Lynne Moxon BA, MSc. PGCE, C.Psychol, AFBPsS FIfL ESPA Northumbria University

1. Puberty and Growing Up: Children and Young People with ASD Autism Seminar - 28th April, 2016 - The Wave Centre Maryport Lynne Moxon BA, MSc. PGCE, C.Psychol, AFBPsS FIfL ESPA Northumbria University

2. it is not unusual for any sexual expression shown by people with learning disabilities to be seen as a problem. Rarely is it celebrated as a normal aspect of development.

3. Sexual development and curiosity are normal developmental processes • Building social relationships by making friends and establishing intimate partners is a key developmental life stage for young adults.

4. Parents and teachers need to realise that their child needs to be very aware of body changes, privacy rules, personal space and distance, relationships and permission. • Boundaries of body (private parts), of space (private places), and of topic (private subjects) need to be emphasised, and adult forms of affection and closeness need to be developed.

5. When do we start? • With toilet training: public/private, parts of the body, touch, undressing If your child shows an awareness of how older people are physically different to them, this is a good starting point for discussion. Noticing a beard, breasts or  underarm hair is a very tangible visual sign for a person with ASD about difference to  themselves. 

6. The longer you leave a child in a disposable nappy the longer they take to train, need to use trainer pants so they can feel wet ( use it or lose it) • Out of disposables by 3 • Step 1 - setting the scene • awareness of wee and poo, names of body parts • limit all activities to the bathroom – private place

7. Puberty, or the start of adolescence, is now taking place earlier than in previous generations, and is earlier in girls than boys. • By the end of primary school, many girls in a class will probably have begun menstruation. This is triggered by weight not age.

8. What about sexual feelings? • Majority of persons with LD and ASD do have sexual feelings, needs and behaviour. Sexuality can be a very positive experience to them. • Some are asexual. • Sex is not compulsory

9. Sexualisation Young people are increasingly bombarded by sexual images and there is an increase in casual sex. 70% of children,12 to 15 report unintended exposure to porn websites 58% of teenagers view porn regularly Boys may be pressurised into having sex 60% of 13-17s think Sex and Relationships Education should start from age 8 at the latest. There is a dangerous lack of knowledge about STIs

10. Sexualisation is the imposition of adult sexuality on to children and young people before they are capable of dealing with it, mentally, emotionally or physically.

11. By not recognising that a child is growing toward adulthood, parents may not feel ready to begin teaching boundaries. Most of the incidents which lead to trouble for young people with communication difficulties, autism or learning difficulties are "boundary violations" brought on by the impulse of a moment.

12. To deprive a person of boundaries is to leave them, clueless as to what sorts of behaviour would be acceptable or unacceptable. Clearly and consistently outlining what is acceptable and what is not. It also means respecting the person enough to understand that sometimes they will push those boundaries just to see how firm they are

13. What is the most important information for your sons and daughters users to know about growing up and sexuality?

14. Why do we need sex and relationship education? • A number of the authors Hellemans et al (2007) Koller (2000) Ray et al (2004) suggested specific topics for sex education.. • There are building blocks to being able to have relationships and without them as a foundation for adult life, the relationships do not happen or they falter. • Hatton and Tector (2010 ) interviewed young people at school when devising an SRE curriculum, • All of them wished they had understood themselves better when they were younger; they wished they had known about their ASD and learnt about its impact and how people without ASD are different. • They particularly would like to have been taught something about relationships and how they worked.

15. ‘I thought to get a boyfriend you had to agree to have sex with them and so I told the first boyfriend I had that I knew about this and would have sex.’ • ‘I like things to be my way, I am not able to know what someone else is going to do so it seems better if I just masturbate on my own.’ • ‘ I wish I had learnt to keep myself safe and what is meant if someone asks you to go for a walk and then they want to touch you – I did not understand.’

16. Actual sexual behaviour? • Masturbation most frequent. • Person-oriented: touching, kissing sometimes towards unavailable « partners ». • Sexual intercourse: normally intelligent individuals. • Asperger: less experience compared to neurotypicals.

17. Sex and relationship education Goals: Wider and more accurate knowledge Develop own limits and judgement Decode situations: interpersonal & intimate contexts Improve social and sexual skills: learn adaptive and positive behaviours Lynne Moxon 2012 17

18. Public, Private, Personal Space

19. Teach the rules….. • Structure is important for people with LD and ASD. If you did not know the rules for social situations you would be anxious.

20. Rules, information, communication

21. THE ETIQUETTE OF THE URINAL: KNOW YOUR P'S AND Q'S There is an unstated code of behaviour in men’s public loos which is surprisingly universal. No pairingUnlike women, men visit the lavatory entirely for practical reasons, and it is always suspect to follow a friend to the loo immediately. No talkingTerse conversation in the loo can take place before and after, but not during, use of the urinals. No lookingEyes should be aimed straight ahead or down in concentration; glances towards your neighbour are very suggestive. No touchingHands should be in front of you. An elbow bump can be deflated by a sober apology, but without turning the head. Urinal occupation rulesWhen faced with an array of urinals to choose from, which one should you take.

22. The Urinal Game: Which to Choose? 1 2 3 4 5 6

23. Social rules change with age and place

24. At what age does it become inappropriate?  • Modesty • Toileting • Sharing a bed • Stripping off clothes • Meltdowns

26. Kissing • Bullock (2005), referred to a 13 year old boy’s likely confusion in watching other students enjoying holding or kissing each other, without any reprimand, and the reaction in the form of screaming - to indicate anger or distress - when he sought to do the same thing with a girl with whom he wanted to be friends. The boy’s mother summarised the frustration by describing him as if he were stuck behind a sheet of glass, seeing everything going on, but not quite able to join in, or joining in but getting it wrong.)

27. Kissing Kissing is in many ways the height of intimacy and is an important developmental step, marking the beginning of a young person’s sexuality(Strong et al., 2005).

28. Is this Public or Privatebehaviour?5 point scale 543 2 1

29. 5 High 4 3 2 1 Low Physically hurtful threatening behaviour, you will be fired from a job, suspended from college or you may go to prison. Should never be done in public. Scary behaviour, you would probably get sacked from a job, may be taken to court or fined. Should not be done in public. Odd behaviour, breaking rules, could make other people uncomfortable or nervous. Not against the law but you may be told off by your parents, friends, employer or college. If done in public people will think you are strange. Showing off. Reasonable behaviour talking to someone you know, keeping to college, work and the social rules. Using a private place properly. Enjoying others company, may be in a public place. Informal social behaviour smiling, waving. Noticing others, sitting together. Formal photo. Public behaviour.

30. Public or private place

31. 543 2 1

32. 543 2 1

33. Personal space

35. Who is too close?

36. Are they:  “too close,” “too far,” or “just right”

37. What should be included in a sex education programme? • BODIES - women’s and men’s bodies, naming of private parts, the • differences and similarities. • growing up and puberty • menstruation and menopause. • hygiene • body parts and functions

38. Activity 1 Aim: How much do you know?

39. How many sperm in the average ejaculation 1000 1 million 100million How long can the average sperm hang around in the average vagina?Less than 4 hoursLess than 12 hoursLess than 36 hoursMore than 5 days What is the speed of sperm when it leaves the end of a man's penis during ejaculation? 5 mph13 mph28 mph39 mph

40. The average length of a man’s erect penis is3 inches5 inches7 inches12 inches • The average length of a woman vagina is • 3 inches5 inches7 inches12 inches • The average age for girls to start their periods is • 8 • 10 • 12 • 13

41. Actions have consequences and we do our sons and daughters no favours by pretending that they can behave inappropriately without facing them.

42. Pubertyaverage age for girls now 10, when she weighs 7.5 stone

43. Given the strength in visual skills for individuals with ASD, the information about body changes in puberty is best given in a visual way.Given the strength in visual skills for individuals with ASD, the information about body changes in puberty is best given in a visual way.

44. Topics for puberty social stories for boys: • growth acceleration (title ‘I will get taller’)  • pubic, underarm, and facial hair development  (title ‘extra hair will grow’)  • testicular and penile enlargement (title ‘my body  will look different’)  • spontaneous erections, sperm production, wet dreams (title ‘my body will do new things’, or use simplified versions of these terms as titles)  • voice deepening (title ‘my voice will sound different’) 

45. Billy's mum explains that when hairs grow you begin to sweat. • Ask the group whether sweating is good and what they can do so they do not smell e.g. • use a deodorant.

46. Billy's dad is having a shave: • Explain what this is and what you need (wet/dry shave). • Explain -every man needs to shave if they don't want a beard. • Billy's dad shows him an electric razor.

47. Wet Dreams • Your son might find that he has a 'sexy' dream at night and wakes up to discover that some liquid (sperm) has leaked out of the end of his penis. This is referred to as wet dreams in puberty and is quite normal and natural.  • There is no reason to ever feel guilty about having a wet dream, they are subconscious and can not be easily controlled or manipulated.

48. Erections • Erections are a perfectly normal function of the male body, especially in males who are going through puberty. • Although many erections are caused by sexual arousal, such as watching a sexy film or girl you like, many erections seem to happen for no particular reason. • So if you have an erection in an odd or embarrassing situation — like right in the middle of a history lesson — there's no reason to worry that something is wrong with you. Your body is just acting naturally for your age. 

49. Looking After My Balls Sheila Hollins and Justin Wilson. Illustrated by Beth Webb. • This book shows men with learning disabilities how to check their testicles, to look for anything that may be wrong and to seek help from their GP if they are worried. • It contains details of physical examination and early investigation (e.g. ultrasound). It does not cover testicular cancer or its treatment. 88 pages, 2004, price £10.00 ISBN 978-1-904671-05-3

50. Topics for puberty social stories for girls:  • breast development and widening of the  hips (could be titled ‘the shape of my  body will change’)  • pubic and underarm hair development  (title ‘extra hair will grow”)  • onset of menstruation (title ‘I will begin to  have my period’)   • growth acceleration (title ‘I will get taller’)