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.

Implementing Sexuality Education

When you think about implementing sexuality education, it is important to think of what your agency is already doing because it is often easier to build on something than to start from scratch.

I’m going to present a model for one approach for implementing sexuality education at the agency level.  This isn’t the only way to do this, but rather a suggestion of one path that I have found to be successful. Your agency may already have completed some phases or find some phases to be unnecessary.

Phase I: Start a committee- bring together a few people who are interested in topics of human sexuality and willing to do some of this work.

Phase II: Draft a sexuality policy- this will serve as a foundation the committee’s path.

Phase III: Invest in curriculum and teaching materials-  you don’t need much to start out with, but I think it’s helpful to have something and you can always add later.  Having said that, I’ve never come across anything that didn’t need some adaptation.

Phase IV: Start thinking about who you want to target and how- do you want to do small groups or individual education?  Who is going actually implement the education and what support do they need (training, regular meetings to process how it’s going)?  What will your process be for getting individuals receiving services involved?  (I’ve attached a sample Referral Form).

Phase V: Start Implementing!

Phase VI: Expand and Revise- self advocates, expanding curriculum, increasing training for all employees…there’s so many interesting and fun places you can go.

You may be saying to yourself, “this is great, but I’m not really in a position to implement agency wide change where I work”.  Here are some questions to ask yourself in regards to what you can do at a personal level.

  • Where could I fit in with what my agency is already doing?
  • How can I reinforce and incorporate human sexuality concepts into my everyday interactions?
  • How can I incorporate human sexuality concepts into programing?
  • What can I do to advocate for human sexuality education?

Supporting People with Disabilities with BEING Sexuality Educators

What does supporting people with disabilities with BEING sexuality educators?

It’s all about self-advocacy!

According to SDC (UIC’s Institute on Disability and Human Development and their Sexuality and Disability Consortium (SDC), “Sexual Self-Advocacy means: People with disabilities taking control of their own sexuality by making their own decisions and speaking up for themselves and others about sexuality.”

As sexuality educators, individuals with disabilities can be…

  • Safe people for their friends to talk to
  • Knowledgeable sources of information
  • Leaders and co-leaders in educational sessions
  • Models of healthy sexual relationships
  • Advocates for raising awareness about sexuality topics
  • Fill in the blank ____________

This is a great webinar to learn more about how to advance sexual self-advocacy for people with disabilities.

Another great resource for learning more about sexual self-advocacy is  The Green Mountain Self-Advocates.  They have developed materials for self-advocates interested in teach human sexuality (as well as many other topics).

SDC recommends the Developmental Disabilities and Sexuality Curriculum which has a self-advocacy component built in.

Let’s Talk About Ability and Sexuality

http://vimeo.com/17317232

This video was filmed at the Healthy Relationships and Sexuality Conference in California 2010. What’s special about this conference is that it was organized by people with disabilities (and their allies) for people with disabilities.

I’ve highlighted some of my favorite quotes from the video. My main point in posting it, is not so much that you watch it and learn a bunch of facts, but rather use as an example of a teaching tool. Creating a video like this is a wonderful learning experience and helps give purpose and permanence to the expression of ideas.

“Sexuality needs to be part of the service planning process” – “It’s not the people with disabilities who are uncomfortable but the staff who are helping support them” – ” “The definition of support needs to change as the person changes” – “A person with a disability can always find love” – “Disability does not define me. The way I think about other people and the way I treat other people: that’s what defines me” – “Maybe people will eventually become more open to us” – “If you get asked a frank question, give a frank answer”

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.

10 Easy Things You Can Do that Promote Privacy and Positive Relationships

Although this list can be used with any population, it is geared towards individuals who need a considerable amount of support. Many of these are probably things you already do!

1.  Prompt clients/consumers/students to greet one another.

I’m always surprised to realize that some people don’t know the names of the other people they spend time with each day.  A simple greeting is a wonderful, simple, social script that you have natural opportunities to practice each day.

2.  Ask permission or notify an individual before touching their person or their wheel chair.

This reinforces that an individual has control and autonomy over his or her own body.  It’s important for people to feel in control of their body so that they feel safe and also so they can keep others’ safe.  It also communicates that a person’s body is something that needs to be treated with respect.

3.  Keep all aspects of a personal care (toileting) routine private.

This means that you don’t follow behind someone with a Depends (or other personal care item)- use a bag.  It also means you don’t announce taking someone to the restroom to the group (say it quietly so only the person you are speaking to can hear).

4.  Do not speak negatively about clients/consumers/students in front of others – including saying they are having  behaviors.

People are very perceptive about when others are speaking negatively about them. When you say so and so is having behaviors it makes the situation very public, embarrasses the individual, and gives positive reinforcement (in the form of attention) to the behavior.  If for your safety you need to communicate this, use a code (In Champaign we would say “did you see the Illini’s defense last night?” which meant we are having a potentially dangerous behavior situation please hang out until all clear).

5.  Do not affectionately kiss, cuddle, or pat on the head clients/consumers/students.

In someways this is a no brainer and in other ways it is hard.  I know so many people who are touch deprived and it seems harmless to give someone a hug when you see them but these types of affection have several negative side effects.  1) They send an inappropriate message of how to interact in non-sheltered situations (you can’t hug people you meet on the bus).  2) They communicate that the individual is child-like and a-sexual.  3) They can create a climate where it is difficult to detect sexual predators.

6.  Make home movies.

A flip camera is less than $200 and very easy to use.  Make videos showing people being friendly to one another, answering questions about what is important to them, and daily routines or special events.  People love watching themselves and their friends.  It allows them to tell a story that they may not be able to tell by themselves.

7.  While maintaining appropriate boundaries, talk about emotions (including your own).

All people have complex feelings regardless of their abilities in other areas, but people don’t always have the words to communicate them.  It is appropriate to model emotional expression.  For example, when I go with a group from our day program to deliver food to families, I tell a story about how I feel.  I say, “It makes me a little sad to know that people don’t have any food, but the family was so happy we brought them food.  It makes me feel happy and proud to help someone else.  I like to do it.”  I just talk about it as we’re driving back.  It’s also appropriate to name clients’/students’/consumers’ emotions, “You seem like you might be a little bored” or “You look so proud to have gotten your pay check.” What you are doing with these easy statements is creating an emotionally safe environment.  (Note: this is way different than unloading personal problems on clients/students/consumers).

8.  When referring to intimate body parts, use the correct word.

9.  During lunch/snack/work breaks prompt folks to talk to one another, even if it the same conversation you had yesterday, and preferably incorporate pictures.

Perhaps combine with number 10 🙂

10.  Have a regular discussions about current events.

One of my favorite stories came out of a current event discussion.  It was during the 2008 primaries and I said that Hillary Clinton was running.  The person I was talking to said, “Hillary sounds like a girls name” and I said, “It is.”  He started laughing hysterically, and said, “Sarah don’t tease me, a woman can’t run for president.”  What a great way to start talking about gender!

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.”