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    What If's, Defining And Redefining Disability: The Magic Pill Question
    By Kim Wombles | May 9th 2011 08:01 AM | 3 comments | Print | E-mail | Track Comments
    About Kim

    Instructor of English and psychology and mother to three on the autism spectrum.

    Writer of the site countering.us (where most of these

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    It's a natural proclivity to play the what-if game. What if we could go back and change things? What if we could alter some particular trait about ourselves or an event? Would we do it? It's a favorite plot device in fiction. In the disability community, especially in the autism community, it takes on a whole new edge. Instead of posing these what ifs about ourselves, many parents engage in the what if question about autism: what if there were a magic pill that would remove all the negatives our children face? Would we give it? Just as many of us would not change our past experiences, recognizing that who are today is fundamentally built upon the experiences of the past, so too do many autistic adults who have incorporate autism into their personalities as a core feature of who they are.

    When parents engage in this hypothetical magic pill dialogue, autistic adults who would not choose to be unautistic, equating the positive traits of who they are with the same underlying cause of those traits that cause them impairment, tend to weigh in on the matter. Some parents, having embraced their children's autism as all that makes their child who they are, the totality of them, argue it's an inappropriate discussion and that those parents who would remove the core deficits, believing their children's personality and assets would remain intact, should listen to adults on the spectrum about this.

    The whole debate becomes bogged down in a completely pointless exercise, especially when the nuances of what the pro-pill parents are saying are  truly examined rather than being knee-jerk reacted to: without exception, the parents who have done this hypothetical exercise have an underlying perspective that matches the current DSM position on autism: it is a neurodevelopmental disorder defined by core deficits, not by strengths. It is a disorder that causes impairment and dysfunction that seriously compromises the individual's ability to function independently without assistance or modification. These parents tend to see autism as something that is not fundamentally who their child is but something that prevents their child from being who they really are. It impairs them; it makes their life harder, and the need to remove those things which cause suffering is a normal human response.

    The DSM and ICD classifications of neurological disorders and diseases was never meant to be a descriptive catalog of quirky personality traits. These were meant to convey serious impediments to living "normally." One can rightly argue that the DSM is seriously flawed and that the tendency to define deviancy according to what makes society in general uncomfortable is fundamentally unfair to the people being labeled, especially if they personally aren't feeling dysfunctional or impaired.

    At any rate, given the DSM, what it was meant to do, and the fact that autism diagnoses were meant to imply serious impairment, it is understandable that parents would want to remove autism or cure it. It's just as understandable that adults who have integrated that label into their core being, see autism as having positive skills and traits, and see that their experiences as an autistic person make them uniquely who they are would choose to say no to a hypothetical pill.

    These kinds of posts go around the online autism community, especially during Autism Awareness Month. I don't do hypotheticals in general (seeing them as a waste of time), 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). 


    These hypothetical questions and the need for soul-searching and declarations are understandable, as are the intense emotional reactions that can occur to these declarations (I admit to reacting to them, myself, upon occasion; nothing is more emotion-triggering that seeing someone write that her child with autism is dead--my immediate reaction is that someone needs to get a grip). 


    After reading the reaction to one blogger's honest answer to that very personalized question, 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? 

    One of the more frustrating experiences in online communication is the tendency for people to react to what one has written without actually reading the post that was written (oh, they'll swear up and and down they read it, and maybe they did, but they didn't read the message that was conveyed). 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." These hypothetical pill pieces certainly can demonstrate that in detail. 

    And the reaction, with some arguing that autism isn't tantamount to suffering, leads back to the intent of the DSM labeling of neurological diseases and disorders: 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 get in the way of functioning, causing 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 the 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 as descriptors will lead to greater acceptance of those at the extreme ends of society's bell curve. But perhaps not; it may instead lead to a pushing further into the dark corners the most severely impaired; it may lead to a lack of recognition for how disabling these conditions can be. How we feel about this whole subject will no doubt depend on our experiences with the various DSM diagnoses being bandied about as adjectives descriptive of personality traits and how severe the disability is. 

    But back to the original topic, that of the hypothetical pill. While later communication in the facebook thread again 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, and instead of a chance to show support and understanding of the parent's experience or even an acknowledgment of how hard those core deficits of autism can be on the child living with the disorder, it  became another chance to argue about who gets to define autism and whose definition has primacy. And if that happened at a metacognitive level, I could almost see the point. That is a discussion that needs to be had. What are scientists and clinicians to do when the populace co-opts diagnostic labels and assigns them, using them to mean different things than the scientists intended? Who gets to control the discussion: the person with the label or the people applying the label?


    What happens when society or a sufficient proportion of society begins to use a diagnostic label in a different way, watering down the usage, depleting it of its original intent and meaning? What do we do with the ever widening gap between how society uses these constructs and how scientists use them? How do we ever effectively communicate about these issues when we can't even agree on how the terms are being used and when we ignore the particular definition being used by the writer we're responding to and instead impose our definition on the piece? After all, according to Wiio, even "If communication cannot fail, it still most usually fails." Talk about frustrating.

    Comments

    A similar conversation came up a few years ago, when the third X-Men movie came out. The questions asked in that movie was "if you had an obvious difference that made you unique, would you have a simple medical procedure to eradicate that difference?" and "what if such a treatment were compulsory?"

    As with the imaginary X-Men, folks with autism may have nearly-invisible differences that are quite positive in most circumstances (an impressive ability to visualize in three dimensions, for example), along with few truly life-impairing difficulties. Or, again like the X-Men, they might have overwhelmingly differences (such as extraordinary sensory dysfunction) which make day-to-day life extremely difficult.

    In the X-Men movie, some X-men eagerly say "yes" to the treatment. Others choose not to partake. And still others are horrified by the very idea of a "treatment" to manage a particular style of being human.

    Of course the biggest ethical issue presented by the movie is not "should the treatment be made available," but "should the treatment be made compulsory?" Fortunately, at least so far, such a question is still in the "interesting by hypothetical" category when it comes to autism!

    Lisa

    The DSM is flawed, but I don't have anything better to propose.

    I've written more than once that like many disabled people, I'd gladly be rid of physical limitations. But, who doesn't dream of the perfect physical existence? Most people want to be faster, stronger, taller, or something along those lines. I have a list of physical conditions I'd rather do without… but that's not life. Those limits have forced me to be creative, which means they helped shape my way of analyzing problems. That altered perspective likely beneficial to my employer and colleagues.

    Maybe they will cure some physical conditions. Who doesn't dream of a cure for paralysis? For dystrophies and palsies? For seizures? For migraines? I cannot blame anyone, especially parents, for wanting some conditions "cured" by science.

    Are there aspects of "autism" I would like cured? Sure. Are there "benefits" I value? Probably. I only know that any change means I wouldn't be me -- as I am today.

    to my mind, it seems pointless to engage in a what if debate - years ago, the gay community used to say that if all gay people turned purple so that everyone could know how many gay people there were, it would end homophobia.
    I imagine that beleif was quite shocking to black people......

    Unless there is a pill or treatment, then it's wishful thinking that won't help anyone in the spectrum, and it can only cause harm in making people feel that they need to be cured - and it increases the perception of the spectrum as negative and undesirable.

    There just is no average or normal person - everyone has strengths and weaknesses, based on their aptitudes and experiences - we would be better to look for the value and positives that each person brings and build assistance strategies to strengthen and expand on the positive abilities of people, whereever they are in the spectrum.

    For me, I have found it a lot easier to cope with the cognitive dissonance of constant conflict between my perception, other people's perception and objective reality, by putting aside the idea that anyone is a rational, unbais and fair actor and that everyone acts as a wounded and selfish child who is unable to share or allow other people to have it their way some of the time.

    It was amazing how the whole world suddenly became more cohesive and understandable, viewing people that way - their actions became understandable, predicatable and manageable.