Puberty in girls with learning disabilities
What is puberty?
Everybody experiences puberty as part of growing up, and it can be a difficult time for young people and their families whether they have a learning disability or not.
There is no fixed age for puberty to start, however it usually takes place between the age of 8 and 13 years old.
Puberty is caused by changes in hormone levels. This typically leads to the following changes:
Your child’s body will increases in height and weight, bones will thicken, muscles will develop and their hips will widen.
This is usually the first physical sign of puberty and size varies from woman to woman.
Pubic and body hair
Hair will grow and thicken around their vagina, armpits and others parts of the body such as their legs.
Changes in your child’s hormones will make them sweat more which means that they may smell more and need to wash more often.
Changes in your child’s hormones may affect their skin which may lead to acne or an increase in spots.
Most girls start their periods between 11 and 13 years old but it can be younger than this. When your child gets their period blood will come out of their vagina. Periods happen every month and usually last for 4 to 7 days. You child’s back, tummy or head might hurt and they may feel more angry or sad than usual.
Masturbation is when people touch their genitals for pleasure. It is a healthy and normal part of development and does not cause emotional or physical harm if they are in the right place.
Your child may become more aware of the differences between men and women, and how they feel about other people.
Social and emotional development
Changes in your child’s hormones may impact on their emotions and their ability to emotionally regulate. Puberty can be a confusing time for young people, and is often a time when young people explore their identity and how they fit into social groups.
The impact of puberty for young people with learning disabilities
Puberty is a difficult time for all children. Children with learning disabilities may find it especially difficult as they may struggle to understand the changes that are happening, regulate their emotions and communicate with others how they are feeling. They may also find it difficult to understand what is appropriate and inappropriate.
They are likely to need lots of extra support and patience from the people around them to understand the changes that they are going through and to help them to learn new skills. They are also likely to need lots of support to understand what is socially acceptable in different situations and support to stay safe.
Puberty is also often a challenging and emotional time for parents too. Some parents may find it embarrassing or difficult to know how to talk about the changes their child is going through, and may have a lot of questions about how they should support their child through puberty. There may also be difficulties that arise due to an increase in hormones which affect the child’s ability to regulate their emotions and behaviour.
It may be tempting to avoid the topic and ignore the changes your child is going through, however this may lead to more problems later on. As difficult as it might be, it is best to acknowledge the changes your child will go through so that you can plan how you will support them.
Key messages for parents
- Your child will go through puberty. Puberty is inevitable, so assume that your child will show changes relating to their gender and sexuality.
- Start thinking about puberty and how you will manage the changes as early as you can.
- We all have different beliefs and expectation about puberty. Think about what your family’s beliefs and expectations are. Does this fit with your child’s needs and abilities?
- Take a matter of fact approach (be neutral). Your child may not pick up on social cues or learn from peers about appropriate behaviour. Therefore you and other adults will be their source of information.
- Establish rules around hygiene as early as possible.
- Introduce the concept of public and private (spaces, body parts, behaviour).
Use the correct words and phrase. Don’t use pet names or slang. Be consistent, brief and simple and repeat the information often. You should link with other environments, such as school, to ensure you are using the same words, phrases and boundaries.
Be clear and concrete with your communication. Don’t expect your child to pick up on euphemisms or indirect language. You could also use visual communication (signs, symbols, photographs) where appropriate.
The ‘private’ and ‘public’ concept
Understanding these concepts helps to support your child to behave in socially appropriate ways. These are abstract concepts so you will need to help your child to understand them. Public and private relates to actions, parts of the body as well as space. You can make these concepts real by using rules, boundaries, and modelling appropriate behaviour and language.
This can be described as being alone in a place where no one else can see or interrupt your child (for example their bedroom, a toilet at home, the shower or bath). You need to help the young person understand parts of the body that are ok to touch in private, and actions that are ok to do in private (for example touch self, masturbate, toilet, wash).
This is a place where anyone can go and where other people will be around (for example, a shop, a classroom). You need to help the young person understand parts of the body ok to touch in public, and actions that are ok to do in public (for example, eating, talking to friends and so on).
Set rules and boundaries
You should think about what rules you want to have in the home. For example, knocking on bedroom doors before entering, always wearing clothes in front of others, undressing in the bedroom, masturbation in the bedroom only, using the toilet with the door shut and so on. Be clear and consistent with these rules.
Think about your child’s personal care routine and whether you can develop any daily routines and rules about hygiene and personal care.
It is helpful of you model the rules and boundaries (for example, go to the toilet with the door shut and so on).
- When young people with Intellectual Disabilities and Autism hit puberty. A parents Q&A guide to health, sexuality and relationships. By Freddy Jackson Brown and Sarah Brown.
- Girls growing up on the Autism Spectrum: What parents and professionals should know about the pre-teen and teenage years. By Shana Nichols with Gina Marie Moravick and Samara Pulver Tetenbaum.
- What’s happening to Ellie? A book about puberty for girls and young women with Autism and related conditions. By Kate E. Reynolds.
- Things Ellie likes: A book about sexuality and masturbation for girls and young people with Autism and related conditions. By Kate E. Reynolds.
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Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.