Autism

East Sussex Local Offer

The autism page on the East Sussex Local Offer site can be found at Autism | East Sussex Local Offer and contains information about:

• What is Autism?
• Pathological demand avoidance
• Autism assessment and diagnosis
• Pre-autism pathway in East Sussex (you can also access this document direct visiting Pre-Autism Pathway (May 2024) (eastsussex.gov.uk)

What is Autism?

The National Autistic Society has a short video about autism detailing what autism is, what autism is like and lots of useful help, information and advice for parents/carers and schools.

The National Autistic Society also has a video about autism which is aimed at children and also shared on the East Sussex Local Offer Autism pages.

Support for schools

There are a range of approaches used in East Sussex schools to support the development of the skills needed to manage regulation of emotions.

Education East Sussex has created the following document to explain how the different approaches blend in practice, including: Therapeutic Thinking, Zones of Regulation, Nurture, ESLAs, Thrive

• Supporting emotional regulation in your setting.

Further support for parents and carers

Help for day to day life

Do

• use your child's name so they know you're speaking to them
• keep language simple and clear
• speak slowly and clearly
• use simple gestures, eye contact and pictures or symbols to support what you're saying
• allow extra time for your child to understand what you have said
• ask your autism assessment team if you can get help from a speech and language therapist (SLT)
• try ways to help them communicate, such as Signalong, Makaton or PECS
• read tips from the National Autistic Society on communicating with your child

Don't

• try not to ask your child lots of questions
• try not to have a conversation in a noisy or crowded place
• try not to say things that could have more than 1 meaning, such as "pull your socks up" or "break a leg"

Anxiety affects a lot of autistic children and adults. It can be caused by not being able to make sense of things going on around them, and feeling misunderstood or unaccepted by people who are not autistic.

Try to find out why your child's feeling anxious.

It might be because of:

• a change in routine – it might help to prepare your child for any change, such as a change of class at school
• difficulty identifying, understanding or managing their feelings
• a noisy or brightly coloured place – it might help to take your child to a calmer place, such as another room

If your child is often anxious, ask your GP about therapy, such as cognitive behavioural therapy (CBT), which may help.

Search The National Autistic Society's directory for counsellors experienced in helping people with autism and read more about managing anxiety from The National Autistic Society.

Helping with your child's behaviour

Some autistic children have behaviours such as:

• stimming – a kind of repetitive behaviour (such as flapping their hands or flicking their fingers)
• meltdowns – a complete loss of control caused by being totally overwhelmed.

If your child has these behaviours, read our advice about how to help your child's behaviour.

Eating difficulties

Many children are "fussy eaters".

Autistic children may:

• only want to eat foods of a certain colour or texture
• not eat enough or eat too much
• eat things which are not food (called pica)
• have problems with coughing or choking while eating
• be constipated, so they feel full even when they have not eaten much food.

It may help to keep a food diary, including what, where and when your child eats. This can help you notice any common issues your child has.

Speak to a GP or your autism team about any problems your child's having with eating.

The National Autistic Society has more about how to help with eating problems

Problems sleeping

Many autistic children find it hard to get to sleep, or wake up several times during the night.

This may be because of:

• anxiety
• sensitivity to the light from smartphones or tablets
• problems with the sleep hormone melatonin
• issues such as hyperactivity or a health condition that affects sleep.

You can help your child by:

• keeping a sleep diary of how your child sleeps to help you notice any common issues
• following the same bedtime routine
• making sure their bedroom is dark and quiet
• letting them wear ear plugs if it helps
• talking to a GP about how to manage health conditions that make sleep difficult, such as a food sensitivity or breathing problem.

If these tips do not help, talk to your autism team about creating a sleep plan to help your child's sleep behaviour.

Staying healthy

It's important that your child has regular check-ups with the:

• dentist
• optician
• doctors treating any other conditions your child has.

Children over 14 who also have a learning disability are entitled to an annual health check.

Do not be afraid to let staff know what they can do to make it easier to go for check-ups.

Find out more ways to stay healthy from the National Autistic Society

Friendships and socialising

Some autistic children find it hard to make friends.

There are some things you can do to help:

Do

• get ideas from other parents on autism forums and local support groups
• ask your child's school if they can help
• ask your autism team how to help your child communicate and socialise
• search the National Autism Society directory for local social groups that are autism-friendly
• read more advice about making friends from the National Autistic Society.

Don't

• do not put pressure on your child – learning social skills takes time
• do not force your child into social situations if they're OK being on their own.

Help with behaviour

Some autistic children may behave in ways that put a lot of strain on you and your family.

Some common autistic behaviours are:

• stimming (short for 'self-stimulating behaviour'), a kind of repetitive behaviour
• meltdowns, a complete loss of control over behaviour.

You may hear health professionals call some behaviours "challenging".

Some autistic children can also be physically or verbally aggressive. Their behaviour can be harmful to themselves or other people.

But remember, all autistic children are different and not every day will be challenging or stressful.

Ambitious about Autism has more information about behaviours that challenge

Why these behaviours happen

Many autistic children use a set of behaviours to help them manage their emotions and make sense of their environment. Sometimes they're done for enjoyment.

Some things that can be linked to these behaviours include:

• being over- or under-sensitive to things like bright lights, noises, touch or pain
• anxiety, especially when routines suddenly change
• not being able to make sense of what's going on around them
• being unwell or in pain.

These behaviours are not your or your child's fault.

Stimming

Stimming is a kind of repetitive behaviour.

Common stimming behaviours include:

• rocking, jumping, spinning, head-banging
• hand-flapping, finger-flicking, flicking rubber bands
• repeating words, phrases or sounds
• staring at lights or spinning objects.

Stimming is usually harmless. It may look odd to others, but you should not try to stop it if it's not causing any harm to you or your child.

Ambitious about Autism has more on repetitive behaviours and stimming

Meltdowns

Meltdowns are a complete loss of control caused by being totally overwhelmed.

If your child has a meltdown, the most important thing is to try to stay calm and keep them safe.

If you're worried your child might hurt themselves or others, try to hold them to keep them safe.

It's not always possible to prevent meltdowns, but there are some things you can do that may help at an early stage.

These include:

• letting your child wear headphones to listen to calming music
• turning down or removing bright lights
• distraction techniques, such as fiddle toys
• planning ahead for any change in routine, such as a different route to school.

It may help to keep a diary for a few weeks to see if you can spot any meltdown triggers that you can do something about.

The National Autistic Society has more on meltdowns

Speak to the autism care team or a GP if your child is:

• stimming all the time or having lots of meltdowns
• being bullied at school because of their behaviour
• aggressive, harming themselves or harming other people

If you're struggling to cope, your child may be referred for professional support.

Find out more

• Where to get autism support
• National Autistic Society: coping with sensory differences
• The Challenging Behaviour Foundation: information and guidance.

Things that can help you and your family

Do

• ask friends and family if they can help with day-to-day things or just be there to talk to
• get advice from other parents of autistic children or autistic adults – find out where to get support
• listen to other parents' stories – you can search online for blogs, videos and books
• ask your local council for a carer's assessment – you might be able to get extra support and financial benefits
• think about doing a course for parents of autistic children – such as the EarlyBird course from the National Autistic Society.

Don't

• do not feel guilty for taking time for yourself when you can – even just going for a walk on your own can help give you a break.

It's your choice when you want to tell your child about their autism.

Some parents do it straight away, while others wait until their child's a bit older. There's no right or wrong time.

When you tell your child, it may help to:

• do it when they're feeling calm or relaxed
• talk to them in a place where they feel comfortable, with no distractions
• explain they do not have an illness, but they might need extra support to help them with some things
• explain they might find some things harder than other people, and some things easier
• bring them to a support group to meet other autistic children.

The National Autistic Society has a guide for parents and carers with advice on how to tell your child about their diagnosis

Supporting your other children

Some children can find it hard if their brother or sister is autistic.

If you have other children, there are things you can do to help them.

Do

• make time for them whenever you can – try to do some activities with just them
• talk to them about what's going on and ask if they have any questions or worries
• let them have time on their own or with their friends – for example, sleepovers at friends' houses
• check the advice from Sibs, a charity for siblings of disabled children.

Don't

• do not be afraid to involve them in things like meetings with health professionals – it can help them understand what's going on.

Find out more

• National Autistic Society: family relationships
• National Autistic Society: support available for carers in England
• Ambitious about Autism: parent toolkit.

Schools

One of the main decisions you'll have to make is the type of school you want your child to go to.

You'll have to decide if you think your child should go to a:

• mainstream school – a regular school where your child may get support from a special educational needs co-ordinator (SENCO) if they need it
• special school – a school for children with special educational needs
• residential school – where children stay overnight
• independent school – also called a section 41 school, which is not funded by the local council, so you might have to pay fees yourself.

This can be a hard decision to make and there might not be lots of choice where you live.

Read more advice from:

• National Autistic Society: deciding between a mainstream or special school
• National Autistic Society: choosing a school in England.

The National Autistic Society's education rights helpline can give advice about your child's rights, education law and how to resolve problems at school. Use the online form or call 0808 800 4102.

If your child can go to a mainstream school or nursery, you can help them get support if you think they need it.

1. Speak to staff at the nursery or school

Speaking to staff at their nursery or school is the best place to start.

You could speak to:

• your child's teacher
• the school's SENCO.

Talk to them about your child's needs. For example, if they need help with communication, learning or social skills.

2. Ask what support your child can get

Ask the teacher or SENCO what support they can provide.

This may be things like:

• extra teaching support for your child
• different ways of teaching that are better for your child
• separate lessons to help your child improve their skills.

This may be enough for some autistic children. Other children may need extra support.

3. Get extra support if your child needs it

If your child needs extra support, they'll need an education, health and care (EHC) plan.

This is a document from your local council. It says what education and health needs your child has and what support they should get.

An EHC plan can either help:

• the school apply for extra money so they can support your child
• you apply for a place at a school that's better for your child.

Your child does not need to have been diagnosed with autism to get extra support.

Find out more about EHC plans:

• Ambitious about Autism: education, health and care plans
• National Autistic Society: education, health and care plans in England

1. Ask your local council for an EHC assessment of your child's special education needs and disabilities (SEND). An EHC assessment can also be requested by your child's school, a health visitor, doctor, or relative.
2. Have an assessment. The council will speak to you, the school and health professionals to work out what support your child needs.
3. Read the draft plan. You can comment on the plan and add details, like the type of school you want your child to go to.
4. Agree on the final plan.

The whole process can take a few months. Ask the school what support they can offer while it's happening.

Find your local council on GOV.UK

The council may decide your child does not need an EHC assessment or plan. If this happens, it should tell you why.

If you do not agree with its decision, you have the right to appeal.

You'll be told how to do this when you hear from the council.

To get a place at a special school, your child will usually need an EHC plan.

As part of an EHC plan, you have the right to tell your local council what type of school you'd like your child to go to, or name a particular school you prefer.

The council can only refuse this if there's a clear reason why the school is unsuitable.

Find out more about choosing a school with an EHC plan on the Independent Provider of Special Education Advice (IPSEA) website.

Getting support for your child can be a long and complicated process.

You can get advice about it from:

• Council for Disabled Children: find your local information, advice and support (IAS) service
• National Autistic Society: education rights helpline.

It may also help to speak to other parents of autistic children.

Find out where you can get autism support

Going to school can be an anxious time for any child. Some autistic children might find it very hard.

You can get advice about it from:

• National Autistic Society: starting or switching school
• National Autistic Society: difficulties at lunch and break times
• National Autistic Society: homework
• National Autistic Society: exams
• National Autistic Society: dealing with bullying
• National Autistic Society: exclusion from school in England.