Question
My 14-year-old son has Down syndrome. He is a happy and lovable child and gets on with everyone in the family. He has always been extremely affectionate and hugs everyone he meets. This has been something we have always loved about him. However, now that he is getting older, I am a little concerned about boundaries. He is well into puberty now and I am concerned that it is no longer appropriate for him to be hugging everyone. A couple of days he hugged a friend of his sisters, who was clearly uncomfortable with this, and I had to intervene to tell him to stop. I ended up shouting at him and he got upset. If I’m honest I think there was something a bit sexual about the hug, so it was inappropriate with the girl. I feel bad about what happened but I need to teach him now to manage his personal space as I don’t want him to get into trouble. What do you advise?
Answer
Adolescence for children with an intellectual disability can be particularly challenging. They develop physically and experience sexual feelings at the same age as other adolescents but can lack social and emotional maturity to manage these changes and feelings. In addition, as children become adolescents, new boundaries come into play – hugs and kisses that used to be appropriate are no longer so. Adolescents with an intellectual disability can find it hard to learn these new social rules when their hugs and affection are no longer acceptable. You are right to take the matter very seriously and to want to teach him appropriate boundaries. The important thing is to approach it is a positive, proactive way, rather than just reacting when incidents happen.
Sex education for children with Down syndrome
Sex education for adolescents with an intellectual disability needs to be simple and explicitly clear so they can understand. Using visual pictures and step-by-step information is crucial to getting the message across about changing bodies, and sexuality as well as safety and boundaries. There are some great books and online resources, such as the book Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality by Terri Couwenhoven. While sex education should be covered in your son's school, it is important you also educate your son at home. Getting consistent messages at home and school will be much more effective for your son. Do link in with his school to check what sex education they are providing and ask them for copies of the resources they are using so you can reinforce these at home.
Teaching personal boundaries
There are a number of useful strategies to teach your son about personal boundaries and consent around hugs . Sit down with him and explain that now that he is older there are only some people he can hug. Make a list of all the people in his life he can hug and write these people down on a list. This will include you, as his parents, and his family. Making the learning more effective by encouraging him to come up with the answers and make it visual by using pictures (for example, you can show him a picture of the postman and ask him if he should hug this person, and so on). You can also list the times when it is best to hug people (such as when saying hello) and alternative ways to greet people, such as shaking hands, waving or doing a high five. Once again, using visual pictures of these socials skills and demonstrating them is a good way to ensure he understands.
You can also use a story format to teach him about getting permission to hug. The school may be able to provide you with one or you can create your own with a script, such as the one below.
1. Sometimes I want to give someone a hug
2. I am older now so I have to ask someone before I give a hug
3. I can say "would you like a hug?"
4. If they say yes, I can give them a small hug with my gentle arms.
5. If they say no, I will not hug them
6. I will ask them if they would like to give me a high five or shake hands instead instead
7. If anyone says stop during a hug, I will always stop and step back
You can also rehearse key social situations with your son so he practises asking for permission and waiting for a yes. This is a good way to show him exactly what a good hug is so he knows how long to hug for and the correct distance etc. Rehearsal and role play is a fun way to learn all these skills, and this prevents the teaching from being a negative or critical experience. You can also take pictures of him practising giving a hug and use these as reminders of the best way to hug that you can put up on a chart for him.
Being explicit and clear, using simple stories, visual reminders and rehearsal is the best way to teach social skills to adolescents with intellectual disabilities.
If your son continues to have problems around understanding personal boundaries, seek support from disability services or the professional team attached to his school.
- John Sharry is founder of the Parents Plus Charity and an adjunct professor at the UCD School of Psychology. Along with Gráinne Hampson and Aoife O'Leary he is developing the Parents Plus Special Needs Programme. parentsplus.ie and solutiontalk.ie