A new study by Amanda Saxe and Tara Flanagan looked at the attitudes of support workers in terms sexuality and disability. This study examined 25 university students who had experience as support workers in Canada (either as ABA therapists, Aids, teachers, or consultants). They found that students with no religious affiliation and who were more advanced students had more liberal views. When they said “more liberal” they meant more accepting of sex ed, masturbation, sexual feelings, relationships, intercourse, parenthood, and marriage and less accepting of serialization. Support workers were not biased against homosexuality per se, but they did indicate that anal sex is the least acceptable form of sexual expression for adults with developmental disabilities. In this study, training as a sexuality educator was not related to attitudes about sexuality and disability.
This article is not available for free on the web, but you may be able to view a summary.
Sandra Byers, Shana Nicholas, Susan Voyer, and Georgianna Reilly have an paper coming out in Austim this month. They survied 141 men and women with “high functioning autism and/or Aspergers syndrome” (AQ score of 26 or greater) about their sexual wellbeing. You can read the abstract of the article for free or pay for the entire article but I’ve summarized the interesting findings below.
Gender Differences: The men had greater sexual well being but less sexual knowledge. They weren’t different in all areas; for example, they were the same in terms of sexual activity and sexual self esteem. They were different in areas such as arousability and sexual desires (this is pretty consistent with neurotypical gender differences).
Autism Symptomatology: Folks who reported less autism symptomatology had better sexual well being but not necessarily more sexual activity (both with partners and alone). The folks who reported more autism symptomatology reported more difficulty with the other parts of sexual life like assertiveness and desire.
Relationship Status: Folks in romantic relationships relationships reported better sexual well being. Everyone in the study had been in a relationship at some point so this is comparing the folks currently in a relationship from those not in a relationship at this time.
So how did they define sexual well being?
The looked at sexual well being in two main domains: dyadic (with another) and solitary (on your own). In these domains they examined affection, genital activity, sexual assertiveness, sexual satisfaction, arousability, sexual desire, sexual thoughts, sexual anxiety, and sexual problems.
One of the take home recommendations for education relates to the two domains. These reachers highlighted the importance of sexuality education that teaches about partnered sexual expression and solitary sexual expression. They also recommended that sexuality education specifically focus on developing a positive sexual self-image. I can’t disagree with them there!
Living Safer Sexual Lives is a training pack available for purchase ($57.23) for those of you who may be doing training on human sexuality and disabilities. I have not personally used their materials, but it was developed in a very interesting way and it’s not very expensive so I thought I’d pass it along. A research group in Australia interviewed several people with intellectual disability about their sexual lives and then used their stories to develop this training. The training is targeted toward parents, professionals, and self advocates. The training pack has three parts: introduction, training, and resources (including a DVD of people with intellectual disability telling their stories).
You can read the full report which outlines the findings from the interviews and how they used the interviews to shape the training. The report also includes accounts from people with disabilities about their sexuality.
The key themes that emerged from the stories were:
- Diversity and similarity. Diversity within the lives of the story-tellers and similarities between needs and desires of this group and other adults.
- The issues of rights and sexuality.
- The hidden nature of people’s sexual lives.
- Celebration of sexuality and relationships.
- Gender issues.
- Loneliness and rejection.
This series of parent news letters is available in English and Spanish. They provide guidelines for families in regards to talking about sexuality topics. They are not adapted for children with special needs, but I thought they could be useful regardless (especially the more general issues). On this page the also have a fact sheet (English only) that has a lot of data about teens sexual behavior. There is very little (almost no) information about the sexual behavior of adolescents or adults with developmental disabilities but I’ve summarized the research that is available below. (You would need access to an academic library to read the full articles cited below for free). Despite the limited research, most people (be they parents or professionals) come to my workshop because they already know people with disabilities have sexual intersts!
There have been several studies that suggest that individuals with ASD have a desire for intimate relationships (Henault & Attwood, 2002; Van Bourgondien, Reichle, & Palmer, 1997; Ousley & Mesibov, 1991). These studies may define “interest” as instances of sexual behavior. For example, one study that reports the majority of 89 individuals with ASD living in group homes in North Carolina displayed some sort of sexual behavior (Van Bourgondien, Reichle, & Palmer, 1997). Other studies define “interest” as self-reports of sexual activity and knowledge (Ousley & Mesibov, 1991). In both cases they are reacting to earlier studies that reported that individuals with ASD (and other disabilities) had no interest for intimate relationships with others (Despert,1971; Rumsey, Rapoport, Sceery,1985) and common myths that report individuals with ASD to be asexual (Irvine, 2005).
Despite the trend to move toward a more accepting view of sexual interest among individuals with ASD and other developmental disabilities, there remain questions as to what extent individuals with disabilities are interested in sexual activity. For example, most studies look at sexual behavior however individuals may be interested in intimate relationships even if they are not displaying sexual behavior. Some studies have shown that individuals with more knowledge are less likely to want to engage in sexual activity (Konstantareas & Lunsky,1997); however it seems that the relationship between access to sexuality education and the desire for support with relationship development remains unclear.
In preparing for the puberty section of Human Sexuality 101 I was looking at research on methods for teaching young girls with ASD about menstruation and came across an article using Social Stories (only a preview of the article is available for free).
In short, here’s the Four P Plan for Period Support
1. Prepare a period kit
2. Preinstruct (perhaps using social stories)
4. Plan for pain relief
Klett & Turan used a combination of three Social Stories adapted from Mary Warbol’s “Taking Care of Myself: A Hygiene, Puberty, and Personal Curriculum for Young People with Autism” (this book is not just for girls). They implemented the social stories before menarche (first period) and then planed to revisit them after menses began. These stories focused on growing up, what a period is, and how to take care of a period (I would reprint them but you have to be careful about Social Stories and their copy rights). They also used simulations with the girls using red syrup so they could practice changing a “used” menstrual pad. They reviewed the social stories over several days and completed simulations over several days. They also used different types of menstrual pads in case the girls did not always have access to the same type. They also asked the children questions about menstruation to check for comprehension (such as “What is the blood from your vagina called?” and “Do you need to wear a pad when you don’t have your period?”). This method proved effective in these case studies and the parents who implemented the plans where happy with it.
I have a good friend who made a menstrual kit for his daughter to start keeping in her book bag around age 11. In a zip lock bag he placed a change of underwear, menstrual pads, Tylenol, a change of shorts, and bathroom wipes. That way, if her first period was at school, she had everything she needed and wouldn’t need to ask for support unless she wanted to. I personally think this is a wonderful idea and wish my mom had thought of it when I was middle school! This idea has caught on because you can buy premade kits. Also, they make underwear that help keep menstrual pads in place.
I have heard that some families also preemptively use pain relief to support with discomfort and PMS. Not all girls associate the physical discomfort with their period or are able to communicate “I feel bloated” or “I have cramps.” Although these are phrases that you can teach and prompt, some families just start using an over the counter painkiller two or three days before they anticipate the start of the period. This isn’t foolproof because, especially when girls first start getting their period, they may have irregular cycles.
Autism Now isn’t specifically focused on topics related to sexuality but they do have some great resources I thought I could highlight.
They have a series of webinars related to sexuality topics. If you click on the link you’ll be taken to a registration box that you have to fill out to view the material. I’ve also included links to the slides- this is a direct link, you don’t need to register.
Slides: “Sex is when people use their bodies together to share love and pleasure.”
Slides: “Research says that the IQ has to be below 50 before you can say IQ and parenting skill are connected (Feldman& Tymchuk, 2002).”
And they just had one on May 15th, but you’ll have to keep an eye on the archive list because it’s not up yet- “Let’s Talk About Sex: Discussing the Topics of Sex, Protection, and/or Sexuality from Three Unique Viewpoints”
In addition to the webinars they have some general “fact sheet” style info that might be helpful on topics such as dating, marriage, divorce, relationships, sexuality, parenting, and friendships. These include general information as well as parent tips.
I was really impressed by the quality and quantity of ASD related resources on a variety of topics so it’s a good one to have in your tool belt.
I just wanted to link to one other power point presentation that I thought had a lot of good information. “Sexuality & Sexuality Instruction with Learners with Autism Spectrum Disorders and Other Developmental Disabilities” by Peter F. Gerhardt, Ed.D., Director The McCarton Upper School
During the workshop we talk a little bit about gender identity and gender fluidity but I thought it might make sense to talk about this topic more in depth. Parks, Hall, and Taylor* looked at gender dysphoria (discontent with with biological sex) with individuals with cognitive disabilities and suggest “Developing a gender dysphoria or wanting to cross-dress usually has ramifications for the person’s family and social network, perhaps more so with people with intellectual disability, who may be more dependent on family and paid caregivers and have less choice about who is in their network. They may experience more hostility and gain less appropriate support from their network.” But there is still very little information about how common it is, why for some individuals gender is more fluid (have a wide flexible range of gender expression), and how best to support individuals with disabilities with issues related to gender. This topic also raises issues related to guardianship and self determination. Some individuals start going on puberty suppressants and hormone replacement starting in adolescence so their bodies can match the gender they express and the gender they identify with. For people with disabilities, who gets to make that choice?
Could having a developmental disability lead to difficulties with gender identity?
This is a little difficult to answer. There are very few studies ask this question. In Holland they looked at co-morbidity of ASD and gender disorders * and did find more individuals with ASD coming to their clinic then you would expect. However individuals with ASD may be tapped into to services which might account for this difference. When individuals with disabilities seek support they may be unable to give an accurate history and professionals in this area may be unfamiliar with working with people with disabilities which could lead to false impressions.
Given how little is known, where can I go for more information?
There are new clinical guidelines that address how clinicians should assess and support individuals with autism and persistent gender dysphoria. The new clinical guidelines (there haven’t been any in the past) affirm the right of individuals with autism to obtain gender realignment. It also affirms that many individuals with autism experience gender outside the male-female binary. Check out a reader friendly overview of the guidelines on Spectrum News.
Gender Spectrum is a great place to start looking for more information. This is a website that can link families with medical, mental health, social, and legal services. The have great definitions of all the different terminology and a great overview of gender development.
Here is also a This American Life podcast that features interviews with two little girls who were born as biological males and their families. For me, it was really eye opening and helped me connect this topic to real people.
On May 19th the Washington Post published an article on this topic (which I thought was really well done) featuring a little boy named Tyler. The story had almost 2,500 comments 5 days later. They published a follow up article about the response on May 21st, “I heard from transgendered senior citizens who lamented their decades living a lie. I got e-mails from confused parents who had their aha moment when they read Tyler’s story. And sure, I heard from the haters”. This article not only has nice information but also speaks to the relevance and controversy surrounding this topic.
*This links to the abstract of the article. Unfortunately, the full text of the article is not available for free online.
It is difficult to determine the exact risk of sexual abuse for individuals with ASD (it’s hard to get a good report of sexual abuse among the general population). The first national survey reports victimization rates of 27% for women and 16% of men among the general population (Finkelhor et al., 1990). A study has shown that children with disabilities are 1.7 times more likely to experience sexual abuse however all children with disabilities were examined, not just individuals with ASD (Crosse, Kaye & Ratnofsky, 1993). Individuals who are caregiver dependent may be at the highest risk because family members, family acquaintances, and paid caregivers are the most likely to commit sexual abuse (Mansell et al., 1996). Difficulties communicating, lack of knowledge of sexual norms and activities, and isolation may contribute to increased risk of sexual abuse among individuals with ASD. Sexuality education may provide opportunities to for individuals to be better able to communicate and better understand social norms and activities. Furthermore if the support systems of individuals with ASD are in openly talking about sexuality it may create a climate where this abuse is less likely to happen. The Department of Human Services in Illinois has started a project to end sexual violence against women with disabilities. I’ve gotten to meet several people working on the project and they are very knowledgeable and dedicated. I hope they succeed!