– Daytime wetting, soiling, bedwetting and constipation
– Creating routines and visual supports
– Liaison with continence services

– Support with washing, dressing, and hygiene
– Building routines and independence step-by-step

– Helping families explain body changes, privacy, consent
– Understanding safe and respectful relationships

– Eating well, physical activity, and sleep routines
– Support for sensory-based eating or emotional wellbeing

We help children and young people access GPs, hospitals, and other health services by:
– Preparing for appointments using visuals or social stories
– Attending appointments to support understanding and reduce anxiety
– Promoting use of Health Passports and communication profiles
– Advocating for reasonable adjustments (longer or quieter appointments, sensory-friendly spaces, flexible communication)

-Support around health conditions related to a young person’s Learning Disability e.g. epilepsy, communicating pain and discomfort

-Desensitisation around medical procedures, support young people to have blood tests

-Support young people to have access to primary and acute healthcare services, ensuring reasonable adjustments and care that is centred around the young person’s individual needs and choices

When children or young people with learning disabilities experience physical health conditions that are left untreated, they may display behaviours of distress towards themselves or others. When a child or young person is not always able to verbally communicate their symptoms of physical discomfort, these behaviours can be an expression of the impact.

Children and young people who have learning disabilities have a higher prevalence of physical health needs, and often have more difficulties expressing them. Recognising the symptoms of physical health can prevent pain, discomfort, and distressed behaviour. If you think your young person is unwell, or has a physical health need, it is important that you discuss this with your GP or other health professionals who are involved in their care.

Below is a list of some common health needs and the symptoms. We have also listed a few of the websites you can look at to reduce the impact of physical health on the child or young person.

Physical health

Thyroid condition

Epilepsy

Eczema

Diabetes

Acid Reflux

People with a learning disability often have poorer physical and mental health than other people

• An annual health check can improve young people’s health by spotting problems earlier
• Starting annual health checks for young people from the age of 14 years to help support the young person to get used to going to the GP
• Also to support the practice to get to know the young person and their needs
• Ensures the young person is on the learning disability register in preparation for transition to adulthood

Links / signposting:

• Learning disabilities – Annual health checks – NHS
• Why annual health checks are so important for people with a learning disability | Mencap
• Annual Health Checks – Challenging Behaviour Foundation
• https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/health-check-toolkit.aspx
• Annual health checks
• Learning Disability annual health check for ages 14 and over: information for families and carers

Helping children and young people with learning disabilities to access hospitals and health services.

For our young people with learning disabilities we know that going to the doctor, dentist, or hospital can sometimes feel overwhelming for the young person, and for the family. Some children find health settings stressful and may not always get the care they need without extra support.

• Prepare your child for appointments using social stories, visuals, and communication passports
• Every child is different — and under the law, reasonable adjustments must be made to meet their individual needs
• Advocate for reasonable adjustments your child is legally entitled to. This might include:

1. Longer or quieter appointments
2. Sensory-friendly environment / spaces
3. Flexible communication (e.g. Makaton, visual aids, objects of reference)

Here are some resources that might help:

Widget health have some great free resources for a range of medical appointments and procedures including Hospital and A&E, Blood tests, operations, visiting the dentist and opticians.

Widgit Health – Patient Easy Read Symbol Sheets

Hospital and health information (Easy Read) | Great Ormond Street Hospital

Health passport

Pain can be difficult to identify in children with learning disabilities. It is a subjective, personal experience. The gold standard for describing and

assessing pain is self-reporting.  Often, this is not possible for children who have severe or profound learning disabilities. Identifying pain is made more difficult by the fact that differentiating between internal states can

be difficult for less able children.

Problems with pain identification are particularly concerning because children with learning disabilities have higher rates of health problems

associated with pain and discomfort. This increased risk of potential health problems demonstrates how important it is that everyone can identify

pain and discomfort in children with learning disabilities.

Untreated pain may also be associated with increased risk of developing behaviours of distress and sleep difficulties.

Here is some useful resources and tools:

• Bloods being taken
• Behaviour checklist 
• Pain guide
• Telling an adult about pain
• Widget health pain chart
• Hydration 

Puberty and sexual development are normal processes for all young people, usually between the ages of 10-15 years. Many young people go through puberty without any major difficulties. During puberty, the body goes through a lot of external and internal changes. This is also a time when many young people are seeking to develop their own identity and sense of self. Noticing hairs starting to grow, bleeding, or developing spots, with little understanding about why it is happening can be very scary. Also trying to make sense of your feelings, hormone changes and moods is very difficult, particularly if it is hard to articulate your feelings. Sexuality can cause a lot of anxieties for young people, families, and professionals. Just because a person has a learning disability does not mean that they won’t develop the same sexual feelings as other people.

Sex education

Most people learn about sexual development through playground talk, media, and formal sex education. For young people who have a learning disability, they quite often do not get access to such mediums. It is not surprising that sometimes young people might start touching themselves or other’s sexual parts as they become curious about bodily changes. This does not automatically lead to inappropriate sexualised behaviour. It is usually about curiosity and a lack of education. For some people the behaviours do turn into rituals, but usually any inappropriate behaviour can be shaped.

Most sexual behaviours are normal but can become an issue when they happen in public or in an inappropriate context.

Helpful responses

Saying sexual words – You may wish to provide more explanation about what the words mean, and appropriate times for the young person to use them. Try not to give a response to the words, and when the young person realises they are no longer getting a response they may use it less often.

Touching/rubbing own private parts – Say to the young person “If you want to touch yourself, do it in your bedroom or bathroom”. Sometimes it may be more appropriate to distract them (e.g. if you are in the supermarket).

Touching others private parts – Gently remove hand, avoiding eye-contact, then distract them. When the situation is calm explain the situation (e.g. “It’s not okay to touch women’s breasts it will make them upset”).

What you can do as a parent/carer

• Talk through any concerns with teachers, paediatricians or professionals involved.
• Schools usually have good PSHE programmes, so if the teacher is aware there is an issue, discussion and topics can be raised.
• For young people with learning disabilities, individual tailored learning can be helpful to suit individual needs.
• Although it is difficult and sometimes embarrassing, try not to become angry as this may make the person feel ashamed.
• Work on one thing at a time and keep any messages clear and consistent.
• Keep your approach low-key with low arousal.

In this video we cover:

• Developing an awareness of puberty-related issues in young people with a Learning Disability and/or ASD.
• Some strategies to help you feel more confident to support young people to understand puberty and/or their sexuality.
• Proactive approaches in order to help keep young people safe.

Watch the video

Links and resources mentioned in this video:

Puberty and Sexuality (Children’s Learning Disability Team, Leeds)

The Family Planning Association

All About Us (Family Planning Association)

Talking together about growing up (Family Planning Association)

The Body Sense website

Relationships and Sex educational DVDs

I Change my Pad: Periods – A Practical Guide

When to consider asking for more specialist help

CONSIDER SEEKING HELP:

• If you are unable to cope with your child’s puberty or sexual behaviour.
• If your child is at risk from their sexual behaviour.
• If your child’s sexual behaviour is affecting their quality of life.

Please talk to your Paediatrician, Social Worker, or School for further info and support and about local resources.

The national autistic society have some great resources and information for parents/ carers

Sex education – a guide for parents

Puberty & Sexuality for Children with Learning Disabilities

Down Syndrome Scotland resources:

LETS TALK ABOUT PUBERTY_WEB.pdf

LETS TALK ABOUT PERIODS_WEB (2023)

Microsoft Word – Talk the Talk – Puberty SRE resources.docx

Visual Aid for Managing Periods – Changing My Pad

Many children and young people with learning disabilities experience problems with toileting. This can include a delay in toilet-training, a reluctance or refusal to use the toilet, or a reluctance to pass urine or faeces at all. There are many ideas about why this might be, although there is little research evidence to back them up. Here are some possible reasons for toilet-training issues:
LACK OF UNDERSTANDING – Children may not understand that urine or faeces are ‘waste’ material, and may believe that they are losing part of their body. It is hard for many children with learning disabilities to understand that food becomes poo!
GASTRO-INTESTINAL ISSUES – Some studies suggest that children with Learning disabilities / autism are more likely to have chronic gastro-intestinal problems. Problems such as constipation can make going to the toilet painful, so the child avoids this, which then makes the constipation worse – the child is stuck in a negative cycle.

NEED FOR CONTROL/ROUTINE -Children with Learning disabilities / autism need the world to be predictable, and bowel movements can feel scarily out of their control.
COMMUNICATION PROBLEMS – The child may not be able to let you know when they need to go to toilet, or understand your prompts/attempts to teach them. This can lead to frustration for the child and parent/carers.
MOTOR PROBLEMS – Children who experience some form of delay in the development of their motor skills may not have full control over their bowels and/or bladder. Some children with learning disabilities may never achieve full bowel and bladder control.

SENSORY ISSUES – Many children with learning disabilities / autism experience significant sensory sensitivities & struggle to manage the sensory input that they receive. This may include a dislike of the noise made by toilets, the sensation of passing urine/faeces, a cold toilet seat, or a preoccupation with water in the toilet.

How can I help my child to learn to use the toilet?

Ensure the child is ready for toilet training. Some signs of bladder/bowel control are:

• Urinating large amounts at once.
• Having regular, well-formed bowel movements at predictable times.
• Having “dry” periods of around two hours.
• Able to follow simple instructions like “go and get the cup”.
• Indicating that they dislike the feeling of a wet/dirty nappy or pad.

Once you are sure that the child is ready for toilet training, you can help in several ways:

• Record when and where the child passes faeces or urine before you begin. Pay attention to the time of day they go, the reaction of the child (did they let you know by crying or going to a particular place?), and how you responded.
• Ensure any constipation is treated. If left un-treated, passing faeces can be painful and might cause the child to withhold going.
• As a family, it is important to pick the right time. You need to allow toilet training to take priority, for a consistent approach to be implemented and effort levels to be maintained.
• Accept that it is likely to be stressful for a time.
• Ensure their diet includes plenty of fibre, unless you are told otherwise by your child’s doctor or dietician.

Hints and tips for successful toilet training

 ENFORCING BOWEL CONTROL IS NOT HELPFUL

Although it’s important to have clear boundaries and routines to support children to understand what is expected of them, it’s essential to understand that enforcing bowel control could exacerbate existing problems. Never use punishment when toilet-training. Making toileting a scary or unpleasant experience for children will not help them to learn, and may make them refuse to go at all (i.e. encourage withholding).

Do not react negatively to ‘accidents’. It can be very frustrating for parents, but showing your stress or annoyance can inadvertently teach children that you do not want them to pass urine or faeces They may not understand that you are angry about when or where they have done it, rather than what they have done.

 USE REWARDS

Children with learning disabiliies / autism are often not intrinsically socially motivated (e.g. by what other people do), so you may need to motivate them in other ways. You may need to continue to reward the child for some time after successful toilet training, until the behaviour has become part of their routine/habit.

MAKE IT FUN

Make the bathroom a relaxing place to spend time in. Be aware of things that would attract the child (e.g. a coloured toilet seat, stickers of their favourite cartoon characters, a soft bath-mat). Equally, be aware of things that would frighten/put-off the child (e.g. the feeling of a particular toilet seat, bright lights).

Don’t tell your child to ‘push’ because this can lead to tensing and less likelihood of a successful bowel movement. Instead, encourage them to relax. You may find that your child is more relaxed after a warm bath.

Blowing bubbles can both entertain your child and encourage bowel movements by recreating a slight pushing motion.

You may decide to encourage the child to spend time in the bathroom playing with toys or water in the sink. However, be wary that, whilst this makes it easier to put/encourage the child onto the toilet by reducing anxiety, it can also confuse children as to the purpose of the bathroom/toilet.

Social stories and visuals

Social stories can be a good way to help children with learning disabilities / autism to understand what is expected of them. You can create stories (with pictures) to show the whole bathroom/toilet routine (e.g. feel I need to wee, go to the bathroom, take trousers down, sit on toilet etc).

You can create stories to explain that going to the toilet is okay, and that poo and wee are meant to go into the toilet. For more able or older children, you may be able to explain that it is important to get rid of waste from the body.

You may need to show your child what to do! This can seem embarrassing, but the child will probably be unaware that there is anything to feel embarrassed about, and may learn more from you ‘modelling’ behaviour than from a book. Alternatively, you could ‘model’ toileting behaviour using toys.

SCHEDULED SITTING

This is one technique suggested for use with children with learning disabilities / autism where toileting has become very stuck. It should be used in conjunction with the other advice in this section. 

Identify times when your child is most likely to have a bowel movement (use a diary to monitor bowel movements as suggested). Note that 5-20 minutes after meals is a likely time Just prior to these times, encourage your child to sit on the toilet for 5 minutes (or a brief time initially). Give them something to occupy them (e.g. a book, handheld computer game, something else they really enjoy).

After 5 minutes, allow the child to leave the toilet; although, if they are happy to stay in the bathroom, this is preferable. After a 10-15 minute break, return them to the toilet for another 5 minutes. Repeat this process for as long as you feel the child will tolerate it without anxiety/tantrums, until the child has had a bowel movement.

Combine this strategy with social stories and rewards for any successful use of the toilet. Try to keep calm and avoid any confrontations. Consider waiting until the school holidays, when you can be more consistent with the approach.

Children with additional needs – ERIC

Going To The Toilet School Version

Going To The Toilet Home Version

Video – Treating constipation in children with additional needs – ERIC

Aiming for Boys Information Sheet | NHS GGC

Bottom Wiping Activity Sheet | NHS GGC

Fear of Noises from the Toilet Information Sheet | NHS GGC

Fear of Sitting on the Toilet Information Sheet | NHS GGC

Practical Advice for Smearing- NHS GGC

Sense of Smell Issues – NHS GGC

Visual Aid for Toilet Training Girl (Large Image)

Visual Aids for Toilet Training Boy (large images)

What is your poo telling you? – ERIC

Developing self-help skills can take longer to learn for young people with learning disabilities due to a combination of factors.

• Motor Skill Difficulties
• Sensory Processing Challenges
• Need for Structured Teaching
• Difficulty with Generalisation
• Cognitive and Executive Functioning Challenges
• Need for Adaptations and Accommodations

The principles of supporting our young people are the same for all young people and children, however might take longer and require more repetition for the skill to be learnt:

• Hair Washing Advice – Children and Family Health Devon
• Hairwashing for children – tips and advice – Children and Family Health Devon
• Washing – hints and tips – Children and Family Health Devon
• Going to the toilet – handwashing – Children and Family Health Devon
• Occupational therapy advice: Toileting (Sensory Differences) – Children and Family Health Devon
• Teaching children about going to the toilet – Children and Family Health Devon
• Dressing advice for sensory differences – Children and Family Health Devon
• Backward chaining: teaching young ones self-care – Children and Family Health Devon
• Forward chaining: a ‘one step at a time’ method – Children and Family Health Devon

Please can you add these links for local clubs

• Disability | South West Athletics
• Disability sports – Children, families and education– Devon County Council

Feeding problems can be common in children and young people with a learning disability and / or autism. Issues such as only eating very few foods, not being able to eat at School, going long periods of time without eating and pica (eating non-food items) can feel difficult to understand and manage.

• A need for routine around mealtimes. This can include specific seating for you and the people you eat with, or specific cutlery and plates. You may want to eat alone
• Sensitivity to smells, sights and sound at mealtimes can impact eating
• Gut upset, including constipation, diarrhoea and a bloated stomach
• Food hypersensitivity (when the body reacts badly to certain foods)
• Eating a limited diet – a small number of foods similar in colour and taste
• Rejecting food that is the wrong brand of different packaging

Here are some useful resources:

Clinician resources: PEACE Pathway

SOS Parent Workshop – When Children Won’t Eat – Free 2 hour webinar

• Having a strong preference for certain textures (such as crunchy or soft foods)
• Preferring certain food brands
• Preferring “beige foods” such as crisps, biscuits, white bread, chicken nuggets
• Preferring food cut in a certain way (e.g. toast cut into squares but not triangles)
• Not wanting different foods to touch on a plate
• Foods that are predictable may be preferred. For example, a branded takeaway burger or a specific brand of crisps will always look and taste the same. But one banana may be very ripe and another could be underripe or bruised, so is unpredictable. Autistic people tend to prefer things that are predictable, as this can help to reduce anxiety
• Mealtimes are often full of lots of people, noises and smells and for an autistic person, this can be very stressful and make the mealtime environment an unpleasant experience.

Eating meals – hints and tips – Children and Family Health Devon

Strategies for sensory based eating difficulties – Children and Family Health Devon

Eating meals with sensory differences – Children and Family Health Devon

tube_feeding_information_sheet.pdf Birmingham Food Refusal Services