1. Too embarrassing to talk about?
Jaycee Pownall, Andrew Jahoda, Richard Hastings & Linda Kerr

2. A big thank you to all the mothers
who took part!

3. Why is the family view so important?
Not as many people for the young person to talk to.
The young people tend to spend more time with their families at a stage in life when others are beginning to spread their wings.
Past research has found that young people with learning disabilities speak to their parents even less about these topics than other young people.
These young people did have questions they wanted answering and did want to talk to their parents.

4. Today’s talk.
An outline of our study findings about parents views of dealing with the developing sexuality of their son or daughter.
There were two parts to our study.
This talk will present an outline of some key findings.

5. What we set out to do.
To find out what mothers’ experience is of supporting the developing sexuality of their son or daughter.
This includes finding out mothers’ attitudes as well as what they do to support their children’s developing sexuality.
We also wanted to find out what the particular challenges of supporting their son or daughter with a learning disability?

6. What did we do? We had two parts to our study.
Firstly we interviewed eight mothers to find out their experiences. We spoke to mothers who had a son or daughter with a learning disability and another similarly aged sibling of the same gender, and asked them to compare their experience with their two children.
Secondly, we surveyed a larger number of mums (sixty) of young people with and without learning disabilities.

7. Interview study.
The young people the mothers were talking about were aged between 16 and 21.
All the young people with learning disabilities were able to talk to their mothers about sexual matters.

8. Views of sex education.

9. Importance of sex education.
Both sets of mothers attached similar importance to dealing with the sexual development of their children.
Mothers of children with learning disabilities said they had fewer informal sources of support, from friends and family, to help them with this.
Mothers of children with learning disabilities reported having more professional support, and finding these helpful. They also thought that the school had a bigger part to play.
One of the reasons for mothers attaching more importance to the school was that just like the mothers we interviewed, they recognised that their children didn’t have the same chance to learn about these matters from friends or other social groups they were involved in.

10. Independence and control – a balance.
Mothers recognised that part of growing up and developing relationships is to want more independence from your family.
They were caught though, between two competing roles as parents:
‘Stepping back’ to help prepare their children for adulthood. &
A continuing responsibility for the safety and well-being of their children.
This tension was more apparent with the young people with learning disabilities.
Talked in detail

11. What makes the competing roles so difficult?
More difficult when the young person remains dependent, both practically and emotionally. The mothers had a continuing role in supporting their young person to deal with life’s challenges.
For example, the mothers reported that the young people with disabilities, particularly the women, had more difficulty adjusting to the physical changes associated with puberty.

12. Greater vulnerability – not out of sight out of mind.
Gender an issue - mothers were also concerned about their daughters’ vulnerability to abuse and the risk of pregnancy.
Paradoxically the mothers often expressed more concern for the siblings without disabilities because they didn’t know what they were up to!
However, when they did have to acknowledge and deal with their child’s emerging sexuality the didn’t find it easy.

13. What to do about it?

14. Coping with their children’s emerging sexuality.
All mothers talked about how sexuality and relationships were becoming relevant for their children.
However, the extent to which they acted on this varied greatly between families.
Not yet! Maybe later! Start with friends!
But there was a recognition of young people’s emerging sexuality. Wait and see versus a sense of panic about what was happening. Way in which saw their offspring’s sexuality clearly had an impact on how they spoke to their offspring.

15. Who starts the talking?

16. Who starts the talking?
Mothers said they were not usually the ones who started talking about sex with any of their children.
Children without disabilities were more likely to strike up a conversation about sexual matters.
In both studies.

17. Who initiates discussions about sexual matters?
Equal 5
Mother 7
Mother 18
Child 7
Equal 15
Child 5
Learning Disability
No Disability

18. A shared understanding for talk?
Mothers knew that their children were less likely to have sexual experience or even more intimate relationships as boyfriend or girlfriend than their siblings. Less shared understanding as a basis for talk.
Thought son or daughter with learning disability would be embarrassed.
So placed particular emphasis on schools – although not always satisfied with what schools offered. Recognised that one off teaching not enough for it to ‘sink in’.
All the above points on top of concerns about understanding etc.

19. When the talking starts.

20. Dealing with their sexuality.
There were also a number of differences in how the mothers of young people with learning disabilities dealt with their son or daughter’s sexuality:
Didn’t talk to them until they were older.
Talked about fewer sexual topics with them.
Talked in less detail to them.

21. Number of Topics Discussed

22. A different focus for the conversations.
Reported that conversations with their sons and daughters with intellectual disabilities focussed on vulnerability to abuse and appropriate / inappropriate behaviour.
In contrast conversations with siblings were about about how to be safe in a sexual relationship: contraception and sexually transmitted diseases.
Talked less about reproduction and sexual relationships with young people with learning disabilities.

23. Concluding thoughts.

24. Sexuality marks a new stage in life.
Dealing with young people’s sexual development is usually difficult and emotive for parents, whether or not the young person has an intellectual disability.
Acknowledging a son or daughter’s sexuality marks a big change in a parent-child relationship
A time when families acknowledge the adult status of their offspring. Dealing with one’s son or daughter’s sexuality may be tied into wider concerns about how they are going to cope with adult life.
Consistent findings across the two studies. Amongst the detail there are some important points to think about. Symbolic.

25. Understandable delay may lead to problems.
If you think your son or daughter is going to struggle it’s not surprising that many parents’ tendency was to hold off or delay talking about sexual matters. A contrast with siblings.
The risk is that it then becomes more of a crisis when people begin to express their sexuality.
Knowing less makes people more vulnerable.
Not just about what young people don’t know but also the misconceptions that can develop – a sense of shame.

26. Conclusions - it is harder.
Parents usually deal with this topic in a reactive mode – this isn’t necessarily going to fit with these young people’s style of interaction.
Not just about parents knowing how but feeling can - overcoming emotional barriers.
May not make sense to families when they are so aware that their son or daughter have few friends, quite apart from a chance to make intimate relationships.

27. Ways forward?
If it is just too embarrassing for their son or daughter to talk to you then maybe someone else could help. Someone at school, an older sibling or another family member?

28. Mutual support.
Schools and other professionals’ efforts appreciated, but perhaps need to work in a more collaborative fashion – to understand that the young people may struggle to join up information themselves.
Outreach support for young women in particular, and GPs and other professionals being willing to routinely address sexual matters.
Not just about sex also about relationships and friendships – the building blocks of intimate relationships. That’s not just the job of families, there’s also a need for professionals, schools and communities to play an active part.

29. A more joined up approach…
‘Intelligence is obtained from one’s neighbour like fire.’ 28