What is an autism spectrum condition (ASC)?
ASC or autism spectrum disorder (ASD) or autism, is a neurological condition that affects every individual differently. This means that every child with autism will be unique, despite the same diagnosis. What they all have in common is that they struggle with understanding and engaging in communication and social situations. This can make it difficult for them to understand the world around them, why they need to do things they don’t like, or why other people don’t think the same way that they do. Some can seem to lack ‘common sense’ and they may respond to what is said to them literally (for example, expecting you to give them attention in 1 minute, if this is what you said to them).
Children with an ASC are not ‘naughty’ or ‘rude’, but they may appear to be these things, because they lack understanding of social rules, or their frustration and inability to express their emotions can lead to unacceptable behaviours.
People with an ASC may experience the world differently to most people. Their brains may over- or under-react to information provided by their senses. For example:
Sounds: Loud, unexpected noises (e.g. bangs), continuous noises (e.g. hand-driers), lots of different sounds (e.g. in shopping centres) can be overwhelming. Children may cover their ears, or sing and hum to cover sounds they find unpleasant.
Touch: Light touch, cutting nails or hair, cleaning teeth and wearing certain clothes can be uncomfortable. However, some may find tight clothing, being ‘squashed’, or being close to people or objects calming.
Taste: May prefer bland foods or certain textures. May not like ‘mixed-up’ foods on their plate. May like to eat the same thing every day. Others may crave strong flavours.
Vision: May find bright light/ colours, artificial light or dark rooms difficult. Strip lighting may visibly ’flicker’ to them.
Smell: May find strongly scented products overpowering. Others may crave certain smells – even if they are not socially acceptable.
Pain: May experience high or low pain thresholds. May not notice that they are hungry, thirsty, hot, cold, unwell or hurting.
Behaviour and ASC
As they experience the world differently, children with an ASC may show behaviours that other children in their class may not show.
Anxiety: Not understanding the world, and finding people and situations difficult to predict, can lead to high anxiety in children.
Repetitive Activities: These can bring comfort to children in a chaotic world.
Angry/ Violent Behaviour: May not be able to understand or verbally express how they are feeling/emotions. This may lead to frustration and angry outbursts and antisocial behaviour.
‘Mind-blindness’: Lack of empathy: May presume that everyone feels the same way that they do, so do not consider how friends or family are feeling.
Focus on detail: Most people can see the ’whole picture’ when looking at something, or listening to a story. Those with an ASC tend to focus on the detail, and may miss the whole picture. This can make learning, listening and concentrating difficult.
Making and Maintaining Friendships: May try to manipulate or control their friends, argue regularly or become withdrawn socially.
Life with ASC
Seeing children struggling with school expectations, learning and/or friendships can understandably be a worry to parents.
The good news for those with an ASC is that, with the right support, they can go on to have successful careers, which they love.
Many children with an ASC have one or more special interests; for example, computing, music, maths, science, writing, sport, transport, construction. Encouraging that interest may well help them to develop their future career. Special interests can also be used as part of reward system. Be aware that some children struggle with effusive praise and it can have the opposite effect. If your child struggles to accept praise then talking to someone about something good your child has done, while they are in earshot, may be more easily accepted than directly praising them.
Helping children with an ASC
To feel more confident in a world that consists of social rules, children with an ASC will probably need some support to:
- Understand appropriate personal space, facial expressions, body language, emotions in themselves as well as others, how to express those feelings in an acceptable manner, how to identify physical signs in their bodies which signal they are feeling angry/ upset etc. and ways to calm down (there are various programmes/books to help with this). It’s not uncommon for children who have trouble handling their emotions to lose control and direct their, sometimes violent, distress at others. (Some children with an ASC are in a chronic ‘fight or flight’ state.) Children can respond well to having a safe ‘quiet space/ chill space’ to go to when feeling anxious or to calm down. They will benefit from positive acknowledgement when they have calmed down or when they try to express their feelings verbally.
- Join in conversations or to recognise when someone wants to play with them (you may need to explain this to them, as they may not pick it up naturally).
- Practise turn-taking in conversations and games.
- Understand that mistakes help us to learn and that we can’t always win or be right.
The more we can help a child with an ASC to understand the world, and give them strategies to help them reduce their anxiety, then the more able they will be to cope with school, home and unexpected things.
How to reduce anxiety in children with an ASC.
It is unrealistic to expect a child with an ASC to be totally free from anxiety, but it is possible to help them develop strategies to cope more easily with things that they find stressful.
Communication is an issue for people with an ASC, so changing the way you communicate with them can help them dramatically.
Use their name before giving an instruction: they may not understand the instruction is for them and maybe thinking about something more interesting! Say “John, it’s dinner time.” rather than “It’s dinnertime.”
Say what you mean: If you want them to put their coat on then say “Put your coat on”, not “Can you put your coat on?” Otherwise they may think it’s a choice, when it isn’t.
Simplify your language: Even if your child seems articulate, children with an ASC can have difficulties understanding language. Give one instruction at a time “Turn off the television.” [pause] “Well done. It’s dinner time.” may work better than “Turn off the television, it is dinner time.”
Say things in the right order: “Put your coat on. Go to the car. We are going to school.” rather than, “We’re going to school in the car now, so you need to put your coat on.”
Direct communication can cause difficulties: it can be better to be task focussed rather than person focussed. For example, instead of saying ‘Fred you need to pick up those toys,’ try ‘the toys need picking up’
Give choices: Rather than an open-ended question, such as “What would you like to drink?”, ask “Would you like milk or juice?”
Using visuals/having routines: Use of timetables, calendars, first and then boards, photos, symbols, timers, lists and routines can help to reduce anxiety because the day is more predictable: children with an ASC tend to be visual learners. Pictures can help with their understanding. Having a written list or a checklist of pictures that help them to remember a daily routine, such as getting dressed or what needs to go in their school bag, means they will worry less about forgetting something and become more independent, but they may need help to learn the routine, before doing it alone. Having a motivator planned for the end of the routine may help e.g. “Get dressed, then I pad.” A wall calendar they can tick off will help them understand how long it is until their birthday, or how long until they go back to school. A visual timetable will help them understand what is happening today, and let them check back if they forget, meaning fewer ‘worry questions’ for you to answer. For those unexpected events a ‘surprise’ or ‘whoops’ card can be introduced to signify a change in routine that day. As each activity is completed, the symbol or photo of that activity is removed.
Transitions and changes to routine: Change and transitions can be stressful so try to give a prior warning. This gives children the chance to find a good stopping place for an activity and makes the transition less fraught. Try giving a ‘countdown’ warning of say 10 minutes before expecting your child to come to the dinner table or get ready to go out, then give a reminder just before. Just as important as issuing the countdown is actually making the transition at the stated time!
Check comprehension: Children with an ASC tend not to generalise what they learn in one situation to another—so a word understood in one situation may not be understood in another and they may need explicit teaching about what to do/expect in each situation. Social stories are a useful resource –these are stories specifically tailored to an individual child to teach them about an area of life or social situation e.g. what happens when we go to the dentist, or the family morning routine.
Phrases such as ’crying your eyes out’ can cause concern, because they may be taken literally i.e. their eyes may actually fall out! Also, be cautious about using phrases such as ‘we always….’, ‘Every Thursday…’, ‘we will go to the beach on Saturday’, if there is an element of doubt. Instead, use ‘we usually….’, ‘sometimes, we …’, ‘we will try…’, ‘if the weather is fine we will go…’.
Give thinking time: It can take up to 10 seconds for a child to understand what you have said to them. Give them some time before expecting an answer (this applies to children with all sorts of processing difficulties, not just an ASC)
You are not alone
There are many groups and societies offering information and support to help families of children with autism. Here are just some of them:
National Autistic Society: http://www.autism.org.uk/ Lots of information and advice on what autism is, the diagnosis of autism, dealing with autism as a family. There is also advice for children who present with social communication difficulties, without a diagnosis of autism.
Kent Autistic Trust: www.kentautistic.com Offer help, advice and support for autistic families in Kent. Have a dedicated Family Support Officer – Jo Blamires, 01634 405168 (Mon-Fri 9:00- 4:30), firstname.lastname@example.org runs an email group of local events and support groups, can put you in touch with other parents, help find if you are entitled to disability benefits, provide advice on education options and planning for the future.
Offer practical and emotional support for parents and carers of children with special educational needs, who might be having problems or difficulties. They run groups, drop-ins and provide advice. Contactable during office hours on 01732 808448; email@example.com
ASD Support Group: Run by a committed team with personal experience of caring for children with an ASC, supported by Mind the mental health charity. The group meet weekly, including during school holidays, from 10-11:30 on Mondays at 34 St John’s Road, Sevenoaks, TN13 3LW. To attend you need to self -refer online at https://westkentmind.org.uk/what-we-offer/asd-carers-support-group
Crossroads Young Carers: Help and support for children and young people who care for someone in their family. Support network for siblings to meet with children in similar situations to themselves. Offer a fortnightly club night, trips out and one to one support where needed. Contact 01622 817114; firstname.lastname@example.org; email@example.com
DMAX: Disability sports club held each Thursday for 8-16 year olds from 18:00- 19:30 pm. £3 per session (£1:50 for concessions). Contact 01622 602133 for more information.
Square Pegs Drama Club: http://www.squarepegsdramaclub.com/ work with 7-25 year olds with a learning disability and/or social communication difficulties (including ASCs) developing communication and social skills, confidence and self-esteem through drama, creative activities and performance. There are a range of classes in the Maidstone area. Contact firstname.lastname@example.org
Junior Group: Free Group for 8-11 year olds. There are two groups in the local area: Wednesdays 4-5:30 at Snodland Youth and Children’s Centre. Thursdays 4-5:30 at East Malling Children’s Centre. Staff are experienced in supporting children with social communication issues/ ASC developing social skills.