Daslne
Common Problems and Strategies –
Growing Up and Sex
(Compiled July 2012)
Changing Bodies and Changing Minds
The transitions from childhood to adolescence and then to adulthood bring with them physical and emotional changes which cansometimes be difficult to manage. For children with autism spectrum disorder (ASD), and their families,this can be a particularly daunting adventure.
The changing body is usually the first sign that puberty is beginning and any child will need some help in understanding what is happening to them and why. For children with ASD,puberty and the associated changes can be particularly difficult, but with support and plenty of preparation these changes can be much more manageable.
Sexual development and curiosity is a normal developmental process and most parents, whether their child has ASD or not, will worry about talking to their child about sex and relationships. The process of building social relationships by making friends and beginning intimate relationships is a key developmental stage for all young adults. Many young people with ASD find the entering and ending of a relationship very difficult. They may not pick up incidental information around puberty and sex or pick up misleading information due to the amount of sexual images in adverts, on the television and the internet. It is also important to remember that sex is not compulsory which can come as a relief to both parents and young people.
The physical and emotional changes that occur in adolescence are part of the process of sexual maturity. Quite often, the psychological and social maturity of a young person with ASD does not keep pace with their physical maturity (irrespective of ability). From the young person’s point of view, going through puberty can lead us to begin to feel things we haven’t felt before – like seeing a boy or girl you like and getting those butterflies in your tummy. If we don’t understand these feelings and why they are happening, then we are likely to feel pretty scared. If your body doeshave funny feelings, you may want to avoid them at all costs. Alternatively, young people can misinterpret body signals during puberty so that things that previously caused excitement or anxiety might trigger sexual feelings.
For children with ASD, knowing how to behave in a socially appropriateway with these new feelings probably will not come instinctively, and parents and carers need to support a young person through this. It isnever too early or too late to begin to talk to your child about changes in their feelings, regardless of their ability.
Just as with the changing body, with plenty of preparation and time young people can be supported to better understand the changes happening around them and tolearn and develop socially appropriate behaviours.
What do parents say about talking about growing up?
“I really just don’t know where to start – I know she is going to feel so scared and her black and white thinking makes my worry about what I should and shouldn’t say. She has already said she can’t wait to be a lady, so she can have a baby.”
“My daughter refuses to talk about relationships – she is terrified of it and thinks it’s disgusting. It is a no-go topic”
“I wonder when my son will find a meaningful relationship with someone; that is my worry at the moment”
Supporting children to grow – where do we start?
- Public, private, personal space Start as early as possible to help the young person understand what is appropriate behaviour and introducing boundaries. Toilet training can be a good place to startteaching boundaries and labelling body parts. Try not to encourage behaviour which could later be seen as sexually inappropriate e.g. stroking hair.
- Teach the Rulesand give information Structure is important for people with ASD. Not knowing the rules for social situations can make anyone anxious. Consistency is important but social rules are flexible and can change with age and place (e.g. it was fine to walk around the house naked at a young age but this obviously changes as we get older); the changes in social rules make teaching them more difficult. Helping young people to understand the rules will likely require honesty and, at times, bluntness or very clear language.
Social stories can be a particularly good strategy, and reading them with your child can ease anxieties and allow an opportunity for questions to be asked. Here is a link to online social stories – they tend to use American terms so can be adjusted to language that you use:
Another useful strategy is the 5 point scale which can be applied to different scenarios to help young people understand when something is a definite no (5 = completely inappropriate or against the law) to more grey areas such as something which may be appropriate to do in private but not in public. Here is a link to 5 point scales:
- Modelling Behaviour School can be extremely helpful in supporting children and young people growing up. School is where we learn many of our behaviours, through modelling (that is, copying others). A young person with ASD may not relate to other children as often,and so miss out on some of these learning opportunities, which then may affect their social, emotional and communication skill development. Most schools provide education on sex and relationships; for a young person with ASD, there may be provision for some extra support in this area. In social skills training, there may be teaching around appropriate and inappropriate social behaviours, i.e. it is okay to hug our mum when saying ‘hello’ but not okay to hug strangers. Discuss with your child’s school what they are teaching and if there are any materials you can take away, so you can reinforce appropriate behaviours at home and out in public.
Social Groups are another way to introduce modelling of appropriate behaviours and allow young people to meet others with similar difficulties and perhaps form friendships. There are a number of social groups for children and young people with ASD and with special needs; a comprehensive list can be found e.g. through the Family Information Service in Newcastle either online www.newcastlefis.org.uk/or by calling 0191 277 4133. The National Autistic Society runs Youth Groups in term-time (call 0191 229 6020) and the Edward Lloyd Trust runs a Saturday Club for children aged 8 - 14 (call 0191 213 1608).
Resources for Parents
- Inspiration for this topic sheet came from Lynne Moxon (Consultant Psychologist) who works with ESPA (Education and Services for People with Autism) and has developed programmes of teaching on sex, relationships and puberty. More information can be found on the website with a link to a very informative video showing a talk she gave on Sex & Puberty with Children with Autism.
- The Autism Resource Centre in Newcastle, run by the NAS, has some resources on growing up and books which young people and parents can borrow and read. Phone 0191 229 6020.
- There is a manual written by Kate Moss & Robbie Blaha entitled ‘Introduction to Sexuality Education for Individuals Who Are Deaf-Blind and Significantly Developmentally Delayed’ and many of the needs described are similar to those of some children with ASD. They provide some really helpful strategies and it is freely available online at