Sexuality and Relationship Education for People with Autism Spectrum Disorder

Davida Hartman provides useful tips and practical advice for parents and professionals on sexuality and relationship education for people with ASD.

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  • Historically, people with a range of disabilities have been denied rights to their own sexuality.
  • Despite a common belief that people on the autism spectrum are are uninterested in love or intimacy, research shows that most autistic people are going to have normal, sexual feelings and will be as interested in friendship, connection, romance and relationships as anyone else.
  • In general, in the social sphere, people on the autism spectrum need MORE information than other children to counteract their difficulties understanding the ‘hidden curriculum’ of life.
  • If you are a parent of someone with autism, or a professional working with them, here are some tips to get you started:
  1. Be prepared.
  2. Start early.
  3. Teach what may seem obvious.
  4. Give information clearly and calmly.
  5. Don’t over-protect.
  6. Teach the difference between public and private.
  7. Teach how to say ‘NO’.
  8. Don’t do anything for them that they can do independently.
  9. Help them develop friendships.
  10. Help them to understand themselves. 

Historically, people with a range of disabilities have been denied rights to their own sexuality. In contrast, modern international human rights documents acknowledge that all people have the right to knowledge about sexuality in a way that they can understand. They have the right to choose a partner, marry and have children, love and be loved, receive sexuality and relationship education, obtain the highest standard of health care available to them, express their sexuality in ways that are socially appropriate and to pursue a satisfying, safe and pleasurable sexual life. The United Nations Convention on the Rights of Persons with Disabilities addresses many of these issues, although shamefully Ireland is now the only EU country yet to ratify (having been the first to sign up in 2007).

 

Despite a common and unhelpful narrative that people on the autism spectrum are somehow asexual and uninterested in love or intimacy, research (which is borne out in my own clinical practice) indicates that most autistic people are going to have normal, sexual feelings and will be as interested in friendship, connection, romance and intimate relationships as anyone else.

 

The goals of any good sexuality and relationship education program should include promoting positive and pro-social adaptive behaviours, maximising integration, increasing self-understanding, self-esteem and self-determination and encouraging independence in making healthy sexual choices. The primary goal should be to support people in developing a healthy sexuality, i.e. the understanding that sexuality is a normal, healthy and valuable part of being human, which includes:

  1. Having an appreciation for and understanding of one’s own body;
  2. Having the ability to make informed and independent decisions about one’s own sexuality and sexual activity;
  3. Having the ability to develop and maintain meaningful relationships.

 

Research with typically developing children indicates that it is those who were given little information in relation to sexuality and relationship education who have early sexualised experiences and may not have the confidence to make safe sexual decisions, including negotiating contraception. Children who have been taught an understanding of sexuality and safety issues relevant to their age and developmental level are instead provided with a platform to develop healthy, safe sexual identities and relationships. In general, in the social sphere, people on the autism spectrum need MORE information than other children to counteract their difficulties understanding the ‘hidden curriculum’ of life. In this, as in so many other areas, knowledge is power. And a lack of knowledge leads to vulnerability, not only vulnerability to abuse themselves, but also vulnerability to being accused of abuse due to lack of understanding around the appropriateness of their own behaviours.

 

Therefore, just as we have learned to support autistic children through their early developmental milestones, we need to now move towards helping them navigate the equally important developmental milestones of adolescence (of which an emerging healthy sexuality is one) to prepare them for healthy and fulfilled adult lives.

 

If you are a parent of someone with autism, or a professional working with them, here are some tips to get you started:

 

  1. Be prepared. Although children on the spectrum may be delayed in other areas of development, they will experience puberty, adolescence and all that goes with that at the same time as everyone else. This is normal and to be expected. However, they are going to need extra support in these areas because of difficulties understanding social rules and less opportunity to learn from their peers.

 

  1. Start early. Autistic people can struggle with even minor changes in their lives. Learning in general can also be slow and confusing, especially if it is anything to do with social skills. Trying to change rules like ‘Where it is OK to get undressed’ during puberty, already a turbulent time, can cause unnecessary confusion. Look at the things the child does now which may seem cute or quirky (e.g. giving every stranger that they meet a hug), and think “Will it be OK when they are a teenager?” If not, start working on it now.

 

  1. Teach what may seem obvious. Most children learn (often confusing and contradictory) information about growing up, relationships and what it is to be a man or a woman from many different places including friends, family and TV. Autistic people tend not to notice all this information, and the information they do take on they find even more difficult to decode, often leading to embarrassing and hurtful experiences. To avoid this, they need things spelled out for them (e.g. that it is not OK to ask someone out on a date repeatedly after they have said ‘No’). Also, don’t assume that because someone can list the rules of internet safety they will be able to use this information in real life. Real life practice is vital.

 

  1. Give information clearly and calmly. Use a positive tone. Don’t overload with information or language. Back up information with pictures, whatever works best for the individual already. Be concrete and use correct terminology (i.e. not made-up names that nobody outside of their own family or community will understand). Teach those with good language skills the correct words to use when talking to teachers or other adults, but also the words that are OK to use with their peers when there are no adults around. Be careful about language being taken literally (e.g. that boys’ voices do not literally ‘break’).

 

  1. Don’t over-protect. It is a sad fact that children with disabilities are vulnerable to abuse. Children on the spectrum may be even more vulnerable because of difficulties interpreting the motives of others, a desire to be accepted socially, uncertainty about what a real friendship involves and difficulties reporting past events. It is a parent’s natural instinct to protect their children. However, avoiding topics such as private body parts can teach the child that they are either unimportant or shameful and not to be spoken about. Be aware that over-protection from sexuality and relationship education leaves children vulnerable.

 

  1. Teach the difference between public and private. All children need to learn the difference between what is public and what is private, including places, body parts, conversations, behaviours and online information. Learning this difference helps children behave in appropriate ways and is a protective factor in abuse. However, be careful about hard and fast rules and remember to teach that rules can change over time and why. For example, it makes sense to teach that sex is a private topic that they can only discuss in the home, but what are they to do when all of their peers are talking about it in the yard in school or the canteen in college? Avoiding such conversations, or worse telling the teacher, will be even more isolating for them.

 

  1. Teach how to say ‘NO’. While compliance is highly valued in special education, it does little to support a person’s safety skills. Remember that if you teach someone to do everything that you tell them to do, you have taught them to do everything a bully or abuser tells them to do also. The first step to being able to protect yourself is to know your rights and to know that your body belongs to you, and that you have control over it and what you do with it. When someone says ‘No’ to an abuser firmly, it shows that they understand the rules of touching and sexual behaviour and, very importantly, they are able to report it.

 

  1. Don’t do anything for them that they can do independently. Often, people get so used to making decisions and doing things for people with special needs that they start to do so automatically. However, this inevitably leads to the person being less and less able to do things or make decisions for themselves. Instead, set up situations where they can experience success and constantly push slightly beyond these boundaries. Allow them to do daily tasks independently, even if it takes them longer to complete. Involve them in decisions about their lives. Give them meaningful choices throughout the day. Also, allow them a wide range of experiences from which to learn from (even if they find these new experiences uncomfortable at first and need extra support). If they have an IEP or person-centred plan, consider them being involved in the process.

 

  1. Help them develop friendships. If teenagers are to develop the skills needed to enter adult relationships, they will need practice and support getting there. However, people on the spectrum often need and enjoy spending time alone and may actively avoid social situations. Don’t be mistaken, this does not mean that they do not also need or want friendship in a way that is meaningful for them or that they do not experience intense loneliness. Teach them the social skills involved. Link them in with other similarly-minded peers. Find socialising events where there is a common focus, e.g. the cinema. The internet (if monitored very closely and accompanied by safety training in this area) can also be great for linking together like-minded people with obscure interests.

 

  1. Help them to understand themselves. Developing a healthy and realistic self-concept means understanding your own personal weaknesses as well as your strengths. Children on the spectrum have many fantastic qualities, including being honest, reliable and having a strong sense of social justice. They need to learn that they are valuable human beings with valuable contributions to make to this world. However, they also need to learn about their diagnosis, the challenges that come with this diagnosis, what they need to overcome these challenges, and how to go about getting them (e.g. being able to tell their teacher “I find it difficult to listen to you when that light is flickering, can we please turn it off?”). This does not have to be done in one big difficult conversation. Start talking about difference early. Read books about autism with them geared for their age and ability level. Research the Autism Self Advocacy Network. Introduce them (through books, TV or the internet) to role models who have a disability. One of the best things that you can do to develop your own understanding of autism is to read books by authors on the spectrum, they have a lot to teach us.

Davida Hartman is a Senior Educational and Child Psychologist, co-founder, and clinical director of The Children’s Clinic (which provides specialised multi-disciplinary services to children 0-18). She is author of a number of books published by Jessica Kingsley, which aim to support children and teenagers on the autism spectrum to reach their potential and live happy and fulfilled lives.  

 

Davida HartmanFor information on how to develop an individualised and best practice sexuality and relationship education programme for a child or teen on the autism spectrum, see: Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders: A Guide to Understanding, Preventing Issues, Supporting Sexuality and Responding to Inappropriate Behaviours and the accompanying The Growing Up Guide for Girls: What Girls on the Autism Spectrum Need to Know! and The Growing Up Book for Boys: What Boys on the Autism Spectrum Need to Know!

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