Autism Vox

19 opinions for Study on Adult Sexuality in Autistic Individuals

• Jen
  Feb 11, 2008 at 6:27 am

  I am so excited to hear about this study- my kids are 12 now, so we’re just starting to deal with it. Since they were little it’s been an area that has worried me considerably. We’re already learning that puberty is leading to a whole new spectrum of challenges that we haven’t had to deal with, and there are a lot of ethical questions that are in our future.

  I’m also hoping that a study like this might lead to some kind of consensus on how to help autistic people come to terms with and deal with their sexuality, and enjoy it to whatever level they are capable of. There is so little good information on even basic things like teaching girls about their periods, or boys about wet dreams…hopefully this will be a step in the right direction.

• dkmnow
  Feb 11, 2008 at 8:10 am

  Wow. I’ve seen a lot of rotten surveys in my day, but … wow. Whoever put that thing together is very much in need of supervision by someone who actually knows how surveys work — AND from someone who knows more about ASDs than can be gotten from a sampling of diagnostic criteria.

  Okay, maybe that last was a bit unfair, but if the authors of this survey have any significant grasp of how we think, I saw no evidence of it. It’s as if they are just begging to have their data fatally skewed by unanticipated subjective interpretation. The failure to account for literal thinking so common among Auties/Aspies, and to adjust the formulation of items accordingly, is just mind-boggling.

  Further, the “Negative Thoughts” explanation is far too convoluted to expect most people to be able to stay on track, even for those who understood at all what they were asking for. And the many flaws come in many forms. For example, there is an enormous gap between having a given thought “once or twice ever,” and having it “a few times a year.” The average non-autistic would likely not even notice this problem — but for a great many Auties/Aspies, this gap will be so jarring that they will be unable to answer at all.

  And how, you ask, could they not know these things about us? Could it be because it never occurred to them to consult us? O!, perish the thought!

  Well, those are just a few of the highlights. There are even more fundamental flaws as well. But the real death-blow to this survey, I think, comes of the fact that its content is simply not ASD-compatible. Most of us will simply be unable to interpret the items in the way the designers are tacitly expecting us to. AND, I predict that, out of every 100 of us who begin the survey, fewer than 10 will bother to finish it — perhaps far fewer. Worse yet, those who do bother to finish will be representative only of a restricted range of cognitive profiles — in other words, not a representative sampling for ASDs in any general sense.

  I blew three hours getting halfway through the survey and finally just gave up. The torrent of FAIL led me to conclude that the whole exercise was pointless. I honestly can’t see how this survey could possibly generate any useful data in the interest of helping us. It will, however, spew forth a shower of gibberish that will be wide open to the most extreme of subjective interpretation. Meaning, of course, that they will have no problem convincing their review board that the research grant was worthwhile. But worthwhile for whom?

  I’m sure the “noble” thing for me to do would be to compose a full listing of my concerns and submit it to them. But that would take me days. DAYS. To do their homework for them. For free. And, given how our input is generally regarded by researchers and professionals (i.e., not at all), what reason have I to hope that they would have any sincere interest at all in my observations? In that as well, I see little room for optimism. NO — they need to recruit several Auties and Aspies to participate in reworking this survey as PAID consultants. If these researchers are truly interested in making a difference for actual ASDers, and not merely their own careers, let them show us their commitment.

  Now, please, someone tell me that I’m being cynical and unfair. Or at least just pedantic. For our sake, I truly hope you’re right.

  :-\

• Cliff
  Feb 11, 2008 at 8:50 am

  I’d like to know what the questions are. I can speculate why that would be, but until I see them I can’t really know (not specifically asking for someone to provide them, as I know that may not be possible).

  Cliff

• alyric
  Feb 11, 2008 at 11:10 am

  David

  Just forward your comment to the head of the review board and the authors - please, pretty please with a cherry on top. This ‘haven’t got a clue what autism is, but there’s got to be a buck/tenure/speaking engagement/ in it somewhere’ has got to stop.

  I’ll send an email to Ari Ne’eman about it as well.

• dkmnow
  Feb 11, 2008 at 12:24 pm

  alyric,

  For a moment, I considered doing just exactly that, but it was immediately apparent that it was pretty much guaranteed to be counterproductive. Also, I need to be a good deal more sure of what I’m bitching about, and I need to be able to formulate my argument, in brief, for best effect and without seriously ruffling feathers. I’ve been thinking about that for several hours.

  In that time, I’ve also realized that my beef in this case ties in very neatly with another old pet peeve of ours, namely: they’re at least as inept at reading us as we are at reading them (aka, “Ooops! I left my ‘theory of mind’ in the boardroom!”).

  For right now, I’m itching to hear about how other ASDers experience the survey. If I hear what I’m expecting to hear, I’ll have my ammunition.

  ;-)

• dkmnow
  Feb 11, 2008 at 1:00 pm

  Oh, by the way, Kristina,

  Please understand that it is not at all my intention to criticize you for having posted this. Quite the opposite — we need to know about this things, good, bad, or indifferent, as you well know. And no matter how this turns out, I’m grateful to you for having brought it to our attention.

• Kristina Chew, PhD
  Feb 11, 2008 at 1:22 pm

  Not at all!

  I think it’s very important that the researchers know about everyone’s responses—–sexuality and puberty are topics that people aren’t exactly comfortable talking about as it it. As a parent, I feel a huge need to protect and respect the privacy of all but also an honest need to know. This discussion itself is very helpful.

• dkmnow
  Feb 11, 2008 at 2:42 pm

  Cliff,

  If you’re really curious, you can go ahead and begin as if you intend to do the survey, but stop short of completing it. That way any “data” from your entries will eventually be dumped, and thus, won’t skew the final results.

  [BTW, that’s another serious flaw in the survey — they have established no means of preventing non-autistics from participating. They have incorporated a section very similar to the old Wired.com “AQ-Test,” ostensibly to filter out “data” from non-autistics. But that would appear to be a decorative scarecrow for the parlor, as anyone who is familiar with the diagnostic criteria would have no problem bluffing their way past it.]

  BUT HERE’S THE RUB: If you’re not autistic, you’re not likely to see much problem, if any, with these questions. The bulk of the problem here exists as a functional mismatch between conventionally formulated survey items on the one hand, and radically UN-conventional autistic thinking-styles on the other. As a result, all but the most conventional-minded of autistics will end up inadvertently randomizing the data. Many will vary widely in their interpretation of the items, and thus give non-normalized answers; and some (like me), if they recognize a variety of possible conflicting interpretations but can see no grounds for choosing between them, they will feel that they are being forced to give arbitrary or meaningless answers, and will abandon the effort in frustration.

  In short, by employing a decidedly non-autistic style of questioning, the researchers may well have effectively obliterated their own baselines. IF my assessment is correct where a truly representative sample is concerned, then a blind statistician could see it with his cane: their “data” will amount to little more than a catalog of coin-flips. Thus, their time would be about as well spent in giving Rorschachs to a row of computers.

  On the bright side, at least that bit of funding isn’t buying gold-monogramed stun-guns for Autism Speaks’ palm-greasers. That’s gotta’ be worth something.

• Cliff
  Feb 11, 2008 at 5:19 pm

  Yeah, I read through it, and it really did get me that it really did rely on some unhelpful assumptions that would make answering a random draw for autistics (but I say, if you are qualified, and want to make that point, answer each one on whim and let them pick up the pieces, which will teach them something about the issues with the survey). Even though I have learned a lot of those assumptions, they were common even amongst surveys with assumptions. Lots of problems.

  Cliff

• Kristina Chew, PhD
  Feb 11, 2008 at 5:43 pm

  So the survey needs a revision, perhaps, from inside the spectrum…..

• Club 166
  Feb 11, 2008 at 11:10 pm

  It’s a shame that something that is sorely needed sounds like it’s off to such a bad start.

  Perhaps the authors will rework it and get a little closer to the mark next time.

  Joe

• Kristina Chew, PhD
  Feb 12, 2008 at 1:16 am

  Still, I think it shows that we all have a lot to learn about and that researchers need to take the perspective and more of autistic much more into account, from the start.

• David N. Andrews M. Ed. (Distinction)
  Feb 13, 2008 at 4:20 am

  When I tried it, the site stopped working after the first page. Dunno if I can be bothered to try again. E-mail formss are pretty bad devices for data collection - technology slows the process down. My supervisee (for her M. Ed. thesis work) uses paper. Much more reliable and actually turns out to be more likely to allow an autistic person to use the form in a way s/he understand (from what we saw of one of the returned forms)!

• Norah
  Feb 13, 2008 at 8:29 am

  I tried it too but, as mentioned above, can’t get beyond page 1, because the page beyond that does not work. So I have no idea of the rest of the survey is.

• Moi;)
  Feb 13, 2008 at 11:24 am

  Our local IU had a class for parents on this subject last year. I attended, and the woman who ran the class was Really Good. She does seminars in schools, and will speak to groups. If you want her name, let me know.

  In the meantime, keep an eye on your “Self” or “InStyle” magazines. ;) Bug was *9* when he started his pubescent journey…

• Hala
  Feb 13, 2008 at 2:13 pm

  Tried to answer; like others was unable to navigate past page 1. I did notice that there was no real way to screen for people who really do have ASC’s. I completely understand that some people are validly self-diagnosed–I know a few of them. On the other hand, there are so many mistaken people, and so many (forgive me for this but) trendies and teenaged kids self-reporting as autistic that the signal-to-noise ratio in communities that don’t require a diagnosis has gotten really skewed. It’s a big part of why I’ve stopped participating in a lot of adult-autistic fora. I am now going to back away from the controversial topic of diagnosis… however, if what dkmnow says about the rest of the survey is true, it will probably tell the researchers a lot about the sexual habits (or whatever) of THOSE people, and little to nothing of actual autistics.

• theasman
  Feb 19, 2008 at 10:07 am

  I wouldnt trust shana nichols.

• David N. Andrews M. Ed. (Distinction)
  Mar 1, 2008 at 6:42 pm

  Incidentally, my supervisee wrote a sterling paper on autistic sexuality. Maybe these authors should read that first.

• Study on Adult Sexuality in Autistic Individuals: Response from the Researchers
  Mar 14, 2008 at 2:00 pm

  […] post here on adult sexuality in autistic individuals led to a very interesting exchange, including critique of the survey itself. The survey is being […]

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