ASA's 37th National Conference on Autism Spectrum Disorders (July 13-15, 2006)

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Friday, July 14, 2006: 1:45 PM-3:00 PM
Providence Ballroom I
#1962- Puberty, Hygeine and Sexuality in Adolescence
Adolescence is a difficult time for everyone – neurotypical or not – as a person transitions from being a child to a young adult. To become as independent in adulthood as possible, teenagers of all different ability levels must learn self-care, appropriate behaviors, modesty and sexuality. Areas to be covered include: puberty and changing bodies, hygiene and self-care, modesty and masturbation. For safety reasons and in preparation for adulthood, all teenagers need to learn about relationship boundaries, and sexuality.

Presenters:Chantal Sicile-Kira, BA, Social, Ecology, Autism: Making a Difference, Executive Director - Chantal Sicile-Kira is the author of 'Autism Spectrum Disorders' (recipient of the 2005 ASA’s Outstanding Literary Work of the Year Award) and 'Adolescents on the Autism Spectrum', both published by Penguin. Chantal has been involved with ASDs for nearly 20 years, first as a professional and then as a parent. She hosts a weekly radio show on Autism One Radio ( and is a national speaker and consultant on ASDs including adolescent issues and transition planning. Chantal is the founder of Autism: Making a Difference, Inc. and is active with various non-profits, including the San Diego Chapter of the ASA.

Stephen M. Shore, Ed.D., Adelphi University in New York, Assistant Professor - Nonverbal until four and recommended for institutionalization, Dr. Shore focuses on empowering people with autism to develop their capacities to their fullest extent possible. Internationally known author and educator, Stephen serves as a board member for the Autism Society and, other autism-related organizations and is on faculty at Adelphi University.

Learning Objectives:

Attendees will be able to identify strategies to teach teenagers of different ability levels about their changing bodies, hygiene and self-care.

Attendees will be able to identify strategies for teaching teenagers about modesty, privacy and masturbation.

Attendees will be able to discuss what to teach about relationship boundaries, and sexuality to teenagers on the spectrum.

What Parents Need to Know about Adolescence and Puberty:

People on the spectrum usually like predictability and routine and dislike change. Thus, many teenagers have a hard time with the idea that their bodies are changing and growing and that they are getting bigger and growing out of their clothes. For this reason, it is important to prepare students for the changes to their bodies before they begin puberty.

The presenters will discuss changes that parents and professionals need to be aware of in the teen years including: the possibility of seizures developing in about one out of every four autistic individuals during puberty, the high number of individuals with Asperger's Syndrome diagnosed with depression during the teen years, and the appearance or re-appearance of meltdowns and aggression

What Teenagers Need to be Taught Changing Bodies, Hygiene and Self-Care:

Presenters will discuss what, when and how to explain to teenagers of different ability levels about the changes their bodies are going through including the growth of body hair and onset of body odor, and the different changes for males and females. Explaining about the loss of bodily fluids (ie menstruation and ejaculation) before it happens is also important, and this will be covered.

Although each teenager needs gender-specific information to learn about his or her body, both girls and boys need to learn general characteristics about the other sex. This is necessary for discussions about sex education, sexuality, and safety issues including appropriate and inappropriate touching

Most tweens and teens on the spectrum do not independently learn what they need to know about hygiene and self-care. Although it is best to start teaching about hygiene, health and self-care before puberty, it is never too late. The goal is to teach these teens to be as independent as possible in these areas. For many, this will be an important, ongoing life-long goal. Teaching the teen about independent hygiene skills also teaches them about modest and responsibility.

Hygiene and health are areas that need to be emphasized. Cleanliness is a contributing factor to self-esteem and health. For all different ability levels, there are ways to teach self-care routines and these will be discussed. Sometimes the lack of learning or implementing health and hygiene routines has to do with remembering the different steps, remembering which routines to do when, or not having the motor planning to follow through.

When problems arise in teaching independence and sequences it is important to do a task analysis and analyze why a person is having a problem with a certain step ( ie doesn't remember a certain step, has sensory issues and does not like the feel or smell of something, etc). Specific strategies are then tailored to getting the teen towards independence, and these will be discussed by the presenters.


Masturbation is a common activity for neurotypical so a parent needs to accept the inevitable and make sure it is done in private. Your teen needs to be told that it is a normal behavior, okay to practice in specific private places only, and definitely not in public. Also, many children with autism spend (let's face it) time they consider boring sitting and waiting in classrooms. They may find masturbation (the ultimate self –stimulatory activity that cannot be taken away) is a good way to pass a boring moment if they are not otherwise occupied.

Presenters will discuss strategies to teach the adolescent to contain masturbation to an appropriate private place (ie the bedroom), and strategies for preventing masturbation in school settings (this involves communication between home and school setting), and in public and displacing it to private time at home in appropriate setting.

Modesty, Privacy and Personal Safety:

Respect for the teen with an ASD, as for any individual, is the one outstanding factor to keep in mind when thinking of modesty and privacy.

Presenters will discuss the following points: Teaching the notion of privacy begins with the familiar adults in the teen's life. To start with, adults need to respect students and allow them to demonstrate privacy whenever possible, and need to adjust their way of helping them. The concept of privacy needs to be taught and reinforced in all environments. School staff unfamiliar to the teen be introduced to them, and only staff familiar to the teen be involved with any personal, intimate self-care. Staff members should ask permission before touching a student, even if it is an occupational therapist doing sensory integration with the teen.

Teach the concept of modesty at home, if your tween or teen has not mastered this concept yet. He needs to learn the appropriate place for private acts (such as dressing or being naked).

Teens need to be taught certain skills for personal safety. Asperers and the more functionally able can be taught how to pick up on non-verbal cues to recognize a potentially threatful situation. Teaching how to say ‘no' or ‘go away' for personal safety reasons is important to all. Teens with autism have learned all their lives to be compliant, but as they are becoming independent they need to learn about when it is appropriate and how to express that they do not wish to comply Presenters will discuss different strategies to teach for different ability levels the different points raised about modesty.

Relationship Boundaries and Sexuality:

Teenagers on the spectrum may be physically maturing at the same rate as their teenage peers, but emotionally they tend to mature much later. Early adolescence is when most young people seek more independence from their parents, seek even more approval from their peers, and try to fit in with the crowd. Teenagers start showing an interest in romance, start dating and perhaps getting physical with members of the opposite sex. This is usually in marked contrast with the teenagers on the spectrum, including those with Asperger's Syndrome, who may continue to stick to the rules and value high grades, while his peers are interested in romance and start testing the system.

However, all on the spectrum need to have some understanding of sexuality and relationship boundaries, for two reasons. The first is that, unfortunately, people who have intellectual disabilities are at a high risk of sexual abuse and of catching AIDS. Even if your child does not have intellectual disabilities, the very nature of ASDs makes it difficult for someone with the condition to read the social cues and understand appropriate versus inappropriate behavior. For this reason it is important to discuss appropriate and inappropriate touching. He needs to learn to be able to tell a responsible person about any inappropriate behavior that someone might be doing to him. It is imperative for your child's safety that he be able to identify appropriate places on his body where people can touch him. How to teach about the different types of relationships and appropriate physical distances and closeness will be explained.

Secondly, as an adult your son or daughter my wish to engage in sexual activity, and they need to be taught about sex. The teens included in general education may have had sex education at school (which is part of the general curriculum) but may not have fully digested or understood the implications, and others on the spectrum may not have had any sex education. Parents can also teach their philosophical and ethical viewpoint about sex, marriage and commitment and not just about the birds and the bees.

Appropriate resources for more information will be given.

See more of The ASA's 37th National Conference on Autism Spectrum Disorders (July 13-15, 2006)