What will you be doing on the 14th February?  Will Cupid be visiting you? Will you send someone a Valentine’s card, get given red roses, or go out for a romantic meal?

 With all things love in the air around February, I thought I would turn my attention to something that has been on my mind a lot recently…..  sex!   Well, before you get too shocked, I mean sex education really.  I’ve been reflecting about the importance of teaching puberty and sex education to young people with learning difficulties. I guess it’s because I am living in a house full of testosterone filled teenagers (for some years now) and inevitably I have seen some of my children through crushes, budding romances and even walking down the aisle (for one of them).  It’s the season in my life when I am steering young people through all the drama that comes with developing and maturing, and all its subsequent pitfalls.  

Do you remember it?  I remember it well?  I can still to this day remember having a crush on the man that came to install central heating in our house. I was 12 and I thought he was “smashing”. I remember lying on my bed with the door open and mooning over him.  Goodness knows what the poor man thought?  He occupied my thoughts for weeks (well after he had moved onto another job).  The thing is I look back on adolescence now with an entirely different perspective.  Then it was confusing trying to make sense of all the changes I was undergoing.  

Every young man and woman has to navigate a minefield of physical changes to their body and make sense of erratic, hormonal mood swings and intense emotions.  Imagine therefore, how much more confusing this process is if you have a learning disability? Physically, you start to grow hair under your arms and in your groin, your chest grows, you get tummy cramps that hurt and your start bleeding. Or, you start to have erections, wet dreams or an urge to masturbate that seems uncontrollable, but you’re told not to?  Emotionally, you have intense emotions that can be very unsettling. Young people with disabilities go through the same puberty process as young people without disabilities, yet are often not prepared to do so.  Young people with a learning disability have the same range of sexual thoughts, attitudes, feelings, desires and fantasies as young people without disabilities, yet often they are given little information about the process and little preparation for it.  Education about sex and sexuality is important for all children and teenagers.

I remember my Mum telling me that when she started her periods that her mother told her “now, don’t let a boy do anything to you that you don’t like”.  I often smile when I think of this!   I mean talk about hopeless advice. What if you like “it”?  We seem to have evolved a lot as a society.  For some reason though, we as a society have neglected this area when it comes to learning disabled teenagers.  I find myself asking why?  Does it make us uncomfortable to think of someone with an intellectual disability as having sexuality?  When people with a learning disability express their sexuality, it is often seen as a ‘problem’. In fact, sex education is often positively discouraged by some parents and carers. Let’s be honest it can be hard to think of your child as ever having any sexuality at all if they are still very much a child in terms of their cognitive ability. Some common reasons are given for not educating young people with a learning disability about sexuality:

• There is a misconception that young people with an intellectual disability don’t need sex education because they will always remain ‘child-like’ and therefore non-sexual.
• Some parents fear a young person with sexual knowledge will be more likely to experiment with sex and have an unplanned pregnancy, contract an STI or ‘get into trouble’ in some way. The underlying hope is that a young person who doesn’t know about sex will have no desire to express their sexuality. In fact, the reverse is true.
• Some parents find it difficult to discuss sex, and this can be more difficult if the young person has a disability.
• The parents may have tried to talk to their child about sex, but weren’t able to express the information in a way the young person could understand. Failed attempts may cause the parents to give up.

But, did you know that people with a learning disability experience all forms of abuse, including sexual abuse, at higher rates than the rest of the population? Without adequate sex education and an understanding of protective behaviours, they may also be at increased risk of sexually transmitted infections and unplanned pregnancy. Some of the reasons for this increased risk include:

1. Lack of knowledge about sexual issues
2. Misinformation about sex from peers, rather than books or other reliable sources
3. Lack of intellectual ability to understand the changes happening to their bodies
4. Misplaced trust in others due to increased dependence on others for assistance
5. A tendency to be overly compliant, particularly those children requiring a high level of support
6. Lack of assertiveness training or skills
7. An overprotected lifestyle and limited social contact.

So, one of the most important things you can do to protect your child is educate them in these areas. Most young people with an intellectual disability begin puberty at the same age as other young people and experience the same physical and hormonal changes, but it can be hard to explain the physical, emotional and social aspects of sex to a young person with an intellectual disability.

Common learning difficulties include:

• Learning at a slower rate
• Communication issues
• Limited literacy skills
• Difficulties with abstract thinking and comprehension
• Trouble relating the ideas to their own life experience

Sex education is an on-going process, not a single lecture. Young people should be given basic information first and then other topics should be introduced as they mature. So where do you begin?  There are a couple of steps that pre-curse more formal sex education:  

1. Firstly, foster a sense of self-esteem in your child. This will be important for several reasons. Like every other person on the planet who enters the romantic realm they may well be turned down at some point and this will be less of a blow if they feel good about themselves. Also, they are less likely to bow to pressure if they have a healthy self-esteem.  
2. Another thing you can introduce earlier on is the proper names for body parts, including genitals. A child is never too young to learn these.
3. Teach them that it is acceptable to say “no”.  All too often we teach children with special needs to conform. We don’t accept it when they say “no” and this can be dangerous later on.  We expect them to be compliant in all things (that’s a debate for another day), but foster in them a sense of autonomy.  Davida Hartman says in her book “remember that if you teach a child 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”.
4. Give your child choices and opportunities to be independent. Don’t do anything for them that they can do independently. Often, people get so used to making decisions and doing things for a child with special needs that they start to do so automatically. However, this inevitably leads to the child being less and less able to do things or make decisions for themselves. Instead, set up situations where the child 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. 
5. As they develop you can also teach them the concept of ‘public’ and ‘private’ (this is especially important as they physically develop).
6. Start with explaining about their body – help them to understand that they are a boy or a girl. Point out other boys/girls to them when you are out and about. You can use the television, comics, books and games to do this.  Give them information about the anatomy of boys/girls. You can use dolls to do this.

Look out for times when the young person begins to express an interest or curiosity in sex – for example, if they see actors kissing in a movie on television and begin to ask questions.  This is when you should begin the more formal aspect of sex education.  The most important factor to remember about sex education for young people with learning difficulties is that it should be clear and concrete.  You need to use pictures/diagrams/dolls and check for their understanding. Make sure you don’t use language that can be taken literally (e.g. that boys’ voices do not literally ‘break’).

Ideally, sex education should include information about:

• Building the social skills to develop and maintain relationships
• Different types of relationships
• Coping with relationship difficulties or rejection
• Personal safety – protective behaviours
• Sex and relationships, including marriage and parenting
• The changes of puberty, both physical and emotional
• Menstruation
• The physical mechanics of sex, including reproduction
• Appropriate and inappropriate expressions of sexuality
• Sexually transmissible infections
• Safer sex
• Contraception
• Masturbation
• Same-sex attraction

The important thing to remember is that you need to use simple, clear language at their level, that cannot be misinterpreted.  Remember too, to use demonstrations where appropriate; for example, you can show a girl how to put remove the plastic backing off of a sanitary towel and how to stick it into a pair of knickers. You could also demonstrate with fake blood what a used towel will look like (as long as you are sensitive) and then how to dispose of it. It sounds a bit “way out there”, but you cannot underestimate how much you need to inform the young person. It is better to assume they don’t have enough knowledge rather than the other way round.

I don’t know about you, but I find the list above daunting and a bit overwhelming, but remember you should share this information one piece at a time. The good news is that there are some fantastic resources out there (see below). You can use social stories, anatomical dolls and books specially designed for this audience. Every person is different so what is useful for one person may not be right for another.

If you would like a book to use with your child, then this is a useful one:  “Talking Together about growing up” by Lorna Scott and Lesley Kerr-Edwards. http://www.fpa.org.uk/product/talking-together-about-growing

This one is good too, “Talking together about sex and relationships”:

http://www.fpa.org.uk/product/talking-together-about-sex-and-relationships

A great resource put together by NHS Leeds.

http://www.rsehub.org.uk/media/16503/54-Puberty-Sexuality-for-Children-and-Young-People-with-a-learning-disability.pdf

There is a fantastic book called “Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorder by Davida Hartman. For an overview of the book and her top ten tips for this subject check out:

http://www.jkp.com/jkpblog/2014/04/10-tips-to-support-children-with-autism-through-puberty-adolescence-and-beyond/

A final word……if you need any advice or help in this area, than just contact our team. It’s one of the many things that speech and language therapists do.  Good luck!!

Written by Alison Mann on behalf of Integrated Treatment Services