Study on Adult Sexuality in Autistic Individuals: Response from the Researchers
A post here on adult sexuality in autistic individuals led to a very interesting exchange, including critique of the survey itself. The survey is being conducted by the North Shore Long Island Jewish Health System is and the University of New Brunswick and the researchers have sent me a response (see below, after the jump).
Being the mother of a 10 year, 10 month old son who (as I’ve noted) has started a moustache —-puberty is right around the corner—-I very much value the findings of the research and, too, discussion of this topic among readers. If you review the “Ashley treatment“—which involved the removal of her uterus and breast buds, so that she will not start to menstruate and will also be “kept small,” Ashley growing up and into adulthood was, it seems, a foremost concern for her parents. The issue of sexuality in individuals who are cognitively disabled is a huge topic that I certainly have just started to think about and rather than just take a “wait and see” approach, it’s important to me to learn as much as possible, and to keep dialogue going.
Here is the response from the researchers of the study on sexuality in autistic individuals:
Tags: Adolescence, adults, asd, asperger, autism, Health, Parenting, pdd-nos, puberty, Sexuality, surveyDear Participants on the Autism Vox listserv,
Firstly, the link has now been corrected and by clicking on “confidential online study” you will now be directed to the main page where you can enter the study to learn more information about participation before you decide if you want to participate.
We are very grateful to have the opportunity to respond to the issues that have been raised regarding our online study of sexuality in adults with ASDs. We work very closely with a group of adults with ASDs in our community and are always open to and welcome feedback regarding any of the work that we are doing. So thank you for raising the issues you have so that we can address them in future work and revisions.
We have also had participants contact us for clarification regarding individual questions. We welcome any emails if you have concerns you wish to raise, or would like some clarification about the questions you are being asked.
When we developed our set of questionnaires, they were reviewed by adults with ASDs and we made their suggested changes. As this was our first study in this area, we expected other issues might arise and we hope to be able to continue to refine our methods and the questionnaires to make them more accessible to individuals with ASDs.
We work in the area of sexuality and ASDs from a number of different angles – we have a grant to study the effectiveness of a parent education group in assisting parents work with their teens with ASDs regarding sexuality and social development. We are also evaluating the effectiveness of an 8-week “guys growing up” group for 15-18 year old males with ASDs. Teens and their parents set goals related to learning about sexuality development and social skills and we are evaluating our curriculum to see if we can address the needs of youth and their parents. We also consult with parents and schools on developing healthy sexuality education plans for youth, and we work with families whose children have run into difficulties with sexual behavior. We also work with adults who have sexual problems and complaints or just want to enhance their sex life.
Our emphasis in all of our work is on healthy sexuality development and potential and the positive aspects of sexuality for individuals with ASDs. Given that many people are uncomfortable with the topic, and that there tends to be an emphasis on problems, we hope to be able to understand more about creating positive opportunities for experiences and learning.
This first on-line study is a pilot project from which we hope to develop further questions to pursue. No study design is perfect, and we know that the findings from this study will generalize to only a select group of individuals. We were however very interested in the experiences, thoughts and feelings of a community sample of adults with ASD symptomatology. Most often, research is conducted primarily with a clinical sample, and the resultant negative picture of the sexual functioning of individuals with ASD may be a result of this method of sampling.
From our work, we also know that web-based research is becoming increasingly common and accepted, and we are able to conduct exploratory data analysis to identify and eliminate participants with anomalous data patterns and who, based on exclusion criteria and/or clinical judgment do not appear to fit the inclusion criteria. We are advertising the study only through self-help and chat groups for persons with ASDs and autism organizations, and ensuring that the survey web-site is not identified by search engines such as Google. In these ways we significantly increase the likelihood that only individuals with ASD will know about the survey.
We hope that we have been able to address some of the concerns and thoughts that you have. Your input is very valuable to us and if you would like to correspond with us, please send us an email.
Thank you!
Shana Nichols and Sandra Byers and the research team
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POSTED IN: Adolescence, Adulthood, Health, Sexuality
8 opinions for Study on Adult Sexuality in Autistic Individuals: Response from the Researchers
dkmnow
Mar 14, 2008 at 3:59 pm
Interesting. Well, let’s hope my assessment of the survey and expectations of the authors were too harsh/cynical. At the very least, there seems little danger that they will eventually be arguing for forced sterilization of Autistics. That’s something, I guess.
S’pose I’ll try the survey again … later. But if they haven’t significantly reworded the item on “religion,” I seriously doubt I’ll bother to slog through the rest of it. That was by no means the worst of my beefs, but it was the first item that made me go “WTF are they thinking?,” and wonder if it was an omen of things to come.
We’ll see.
M
Mar 14, 2008 at 4:41 pm
i’m alwas wondering what can be done to improve the comfort level of the topic, in terms of the public discussion. sexuality is ubiquitous in our culture…television, movies, have it everywhere; commercials are premised upon it. yet when “sex” is mentioned in reference to autistic individuals, I think it’s little too much for people to process. there is this very weird, very large silence on the topic. i suppose it’s an understandable disconnect…but getting that ball rolling, removing the discomfort for people, I wonder what accomplishes that.
on a personal note…very personal, but that’s sort of the point of this topic…I can say that having no guidelines or understanding of my own sensory issues turned sex into an infuriating ordeal. having a libido, yet finding touch to be overly-intense…very difficult tension there. i think knowing general information about what others experience, how they have coped, not coped, failed, succeeded, climaxed, withdrawn…it’s the sort of thing that can dispell a lot of confusion (for the public…and for those of us who have to get out there and wing it.)
When things have turned uncomfortable, the only coping skill I’ve found is to try and think of the experience as “funny after the fact”. (Which only works on the condition that the “funny” kicks in at some point, so I’m still waiting for that.)
i’m guessing there are quite a few Sexual Brechtians out there, so this is an interesting topic.
Marla
Mar 14, 2008 at 5:14 pm
This is very interesting. A topic of interest in our home. I must say I would never consider doing what the family in your article did.
Norah
Mar 14, 2008 at 5:14 pm
I agree that guidelines or examples would have been extremely helpful (and I don’t mean technical stuff, like we learned in biology class). I haven’t really had any negative sexual experiences (which seems to be rather surpising, hearing about other people’s experiences. I may have gotten very lucky), but figuring everything out, my own responses, sensory issues, etc, took… way, way too long. Still not fully figured out. I can’t help but thing this was a waste of time, not in the sense that I think figuring out your own sexuality is a waste of time, but that it really could have gone more than twice as fast if there had been education or help aimed at someone like me.
Patience
Mar 15, 2008 at 1:40 am
dkmnow, I’m generally lumped in the NT category, and I went through the survey to get a feel for it, too. Some of those questions were so incredibly wordy for the point I think they were trying to make, I’m still unsure what point they were really aiming for. The cost/reward section was incredibly difficult to parse and comprehend. I figure that if I (NT, exceptional language abilities) had problems with their phrasing, no one on the spectrum stands a chance. I don’t think you were overly cynical at ALL.
Melody
Mar 29, 2008 at 9:45 pm
I took a look at it. I mostly had trouble with the questions involving the word “not” and agree/disagree or True/false. These types of questions trip me up a lot. Don’t know the alternative.
Autistic Soul
Mar 30, 2008 at 10:37 pm
Someone who is Bi-polar will generally exhibits an obsessive compulsive sexually behaviour…..Can you give us a valid Sexually Comparison: examples for someone with Autism?
It seem that Autism is still a taboo subject with a perpenisty to shy away from honest straight foward answers and Classis symptoms
Kristina Chew, PhD
Mar 30, 2008 at 11:18 pm
Intriguing questions—-not quite sure I have examples. I will note your question to the researchers of the study.
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