5/08/2011

Political Correctness and Hypothetical Questions in the Autism World

We all do it from time to time, get on our high horse and decide we know best. Or we put on our outrage: how dare they? Okay, some of us do it more than others, but my point is that we are all guilty of it.


One of the enduring hypothetical questions that floats around in the autism world is the pill to remove autism from our children. Since many of us have or do medicate our children for various symptoms relating to the core deficits in autism, I really don't get the outrage that occurs on this question, especially considering it isn't a real possibility. Why get mad at hypothetical stuff that will never be when there are real world situations like the restraint and abuse that occurs at the Judge Rotenberg Center or the fact that a school in Florida feels perfectly justified in using full body restraint systems on autistic and intellectually disabled students that basically go unchecked and unremarked about? Or the lack of services? Or how about the idea that the US government thinks that the disabled should be able to live independently on less than 700 dollars a month? Or that dental care for the disabled over the age of 21 on medicaid isn't covered at all? Or that there are too few assisted living centers for those who need a little extra help? Or the lack of job training programs? The list of real problems we face in this community is huge, and it often seems insurmountable.


I don't do hypotheticals in general, but I can understand people who choose to weigh that heavy question and write about it: what is autism to my child, how does it impact him, and what do I think his true nature, outside of autism's effects, is? Those are deep questions worthy of reflection, and everyone will come up with her own answers based on the underlying belief system about what it means to be human and whether we have immortal souls (ideal selfs). 


Jillsmo wrote her honest answer to that very personalized question. Although I read the post at the time, I didn't comment because I don't do hypotheticals, and after these last two years of reading a diversity of parents' perspectives, I've come to realize that we are all personalizing our definition of autism to what is our own experience of it and reacting out of that reality rather than thinking of autism as an umbrella spectrum in which the diversity of experiences and disabilities is perhaps wider than it is in the general population. Plus, really, who would object to the idea of removing those things that cause our children to suffer? 


Osmo Wiio, a human communications researcher, created a set of laws on communication that while meant somewhat humorously are often deadly accurate, one of which was the law that "If a message can be interpreted in several ways, it will be interpreted in a manner that maximizes the damage." Jillsmo's piece, which was highlighted in a Blogher spotlight, has certainly been the recipient of this maxim; The Thinking Person's Guide to Autism facebook page highlighted the headline of the Blogher article, "Would You Give Your Child An Autism-Be-Gone Pill?," asking readers to "add their perspectives over on BlogHer regarding the complexity of the autism spectrum, and simplistic assumptions that autism equals suffering." 




Right here is one of our problems: the idea that autism equals suffering or doesn't, and it speaks to the reality that how people are defining autism is changing. Autism as defined by the DSM does equal disability and disorder and implies suffering. It is a neurological disorder that manifests as social and communication impairments and repetitive, stereotyped behaviors that all three get in the way of functioning, which causes a marked decrease in quality of life. Anyone in the autism world knows that this definition is not entirely accepted in the community, that by more and more people it is becoming seen as a personality type that is at odds with the way society is structured.


And reality is probably along that continuum, from personality traits (BAPpiness) to severe disability. Receiving a DSM label was supposed to be serious business, to reflect dysfunction, but how people use it colloquially is far from how it was meant to be used, and this is not just in the autism world. People co-opt diagnoses like OCD, depression, bipolar, and others and use them as shorthands to reflect states of being or personality traits, not true impairments. It is a watering down of the labels. Perhaps this will all be to the good as society decides what is deviant and a willingness to accept these once (and still stigmatized) labels will lead to greater acceptance of those at the extreme ends of society's bell curve. Perhaps not. How we feel about it will no doubt depend on our experiences with the various DSM diagnoses being bandied about as adjectives descriptive of personality traits. 


But back to the original topic, that of the hypothetical pill. While later communication in the facebook thread makes it clear that the TGPA editor who posted the link and the request was not being specific to Jillsmo's piece but instead was really focused on the headline, the overall damage was done; people, instead of having a chance to read the piece without having their reaction already primed, went into it ready to believe the worst.

This division isn't a new one, and our tendency to dogpile is absolutely not new; as I wrote at the beginning of the piece, we all do it: we get on our high horses and then we huddle with our likeminded compatriots and move enmasse, and it feels good; we define our community in this way, our ingroup. And we do it often. I'd like to think we do it on really outrageous stuff, on stuff that matters, but I'm not sure that's true. I think it's more likely that we do it whenever we can on whatever we can. Look at the facebook memes; we like to fit in, so we follow the crowd to show our ingroup membership. In fact, refusing to go along can signal to others that we are rejecting them, even if that's not what is intended. After all, according to Wiio's first law, "Communication usually fails, except by accident."

There was nothing wrong with Jillsmo's post: she wrote that if she could give him a pill to remove those issues that are harmful to him, she would, and that it was her belief he would still be the same sweet person without those issues. Other people will have different takes and ultimately it will boil down to the underlying assumptions about what autism is: an add on to the essential person or a fundamentally interwoven and inseparable part of who the person is.

We've all got some work to do on improving our communication skills and our tendency to knee-jerk reactions. The idea that somehow autistic people are the ones lacking theory of mind and empathy but neurotypicals are swimming those skillsets is more than a bit off. We all see through a glass darkly. We are all victims of availability heuristics and confirmation biases, and we are all absolutely certain we're right and if someone disagrees with us, he's wrong. In other words, we are all black and white thinkers, casting ourselves as the hero on the quest. People along the way are either allies or enemies. 

Maybe we need to break that dichotomous thinking up, work harder to see things from others' perspectives or at least take better care to open ourselves to our own blinders before we react to what other people have written.

Eh, or not. After all, for some folks this has replaced solitaire and the stakes aren't high at all.

11 comments:

farmwifetwo said...

Lost my post.... UGH!!!! Haven't the time nor the inclination to repost it.... but you know where I stand and I'm pro-pill and pro-voicing your own opinion. I'm anti-autism is glorious and they should be proud to be disabled. I'm anti-"It's ok to be different, you don't have to learn to cope". I'm pro-"be the best you can be". I'm pro-"if the rest of the world has to learn social and behavioural skills so do you".

I can look myself in the mirror every day. I can see my son's becoming more and more indpendant every day. I've "cured" one and will finish raising him and send him on his way.... I'm working hard on the other and appreciate we may never get to full independance but we're going to try... and if there's a pill to help with the executive functioning, the difficulty with expressive speach... we'll try it too. Nobody deserves to be disabled, nobody deserves to miss out on living their life, their way.... Nobody.

r.b. said...

:), ahh...you ARE brilliant!

Emily said...

I hate that question. I think I've said that already. Don't care about her post one way or the other, but that question irritates the hell out of me. There seems to be only one real reason to ask a dichotomizing question about an impossibility: to dichotomize. And the very question implies that autism is some monolith that ONE pill might someday "cure," which is, I think, the point that TPGA editor Shannon Rosa was trying to make: it's not, and the implications in that question mislead the unfamiliar reader into thinking otherwise.

Elise said...

Is this a loaded question? Yes. Is it politically correct? No. but then again I am not politically correct and I am one that speaks my mind.I answered the blogher question and yes I would give my children that pill if it existed.

That there are real issues that need to be dealt with concerning the autism community most definitely.But there is nothing wrong with dreaming that life could be easier for your children no mater what issue your child faces, whether it is autism, poverty or lack of freedom throughout the world.

It is not always about society not being accepting. It is not wanting your child to be the poster child for autism or invisible disabilities and perhaps your child is should simply be allowed to be a child or a person. Sometimes it is simply the acknowledgement that somethings are simply not fare that is all.And you know what you have a right to be angry and want the injustice to go away.

Socrates said...

Yes well I tried the debate and Facts thing with Steve Silberman but he just deleted my very polite and well-sourced comments about autism being a brain disorder and not a gift from God.

Eventually what proved efficacious was to shame him in front of some of his more learned colleagues - after all, peer pressure gets them everytime, right?

Shannon Des Roches Rosa said...

As you wrote, the issue was with BlogHer's headline and their assumptions about "autism" being a single condition of misery as per negative media messages -- thereby ignoring the women in their community who identify as autistic. It's about thoughtful language usage and education and awareness. (Posted on FB as well.)

I'm with Emily, hate the original question, and recommend readers see Carol Greenburg's response on the original BlogHer post -- sbout how to ask the right question. Carol kicks ass. http://www.blogher.com/would-you-give-your-child-autismbegone-pill#comment-269194

Anonymous said...

The comments prove the point of your post. Socrates-"peer pressure gets them every time" how very astute..
xx Cassandra

Autism and Oughtisms said...

Good post.

In the time that I've been blogging, I've learnt a lot not just about autism but about attitudes towards autism, and have had my own attitude gradually shift in turn. Along with the spectrum of autism, there is a equally diverse spectrum of attitudes. However I don't hold each opinion or attitude as equally worthy - some are simply based on faulty logic or misinformation. Even then though, I don't see any worth in demonizing the person speaking their mind - it's so important to let people say what they feel and why, otherwise we never have a chance to understand and respond to them.

I'm especially sympathetic to the various attitudes of parents, and not just because I am one: It's hard being a parent anyway, and a lot harder when you're trying to learn about and manage a disorder you were previously unfamiliar with. It's a steep learning curve, and to do the best by their child, the parent needs help and support - emotional as well as physical. Beating them up for saying or thinking the wrong thing while they're doing their learning, is rather cruel and pointless. Better to kindly correct them if they've made a factual error, or even better, offer them help so they can reach that "better" state of mind.

jillsmo said...

Good stuff, Kim!! I voted both "awesome" AND "crazed squirrel" ;)

r.b. said...
This comment has been removed by the author.
r.b. said...

Eh, or not. After all, for some folks this has replaced solitaire and the stakes aren't high at all.


It aint about us. at all.

this is the brilliant comment I refer to.