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Support individuals to create meaningful interpersonal relationships, healthy sexuality and personal safety.  -Advancing Futures for Adults with Autism Preliminary Report, 2009.

The subject of teaching healthy sexuality is a delicate matter incorporating social, cultural, and religious mores.  Never the less, it is imperative that parents, advocates, educators, and other professionals exchange information and collaborate on how best to serve the needs of individuals with autism.  Honest communication starts in the home, but families need support and resources based upon collaboration.

My three sons are riding the crest of the huge birth cohort with autism.  They are smack in the middle of adolescence and puberty.  Until recently, I thought my older two (14 and 12) were included somewhat successfully in school Health classes, supplemented with home discussions and additional resources.

My eldest seemed to understand what was covered, and read  What’s Going on Down There?, given to him at home.  We had no problem broaching this subject, as he is an avid asker of questions, anytime and anywhere.  I remember him loudly stating he wanted to “talk about S – A – X”.  Aside from spelling, his difficulties in learning about sexuality lie in the abstraction and complexity of social relationships.

But my middle son!  One recent morning, he was playing a video game.  As he deftly maneuvered the game controls, he asked, “Hey- Mom, what’s an STD?  What’s masturbation?”  He heard these words in 7th Grade Health.  I asked him if they went over these words in class and he said, “Yeah, but I don’t get it.”  I explained the definitions briefly, wondering what else he wasn’t “getting”.  He and his dad went over it again later.  I then realized our teaching about sexuality both at home and at school was primarily language-driven.  I decided to include him as I planned to teach my youngest.

The youngest is in 5th Grade.  We knew it was time to deal with this issue.  Also, a permission slip to attend the 5th Grade Health class came home in his backpack.  Although my son is a year older than his peers, he is much younger emotionally and has language delay.  Because we knew he would be confused and would need concrete social rules about behaving and discussing this subject, we decided to not include him in the class.

However, we wanted our son to have access to the same information as his classmates.  We asked the school in writing to give us the curriculum:  a text, handouts, class notes, or lesson plans.  The picture at the top shows all that we received from the school.  What were we supposed to do with this?  Proctor and Gamble may be profiting from this, but my son certainly has not.

I put out a request for help by email,  list serves, Facebook; I even Tweeted it.  I am thankful for the many parents and few dedicated professionals who responded, from Chantal Sicile-Kira (a keynote speaker in April) to Elizabeth Byars, to John Thomas, to a mom of two girls with autism right in my town.  I’m especially grateful to Dr. Mary Beth Van Bourgondien, who publishes research and trains parents and professionals on understanding and teaching sexuality to adolescents and adults with autism.  If a resource or strategy was mentioned more than once, I included it in these lists drawn from the many responses and additional questions generated:

Autism or Special Needs-Specific Resources

1. Adolescents on the Autism Spectrum, Sicile-Kira
2. Growing Up: A Social and Sexual Education Picture Book for Young People with Mental Retardation, Shea and Gordon
3. Taking Care of Myself, Wrobel
4. Autism-Asperger’s & Sexuality: Puberty and Beyond, Newport and Newport
5. Asperger’s Syndrome and Sexuality:  From Adolescence through Adulthood, Henault
6. A 5 is Against the Law:  Social Boundaries:  Straight Up!, Buron
7. Teaching Children with Down Syndrome about their Bodies, Boundaries, and Sexuality, Couwenhoven
8. The Hidden Curriculum, Myles
9. Autistics’ Guide to Dating, Ramey and Ramey
10. Aspergers in Love, Aston
11. Establishing a sexual identity.  Case studies of learners with autism and learning difficulties., Autism 2009; 13(6):551-66.
12. High-Functioning Autism and Sexuality:  a Parental Perspective., Autism 2005 Jul;9(3):266-89.

Helpful General Resources

1. It’s Perfectly Normal, Harris and Emberley
2. What’s Going on Down There?, Gravelle
3. My Body, My Self for Girls, Madaras and Madaras
4. My Body, My Self for Boys, Madaras and Madaras

Strategies

• Break down the information into smaller sections.
• Present the information visually.
• Spread the teaching out over an extended period of time.
• Halt to visually address unexpected confusion or questions.
• Provide written detailed, concrete rules on social behavior and conversations.
• Make manipulatives from blank business or index cards for sorting into categories:  okay, not okay, unsure, etc.  On these cards, provide examples of specific social situations to gather information on what needs teaching.
• Write a social story with pictures and/or words about where and when it is permissible to touch oneself if this is an issue.
• Make a “Hug List” using names and/or pictures:  Teach child to give and accept hugs and kisses only from people on their Hug List.

Tags: Alison Davis, autism, autism and sexuality, autism in adolescents, Autism Society of North Carolina, autism society of north carolinabookstore, Chantal Sicile-Kira, momof3au, special needs sex education, TEACCH