy Elf Mom (Christine) said...

Ahh, but "parenting" the child in the usual way is so inadequate. You'd have to be extraordinary just to get to "competent" when the needs are great, you see... Surely my children are all missing out on plenty.

Just think, even if my insurance DID magically cover speech therapy, I have four autistic children. Speech twice per week? $25 per visit, per child winds up to $200, multiplied by 52 weeks per year and we're over $10,000. JUST in copays. Nevermind the other doctor appts. and stuff.

So yeah. I guess I'm doing pretty close to "nothing," because the "free" help through the school district is not useable, and we really can't afford help otherwise. At all. Good thing I'm not an extreme curebie, eh? That would be a real bummer. :)

Kim Wombles said...

Ah well then, we're in similar situations; I homeschooled my oldest for ten years with no speech, ot or pt except what I personally provided.

Yes, parenting kids with special needs takes more effort, more ingenuity. But I would never consider it doing nothing. :)

Anonymous said...

Agreed - parenting with intention and effort is not 'doing nothing'.

I think the bell curve provides an accurate mental image for many things in life. Keep in mind, it is only 2 dimensional.

Well said, all. Barbara



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