4/17/2011

Through A Glass Darkly

For now we see through a glass darkly, but then face to face; now I know in part, but then shall I know even as also I am known. 



Watch the full episode. See more PBS NewsHour.





Robert MacNeil is hosting a series of six reports on autism on the PBS Newshour; autistic self-advocates are protesting the lack of interviews of autistic individuals, with several autistic bloggers writing about the series. Lisa Jo Rudy has a lively (as usual) discussion going on over at About.com concerning the first part in the series.

The first part covers Robert's grandson and how autism has impacted the family. Robert's daughter blames  three vaccine shots at fifteen months for her son's autism, seizures, and gastrointestinal issues. What is perhaps most interesting is MacNeil's assertion that "Now, more doctors say it often involves serious physical illness." Dr. Timothy Buie's presence in the segment seems to give credence to this assertion, but it's not one Buie's actually made. It's apparent that Nick, MacNeil's grandson, has more than just autism going on. What follows is MacNeil's question to Buie and Buie's answer:
ROBERT MACNEIL: Dr. Buie found changes in the lower GI tract he called lymphoid-nodular hyperplasia -- inflammation and damage in his small intestine.How does that affect the life of a child like Nick? For instance, does it give him pain?
DR. TIMOTHY BUIE: I think it can give pain. And I think pain in a child with autism is a very difficult thing to assess because a child with autism can't vocalize that. He will very often not come to you and say, "I've got a bellyache." He can't use those words. So he may exhibit that as a child who doesn't sleep well. He may exhibit that as a child who has a lot of increased agitation or hyperstimulatory-type behaviors.And part of the problem with that is that we've accepted that those are behaviors that we often see in children with autism, and we've written it off to their autism. So it's very difficult to think through whether that's a marker for pain in some of those kids if we're unwilling to look for other reasons.

While there are limitations in what can be said in a fifteen minute segment, MacNeil puts out an unsubstantiated claim that many doctors believe autism to be a "serious physical illness" without providing evidence, and without acknowledging that this is not the mainstream scientific consensus about autism. In other words, he provides a segment based not on what is known about autism as a whole, but on a subset of children with autism and other issues (it appears the grandson also has a mitochondrial disorder: "Nick has serious physical illness: in his digestive system, his mitochondria, the energy needed by his cells for normal activity, plus frequent small brain seizures, and extreme sensitivity to light and sound").

Will the remaining five segments widen this perspective? We'll have to wait and see.

The Science of Evil

Onto another area where people see through the glass darkly. Simon Baron-Cohen is a controversial figure in the autism community due to his theories about what is behind autism and that there is a failure of theory of mind in autistic children (and a failure of empathy). He has a new book coming out in the US in May, The Science of Evil: On Empathy and the Origins of Cruelty, which is already available in the UK under the title Zero Degrees of Empathy: A new theory of human cruelty (disclosure: I have a review copy of the US title). 

On Friday, Baron-Cohen wrote about his new book and his theory of empathy erosion in the Financial Times. A reviewer there used Baron-Cohen's work as a launching point to discuss his own beliefs regarding evil, charging that Baron-Cohen's work reveals "a certain philosophical naivety." And perhaps it does, but that misses the point, as did the reviewer on Baron-Cohen's definition of empathy.

Baron-Cohen isn't interested in metaphysics and when reviewers (or readers) place their definitions over Baron-Cohen's, they're not critiquing his work based on his definitions. In his new book, Baron-Cohen defines empathy in two parts: "Empathy is our ability to identify what someone else is thinking or feeling and to respond to those thoughts and feelings with an appropriate emotion."

The reality is we all have failures of empathy; we may indeed recognize what another person is feeling (but that alone is not empathy); we must care about it enough to respond appropriately. It is this second component which is vitally important, and to leave it out, when it is a fundamental part of what Baron-Cohen is talking about is to argue a strawman, whether intentional or not.

And, I think, it reveals, a critical issue at stake when we're discussing things in the autism community (and the wider world): we often do not take the time to check our biases at the door. We often can't, and so we read blog posts, comments, articles, emails, etc., through our own unique lenses. We see what we expect to see and we use our own definitions, and it means that our communications are a series of miscommunications more often than not.

We need not just to teach this two step component of empathy (and the third, unstated component, appropriate action, which appears to be subsumed under appropriate emotion) as Baron-Cohen argues we should:
"Empathy can even be taught through learning how to compromise, or learning how to put your point of view across more diplomatically, thereby thinking about how your words are received by the listener. There is a wide variety of ways to teach this, and schools need to make as much space in the curriculum for emotional literacy as they do for other kinds of literacy. And because of the empathy spectrum, such teaching materials are likely to benefit not just the kids who are at the extreme of zero degrees, but also many throughout the broader population."
We also need to be deliberate and careful when we respond to other's work that we are taking it in and using the same definitions when we argue against their positions. We should remember we all see through a glass darkly.


5 comments:

farmwifetwo said...

The more I read about Simon Baron-Cohen the more I decide that his ideas and mine don't mesh. I should read that book so that I know what he's talking about.

As for the rest.... having been there, done that, been told "some children with autism are like that" and no referral to someone for the gastro issues by the Dev Ped... If they were taken seriously by mainstream science, and those in 'autism-land' that have never had to deal with unending diahhrea and bleeding rashes, parents wouldn't delve in 'woo' to get it stopped.

Socrates said...

fw2,

I'm with you on that thought about the professor.

His ideas around borderline personality disorder leading to psychopathy didn't go down too well with some of the patients and professionals that have to deal with condition.

And I personally can't find any material to support this proposition.

Did you also notice from the book that he's lining up the over-empathic for a diagnosis of mental illness/personality disorder?

Aspergirl Maybe said...

Thanks for sharing your thoughts on both of these. I have seen some stuff going around about the PBS coverage but not as much about Baron-Cohen's book.

I have to admit I am probably going to pass on both of them because I just don't have the energy for it right now. I am finding that I am still too in the middle of dealing with my own situation and my son's issues to feel I have much to contribute to the broader arguments.

Reading your blog these last few months is definitely helping me get better at questioning why I am doing the things I am doing. Even though I may not come to all the same conclusions at this moment, I am appreciating the challenge of doing more research and being more analytical about my decisions and I have made some changes in the way I look at things.

sharon said...

I am in complete agreement with your perspective on both the series and SBC book. I have seen many people misinterpret Baron-Cohens ideas.
As for the PBS series, the more I contemplate it the more pissed off I become. I can't help thinking MacNeil is using his position and influence to push a personal agenda/philosphy much of which flies in the face of current understanding of Autism. In know we should wait to view the resat of the series but that 1st one does not give my hope for the rest. As a matter of fact I'll be surprised if Jenny doesnt make an appearance at some stage.

sharon said...

oops proof read fail above.