Autistic Spectrum Disorder

Strategies Booklet

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Introduction page 2

What is Autism Spectrum Disorder? page 2

Anxiety and ASD page 3

- Managing Anxiety page 3-4

- Preventing Anxiety page 4-7

Toileting and ASD page 8

Sleep and ASD page 9

Eating and ASD page 10

Autism – the Positives page 11

Reading list and References page 12

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You have received this booklet after your child has been through an assessment for

Autism Spectrum Disorder (ASD). We appreciate that although receiving a diagnosis

can help you and your child access services and information which may support

them, you have likely undergone the assessment because you or your child has

been experiencing difficulties. This booklet introduces you to some ASD specific

strategies which may help you and your child overcome some of the challenges

living with ASD can present.

It is important to remember every child and family is different and their support needs

will vary. ASD itself can be very different between individuals with the diagnosis.

Behaviour always has something underpinning it, a reason why it has occurred.

Finding out what this reason is key to managing that behaviour appropriately.

Therefore, this booklet will first briefly explain what ASD is, and therefore why many

people with ASD experience anxiety, challenging behaviour and/or mental health

difficulties. These things are not a symptom of ASD itself, but rather having ASD puts

you at risk for these kinds of difficulties.

People who have a diagnosis of ASD have difficulties

with social communication and interaction, as well as

certain rigidities or repetitiveness in their thinking,

language, or behaviour. This may include sensitivities to

sensory information. Difficulties must have been present

from an early age in some form in order to reach a

diagnosis.

ASD looks different for everyone as it is a ‘spectrum’ condition. Some people are

more severely affected than others in different areas.

For more information on “what is autism?” see the National Autistic

Society website: http://www.autism.org.uk/about/what-is/asd.aspx

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All children get worried or anxious sometimes. Children with ASD

are more likely to experience anxiety given the challenges they face

associated with their autism. This anxiety may show itself as

increased characteristics of ASD – such as increased obsessive or routinized

behaviour, stimulatory/ sensory seeking or avoidant behaviour, or increased

resistance to change. This anxiety may also show itself as increased withdrawal,

aggressive behaviour, self-injurious behaviour, or meltdowns.

What is causing the anxiety?

Common triggers for people with ASD include:

- Changes in routine or environment

- New situations or places

- Sensory sensitivities – e.g. to noise, light,

people, textures, flavours, movement, touch

- Physical sensations – e.g. pain, hunger, thirst, hot

- Fear or phobia – e.g. using toilet, balloons, certain objects or sounds

- Social situations – e.g. group work, 1:1 conversations

- Life events – e.g. exams, school work, relationships

Once you’ve identified potential triggers of anxiety for your child, you can then

change these and help your child cope with anxiety.

Help your child identify their feelings

o Visual aids to help your child recognise when they are

getting anxious (e.g. mood thermometers)

o What does their body feel like when anxious? (e.g.

sweaty palms, heart racing, hands flapping) Draw this

for them.

o Talk about emotions every day. Label how you are

feeling (both positive and negative) and label emotions

for your child. E.g. I am really excited to go to the

swimming pool today; I am feeling nervous about a

meeting at work today.

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Teach your child what to do when they feel anxious

Ideas include:

o Take 5 deep slow breaths

o Run around outside for 5 minutes

o A ‘calm box’ of calming sensory toys, books etc.

o A dark quiet corner or space (e.g. under a table, behind a curtain)

o Mindfulness techniques – e.g. focusing on the feeling of a sensory toy in

their hand.

o Listening to guided relaxation and mindfulness techniques:

� Lots available on YouTube

� Many Apps available to support relaxation and anxiety

management: e.g. ChillOutz®, MindShift, Calm etc.

The right technique for your child depends on their age, mood and sensory needs.

The following approaches help reduce anxiety and the occurrence of potentially

challenging behaviour, and are based on the principals of how we know people with

ASD think and understand the world.

PREPARE FOR CHANGE

o Prepare for changes by amending their usual timetable.

o Visiting a new place:

� Look on the internet for photos so your child

knows what to expect.

� Visual timetable of what will happen - e.g.

breakfast, car, museum, toilet, look at dinosaurs,

have sandwiches, car, home, dinner.

o Rehearse what they will do in new situations:

� practice what to do when they get there

� practice conversations they might have

o Do a practice run:

� Go to the place before your trip to see where it is, what it is like inside,

and how other people behave there

� E.g. going to the hairdressers a few days before their appointment and

watching what the other customers do.

o Remember – some children are better when they have been prepared in

plenty of time, some cope best if told that morning, some just before the

event. You know your child and what works for them.

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VISUAL COMMUNICATION

People with ASD tend to understand visual information much

more easily than spoken, particularly when feeling stressed,

angry or anxious. Therefore, a lot of techniques to support

people with ASD involve using visual communication - written

words, pictures, symbols or photos.

o PECS - The Picture Exchange Communication System

(PECS) is a method to help children with ASD both understand

others and communicate themselves using pictures instead of

spoken words.

o Visual timetables – to help the child know what is

happening that day, what is expected of them, and prepare for any

changes.

o First/ then boards – a shortened visual

timetable which can help with transitions and

concentration. For example, a child must ‘first’

do work, ‘then’ get a reward/ preferred activity,

e.g. to ride a bike.

o Social Stories – these are simple stories written specifically for your child

which help them to prepare for and cope with new or stressful situations

o Reduce Spoken Language – when your child is stressed or anxious, keep

spoken language to a minimum. They are unlikely to be able to process it.

Use simple phrases and single words until they are calmer.

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ENVIRONMENTAL ADJUSTMENTS

People with ASD can become overwhelmed by their environment as they tend to

see the details around them rather than the whole. They may struggle to know

which information to pay

attention to, and which to

tune out. Therefore in a

busy environment they can

find it very difficult to

concentrate and can feel

overwhelmed with sensory

overload. This is a very

stressful experience and

can result in high anxiety

and associated behaviour

including withdrawal,

avoidance, meltdowns, aggression, or self-harming behaviour.

The following advice is useful at home and also in the classroom.

Low arousal environments

- Keep environments tidy and free of clutter.

Put things in cupboards, boxes etc. unless

being used.

- Keep pictures and displays on the wall

simple, clean and unfussy.

- Sitting a child at the front of the classroom,

or facing a blank wall to complete tasks can

support their focus on their work.

- Only work to be completed should be on

the table.

- Keep noise to a minimum.

- Consider the sound of fans, heating, chairs on the floor, lighting etc. These

may be subtle to most people but loud and distracting to someone with ASD.

If child is experiencing extreme anxiety or meltdown, reduce sensory overload:

- Turn down lights

- Turn off music, radio, TV

- Lower voice and use single words

- Keep talking to absolute minimum until calm

- Move away from child, give them space ensuring they are safe

- Calmly put away objects that may be in reach and could be thrown or cause

injury, also reducing clutter.

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POSITIVE BEHAVIOUR SUPPORT

People with ASD and/or learning disabilities can find it difficult to transfer skills learnt

in one situation to another. They also find it difficult to make the link between their

behaviour and a subsequent punishment. Therefore punishments techniques are

often not effective to stop challenging behaviour.

Positive Behaviour Support is much more effective and involves:

o Understanding why the behaviour occurs,

o Making modifications to the environment and our own behaviour

o Changing how people respond to the challenging behaviour

o Giving the person skills that mean they no longer need to engage in the

challenging behaviour (e.g. effective communication skills)

o Teaching skills to cope with anxiety

o Reinforcing and rewarding positive, desirable behaviours, e.g. through use

of praise and rewards.

For further information on supporting anxiety and specific strategies see:

The National Autistic Society – Challenging Behaviour

http://www.autism.org.uk/about/behaviour/challenging-behaviour.aspx

Understood – for learning and attention issues: www.understood.org.uk Lots of

information including how to support anger and frustration in different age groups for

children with ASD, ADHD, learding and attention difficulties.

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Many children with ASD find it difficult to learn to use the toilet. There are many

reasons for this including:

o Sensory issues around using the bathroom (sounds, smells, bright light, touch)

o Difficulties recognising the sensation that they need to use the toilet

o Resistance to change - from the routine of using nappies to a new way of using

the toilet, or being expected to use different toilets when not at home

o Not fully understanding what is being asked of them

o Anxiety and fear – about noises (e.g. handrier, flush) or that doing a poo will hurt.

Ideas to support in toilet training:

o Use social stories and/or visual timetables to help the child understand what will

happen when they use the toilet (see image above)

o Use rewards and motivators to encourage them to use the toilet – e.g. reward

charts, sensory toys to play with while sitting on toilet, book to read while sitting

on toilet, sing songs.

o Think about your child’s sensory needs – if light is an issue, keep lights off; if

noise is an issue, turn off extractor fans; consider using ear defenders, gradual

exposure to using the flush (at first you flush it when they are outside the room,

gradually they can get inside the room and then do themselves as they get more

tolerant of the sound).

o If routine is important – put “toilet” on their visual timetable as part of their daily

routine.

If your child is constipated speak to your GP about medications or diet which may

help to make going to the toilet easier for them.

Additional information and resources can be found at:

Bladder and Bowel UK – children’s toilet

training resources section, “Toilet training

Children with Autism and Related Conditions”

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Many children with ASD have difficulties with sleep. This may be

due to several reasons, but the first place to start with helping to

treat sleep problems is ensuring good sleep hygiene. Here are

some suggestions for doing this a child with ASD:

Keep a consistent bed time routine every night. This will become familiar,

reassuring and help your child feel calm as well as prepare their brain for sleep.

Use a visual timetable to help your child know each stage of

the routine to follow.

Keep the routine to same time each night.

Do something calm at bedtime, such as reading a book,

gentle massage, a bath, listening to quiet music. Think about

your child’s particular sensory needs.

Bedtime routine might include – wash face, brush teeth, toilet, pyjamas, read

story, lights out.

Milk and bananas as a snack in the evening may be helpful, but the child should

not be too full.

Stop screen time (TV, tablet, video games, phones) at least an hour before

bedtime. Light from the screens affects the production of melatonin in the brain

which is necessary to fall asleep.

Keep their bedroom dark (black out curtains), quiet and cool.

Keep the bedroom tidy and clutter free to reduce distractibility and arousal levels.

Avoid caffeine – particularly in the afternoon/ evening. Caffeine is in tea and

coffee, but also in chocolate, chocolate drinks, and coca cola.

Avoid sugar in afternoon which can stimulate your child and

keep them awake.

Avoid naps in the afternoon.

Exercise during the day and exposure to sunlight can help to

regulate your child’s natural sleep/wake cycles.

Use a social story to explain why sleep is important and to reduce any anxieties

the child may have about what happens while they are asleep.

If the above routines do not help and your child continues to have difficulties, you

can speak to your Paediatrician or GP about medications. Melatonin is a sleep

hormone which we all release naturally. There is some evidence to suggest some

children with ASD do not produce this hormone effectively. This can sometimes be

given as a supplement to help children fall asleep and establish regular sleep/wake

cycles when used alongside sleep hygiene techniques. You must speak to your

paediatrician or GP about this,

For further information and links visit:

The National Autistic Society - www.autism.org.uk/about/health/sleep.aspx

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Some children with ASD have a very restricted diet.

Others develop routines or rituals around food and mealtimes

(e.g. will only eat dinner off a green plate, not a red one.)

Hunger itself can be a trigger to behavioural difficulties.

Some children with ASD develop obsessions or compulsions around food which can

result in them over-eating or over-drinking.

Some may eat or chew inedible things – this is known as ‘pica’.

Food plays both a crucial role in our health and

development, but also is an important tool for social

interactions and social events. There is a lot of emotion

involved in eating and feeding. As a parent or carer, our

instinct is to feed our children and watch them grow

healthily. Barriers to this can lead to significant anxiety both

for the individual but also in family members and can even

affect relationships.

If your child with ASD has challenges related to eating, it is important to try to work

out what is causing that challenge in order to help support them and change the

difficulties around eating:

In ASD, eating challenges may be related to:

- Restricted, repetitive behaviour – need for sameness. E.g. child will only

eat certain types of food or a very limited range.

- Sensory issues – sensitivity to certain textures or flavour which they cannot

tolerate, or which they crave.

- Anxiety over the social context of eating – e.g. going to a restaurant for a

meal, birthday party food scenario, sitting down with family at the table.

- Difficulties with attention and hyperactivity – being expected to sit down

for the period of the meal can be challenging for someone who needs to

frequently move around or is easily distracted.

- Digestive difficulties or food intolerances – can lead to avoidance or

dislike of certain foods or eating if it results in pain or discomfort. Some

children may overeat to ‘self-medicate’ internal discomfort, but this can make

the problem worse. Speak to your GP or Paediatrician if you are concerned

about this to rule this out or find appropriate treatment.

Good advice and further links for strategies to support challenges with eating

can be found at The National Autistic Society website:

www.autism.org.uk/about/health/eating.aspx

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Remember – we are all different. Although having ASD can pose challenges for

coping with everyday life, it can also bring many positives. Many very successful

people have (or would have received) a diagnosis of ASD. Google it…!

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www.raisingchildren.net.au Raising Children’s Network An Australian website with lots of information on everything related to ASD with practical advice and very useful videos of parents talking about their experiences. www.understood.org.uk Understood – for Learning and Attention Issues Lots of information including how to support anger and frustration in different age groups, supporting relationships and social skills, dealing with challenges at school. www.autism.org.uk The National Autistic Society Great source of information and support for everything related to ASD. Also provide training and a helpline for support and advice. www.bladderandboweluk.co.uk Bladder and Bowel UK All things toileting related. Search for specific guide for children with autism and related conditions. See also the “Autism Spectrum Disorder: A guide to local and national resources” in your Green Folder for full list of useful local and national resources, recommended reading and websites.

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Version 1: Compiled by Dr Sophie Ibbotson, Clinical Psychologist, and …….. Community Paediatrics, April 2018.

Central North-West London NHS Foundation Trust. Specialist Children’s Health Services. Milton Keynes.