The what, how and when of sex education for young people with severe autism
Sexuality is a slippery and broad concept, encompassing sexual preferences, sexual activities, sexual power and presentation of the sexual self. Mainstream sex education often focuses on the more obvious facets of sexuality, those being pregnancy, contraception and sexually transmissible infections, with more or less emphasis on empowering young people and power in relationships.
Autistic spectrum disorders form a continuum of conditions from those with higher cognitive functioning and social abilities to those with more severe forms of autism, in which cognitive, verbal and social abilities are affected profoundly.
Why is sex education important?
Historically, people with more severe autism have been subject to one of two opposing perceptions. According to the first view, they may be treated like small children, even when they are adult. This approach tends to label more severely autistic people as being vulnerable, unable to take decisions in everyday life and needing constant supervision by someone whose role it is to make decisions for them. In terms of sexuality, these people may become liable to sexual abuse and the target of opportunistic paedophiles.
Certainly, more severely autistic people attract those who might prey on them sexually. However, research shows that those who are equipped with sexual knowledge are less likely to be targeted by paedophiles, partly because they can identify inappropriate sexual behaviour and object to it and partly because they can describe in detail what has happened if sexual abuse does take place (Hollomotz, 2011). In addition, the greater the circles of social contacts a child has, the more likely it is that any inappropriate sexual behaviour will be identified. Ironically, the greater the perception of vulnerability linked to protection, the more vulnerable that person is in actuality.
According to the second view, those with more severe forms of autism sometimes may be perceived as dangerous sexual predators whose behaviours needs to be managed and supervised. Evidence suggests that a significant number become embroiled with the police because they are not aware of what constitutes appropriate sexual behaviours (Hollomotz, 2011).
Unlike typically developing children, those with autism do not learn “by osmosis” from their peers. Usually, social communication does not take place to any great extent in the school playground and many children with autism do not attend clubs or have friends outside school. Teaching aspects of sexuality has to be formal and explicit to be effective for these pupils. If we consider that education prepares our children for social citizenship and independence in the world, sexuality should be a primary focus of teaching efforts.
Working with parents
Emphasis in teaching such pupils should be given to working closely with parents, which is reflected in UK Government policy. Ways of working with parents could include discussions about sex education at annual reviews of children’s statement of SEN or developing a series of ongoing sessions for groups of parents about sexuality with personal, social and health education (PSHE) coordinators or SENCOs.
From parents’ perspectives, sex education at home may only begin when problems emerge, the most common being masturbating in public. So much depends on parents’ attitudes and belief systems; some severely autistic children may gain a reasonable grounding in sexuality, while many more have a very limited grasp of sexuality (Reynolds, 2013). The fact that sex education is not a compulsory subject in the National Curriculum (aside from aspects covered in biology) can leave some children with insufficient knowledge.
Some parents may insist that their children receive no sex education until they show signs of being sexually interested, such as frottage (rubbing sexually against another person). Often, this is based on an assumption that educating these children about sexuality will actually sexualise their behaviours and thoughts. However, evidence shows this simply is not the case and that waiting for a child to develop sexual interest may run the risk that they already behave sexually inappropriately, which, if it becomes entrenched, can be difficult to change (Stokes and Kaur, 2005).
From Key Stage 1 onwards in schools, the foundations of sex education can be laid, bearing in mind that many profoundly autistic children rely on repetition to appreciate the most basic of concepts before these can be built on.
Policies in school need to be robust; flexibility can be unhelpful. For example, many schools adopt policies which advocate no masturbation on the school premises. Others use a “flexible” approach and allow parents to request that their children are allowed to masturbate in toilets because they perceive this to be a “private” space. However, pupils with severe autism may perceive that any toilets are available for masturbation, including public toilets where they may be approached for sexual purposes and can become the subject of intervention by the police for inappropriate behaviour in a public place. Some autistic people may become sexually aroused simply by the sight of porcelain because of the association between toilets and masturbation, so they may try to masturbate into urinals in public toilets or porcelain kitchen sinks, for example.
What to teach
The following is a list of important learning areas in order of priority (see diagram below, Hierarchy of sexual health learning needs):
- Sense of self and self-determination – for example, saying “yes” and “no” and this being acted upon
- Respect for and understanding of others – for example, understanding emotions and developing a level of empathy
- Friendships and social contacts, including power in relationships, being assertive, public and private behaviours and using public toilets safely
- Physiological knowledge
- Intimate or sexual relationships.
Sexual health learning needs
The following list shows a hierarchy of sexual health learning needs (taken from Reynolds, 2013):
- intimate or sexual relationships
- physiological knowledge
- friendships and social contacts
- respect for others including emotions
- sense of self and self-determination.
Although some teachers and many parents are primarily concerned with sexual intercourse – and the possible consequences of pregnancy and sexually transmissible infections – this cannot be properly understood without the person appreciating the foundations of sex education. Some of the learning areas identified above may seem too complex for those with more severe forms of autism, but this underlines the need for adapting the curriculum for individuals when teaching such pupils.
Essential concepts for understanding
The most fundamental concept to work through with severely autistic children is that of “sense of self” (Hatton and Tector, 2010). In typically developing children, this notion of being apart from their parents or primary carers and having a level of self-determination grows naturally in the first years of life. This may be missing in severely autistic children and may require one-to-one exercises to develop (Reynolds, 2013). Sense of self is essential for understanding of the concept of both giving and asking for consent in any relationships.
The second notion that is useful for children to understand is that of slow, gradual change. This can be achieved using plants, school/home pets or other life that can demonstrate development over time. This is an incredibly important concept to convey because many autistic children fear waking one morning with all the changes of puberty having happened overnight.
Thirdly, the concept of “wet” and “dry”, which may not seem related to sex education, is important. Understanding the difference between wet and dry underpins efforts to help young women manage menstruation and know when to change sanitary pads, for example. For young men, the concept is vital for explaining wet dreams and for both genders giving understanding to climax after masturbation. Linking with parents can ensure that the same message is being given at home, where children bathe regularly and the concept can be reinforced.
One of the overriding issues which can be addressed early in any sex education program is that of public and private behaviours. This is an area that can be usefully discussed with parents to ensure that boundaries are clear in the home as well as in school. Children can be taught that geographical areas of the home are private, such as their parents’ bedroom. General rules around knocking, waiting to be asked in, then entering private rooms can be instilled in the home, as in school.
The NSPCC’s Underwear Rule is a tangible and helpful concept for teaching about private zones of the body in that it specifies that parts of the body hidden by underwear are private. My only reservation is that children need to learn the “correct” terminology for sexual parts of the body, so they can accurately report what has happened if non-consensual sex or child sexual abuse occurs.
Friendships and social contacts are important for pupils from the earliest opportunity so they can experience general issues such as verbal disputes and how to make up afterwards, being assertive and saying “yes” and “no” in friendships. One helpful action schools can take is to encourage parents to bring their children to social events at the school and enjoy parties and other social gatherings. Many parents shy away from social events with autistic children due to painful experiences of their children’s emotional outbursts, so they may need support from the school. Other parents may not see the point of their children socialising, believing that autistic people “enjoy” solo lives, although evidence from autistics defies this perception (Higashida, 2013). Certainly, fostering and maintaining friendships is difficult for autistic people and often relies on outside help to enable such social contacts to develop.
How to teach sexuality
Individualised programs of sex education are necessary as well as some small group work in the class. The rules which apply to all teaching and autism are as appropriate for sexuality, these being:
- repetition, such as story books on related subjects
- visual teaching, such as picture cards or puppets
- use of physical 3D models, which pupils can handle and observe. This may be useful to explain ejaculation, how to insert tampons or insertion of a penis during sexual intercourse, for example.
- role play in class settings
- watching and reviewing appropriate DVDs – this may be particularly engaged in at home on a one-to-one basis with a parent.
Working closely with parents, these methods and information can be reinforced at home. It is helpful for schools to identify suitable resources for parents, possibly allowing parents to borrow resources on a library basis.
Sexuality is inherent to all humans, regardless of cognitive, physical or learning difficulties or disabilities. Effective teaching of issues around sexuality involves close collaboration between schools and parents to ensure messages are clear and repeated in the main arenas in which children live. Far from sheltering children at the severe end of the autism spectrum from explicit sexual information to protect them, research clearly shows that this simply renders them more vulnerable. Knowledge is, indeed, power in the context of sexuality. Understanding of appropriate sexual behaviours, correct anatomical language and exposure to social contacts and friendships better enable these children. Arguably, even more than typically developing children, severely autistic children need to be armed with skills to know and report accurately if sexual abuse takes place and to discourage a perpetrator by being aware of appropriate sexual behaviour.
Kate Reynolds is a registered general nurse, counsellor and trainer of health professionals with 18 years’ NHS experience. She is studying a Masters in Disability Studies at University of Bristol. She is the mother of an autistic child and the author of Party Planning for Children and Teens on the Autism Spectrum (2012), Sexuality and Severe Autism (2013), Sexuality and Safety with Tom and Ellie (forthcoming series of six story books, 2014). Kate blogs at:
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