AUTISM

1. AUTISM AND SEXUALITYObservations on Succeeding in the Challenges of Intimate Relationships for People on the Autism Spectrum Autism One Conference 27-30 May 2008 Chicago, IL Presented by Stephen M. Shore, Ed. D. Christina Adamswww.AutismAsperger.netwww.ChristinaAdamsWriter.com

2. Loss of speech & tantrums AUTISM Environmental withdrawal Self-stims A U T I S M & S E X U A L I T Y Introduction – Stephen Shore The Autism Bomb

3. Increasing Variability of Presentation T H E A U T I S M S P E C T R U M Severe Moderate Light Kanner’s PDD-NOS HFA/AS Rosenn, D. (1997). “Rosenn wedge”. From Aspergers: What we have learned in the ‘90s conference in Westboro, MA. Used with permission T w i c e E x c e p t i o n a l i t y

4. Typical develop- ment Turn over at 8 days Rapid physical and motor develop-ment Autism bomb hits Withdrawal from environment Tantrums Putnam evaluation of atypical development, strong autistic tendencies & psychotic Early intervention from parents who refute recommendations for removal from home Enter Putnam Condition improves to “neurotic” The wonderful world of watch motors Echolalia and return of speech Eating baby food Kinder- garten Social & academic difficulties Discovered making a mess of myself while eating BBQ chicken wings Loved cats but dogs… Yikes bikes! Cracking rocks Special interests in astronomy and weather Teacher concerns for reading and math difficulties Concern about dropping the letter “e.” My friend says “he feels like a pizza” and I argue with him that he does not look like a pizza and probably does not feel like one either Middle and high school Finally getting it together but still often in left field Discovering the band room Time to focus more on people and not their bicycles AGE 0 1.5 2.5 4 6 8 10 13 19 E V E N T S A U T I S M & S E X U A L I T Y Introduction – Stephen Shore College More friends Dating Others really do think differently Utopia! Completed a doctoral dissertation on comparative approaches for working with children on the autism spectrum

5. A U T I S M & S E X U A L I T Y Introduction – Christina Adams

6. A U T I S M & S E X U A L I T Y Talking About Sex - Myths of Sexuality - Peter Gerhardt But the Truth is… • Persons with autism are as diverse sexually as everyone else - and, sexuality education is complicated by challenges in language, communication, and social differences. While sexual feelings and interest may be high, a primary information source is usually not available – non-spectrum teens (Volkmar & Wiesner, 2003). - With proper support people with autism can have relationships; often with a person having a difference. Common Myths • Persons with autism… - have little to no interest in sex - are hypersexual - are solely heterosexual So… How can we help people on the autism spectrum deal with this important part of life?

7. A U T I S M & S E X U A L I T Y Talking About Sex - The Tapestry of Sexuality Sexuality is a part of life and is as developmentally appropriate for people with autism as anyone else. Heterosexuality Homosexuality Bisexuality Asexuality Everyone has a piece of each. It’s just a matter of degree.

8. A U T I S M & S E X U A L I T Y Talking About Sex - Topics to Cover - Peter Gerhardt 1. Public versus private behavior 2. Good touch versus bad touch 3. Proper names for body parts 4. Slang names for body parts 5. Personal boundaries 6. Masturbation 7. Social skills and relationship building 8. Avoiding danger and abuse prevention 9. Dating skills 10. Personal responsibilities and values

9. Passerby, Classmate, Coworker, Fellow Commuter Stranger Neighbor Classmate, Coworker Acquaintance Friend Close Neighbor Classmate, Coworker Mom, Dad, Sibling, Other Family --> Significant other Boy/Girlfriend, Fiancé, Spouse A U T I S M & S E X U A L I T Y Circle of Relationships Develop a social narrative

10. A U T I S M & S E X U A L I T Y Friendship, Romance, and all that “Other Stuff” - Teresa Bolick, Ph. D. Before you talk about sex you need to talk about closeness Listeningis the most important skill for friendship and romance. Goodhygiene is probably the second most important skill. Close friends talkwith each other about life experiences. Close friends can “agree to disagree.” The most important part of “boyfriend” or “girlfriend” is “friend.” Showing interestin another person is a terrific way to flirt. Being “revvedup” can get in the way of friendship and romance.

11. A U T I S M & S E X U A L I T Y Friendship, Romance, and all that “Other Stuff” - Teresa Bolick, Ph. D. Nevertouch a friend unless he or she says it’s all right. If you feel uncomfortable about someone’s actions (or your own), tell a trusted adult. LAST BUT NOT LEAST, “Stop” means “Stop” and “No” means “No.” Those with autism are people too… Perhaps just more so.

12. A U T I S M & S E X U A L I T Y Talking About Sex – Jerry Newport When? Look for signs of interest • Suggestive clothing • Stickers • Books and magazines • Questions and comments • Signs of Masturbation Great subject for incidental teaching! Life-long conversation

13. A U T I S M & S E X U A L I T Y Talking About Sex – Jerry Newport How? Sex is a normal yet a very private act and is clean. • Discuss in a developmentally appropriate manner - Find the balance between not too much and not too little • Make sure you understand the question(s) being asked • Explain in a matter of fact manner

14. A U T I S M & S E X U A L I T Y Talking About Sex – Jerry Newport Helpful Hints for Discussion • Use simple visual aides to help explain male and female anatomical functions- People with autism tend to be visual. • Sex is a part of growing up to be discussed at the proper place and time • Responsibility in… - Seeking- Having- Respecting the wishes of potential and actual partners

15. A U T I S M & S E X U A L I T Y Talking About Sex – Jerry Newport Helpful Hints for Discussion • Validate feelings of…- Fear - Possible loneliness from being left out socially ° For women especially — using sex as a way of gaining acceptance • Share your own experiences as appropriate…- Successes- Mistakes • You are there to provide nonjudgmental support in times of…- Further questions- Emergencies

16. A U T I S M & S E X U A L I T Y Talking About Sex – Masturbation - Peter Gerhardt Redirecting Inappropriate Masturbation Interrupt the behavior as early in the chain as possible Remind the individual as to the parameters of time and place Redirect the person to… A. activities requiring the use of both hands B. activities requiring preferred levels of attention, focus, or physical movement C. the appropriate place for that activity Make the alternate activity intrinsically reinforcing Consider scheduling “alone time” in their room if appropriate Avoid redirection to places other than an individual’s bedroom (e.g. bathroom)

17. Helping Sam Get a Date - Case Study —Relationships— Sam is 16 years old, plays the tuba, and has recently taken notice of a cute flute player in the band. He has shared with you that he would like to get to know her “better.” Sam has told you a number of time he would like to see “more” of her and you sense that he just can’t quite bring himself to say that he wants an intimate relationship. He’s even talked about the possibility of marrying her. Sam also revealed to you that she declined his offer to take her out for a hamburger. As Sam’s confidant, what are some things that you can suggest to Sam about romantic relationships and how he might be able to get a date? • Please do the following… 1. describe what and how you will tell him about intimate relationships, and, 2. suggest how he might increase his chances of success for a date, and, 3. how to tell if she is not interested and what to do about it.

18. FRIENDSHIP, DATING, & SEXUALITY Talking About Sex – Resources Aston, M., The other half of Asperger Syndrome. Hénault, I., Asperger’s Syndrome and sexuality: From adolescence through adulthood. Hendrickx, S. Love, sex and long-term relationships: What people with Asperger Syndrome really really want. Lawson, W., Sex, sexuality and the autism spectrum. Mesibov, G., The TEACCH approach to autism spectrum disorders. Newport, J. & Newport, M., Autism-Asperger’s and sexuality: Puberty and beyond. Shore, S., & Rastelli, L., Understanding autism for dummies. Sicile-Kira, C., Autism spectrum disorders: The complete guide to understanding autism, Asperger’s Syndrome, pervasive developmental disorders, and others ASDs. Wrobel, M., Taking care of myself: A hygiene, puberty, and personal curriculum for young people with autism.