The aim of our toolkit is to provide advice, activities and general resources to help families to manage some every day challenges and difficulties around toileting and self-care. As a parent, you are the best person in your child's life to support these difficulties, however, working with all key people in your child's life to ensure consistency is paramount and essential for success.
The term 'Challenging Behaviour' usually refers to those behaviours which are likely to cause significant harm, result in someone being excluded from everyday activities or affects their ability to learn and develop. This can include, refusing food, staying awake at night or removing clothes in public, but of course what seems challenging to one person may seem perfectly reasonable to someone else. Others may feel challenging behaviour refers to those behaviours which are likely to cause significant harm to people or themselves, for example, aggression, self injury, destruction to property, temper tantrums, defiance, restricted and repetitive behaviours or wandering off unsupervised.
What causes Challenging Behaviour?
- struggle to understand what is happening around them or struggle to communicate their needs
- feel they have no control over what happens to them or the chance to make choices about what they want to do
- be in pain or discomfort as a result of physical problems such as ear ache
- have sensory processing differences, which can cause an aversion to noise or bright lighting or difficulties knowing where their bodies are in space
- be reacting to change or unfamiliar situations or events
- not be comfortable in social situations, such as having to meet new people or look people in the eye
- be asked to do more than they can cope with or manage, such as a task that is too difficult, too long, or not motivating
- want something they can’t have, such as a toy
- being tired, unwell, fed up or just having an ‘off day’.
Challenging behaviour can be confusing and difficult to understand, however, it can be an attempt to communicate, or a way of coping with a particular situation. To change your child's behaviour you need to understanding what is causing it and what your child is getting out of it. You can work on your child's difficult or challenging behaviour by either changing the trigger or reward your child gets from the behaviour.
It is important to focus on one behaviour at a time, so not to overwhelm yourself or your child. Below are some idea's and strategies and additional links to help you to support your child's behaviour at home.
Encouraging Positive Behaviour:
Play helps children develop gross and fine motor skill, language and communication skills, thinking and problem solving skills as well as social skills.
As parents, most of us are naturally motivated to play and interact with our children. It can come as a surprise therefore if a child isn’t responsive to these attempts, and we may not know what to try next. For many autistic children, play may be different and more difficult to achieve, and sometimes our good intentions to engage may sometimes not be successful. However, with understanding and support it should be possible to progress their play, including their ‘social play’, and for this to support other areas of their development too.
As a starting point, it’s helpful to have an understanding of the different stages play goes through in typical development. The following charts show, firstly the recognised stages of play, in the order that they usually occur in typical development, then the stages of social play:
By looking at these charts it can be seen that many autistic children do show some of these types of play, but this is often different to their typically developing peers.
First of all, become familiar with your child’s developmental level around play. This is key to playing with them and developing their play!
Stages of play
The baby or child is primarily occupied with the way things taste, look, sound, feel, smell, etc. For example, he or she not only shakes a rattle but sucks it; feels its texture; examines the way it looks; smells it and plays with other items in a similar way.
The baby or child is concerned with organising the play items but hasn’t acquired an understanding of their purpose. So, for example, they may line up their toy cars but not actually drive them around.
The child has an understanding of the actual purpose of the toys and uses them accordingly. For example, they may now drive the toy car around the floor.
Pretend, or imaginative, play incorporates several levels: Initially the child will use items in a very functional way such as pretending to stir and drink from a toy tea cup. This could be called ‘functional imaginative’ play.
The next stage is using one item to represent another (e.g. they don’t have a cup so they pretend something else is a cup).
Imaginary play then develops into increasingly symbolic play such as projecting real life qualities onto a doll or toy animal (e.g. pretending dolly is a person); pretending something or someone is there that isn’t (e.g. an imaginary house) and taking on imaginary roles (role play).
(Adapted from Beyer & Gammeltoft, 1999)
Stages of social play
Playing by themselves
Spectating as other children play but without interacting
Playing alongside but with minimal interaction
Playing closely together with associated activities but without sharing their play ideas
Ability to play together in a co-operative way
(Adapted from Sheridan, 1999)
'Playing with Toys'
Feeding challenges are common issues with children with complex needs and autism. Children’s nutrition and mealtime behaviour's are common issues for parents everywhere but is a particular challenge for children with complex needs and autism as they are more likely to be overly selective in what they will and will not eat, therefore, as a result, many of them have less nutritional variety in their diets. Fear of new foods and food refusal are also a common concern for parents.
Guide for parents:
- Consider physical problems - it is not uncommon for children with Autism to have medical issues that can affect eating
- Relaxing mealtimes - many children with Autism can experience anxiety at mealtimes. Fear and anxiety can shut down hunger by putting the child's body in a state of 'fight or flight', therefore it is important to prepare your child for mealtimes using visuals or relaxation techniques
- Sit together at the table for mealtimes - it is important to incorporate a routine, therefore build on the visual cues so your child learns they eat at the table. Eating together also helps your child learn through your imitation and more likely to try new foods.
- Support your child's posture - often children have poor body awareness which can cause discomfort at the table, ensure your child's feet are supported and they are comfortable, therefore they will focus more on eating than keeping on their chair
- Gradually introduce new foods - children often fear certain aspects of new foods, such as, colour or texture. It is important to understand these fears, however, try to gradually exposure will help them to control and eventually eliminate these fears
- Set regular meal times - space meals and snacks throughout the day, the idea is this will train your child's internal hunger signals to specific mealtimes
- Encourage exploring and playing with messy food - Children learn through play, and this includes playing with food. Encourage your child to interact with food through his or her senses. Talk about the look and feel of foods. Make interesting shapes using utensils at first if necessary. Your child may not eat what they are exploring but this is a firm starting point then gradually build upon
- Remove food from branded boxes and containers - if your child will only eat one specific food put it in a clear container, gradually rotate brands as much as possible, therefore your child is less likely to get stuck on specific taste, look and texture
- Concentrate on the food NOT the child's behaviour - try to ignore challenging behaviors at the table as much as possible. Many children learn to escape the family meal by engaging in spitting, whining, banging on the table and the like. Focus on positive behaviour rather than the negative behaviour
Children often eat a wider range of foods than you originally think, therefore a good starting point is to complete a food diary. This could reveal some causes of the eating difficulties, whether over-eating or restricted eating. It can also help try to work out whether it is the amount, type or range of food being eaten which is the core issue, and then what underlying problems, or sensory issues, may be involved.
Many children with Complex Needs experience sensory difficulties, being over or under sensitive to sight, sound, smell, taste and texture. This can affect a child's experience of meals and their relationship with food, and cause anxiety around food.
If this is causing your child difficulties then you can seek help and support from the Occupational Therapy Service- Children
Eating & Drinking difficulties
Children who have oral, motor and/or sensory eating/drinking difficulties can be supported by the Speech and Language Therapy Service- ChildrenTeam.
If you have concerns over a child's eating/drinking and are a Health Care Professional please contact the Speech and Language Therapy Service- Children team directly to discuss your concerns. If you are a parent, please visit your child’s GP or discuss your concerns with their Health Visitor in the first instance.
Supporting a child on the autism spectrum to be independent in their toileting can be a daunting prospect for parents. There are many reasons why this may prove more challenging for a child on the spectrum than with a more typically developing child. Communication is a key issue. Does the child understand the language associated with this process, do they understand the expectation, can they indicate that they need to go to the toilet? There may be sensory issues associated with learning to use the toilet such as disliking the feeling of the toilet seat, for others, the sound of the flush may be frightening. Some children are unconcerned with the sensation of being wet.
Other issues may be that the child is not able to tune into the messages their own body is sending and will therefore be less able to act on such signals. For other children beginning to use the toilet signals a change to the long established routine of having a nappy on. New routines cause anxiety and this makes approaching toileting concerning for all. There is also the issue of readiness. The child may not yet be developmentally ready. This can be emotionally difficult for parents as they may feel a social pressure to have their child independent in their toileting.
Sleep and Bed-time routines
Sleep disorders are common in children with Autism Spectrum Disorders and other Complex Needs and have significant effect on daytime function and parental stress
You can manage and overcome many sleep problems using common behaviour strategies.
Firstly, we would recommend all families to keep a sleep diary for two weeks. A sleep diary can help establish any unusual patterns of sleep and identify factors which may influence the ability to sleep.
Why children with complex needs have trouble sleeping
- Communication difficulties
- Love of routine and bedtime habits
- Medical issues
Managing sleep problems
- Develop a positive bedtime routine
- Remove all electronic devices 1-2 hours prior to starting the routine
- Give plenty of warning bedtime is approaching
- Be consistent
- If your child is upset or gets out of bed, quietly and calmly put your child back to bed - This may need to be repeated, especially if you are trying to develop a new bedtime routine
- Consider the sleep environment