Sunday, 11 September 2011
A year or so ago, I read a thread on an Autism Sprectrum Disorder (ASD) forum lamenting the lack of hard data concerning sexuality and gender in Asperger's Syndrome (AS). Then, I heard Dr. Tony Attwood talk at a conference about a recent Dutch study, which found that a shockingly high proportion of the children in a gender dysphoria clinic actually had an ASD. This concerned me. Are our ASD kids really so unhappy in their own bodies? Put this alongside the very many (especially men) with Asperger’s who have never been in a fulfilling relationship and/or who remain reluctant virgins well into their 20s or 30s and I felt I needed to find some answers. Consequently, I started a PhD this year investigating sex, sexuality, and gender identity in ASD.
Whether they are in relationships or not, many 'Aspies' (and their loved ones) have unanswered questions about themselves and most have experienced confusion and insecurity around sex, sexuality, and gender. Take the time to trawl through any adult section of an AS forum and you will find threads asking all sorts of hotly debated questions. Do we get along better in relationships with fellow Aspies? How do our sensory issues affect our love-making and shows of affection? Am I asexual? Are we androgynous? Do *feet* really turn Aspies on? I don't know about you, but I want the answers to these and many more questions!
In all seriousness, as a fellow Aspergian, I find it neglectful at best that the scientific community has mostly glossed over this area of our lives and not paid it the attention it deserves. My literature search in preparation for this research was frustratingly brief. Disappointingly, a recurring theme seems to be how to control an unfortunate tendency towards masturbation in public amongst autistic adolescents. Thankfully the morally and ethically loaded debate about whether or not to sterilise our teens has now largely disappeared, but one is, nonetheless, still left with the feeling that sex and sexuality in ASD is something taboo and unnatural, which should be controlled and discouraged. This is reflected in the fact that people with ASD, despite their thirst for knowledge, have far less knowledge about issues relating to sex and sexuality than their neurotypical peers. Parents and schools just aren’t educating our children with autism, and we should all know by now the dangers associated with a lack of an appropriate sex education!
As well as not properly educating people with an ASD about sex, there is very little hard evidence about how they experience sex, sexuality, and gender identity. We know that people with Asperger’s Syndrome invariably have some degree of difficulty with interpersonal communication and with reading social cues. As a result, it is common for them to feel lonely, isolated and to struggle with forming meaningful and lasting relationships with others, whether they be friendships in the playground, or love affairs as adults. A common misperception is that people on the spectrum do not WANT or need connections with others. The truth is, that many with Asperger's Syndrome not only form close personal relationships, but also marry and have children. For those who have not found “true love”, it is not for want of trying to seek out connectedness in their life. Threads on online Aspie forums about the latest dating disaster abound and make for depressing reading more so because there are, as yet, no resources or answers to address where they are going so wrong. Is it related to our difficulty with reading body language and facial expressions? Perhaps people with AS are simply not putting themselves ‘out there’ in the right places to find that someone special. Or, maybe the art of flirting is not being applied, or, worse, is being misapplied.
We just don’t know, and hence, the dire need for this research, which aims to address these issues by providing some answers. As a first step, I am running an anonymous, secure and untraceable online survey looking at how sex and gender behaviours relate to how many ASD traits a person has. Although the focus of this research is on how individuals with an ASD experience sex, sexuality, and gender, you do NOT need to have had a diagnosis of ASD to complete this survey. Anyone is free to participate, however, due to the graphic sexual nature of the content, you do need to be aged 18 years or older to take part.
I really am hoping for a diverse and representative set of respondents, so everyone from every corner of the globe, whether neurotypical, Aspie, straight, queer, male, female, or anything in-between is welcome to contribute. Dr. Tony Attwood is collaborating with me on this study and he believes that, with your help, we can revolutionise our understanding of sexuality and gender in ASD. The value of your contribution is far-reaching. There is a good chance that the results of this study will go towards improved clinical practice and interventions, and facilitate much-needed acceptance of those on the spectrum. Most importantly, the findings will almost certainly contribute to reducing the victimisation, isolation, Depression and Anxiety that people with Asperger's Syndrome (and other ASDs) frequently experience. Hopefully, this research will provide the opportunity to educate our children with information and skills that are tailored to their experience of sex and gender, so that they are better armed as adolescents and young adults to deal with the minefield of sexuality and relationships.
In recognition of the time and effort involved in completing the survey, we are offering a prize draw of an iPad2, which is proving an invaluable early intervention tool through the number of ASD-targeted apps available. Additionally, there are numerous $20 iTunes and Amazon vouchers on offer and you may opt to receive a full report of the main study findings once the survey responses have been analysed. There is now also a facebook page with more info about the survey. It's a place to comment on the study and it will be where I post the report of the findings as soon as the analyses are finished.