#NFBookClub Discussion Part 2

November 24, 2016 Uncategorized 7

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Happy Thanksgiving everyone! Today, we’re wrapping up our Nonfiction November book club discussion. Again, I know this is a long one, so I’ll leave the discussion link-up open until Dec 15th. Once again, I’ll give you just the questions and then the questions with my answers so you can choose to ignore my answers until you’ve written your own if you like.

  1. What did you think of Kanner and Rimland’s biases? Did you find Rimland’s biases more forgivable?
  2. What role do you think parents and patients should play in medical research? 
  3. What role do you think the media plays and should play in medical research? In particular, were you surprised by the impact the movie Rain Man had on the perception of autism? Overall, do you think the movie had a positive or negative effect?
  4. Should we use the phrase “people with autism” or “autistic person” or some other phrasing?
  5. Is there any other reading you’d recommend for learning more about autism?

My answers and a link-up for sharing your answers are below. 

1. What did you think of Kanner and Rimland’s biases? Did you find Rimland’s biases more forgivable?

I felt that both Kanner and Rimland potentially did a lot of damage to the field of autism research because of their biases and personal ambition. It seemed as though both Kanner and Rimland were so focused on a cure that they ignored the desire of many parents to focus on supporting their children as they were. I did find Rimland a bit more forgivable though. It seemed like Kanner was largely driven by professional ambition. In contrast, I thought that as someone with an autistic child, Rimland might primarily have been motivated by optimism that the outcome he desired for his child was possible. I was also completely horrified by many of Kanner’s methods. At least Rimland didn’t directly harm anyone.

2. What role do you think parents and patients should play in medical research? 

I found the role parents played in this book truly fascinating. As a scientist, I firmly believe we should trust the results of the scientific method. I also believe that it’s of critical importance that we demand rigorous evidence to support any medical claims. By ignoring these fundamentals of science and spreading unsubstantiated claims, Rimland did a lot of harm. This is one danger I see coming from parents being overly involved in science. It also seemed as though several parents-turned-scientists had biases that twisted their conclusions.

On the other hand, I thought Kanner did a lot of damage by ignoring what parents and autistic individuals wanted for their lives. Actually, I thought one problem with Rimland’s approach is that he ignored what other parents wanted too. Lastly, it seemed as though everyone, even the most well intentioned parents, often underestimated the ability of autistic people to make their own choices. The conclusion I took away from all of this is that is crucial to the success of medical research that methodology and conclusions be dictated by scientists. However, I think it is equally critical that the priorities of medical research be driven by patients when possible and by dedicated patient advocates otherwise.

3. What role do you think the media plays and should play in medical research? In particular, were you surprised by the impact the movie Rain Man had on the perception of autism? Overall, do you think the movie had a positive or negative effect?

I was shocked by the impact Rain Man seemed to have, anecdotally, on the way people interacted with autistic people and their parents. It served as a timely reminder that the media has a huge responsibility to convey accurate information, even in fictional works. Overall, again anecdotally, it seemed to me that Rain Man had a positive impact. By raising autism awareness, it could potentially improve funding for related research and give people a better way to interact with autistic individuals. However, as the author pointed out, Rain Man also suggested that autistic individuals could not survive outside institutions – a damaging and obviously false claim.

4. Should we use the phrase “people with autism” or “autistic person” or some other phrasing?

I don’t have a good answer to this question. When talking to or about a specific autistic person/person with autism, I’d be in favor of using their preferred phrasing. From the limited reading I’ve done, it seems to primarily be parents who don’t want their children stigmatized by being described as autistic people. They want to emphasize first that they are people and second that they have autism. As this book and some statements I’ve read from autistic individuals suggest, the problem with using the phrase “person with autism” is that very separation between their personhood and their autism.  In order to proudly claim autism as part of their identity, they prefer the phrase “autistic person”. Again, I find this an easy decision with regard to one person – use their preferred phrasing – but I find it a harder decision to make when talking about a group of people who may not all feel the same way.

5. Is there any other reading you’d recommend for learning more about autism?

The only other reading I’ve done about autism is The Reason I Jump, which I would recommend with the caution that the author (or his translator) does a lot of generalizing about autistic people. After reading this, I definitely think I need to pick up some of Temple Grandin’s work.

 

7 Responses to “#NFBookClub Discussion Part 2”

    • DoingDewey

      I typically try to get questions up before the halfway point and before the end of the month so people aren’t waiting on me. I’d say you never need to try to be finished before the half way and end points of the month though, and I’ll often leave the link-ups open even longer than that.
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  1. Lory @ Emerald City Book Review

    I was surprised at the role that Rain Man played in spreading awareness of autism. I also had no idea that the person who originally inspired the screenplay was not autistic. It was interesting to learn about how Dustin Hoffman approached the role, and his dedication to the project. And yes, it was sad and definitely harmful that the “Hollywood ending” chosen as most effective gave a false impression.
    Lory @ Emerald City Book Review recently posted…Reading New England: Three plays by Eugene O’NeillMy Profile

    • DoingDewey

      I was surprised by what a big difference Rain Man made too and the story surrounding how the movie came to be was very interesting. I wish I felt that we’d do better with representation today, but I suspect we’re still going with the “Hollywood endings”.

  2. Shay

    The section on Rain Man was a really interesting part of the second half of this book. Since I was born the year Rain Man came out, I’ve never lived in a world where people didn’t have at least that basic level of awareness of autism. It sounds like the movie was really important in that regard. But once you get beyond basic awareness, you have to consider not just representation but good, accurate representation. Silberman’s coverage of adult autistic people becoming more involved in autism advocacy kind of also bends towards that point, because they are capable of representing themselves and telling their own stories. I definitely recommend Temple Grandin’s books.
    Shay recently posted…Ruin and Rising (Grisha #3)My Profile

    • DoingDewey

      Haha, I was born the month after it came out, so I’m the same way! Like you, I can’t remember a time when there wasn’t some level of autism awareness. I definitely need to pick up Temple Grandin’s book. A big thing I took away from this read was the fact that autistic people are capable of representing themselves and as such, I think they should be allowed to drive the discourse around autism.