Autism

New Research Regarding Autism and Sexuality

/ sarahlcurtiss

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!

“Intimate Relationships and Sexual Health” – A Curriculum

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Courtesy of Indiana University

Thank you to the folks at TAP in Rockford for bringing this curriculum to my attention!

“Intimate Relationships and Sexual Health” is a curriculum written by Catherine Davies and Melissa Dubie who are affiliated with the Indian Resource Center for Autism.

“Intimate Relationships and Sexual Health” is geared toward folks who are pretty independent and have few intellectual impairments, so it’s not for everyone.  But they do do a nice job of showing how to think about lesson planning  that would apply to anybody.  You can see a fair amount of the curriculum on Amazon to see if it might work for you.

Menstruation Plan

/ sarahlcurtiss

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)

3.  Practice

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.

ImageI 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- A Resource

/ sarahlcurtiss

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

Are Individuals with ASD at an Increased Risk of Sexual Abuse?

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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!

Teaching Strategies- Autism Internet Modules

/ sarahlcurtiss

Many of the teaching strategies that you use when teaching human sexuality you also use in many other contexts.  Autism Internet Modules can help you learn teaching strategies like the ones listed below (currently they have 37 modules and they are always adding more).  The modules give a really complete overview (they can be a little boring but overall they are very helpful).  Some these may be a review but others may be something you have heard of but aren’t quite sure what it really is.  What’s especially nice is often the expert who developed the technique is the one teaching the module.  Just a little warning- you do have to set up a log in.  Many of these interventions have been specifically developed for people with Autism Spectrum Disorders- but not all of them!

Antecedent-Based Interventions (ABI) – Differential Reinforcement – Extinction – Functional Communication Training – Language and Communication – Naturalistic Intervention – Overview of Social Skills Functioning and Programming – Parent-Implemented Intervention – Peer-Mediated Instruction and Intervention (PMII) – Picture Exchange Communication System (PECS) – Pivotal Response Training (PRT) – Preparing Individuals for Employment – Prompting – Reinforcement – Repetitive Patterns of Behavior, Interests, and Activities – Response Interruption/Redirection – Rules and Routines – Self-Management – Social Narratives – Social Skills Groups – Social Supports for Transition-Aged Individuals – The Incredible 5-Point Scale – Visual Supports

For those of you who attended the workshop, in the workbook starting on page 34 there is a table with examples of strategies.  Some of the strategies come from Autism Internet Modules.

A Thinking Person’s Guide to Autism

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“A Thinking Person’s Guide to Autism” is a wonderful resource and online community.  They have a blog, facebook page, and book so you can check them out in what ever way is most comfortable to you.  Although they deal with many topics related to Autism Spectrum Disorders, they often touch on topics of sexuality.

I especially would recommend checking out this post, “Talking About Sex with Young Adults with Autism”  Here’s an excerpt.

“Amy looked nice, but the grown-ups wouldn’t let us go in Amy’s room and shut the door.”

“Did Amy want to go in her room with you and shut the door?”

“Not really. So we went outside and the parents kept watching us.”

“Did Amy want to be alone with you outside?”

“I’m not sure.”

“Did you touch Amy?”

“I wanted to. I wanted her to lie down on the grass so we could do sex.”

“Have you ever had sex with anyone else?”

“Probably not.”