2/21/2011

Meandering Monday: When Our Worldview Is Our Own Yard

We all do it: we define things from our own perspective. One example I see over and over again is the idea that autism is whatever it looks like in our own kids, or own experience of it, not someone else's. If autism is accompanied with other problems, it's those problems, too.

Our natural tendency is to define things based on our personal experience. Even parents who argue they don't define their children by their autism will have the same tendency to define all symptoms and issues their children have as part of their autism. It's Gregory House writ small: the need to find one cause for all symptoms. The reality is that there are often multiple causes for the myriad of symptoms we may experience.

Coupled with this natural tendency to see the world as being nothing more than our own back yard is our tendency to believe that our experience of the world is the right, normative way to see the world. If other people have a different view, they must be wrong. Add in confirmation and disconfirmation biases and you've got a potent recipe for seeing the world through some seriously tinted glasses.

We are a culture of people who don't like to read the instructions on anything. We're almost always in too much of a rush to read them twice just to make sure if we do bother to read them at all.

The problem with syndromes with no known causes, with clusters of symptoms that taken together are said to be promlematic, is that there isn't particularly solid ground from the beginning. It's all in how the definition is drawn.

We all, in the autism community, walk around thinking we know autism when we see it, but there's no consensus, and so there are arguments about who has it and who doesn't, what all is involved with it. You have a loud segment insistent that it's vaccine damage and is a gastrointestinal disorder, although there's no logical reason to believe in a leaky gut syndrome or an illusive autistic enterocolitis, nor any mainstream research to back it up. In fact, if one finds research discussing this idea, it's a safe bet Wakefield is somewhere in the background.

It's easy for parents whose kids have both autism and gastrointestinal issues to lump the two, to see that their child functions better when he's in less pain, but to argue that for their child severe constipation or diarrhea leads to autism, but when they experience bouts of it themselves they don't lose their own ability to communicate, understand social situations or then start to engage in repetitive, stereotyped behaviors, is to make illusory correlations. The child's autism undoubtedly plays a large role in how he communicates his distress; it is, after all, a disorder of communication and socialization combined with restricted repetitive behaviors.

We all go beyond the narrow descriptors in the DSM when talking about attributes of the autistic mind, but we have to be willing to acknowledge that we are doing so. By widening the diagnostic criteria, by not making all key symptoms requirements in order to be diagnosed with the condition, how autism looks has changed and broadened. My three children are all recognizably on the spectrum but they are vastly different in how they present, in what issues they have, and in the severity of those issues.

This variance in how we all define autism, in how we go beyond the accepted, scientifically researched criteria for what autism is and isn't, is a problem that isn't going to go away. The public's co-opting of medical disorders and their desire to use them as labels of personality and to redefine them as preferred ways of being in addition to examples of their own personal dysfunctions for the gain of having a ready excuse makes for a minefield when it comes to communicating about very real issues. To deny that reality is to remain forever lost in one's own backyard.

It isn't just autism where this is happening. Other disorders, such as obsessive compulsive disorder, depression, post traumatic stress disorder, dissociative  identity disorder, attention deficit disorder, bipolar disorder, and others have taken up residence in our common vernacular, have become a shorthand for people in describing themselves.

What we do with this phenomenon is a difficult question. Scientists operationalize their definitions, make sure that other scientists can be sure of what they meant by the definition. That's only as good as people's ability to read the definition, though, and apply it. And this is not something we do well. Anytime I write about facilitated communication, it becomes abundantly clear when a reader has ignored that operationalization in favor of his own definition, just as it's abundantly clear when it's a true FC supporter ignoring the body of scientific evidence in order to maintain their personal belief system.

As long as we restrict our view to our own backyard and fail to look at how other people are defining words and concepts and using them, we are engaging in a spectacular failure of theory of mind, not something, by the way, that's a uniquely autistic quality. We all have failures in theory of mind, some more spectacular and comprehensive than others. Go to a school parking lot at drop off and pick up time and you'll see a steady stream of failures in theory of mind and fine examples of narcissistic behavior to go along with that. Watch a married couple, and you'll see failures of theory of mind as one of the couple starts off a conversation midway through it, expecting the other to know what she's talking about, even though she started mid-sentence.

When our own back yard is as far as we can see, when we think that's how the rest of the world looks, we're asking for some serious miscommunication. If we want to rewrite the meaning of labels and what we want to label a dysfunction, a disorder, or simply a difference, then we need to agree on the definitions. Otherwise, we're speaking different languages using the same words.

5 comments:

K- floortime lite mama said...

my goodness
What an excellent post
on a side note - one of my friends says that in anothe 20 years there will be 32 different diagnoses for what is now lumped in Autism

aspergirlmaybe said...

I am so glad you posted this; it is a subject I have thought a lot about and agree with you wholeheartedly.

My son has some GI and immune issues that have responded very well to treatment (all based on lab tests and specific dietary changes and supplementation). He also has autism, for which we have tried a variety of therapies to address the symptoms of the disorder that are disabling for him, some with more success than others.

It makes me very angry when doctors tell parents that autistic children often have GI issues and don't offer treatment for those problems (and I have had many parents tell me this had happened to them). GI issues are not part of the diagnostic criteria for autism, so they shouldn't be dismissed as being expected with autism. Also, even if they were, why would you not treat a child who is having these problems?

KWombles said...

K-, thanks. That wouldn't surprise me at all, as scientists work out the various genes responsible that these will be named.

Aspergirl maybe,

I know; it makes no sense to me. We've never, not once, ever had a doctor look at one of our three kids and say they shouldn't be treated because a medical problem was part of autism. If a doctor tells you that, fire the doctor and find one who will take the physical symptoms seriously. It may be that sometimes there are no good answers, are no easy fixes, are no medical interventions that will help. I think some parents, especially if they haven't had the personal experience, forget that there are a lot of conditions for which not a lot can be done medically, like IBS.

Decreasing stress might be one of the best things parents could do for their kids who suffer chronic bowel issues; if the stress response is being continually activated, gastrointestinal issues are going to follow. Making sure the child eats a well-balanced, high-fiber diet is the next most important thing, while looking carefully at what foods seem to make the issue worse. And then, learning how to live with the situation and framing it differently can further decrease the stress.

Anonymous said...

Very thought-provoking post,as usual. I have the sense that the people who will appreciate it already understand about the need for clarity and moving beyond personal bias, but it's still good to get it out there. For myself, I'm pretty accomodating and willing to go along with whatever we decide to call things or whatever language works for the purpose, just so long as we all understand what it is we're actually talking about.

Sometimes my kids like to make up their own words for things, which is very creative, but I feel the need to point out when it goes overboard that the whole point of using words is so that we can communicate and share ideas and information with each other - which we can't do if we're all using different words to mean the same thing.

I admit to not doing tons of reading of clinical information on autism and related issues. I mostly read things written by other parents, although I have read Tony Attwood's book, too. Early on I was exposed to the concept of a lot of issues being "co-morbid" with autism - not actually part of autism itself, but often also present. That has always kind of worked for me. My oldest is also diagnosed with an anxiety disorder. It's something often present in autistic individuals, but I can clearly see all the signs in my middle NT son, too, and often to a greater degree. Is the co-morbid wording still something we're using, and what do you think about that?

Diane
dianeltufts.wordpress.com

KWombles said...

Diane, yes, at least in the research-area, comorbids are used. That seems to drive some parents a bit mad, but the DSM is what it is; even if one thinks it's wrong, it's still what all clinicians are supposed to be using.

My girls do that with language, too. Making them understand that if other people don't understand them can be challenging.