How to discuss the topic of puberty with your special needs child

Puberty can be a difficult subject to discuss with our children, especially if they have special needs.

Parents and carers connected with Dream The Change CIC expressed an interest in the topic, so we invited an expert along to our June Parent Tea Session to a Q&A session on puberty and neurodiversity. 

The session was well attended and featured Sam Silver, the Founder, CEO, and Director of Action-attainment CIC, who addressed parents' questions on how they and their children's schools can collaborate to manage behavioural challenges faced by their children.

Sam founded Action-attainment CIC to tackle the gaps in service provision and understanding of neurodiverse children, who are frequently overlooked by both mainstream and specialist services. 

With over 20 years of experience, she has worked alongside parents, teachers, schools, Educational Psychologists, Speech and Language Therapists, and Occupational Therapists to raise awareness and support for children with hidden difficulties.

Sam is the parent of three adult children, each with their own unique SEN diagnosis, so has experience of the subject and how to talk to SEN’s children about it.

She combined her personal and professional insights to share ideas with parents.

For those interested in further resources on this topic, Sam provided a list of online materials, which we are publishing below.

One mother asked, “My son has been asking people around him to give a squeeze and is rubbing his ‘willy’ against the other person. I am worried about this. He is 10-years-old. He goes to a specialist school. I don’t know if the school is talking about sexual boundaries. We’re telling him to keep his hands to himself.”

Sam’s answer

“This is very personal and just talking about these things, may not be enough. Your son’s wish to be ‘squeezed’ may be a sensory seeking, calming behaviour based on a need for deep physical pressure – a sensory trained Occupational Therapist would help identify that with you.

“In respect of his ‘willy rubbing’ that could be sexual and also be part of self soothing behaviour, but crosses into his understanding of personal boundaries. There are some social stories that are very visual with a big red cross against what is not acceptable. You could show him these pictures and explain what is unacceptable behaviour. 

“You could discuss it with his school to check you are using the same strategies as those they are using.

“This is about boundaries. And understanding ‘my body’ and ‘somebody else’s body’ and what is appropriate. There is a booklet (links below to material) which is about talking together about growing up. It talks about what is appropriate and isn’t appropriate regarding touching.

“It’s for people with learning disabilities and explains pictorially what is OK and what keeping safe looks like. It may be because of learning difficulties it needs to be taught at school, at home and shared language for problem solving.

There’s another resource for Parents Culture reframed about sexuality and people keeping safe. It is lots of different modules. You can use the social stories to show that this is not acceptable.

Sam’s suggestion.

“We have to be brave and we have to talk to the school and try to share their knowledge and our experience to come up with strategies that we can use at home and at school. We need to try to deal with these things as a learning opportunity although it is uncomfortable because of the sexual aspect of this.

“It’s almost like healthy eating, we wouldn’t have a problem saying ‘we need to eat our vegetables’ or ‘we mustn’t eat too much sugar.’ It’s about trying to be brave and have these conversations as if we were talking about some other aspect of healthy living and understanding what personal boundaries are and where ‘touch is appropriate’ or ‘inappropriate.’

“There is going to be natural curiosity about parts of the body. Depending on how comfortable parents feel about looking at pictures or sharing information at an age appropriate level, there might be something about exploring as a parent with the school first what the resources might be, and what the shared language might be, so that people aren’t confusing the child with different vocabulary.

“Maybe the best idea is of working together and reinforcing the learning. Deciding what can be dealt with at home and what should be dealt with in school. But this has really got to be about understanding personal boundaries and what is ‘private’ and what is ‘public’. 

“Maybe we should be having language at home about ‘this is public’ and ‘this is private’. It could be about things that aren’t sexual, it could start with boundaries like ‘this is mine’ and ‘this is yours’. For example, about a toy you can say ‘this is my toy’. 

“The toy owner could start using simplified language to say, ‘This is mine. You must ask me to use it. I don’t have to share’

‘You might try to build from this to conversation about ‘private personal’ space, moving to ‘what’s private/communal around the body’ as well. Maybe using boundaries around daily living, and everyone’s private space, – bath time, going to the toilet, the bedroom, if that’s appropriate for the child and matches families’ lived experience.

“Among the materials below there may be visuals to support you having the conversation, so that it is not all words which can be overwhelming for the child. It could be a picture, that is age appropriate, that makes sense. 

“I’d recommend the book “Talking together about growing up”. The drawings are very cartoon. It’s an age-appropriate workbook for children with learning disabilities by the Family Planning Association.

“Parents may also have to accept that private behaviour might happen in a young person’s bedroom with the door shut, and have tissues or toilet roll available so that being clean is a possibility. 

“Accepting that private behaviour may happen and if it is in the privacy of one’s own room with no one else is being involved, then that is OK. Be calm and give them the boundaries of ‘no’, and say, ‘go to your bedroom’, then that learning should happen and it should embed.

Sam kindly shared lots of resources to help our families navigate this delicate topic, here is the list:

Watch again talk by Mark Brown, SN advisor/specialist:

https://www.autismwellbeing.org.uk/resources   (see section on Personal Care)

Talking together…about growing up. Workbook about puberty for children with LDs:

Many young people have problems or are embarrassed when trying to talk about 'sexual health'. And also don't know where to find information which is factual and helpful. Youth Out Loud, have produced a video which has real people and medical staff offering thoughts, advice and reliable sources of good info especially young people who are trying to discover what is right for them when it comes to sex & sexual health.