This past summer, after being asked for years by both parents and colleagues for resources and materials related to sexuality and autism, I decided to offer a skills group covering everything from hygiene to flirting to understanding different types of relationships. Drawing from a number of resources, including the King County FLASH curriculum for special education students as well as resources written directly for youth with ASD, and probing my colleagues, especially those who have children and teens with autism, I developed a 10 week curriculum and embarked on a true adventure in teaching and learning.
My goal was not to reproduce the “sex ed” curriculum available through the public school system, but, first, to find out where and how children and teens with ASD get their information about sex and relationships, and to help them make sense of this information (i.e., correct any misinterpretations, help them to distinguish fact from fantasy, etc). For instance, if our kids are getting information off YouTube and through television programs, do they understand that the relationships often depicted through this media are not based in reality, or do they take their cues from how the characters behave and then behave similarly with their peers?
After learning about where kids get their information, we watched a few video clips from TV shows (Glee, iCarly) and discussed what kinds of relationships were depicted and how we were able to determine that from the characters’ behavior. We explored both overt and underlying messages. Sometimes in these discussions the boys would use words and phrases that they clearly didn’t understand well (fag, pervert) and those became discussion points as well. They boys were encouraged to challenge each others’ views, and when this happened it was much more powerful than anything we could say as group leaders.
We went on to discuss different types of relationships. One of the boys believed that a friend is someone he met once. Other boys shared their own definitions of friendship. We discussed all the different words we have to describe relationships: friends, strangers, parents and siblings, acquaintances, and someone we want to date. How are these relationships different from one another? We then modeled and practiced different ways of talking with and interacting with each of these different types of people in our lives. We also handed out hygiene kits and had a little friendly competition that resulted in real changes, much to the delight of both therapists and parents!
We discussed the concepts of public and private. What spaces in our home, at school, and in the community are private? Most of the boys thought Facebook was private. One boy thought being inside his family’s car was private. We went through a multitude of scenarios and labeled them as either private or public or somewhere in between (because most things are not black and white). Then we talked about the dos and don’ts of our behavior based on the type of setting we are in. We moved on to hearing no, accepting no, saying no. Our kids are more vulnerable than most, so we practiced by role-playing again and again. More complicated topics followed, including exploitation and exploitive touch. How do we know what is exploitive and what do we do about it: Tell someone!
It was a lot to cover, but each topic felt too important to leave out. Each week parents and boys were sent home with an exercise or assignment to practice during the week. Of course, one 10-week skills group is not likely to undo rigid thinking, or replace inappropriate behaviors and beliefs with new ones right away. We have to embed these conversations in our everyday lives with our kids and make it a priority to practice these skills on a daily basis. And where did we end up in the final weeks of our group? Working over and over on asking a friend to do something. Basic. How can we ask a girl out on a date when we have yet to ask a friend to go and hang out, or watch a movie?
We learned so much from this first group, but I also know that a different group of boys would teach us that much more.
Every child and teen we see is unique in the amount of knowledge they bring to the table, how much of their knowledge is sound, how well they can reason, what their current behaviors are like in this domain, what goals they have for themselves, and what goals their parents have for them. Where we ended up for our final group meetings was not where I thought we would be when we started out. We had to revise our plans and readjust our expectations, as we so often do, stepping back to focus on more basic social skills before we could go on to address, for example, one boy’s goal of “learning how to ask someone on a date.”
I have joined forces now with another specialist in our clinic and we are developing a curriculum for youth that are more significantly affected by autism and intellectual disability. We hope to make these groups a regular offering here at Seattle Children’s Autism Center. In order to do that, we need your feedback. What should we focus on, what are your goals for your kids, and how can we partner with you to help your kids succeed?
I will leave you with a few words of wisdom from the experts in this area:
- Start EARLY and be direct. Most experts agree that starting a few years before puberty (around age 10) is most helpful.
- Sexuality education is not about sex, but first and foremost about personal safety and self knowledge; individual values; and social competence.
- Before you can effectively communicate your values about sexuality to your children, you need to know what you believe and why. You are the main educators of sex for your child.
- You must be “askable” (Gordon & Gordon, 2000). This means you should be prepared for any question or incident that involves your son or daughter’s sexuality. Always say “That is a good question.” Remember to answer questions simply and directly.
- Remember to use the same teaching strategies that you have used to teach your children other skills. Some of these strategies may include visual schedules or check off lists, videos, facts in books, pictures of what is happening to their bodies, stories to predict what might occur, or specific terminology. Think of puberty as just another stage of development. Embrace this time and move forward.
Autism Speaks Transition Toolkit, www.autismspeaks.com
Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism, Mary Wrobel
Autism ~ Asperger’s and Sexuality: Puberty and Beyond, Jerry Newport
Self-Help Skills for people with Autism, Stephen R. Anderson
Girls, Growing up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-teen and Teenage Years, Shana Nichols
Adolescents on the Autism Spectrum: A Parent Guide to the Cognitive, Social, Physical and Transitional Needs of Teenagers with Autism Spectrum Disorders, Chantel Sicile-Kira
Autism and the Transition to Adulthood: Success Beyond the Classroom, Paul Wehman
Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum, Stephen Shore
Life and Love: Positive Strategies for Autistic Adults, Zosia Zaks
The Facts of Life and More. Sexuality and Intimacy for People With Intellectual Disabilities, Leslie Walker-Hirsch 2007.
Sexuality: Your Sons and Daughters with Intellectual Disabilities, Karin Melberg Schwier and Dave Hingsburger.