Autism Survey Results

A while ago I pointed you to Ginny Hughes blog where she was conducting an informal survey as prep for a conference she is attending. She has some comments on the results here.

The most interesting result to me is that people in the “autism community” seem to have higher fertility than scientists.

Comments

  1. #1 Larian LeQuella
    September 18, 2009

    My guess as to the difference would be because a lot of people don’t really frequent autism blogs unless they have a child affected by autism. ;)

    Either that, or science geeks just can’t find an appropriate mate with which to reporduce. I just happened to get lucky and found a science geek of the correct gender to allow us to produce offspring. :P

  2. #2 Kate
    September 18, 2009

    Wow, Greg, I’m surprised you busted out with such an ignorant statement.

    Did it occur to you that the “autism community” is a community GEARED towards parents, while the science and genetics community isn’t specifically geared towards parents? Of course you’re going to get a higher percentage of parents answering on that particular survey!

    It was further biased by the way we were asked to identify ourselves in terms of science or advocacy, and parents were pretty much directed into the advocacy survey. The whole thing is a bit skewed.

    And while her intentions were good, she’s begun comparing apples to oranges in her results.

    Frankly, I’m disappointed.

  3. #3 Stephanie Z
    September 18, 2009

    Kate, as one of the non-parent participants in the survey…well, back off. There are plenty of ways of ending up involved in autism advocacy that don’t involve having an autistic child of your own, including being an educator, doctor or researcher or having a different type of relationship to someone with autism or ASD.

    Given Sb demographics, I suspect that the people with a nonspecific interest in genetics were simply younger. There are an awful lot of undergrads and graduate students in various disciplines around here. They may well get more involved in advocacy as they age, but they’re also fairly likely to have kids during that time period.

  4. #4 Greg Laden
    September 18, 2009

    Kate, I am also very disappointed. Most people read my blog more carefully and would totally get my reference to fertility as excellent wry humor.

    The fact that there is an obvious selection bias is what makes it wry and not just humor!

  5. #5 Kate
    September 18, 2009

    Stephanie, there ARE plenty of ways to be involved in Autism Advocacy that don’t involve having an autistic child, but the demographics are more heavily influenced by that.

    While I applaud Ginny for trying to get at some important issues, I stand by the statement that both the way she separated the two groups responding to the survey and the conclusions she drew from that about each group’s willingness or interest in genetic testing is seriously flawed. The biggest problem is the difference in the questions relating to testing as “its potential for finding better treatments for psychiatric disorders[or autism]” and testing “that calculates the risk of developing psychiatric disorders[or autism]” She concluded that the difference was that it related to “their child” and not the difference in the purpose of the test.

    As one of the parent participants in the survey, and as someone who has supported science and science education, I’d suggest that you try to listen to other people and evaluate the study before you start telling people to back off. This definitely isn’t like you.

  6. #6 Stephanie Z
    September 18, 2009

    Ginny also made it clear that what she was doing, and what she had done, was not a scientific study. It was an informal poll, and she was musing on the results. She was looking for things that would generate ideas, not from which to draw a conclusion. I did, in fact, evaluate what she did, although I won’t call it a study.

    If she wants to anything other than muse on the results, or if anyone else wants to point to them as reliable as they stand, yeah, I’ll argue with that. Right now, criticizing someone for discussing them as lightly as they are meant to be taken is premature at best.

  7. #7 Kate
    September 18, 2009

    Greg, you’re right, I’m not always able to pick up on your “wry humor”, and perhaps that portion of the disappointment was not terribly well earned. I’ve been dealing with some 150 stupids on health blogs who are picking up on some of the next generation of autism propaganda, including some individuals who are following up on other health issues which are supposed to be solved by proper diet and vitamin supplements. I’ve even been banned from a blog by a friend because she was quoting Dr. Mayer Eisenstein (although not for autism treatment, for other illnesses that she believed were cured by vitamin therapies) and I posted his malpractice record, linking to several news stories.

    Unfortunately, this topic is as hot for some of us as PZ’s cracker issue, and a great deal more personal. I may be overly optimistic, but I look towards those of you here on science blogs (and the blogs you in some way promote) to bring the voice of reason into this argument, and not further muddy the waters. It may be too much to ask, but when I see something like this, I have a great stake in trying to reduce misunderstandings.

  8. #8 Kate
    September 18, 2009

    Stephanie, you’re right in that Ginny made it clear that she’s not a scientist or a statistician. I understand that. My concern is that this study was apparently part of some sort of conference and that she may be presenting it in some way. I’m concerned that she hasn’t thought out her conclusions, and that most people (who aren’t scientists or statisticians) will be influenced by the numbers rather than understanding what the survey really does (and doesn’t) say.

  9. #9 Greg Laden
    September 18, 2009

    I am all for advancing the cause of skeptcism of [fill in the medical area] denialism!!!

  10. #10 kate
    September 18, 2009

    I am all for advancing the cause of skeptcism of [fill in the medical area] denialism!!!

    I know you are…

    and that you’re

    all for advancing the cause of skeptcism of [fill in ANY science] denialism!!!

    as well…

    which is why I read your blog faithfully.

    even when I don’t comment.

  11. #11 Stephanie Z
    September 18, 2009

    I do understand the concern (and the endless work), Kate. I probably also have enough more history reading Ginny to be better able to trust her clarity in presenting this kind of information. I think we’re pretty much all on the same page on this topic and the care it requires.

  12. #12 Kate
    September 18, 2009

    That’s reassuring Stephanie, I’ve been reading you long enough to trust you on this. This survey was my first exposure to Ginny.

  13. #13 DuWayne
    September 18, 2009

    Kate –

    I cannot comment for Ginny, though Stephanie is quite able, but I can totally comment on tossing ideas out there for discussion. I have done it myself – not as a data gathering device, but as a tool for gauging where I would like to go with actual research. There have been a couple of times I have done this, not only with my own blog, but convincing other bloggers to help out.

    It is all about finding a starting point or even working out whether there would be any value to a particular direction of study. When I threw out some questions about how people think of the word addiction in a variety of contexts, I was able to figure out that there was an entire line of reasoning I had been considering, that is likely pointless. I was also able to better assess how I might construct a relatively simple method for collecting preliminary data, that will provide the foundation for a paper and hopefully a grant application. Most importantly, I was able to refine the actual direction I want to go.

    Blogs are an incredibly useful tool for tossing around very raw ideas and getting valuable feedback. I daresay there are some folks out there who would place way too much weight on what those discussions produce, but I am always inclined to assume that the bloggers who use these sorts of tools are aware of the extreme limitations – at least until they prove otherwise.

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