Teaching your child to use the toilet correctly can be a difficult task, whether they have autism or not. But if your child has autism, the process of developing a toilet routine can take longer, and involve its own particular challenges. This guide provides some useful steps that will hopefully make your toilet training a success.
There are many factors you need to take into consideration when deciding the right time to start toilet training. Choose a time when you have few engagements and are feeling relatively stress free. Concentrate on one behaviour; it's very difficult to change two behaviours at once so tackle one issue at a time. Ideally, everyone working with your child will start toilet training at the same time and follow your agreed approach, so make sure your child's school/childminder etc are aware of when you are starting the routine, the steps to be followed and the equipment needed. Your child may behave differently than normal during this time especially when the change of routine first takes place so it's a good idea to let everyone know why there could be a change in behaviour.
Remember that independent toileting is the ultimate aim and may take many months but there will be many small steps and successes along the way.
Developing a toileting routine
Children with an autistic spectrum disorder (ASD) often like routine. You can build upon this desire for predictability to develop a successful toilet training routine. Teach as a whole routine from communicating need to using the toilet to drying hands, rather than just sitting on the toilet. Keep the sequence of behaviours the same every time and use visual cues to support the routine. Often when an activity is anticipated, less resistance occurs. There are some examples of visual supports on the Do 2 Learn website at www.dotolearn.com/picturecards/printcards/index.htm
The first sign that a child might be ready to start toilet training is when they start to become aware of needing to go to the toilet. This may be displayed by changes in behaviour patterns, appearing distracted or fidgeting when they are wet or have soiled or they may inform a parent/carer when they need changing. In terms of physical readiness, it is suggested that a good indicator would be whether a child is able to remain clean for one to two hours at a time. As well as physical factors associated with toilet training, there are social factors to consider. It is rare for a child with autism to have the social motivation to want to be like mummy/daddy/friend and use the toilet. Your child might not see the point in changing to use the toilet after using nappies for a number of years. Change can be very difficult for children with autism so therefore it is often easier not to use a potty as part of toilet training to avoid another change from potty to toilet.
When changing your child's nappy, do this where the toilet is so they can start relating toileting activities to the bathroom. Observe your child over a few days or a week to see when they do a wee or a poo. It is quite usual for a fairly regular pattern to emerge, especially if mealtimes and drinks are provided at about the same time every day. Identifying the times can help to establish when to take your child to the toilet with an increased likelihood of them doing a wee or poo leading to positive reinforcement. Show your child a photo or drawing of the toilet and say 'your child's name, toilet', take them into the toilet, follow your visual sequence (see below) for undressing and sit your child on the toilet. Even if they do not open their bowel or bladder, continue to follow the visual sequence as if they had.
Continue to take your child at set times based on your observations of when they are most likely to go. If they wet themselves at another time, take them to the toilet as quickly as possible and try to get them there so some of the wee goes into the toilet. Ignore the wetting and positively reinforce that the wee has gone into the toilet and continue the rest of the toileting routine. You will need to decide whether or not and how to praise your child for successfully following the toileting routine. Some children enjoy and respond to social praise ('good boy', or a tickle) others respond better to an object. Some children find praise difficult and keeping a calm, structured routine with a preferred activity after toileting may work better. It's important to remember that all children are different and they will not all respond to the same teaching techniques - what works for one child may not work for another.
Having a visual sequence beside the toilet can help your child understand what is expected of them, for example: trousers down, pants down, sit on the toilet, wee/poo in the toilet, wipe (you may need to show how many squares of paper to take), pants up, trousers up, flush toilet, wash hands. Above the sink at eye level you would then have another picture routine for washing hands (see hand washing section). Make sure the pictures are very clear so there is no misunderstanding. For example, if you are teaching your son to stand and wee in the toilet, show an outline drawing of him standing and weeing in the toilet, if you are teaching sitting show a picture of him sitting and weeing in the toilet.
Dressing and undressing
While toilet training, dress your child in clothes they can easily manage themselves: elasticised waist bands on trousers and skirts or dresses that are not too long. The clothing needs to be comfortable so beware of labels, tags or seams that may rub. Thomas the Tank Engine or Barbie underwear can be a great motivator for some children to begin toilet training.
Your child may have to be taught how much they need to undress to use the toilet. Use clear pictures and language. 'Backward chaining' can be an effective way to teach new skills. This involves breaking a skill down into smaller steps, teaching the last stage of the sequence first. So if you were teaching your child to pull up his trousers you would pull them up to his hips and then he would pull them up to his waist. Next time you would pull then up to just under his hips and he would pull them over his hips and waist. This is a particularly good way of teaching new skills as it raises your child's self-esteem as they have taken the final step of the task themselves to complete the sequence.
Teach hand washing as part of the whole toileting routine. Follow the same steps each time: sleeves up, tap on, wet hands, squirt soap, rub hands together, rinse hands, turn off tap, shake hands, dry hands. At first you may need to stand behind your child and physically prompt them, slowly withdrawing. Beware of using verbal prompts as your child can become dependent on these without you realising. Have a laminated hand washing sequence at eye level above the sink to remind your child of the steps they need to take. The sequence can either be in photographs, pictures or the written word - whatever is most suitable and motivating for your child. You may need to create a way of removing or covering over each symbol as the step is completed to show that it is finished and to move on to the next step.
You may wish to teach your child to use the cold tap only. Beware that if you teach them to use the hot tap independently at home when they go into other settings and wash their hands the water may be too hot and could burn them.
Boys - sit or stand?
When deciding whether to teach a boy to sit or stand to urinate ask yourself the following questions:
- Can they distinguish between when they want to wee or poo?
- Do they have the co-ordination, focus and control needed to aim?
- If they learn by imitation, is there someone they can watch?
If the answer to any of the above if 'yes', then they are probably able to be taught to stand to urinate. To start teaching them to aim, it can be useful to put a piece of cereal (preferably one they don't eat as this could lead to confusion) down the toilet so they have something to aim for and concentrate on.
Bowel control is usually learnt after bladder control - although all individuals are different and learn at their own rate and pattern. Some children with autism can find bowel movements very frightening and not understand what is happening, perhaps thinking that their insides are coming out. It can help to get a book with pictures from the library to explain the digestion process.
For others the feel of a full nappy can be comforting, the weight of the nappy can squeeze them or they may enjoy the sensory feeling. You could replace these feelings in other ways instead of withdrawing them completely with toilet training. Those that enjoy a feeling of a full nappy may like to be tightly wrapped in a heavy blanket, this can be timetabled in to their daily routine and they can be given a means of communication to request this activity. When teaching bowel control, sit your child on the toilet, keep the nappy on but with a hole cut in the bottom, slowly cut away the nappy each time until they are able to go without the nappy at all. To start with they will still have the feeling of a security around their waist which in turn will enable them to feel relaxed enough to poo on the toilet. Those that enjoy the sensory feeling can be provided with messy play activities such as gloop (cornflour and water mix), playdough or other messy play activities.
Some children are toilet trained through habit. Habit training is effective for children who may: lack awareness, not understand the significance or meaning related to physical sensations, be limited by decreased or absent physical sensations or have unsuccessfully tried toilet training before. Habit training involves training the body to go at set times. Take your child to the toilet at set times throughout the day, every day. As before, keep a chart to discover the best time to take your child. While sitting on the toilet it is very important your child feels relaxed enough to open their bladder/bowels. Having the tap running in the background can help enable your child to wee and blowing bubbles or blowing up a balloon can help your child to open their bowel. Sometimes having a toy to handle - not one which causes excitement - can be useful to both keep your child on the toilet and relax them. Keep certain toys/books for just when they are sitting on the toilet.
If your child lacks awareness or sensation, they may have to be taught a strategy before getting off the toilet to avoid accidentally weeing on the floor. You can start teaching this process by slowly counting to ten out loud when they have finished weeing before allowing them to get up or giving them a sand timer to look at before they get up. To help your child to independently manage their own toileting routine when they are older, you can buy watches which you can set to vibrate at certain times throughout the day (see resource section). You can then teach your child when the watch vibrates they are to go to the toilet.
The bathroom needs to be a calm, relaxing, structured environment in order to encourage independence and success with the complete toileting routine. Structuring the bathroom and removing all distractions can help your child understand what is expected of them while in the toilet. Removing objects which are not associated with toileting such as toothbrushes, make-up and laundry will help aid your child's understanding and avoid distractions. Think about making the bathroom as comfortable as possible, adding foot supports, side rails, reduced lighting, switching off the fan and a smaller toilet seat can all help reduce anxieties (see resources section).
Make sure everything in the bathroom is set up to encourage independence. Is everything in your bathroom at the right level for your child? Can they reach the soap and towel? Is the soap too highly scented for your child? Do you need to adapt the bathroom for safety reasons such as the temperature of the hot water? Some children are sensitive to the sound of the fan so it may be necessary to adjust the light setting so it doesn't automatically come on with the light.
Your child should be able to sit comfortably on the toilet with hips and knees flexed at a 90 degree angle and have feet flat on a secure object.
Once your child is mostly dry during the day you will then be able to start night-time toilet training. Have a set bedtime routine which does not change with weekends or holidays. Limit the amount your child eats and drinks before bed, having no fluid an hour before bedtime, but ensuring your child has enough fluid throughout the day. Take your child to the toilet before they go to bed. They then may need to be taken once during the night. You could fit this in with your routine by taking them before you go to bed. Then take them as soon as they wake. If they are unable to keep dry during the night, you may need to try different times in the night to take them - may be not when you go to bed but in the middle of the night. There are a number of different products available to protect bedding (see resource section).
Schools and early years settings
Admission to school should not be refused simply because a child has difficulties with continence and the extract from the Code of Practice for Schools in the Disability Discrimination Act 1995, as amended by the Special Educational Needs Disability Act 2001, should be referred to in this context. The example below has been taken from the Disability Discrimination Act 1995 Part 4 Code of Practice for Schools.
A mother seeks admission to a nursery school for her son who has Hirschprung's disease. The school explains that they could not admit him until he is toilet trained. That is their policy for all children.
Is this less favourable treatment for a reason related to the pupil's disability?
The child has difficulty in establishing bowel control as a consequence of having Hirschprung's disease, so the reason given is related to the child's disability.
Is it less favourable treatment than someone gets if the reason does not apply to him or her?
The treatment he receives has to be compared with a child to whom that reason does not apply, that is, the comparison is with a child who is continent. A child who is continent is not asked to delay admission to the school. It is less favourable treatment than is given to a child who is continent.
Is it justified?
In this case the decision was not based on any assessment of the circumstances of the particular case but on a blanket policy and so there is unlikely to be a material and substantial reason. It is likely that this is unlawful discrimination.
You can download a copy of the Disability Discrimination Act 1995 Part 4 Code of Practice for Schools from the Disability Rights Commission website at www.drc-gb.org/the_law/legislation
Good practice guidelines have been written for local authorities, schools, early years settings and health professionals to enable them to develop policies and procedures for their setting. A copy of Managing bowel and bladder problems in schools and early years settings can be downloaded from the PromoCon (promoting continence and product awareness) website at www.promocon.co.uk/continenceschools.shtml
School support staff are not obliged to change children in school or provide intimate care, but if your child is unable to access education without this facility then the school should find somebody who is willing to perform these duties and ensure they are written into the employees contract. If your child is going through statutory assessment for a statement of special educational needs and has difficulties with toileting, request that his need for support in this area are included in the statement. If he already has a statement which does not specify his toileting needs, you can raise this at the next annual review. If you are experiencing difficulties with school, it may also be worth writing to the chair of governing body of the school. The governing body has a duty to ensure that every effort is made to ensure that the school make provision for special educational needs under s317of the Education Act 1996.
- Giving a drink ten to 15 minutes before toileting can help increase the chances of your child successfully doing a wee on the toilet but avoid giving too much as this creates an unnatural routine.
- You will need to decide if you are going to teach your child to shut the door as part of the whole toileting routine or only in certain situations.
- Avoid using childlike terms for toileting as your child may find it difficult to change language later in life. It is not appropriate for a 20 year-old to say he is going for a pee pee.
- When your child first learns to poo on the toilet it may be easier for them to wipe themselves with wet wipes rather than toilet paper.
- If your child has a fear of flushing the toilet, you may wish to remove this from the visual sequence and leave it until the end of the routine - after your child has dried their hands. They then may need to stand in the door way while you flush the toilet and gradually stand closer each time until they are able to flush for themselves. Playing calming music to drown out the noise of the flush or explaining with pictures what makes the noise when the toilet is flushed may also help.
- When your child is in a car ensure they have a protector to sit on to stop the car seat from being soiled by accidents. Avoid drinks before long car journeys.
- Be aware that some children will hold onto their wee/poo until they have their nappy put on, for example if they know they always have a nappy on before going in the car they may wait until it is put back to release their bowel/bladder.
- There is a range of absorbent pants and swimwear for older children available.
- While toilet training you will be spending more time than usual focusing on your child. If you have other children, you may need to put aside some extra time just for them.
- Once your child is toilet trained at home you will want to teach them to use toilets when out in the community. When visiting new places, show your child where the toilets are and use the same routine as you do at home. Use the same picture and toy or book they may have for toileting at home.
- Some children smear their poo. This is a very challenging behaviour to come to terms with. There are a number of reasons your child may do this. Firstly, take them to your GP to make sure there are no physical factors as to why this is happening (being in pain). They may not have understood the process of wiping and you may need to teach them 'hand over hand'. The toilet paper could be too harsh for their sensitive skin therefore using wet wipes may be easier for them. Some children enjoy the feel of smearing, provide other acceptable activities which give the same feeling such as finger painting, gloop (cornflour and water) or playdough. Some children may see clearing up after they have smeared as a reward particularly if they like water or receive lots of attention form their carer. Even if they are reprimanding them it can still be seen a reinforcement. Use minimal interaction and alternative clean up methods such as baby wipes or a tepid shower.
- If your child is learning to use the toilet in another setting as well as at home, eg school, send in any equipment you use at home, for example a toilet seat they may use to make the seat smaller. Also remember to send spare clothes, plastic bags to put any wet clothes in and wet wipes. It is important that you have clear lines of communication during this time so having a home/school book to share concerns and successes is vital.
ERIC (Education and Resources for Improving Childhood Continence) sells a range of bedding protection, swimwear, absorbent pants and vibrating watches.
Web shop telephone number: 01173 012 101
ERIC has a helpline providing advice and information to children, parents and health professionals on all aspects of toileting. Call 0845 370 8008 (Monday-Friday, 10am-4pm) or visit: www.enuresis.org.uk
Fledglings is a charity which helps parents and carers of a child with special needs of any kind to find simple, affordable solutions to practical problems.
Tel: 0845 458 1124
PROMOCON (Promoting Continence and Product Awareness) has links to various organisations who sell toilet-related products including swimwear, absorbent pants and toilet seats for older children.
Tinkle Toonz has musical sensors in potties and ones which can be used in underwear, nappies and pull-ups, designed to alert the child or the parent that the child has 'gone' in his potty or pants.
TEACCH (Treatment and Education of Autistic and related Communication handicapped Children) www.teacch.com/toilet.html
ERIC (Education and Resources for Improving Childhood Continence) (2002). We can do it! Helping children who have learning disabilities with bowel and bladder management: a guide for parents
Wheeler, Mary (1999). Toilet training for individuals with autism and related disorders. Future Horizons, Inc.
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