Developmental Messages for 0-5 Year Olds

In The Birds and the Bees workshop we talk a little bit about how we start teaching folks about sexuality from birth. We mostly teach sexuality through how we socialize and interact with infants.  SEICUS has a set of guidelines for being more intentional about promoting healthy sexual development in 0-5 year olds.  For me, some of the developmental messages and core concepts where exactly where some of the guys I’ve worked with were at, even if they were much older.  I especially like the discussions about sexual abuse prevention (pages 56-57), masturbation (45-46), and sexual curiosity (47-49).  I also think you could get some great ideas for teaching about gender roles (59-61) that you could do outside of what may be considered a sex ed class.  For each of the 19 topics they discuss they include a discussion section, key messages, additional messages for older preschool children, and how adults can help.

You can download the guidelines for free… RightFromTheStart

Impact: A Newsletter

A workshop participant put me in touch with this awesome resource (thanks Cate!).  Impact is a newsletter from the University of Minnesota’s Institute on Community Integration which is part of their Center for Excellence in Developmental Disabilities.  They have many products and services that you may find useful (many of which are available online or at little cost).  Their newsletters contain ” strategies, research, and success stories in specific focus areas related to persons with intellectual, developmental, and other disabilities. ”

The sexuality issue has several interesting articles written by individuals with disabilities, service providers, family, and community members.  In addition to the articles, the newsletter provides information about additional resources in several areas: education, parent support, advocacy, sexual health, and sexual safety.

The story in Impact that touched me the most was one about two men who were harshly punished for their love for one another while institutionalized but were finally able to be married.  Once they were both living in group homes and reunited…”they decided they would not live together, they would not have sex, until they were married.  They had been punished so often, told continuously that they were dirty, sinful, hateful creatures, that they needed to get married ‘liked other people.'”  Dave Hingsburger* commented “How we hate the hearts of people with disabilities!  We have caged their bodies, disfigured their genitals, drugged their thoughts.  But we have never, ever captured their hearts or controlled their spirits.”

*The link in the text is to Dave Hingsburger’s blog.  He is the author of several resources for teaching human sexuality and abuse prevention to individuals with intellectual and developmental disabilities.  The resources can be found at Diverse City Press.

Free Curriculum and Parent Resources

A lot of the curriculum we used for the puberty unit of our Human Sexuality 101 group was adapted from “Teaching Sexual Health“.  They are a group out of Canada that provides support for teachers and parents.  I used their general curriculum but they also have a curriculum for students of differing ability levels.  They have great resources for parents including “webisodes” that give examples of parents talking to kids about sexuality topics.  The website is very well organized and easy to use!

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Menstruation Plan

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 upwhat 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

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

Gender Identity and Disability

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.

Free Curriculum- Parent Version, Teacher Version, Spanish Version

ImageI’m really excited about this free curriculum, “Sexuality Across the Lifespan” by: DiAnn L. Baxley and Anna L. Zendell.  It has versions for educators, teachers, and Spanish speakers.  You can view the curriculum by clicking on the links below.

What makes this special?  They do a nice job at adjusting lessons for different age groups, giving ideas for supplemental activities, and giving ideas for incorporating the topics into routines.  The parent version really focuses on how to reinforce healthy sexual development through interactions and daily routines.

This curriculum in not comprehensive but does have sections on social skills, dating, sexual abuse, puberty, and anatomy.  I hope you find this useful!

Teaching Strategies- Autism Internet Modules

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

“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.”