Puberty and Autistic Spectrum Disorder - Ready or Not, here it comes

1. Puberty and Autistic Spectrum Disorder- Ready or Not, here it comes Mark Brown Community Learning Disability Nurse

2. Let’s Tell The Truth • Yes, even someone with severe ASD goes through puberty. Sexuality is part of being a human being and having autism does not change that • No, what was cute as a child is not necessarily cute as a teenager. • Yes, puberty can be extremely embarrassing for those around them, but more frustrating for the person. The subject of puberty and sex is not one most of us like to openly talk about. • Remember not all “deviant” behaviour is actually that. Often it is lack of skill and understanding.

3. Remember: Like it or not you will have to deal with puberty and sexual issues eventually. This may be directly and in a positive way, or indirectly and most likely in a negative way

4. Puberty – what happens Cognitive Development Physical Development Sexual Development Social Development

5. Developments in Puberty Physical • Hormonal changes • Development of primary and secondary sexual organs • Body hair growth and maturation of bones • Menstruation in girls • Unfortunately there are no clear boundaries and rules in relation to these changes

6. Developments in Puberty (cont) Sexual Behaviours Adolescents 12-18 yrs • Much greater variety of sexual expression • More difficult to determine the “norm” • Explicit sexual discussion amongst peers • Swear words, obscene jokes, sexual innuendo • Masturbation – Interest in pornographic material • Flirtatious behaviour – mutual and consenting sexual behaviour e.g. Kissing, fondling • Consensual sexual intercourse

7. Developments in Puberty (cont) Cognitive • The move from concrete thinking to more abstract thinking. • Individuals with AS/ASD are likely to find abstract concepts difficult • Concrete concepts may be understood • Combining concrete concepts in an abstract way may therefore prove problematic, e.g. “masturbation feels good, I am in a public place, therefore I masturbate in public” • Clear problems stemming into the wider social arena

8. Developments in Puberty (cont) Social • Heightened awareness of self • The ability to understand and identify with the experiences and feelings of others. • Movement from the family into peer groups and the experimenting with forming pairs. • Sense of loss; both the adolescent and the parents

9. Common Issues relating to ASD & Puberty • Understanding the concept of puberty • Social Development • Sexualised Behaviour

10. Key Issues to focus on • The TIME and PLACE • What can be done appropriately and safely, remembering to individualise the approach where appropriate. This should include the individual’s level of communication. • Where, and when is it appropriate to do so • Reason behind what is happening • It is widely accepted that people with AS/ASD are visual learners. • Consider using available resources, both books and visual aids.

11. Supporting through puberty • As with any adolescent, those with AS can be sensitive to criticism, especially appearance, and some can be prone to developing anorexia nervosa in early puberty. • They may become more AS as they attempt to handle the emotional changes. • The adolescent with AS may have different values and attributes than their peers, e.g. more concerned about exam grades than romance (perceived as a “nerd”)

12. Social Development Remember: • All young people need to learn social skills. • Regression in skills can occur during puberty • The best place to learn social skills is by being part of your family and being involved in its social life. • The earlier and more frequently social skills are taught and practiced the better. • Pick out a number of skills and go through them one at a time, dividing each down into a series of steps

13. What is inappropriate sexualised behaviour? Inappropriate sexualised behaviour can be considered as: • Initiated sexual behaviour which is inappropriate for a child’s age and development And/or • Initiated sexual behaviour which is inappropriate in its context. E.g. behaviour which is for private circumstance but occurs in non-private circumstances And/or • An initiated sexual act committed: A. Against a person’s will B. Without informed consent C. In an aggressive, exploitative or threatening manner

14. Some Common Sexualised Behaviour Problems • Inappropriate touching of other people • Exposing self • Masturbation • Inappropriate masturbation • Excessive masturbation • Inability to masturbate to satisfaction

15. Masturbation Masturbation issues include: • Inappropriate areas to masturbate this includes repeated touching of the genital area through the clothing to actual public masturbation. • Excessive masturbation • Inability to reach climax

16. Masturbation - How can we help? • The issue of masturbation is of utmost importance: during adolescence, autoeroticism is the most common source of sexual satisfaction. Deterring masturbation completely is both unfair and difficult. • It allows sexual tensions to be released and “can be a way of becoming more comfortable with and/or enjoying one’s sexuality by getting to know and like one’s body” • Masturbation can be accompanied by strong feelings of guilt or anxiety. The adolescent must be given the chance to discuss these feelings openly and honestly with a trusted person

17. Masturbation – How can we help? • Has to be a “hands off” approach, literally. • Cannot provide a role model. • If masturbation becomes the person’s principle activity, then it is important to investigate the underlying motivations or possible causal factors. This is the same for an inability to climax. • The frequency of masturbation usually decreases naturally after adolescence. • However it is possible to provide structure and boundaries to the situation. Thus reducing embarrassment for those involved, and reduce the risks of abuse.

18. Masturbation – How can we help? • Decided upon appropriate location for the adolescent with AS to masturbate. • Provide relevant items e.g. tissues, etc. in the area. Remember age appropriate. • It is important to remember the possibility of any objects (e.g. cuddly toys, etc) being associated with the act of masturbation in the same way as feelings and emotions are. • Agree what would be classed as a reason for them to go to the location and how frequently. • Provide a means of indicating when they should relocate.

19. Social Stories for Menstruation

20. Final Thoughts • As sexuality often comes from the peer group, people with AS are at a disadvantage as they do not experience neurotypical peers. Therefore someone has to proactively help with the developments. People with AS become more confused re: sexuality, and are highly likely to get into trouble later on. • Group sex education requires individualising due to the ability ranges. Also timing and wording are dependent upon individual abilities. A minority may not be able to be educated if they are unable to cope with planning ahead as they may become more anxious due to being unable to control their development.

21. Final Thoughts • Remember some self stimulatory behaviour difficulties are due to social aspects and rules which people with AS are unaware of. • It is important to remember that some behaviours are historically associated with an emotion and that can cause arousal with certain objects, places, people or activities. It may be necessary for those around the person with AS to provide the cue for the person to relocate when aroused.

22. Final Thoughts • Teach what a person should do in all situations, not what they should not do in specific situations. • People with AS can be sympathetic but not empathic and have to be told how a person feels. • Remember often people with AS have to learn what we learn scientifically. They require direct learning rather than indirect, e.g. someone masturbating in public may not have been taught otherwise. It requires positive boundaries which must be appropriate to all areas.