Continence issues in children and young people with autism. Registered charity number

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1 Continence issues in children and young people with autism

2 Suzie Franklin Family Liaison and Support Worker Inscape House School Anna Turner Paediatric Continence Advisor PromoCon

3 Aims for today: To develop a better understanding of the toileting difficulties associated with having an Autistic Spectrum Condition (ASC) - from autism to Asperger s Syndrome To explore whether these difficulties are linked to continence, sensory difficulties or behaviour

4 Talk to your neighbour. What difficulties have you come across when you are working with children and young people with Autistic Spectrum Conditions and continence issues?

5 Social interaction, ASC and continence May not be socially motivated to wear big boy/girl pants or use the toilet as their peers do Be less likely to copy others to learn new skills May not be motivated to please you by weeing or pooing in the right place! May not mind if they are wet or have soiled themselves May go to the toilet in inappropriate places

6 Social communication, ASC and continence Not understanding the words used May not understand what you are asking them to do May take language literally Put the toilet roll in the toilet! Less likely to communicate the need to go to the toilet May need instructions or information presented visually

7 Social understanding, ASC and continence Assume that you know they need help may not realise they need to communicate this Not understanding that soiling themselves may have an impact on others and why we don t like it! Have difficulty in changing routines need to keep things the same! May not transfer their knowledge to unfamiliar toilets May develop fears and anxiety around using the toilet

8 Sensory sensitivities sight touch hearing taste smell balance (vestibular) body awareness (proprioception) Responses to sensory experiences may be different Hyper (over) or hypo (under) sensitivity

9 Sensory sensitivities, ASC and continence May not register that their bowel or bladder is full so don t feel the need to go = more accidents Might not be aware if they are wet or have soiled themselves May like the sensation of having poo in their nappy Could smear or have problems with wiping/cleaning might not like the feel of toilet roll

10 Sensory sensitivities, ASC and continence Feels unbalanced when sitting on the toilet May not like a drip of wee on their legs or to get water on themselves or their clothes Removes all their clothes when they use the toilet May dislike sensory input from the bathroom (smells, sounds, touch) May love and seek sensory input from the bathroom (smells, sounds, touch)

11 .so the difficulties you may see Basic toilet training skills Constipation, withholding and soiling (restricted diet?) Smearing Going to the toilet in inappropriate places Develop anxiety and fears about using toilet Using different toilets Have difficulties transferring knowledge Bedwetting and/or day wetting

12 Before you start a toileting/continence programme Is everyone ready to start? Is it the right time for the child and/or family Involve the young person where possible Everyone working together with a consistent approach is the key to success

13 Readiness for toilet training Two major things are required for toilet training Physical development and maturity Social understanding and motivation Children with additional needs can be successfully toilet trained, it may just take more time and support to achieve this

14 Developing general toileting awareness Always change your child s nappy in the bathroom Change your child standing up if possible Help your child practice pulling clothing up and down Encourage your child to put their poo in the toilet Flush the toilet Wash and dry hands Introduce these as part of daily routine

15 Explaining what toileting is about Children need information about the whole process in a way which they can easily understand Clear and specific language Visual methods seem to work best Visual schedules containing manageable steps

16 Explaining what toileting is about Social Stories to explain what happens during toileting

17 There are two major causes of toilet training problems in children with autism. They are either afraid of the toilet or they do not know what they are supposed to do. Temple Grandin

18 Children with Autism and constipation Constipation and soiling is often blamed on their disability and sometimes not picked up or treated appropriately They are less likely to have investigations to rule out any possible underlying problems NICE Guidelines on Constipation recommend treatment with Movicol

19 Constipation Constipation means that bowel movements are less frequent and are difficult or painful to pass Generally we should open our bowels no more than three times a day and no less than three a week Present in 5 30% of all children Exact cause is not fully understood

20 Managing constipation Sitting position child s feet need to touch ground, knees should ideally be higher than their hips Foot stool, trainer or padded seat Hand rails for balance Using massage - can help encourage bowel movements Child to blow bubbles whilst using the toilet helps to recognise the muscles they need to use to push out poo

21 We need to convince children that poo wants to go in the toilet!

22 Smearing Can often be associated with autism Because it s such a difficult subject to talk about parents can feel very isolated Because it is poo (and not paint) that s being smeared it quickly becomes a social problem for those around the child What is the purpose of this behaviour?

23 Smearing Give the child other sensory experiences which might stop them from needing to touch/smell their poo If possible redirect touching the poo with another activity Have some sensory/tactile objects for the child to play with at other times of the day

24 Smearing Does your child know they need to wipe themselves with toilet paper? Can your child wipe themselves properly after going to the toilet - this may look like soiling Use wet wipes as an alternative to toilet paper (which could feel harsh or scratchy on their skin) Putting your child in clothing that makes it difficult for them to reach their bottom

25 Smearing Ensure your child does not see the aftermath of the smearing as a reward eg warm bath and time with you Use minimal interaction throughout and after the smearing Show your child what you want them to do using visual supports

26 Using different or unfamiliar toilets Difficulties transferring knowledge to new situations May be toilet trained at home but not school May be toilet trained at school but not at home Some children find other toilets very scary! Sensory difficulties, fears and anxiety in public toilets

27 Using different or unfamiliar toilets Using a consistent toileting routine when using ALL toilets reinforce this with a visual schedule Familiarise your child by showing them where toilets are in new places practice going inside Take familiar object to new toilets Take additional items for personal hygiene Radar key

28 Think about. WHAT behaviour you are seeing WHY the child may be behaving this way HOW to help reduce or replace this behaviour

29 Sensory differences Be the detective Avoid Desensitise Build in the experiences they do like Make toileting fun!

30 Sensory differences - visual Replacing strip or fluorescent lighting with low wattage bulb, coloured bulb or night light Cover up mirrors and reflective tiles if this is a problem Put up their favourite characters, pictures, posters or theme on wall Think about if they like the door open or closed

31 Sensory difficulties - smell Ensuring that there is good ventilation and air circulation in the bathroom to reduce smells Replacing smells they dislike with something else they like plug in air fresheners Think about other smells in the bathroom they may not like - cleaning products

32 Sensory difficulties - sound Not flushing the toilet when your child is in the bathroom Giving warnings before flushing the toilet Distracting your child with music/other sounds they like Try using ear defenders or ear phones Desensitisation gradually building up your child s tolerance to the sound of the toilet flushing (record the sound, play it quietly and with other sounds)

33 Sensory difficulties touch and feel Make the bathroom feel as comfortable as possible, is it too warm or cold? Let your child choose their own toilet paper (patterned/characters, soft, wet toilet tissue) Use a padded/ heated toilet seat Put toilet roll in toilet if fear of splashing Soft (non-slip) rug on floor etc Have a box of favourite sensory things, toys or books

34 Sensory difficulties spatial awareness Grab rails to help when using the toilet for balance Non slip mats A weighted vest or lap pad may keep the child sitting on the toilet longer Portable toilet seat to make the hole smaller or just more comfortable (heated/padded) Try and enclose the toilet area if afraid of open spaces

35 Getting support Schools and continence Practical support National and local support

36 Schools and continence Equality Act 2010 requires schools to; not treat disabled pupils less favourably for a reason related to their disability and take reasonable steps to ensure that disabled pupils are not put at a substantial disadvantage

37 Continence policy All education providers should provide a continence policy which should ideally include Placing continence in the context of disability discrimination legislation Ensure the dignity, independence, need for privacy and self esteem of the young person Be linked to an anti-bullying policy Define and develop health and safety, personal or intimate care and child protection policies (Including me - managing complex health needs in schools and early years settings. Council for Disabled Children)

38 Common issues in schools Asking parents of a child to come and change a child is likely to be a direct contravention of the DDA, and leaving a child in a soiled nappy for any length of time pending the return of a parent is a form of abuse (Page 74, Including Me) The normal process of changing a nappy should not raise child protection concerns, and there are no regulations that indicate that a second member of staff must be available to supervise the nappy changing process to ensure that abuse does not take place if there is a known risk of false allegation by a child then a single practitioners should not undertake nappy changing. (page 74/75, Including Me)

39 National Guidance NICE Guidelines on Constipation in children and young people NICE Guidelines on Nocturnal enuresis Management of bedwetting in children and young people Including me managing complex health needs in schools and early years settings (Council for Disabled Children) Managing bowel and bladder problems in school and early years settings (PromoCon) adder Good practice in continence services (Department of Health) Toilet/continence guidance notes for schools

40 Practical support Accessible toilets Radar Key Changing Places website Just can t wait card DLA note down difficulties on form

41 Where to get support Local Continence Team or School Nursing Service Occupation Therapy (OT) PromoCon ERIC Dry Like Me

42 Many parents experience problems with toilet training their children. All children are individual when and how they learn to use the toilet. Because learning social skills is more difficult for children on the autistic spectrum it is sometimes harder for them. Dr Eve Fleming Senior Medical Officer

43 Before we finish Remember to be a detective Don t give up sometimes changes in a child s behaviours can take a while Remember parents are doing a difficult job as well as they can

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