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Health

Autism

todayNovember 1, 2021 1

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Autism

Autistic people may act in a different way to other people

Autistic people may:

  • find it hard to communicate and interact with other people
  • find it hard to understand how other people think or feel
  • find things like bright lights or loud noises overwhelming, stressful or uncomfortable
  • get anxious or upset about unfamiliar situations and social events
  • take longer to understand information
  • do or think the same things over and over

Autism is not an illness

Being autistic does not mean you have an illness or disease. It means your brain works in a different way from other people.

It’s something you’re born with or first appears when you’re very young.

If you’re autistic, you’re autistic your whole life.

Autism is not a medical condition with treatments or a “cure”. But some people need support to help them with certain things.

Autistic people can live a full life

Being autistic does not have to stop you having a good life.

Like everyone, autistic people have things they’re good at as well as things they struggle with.

Being autistic does not mean you can never make friends, have relationships or get a job. But you might need extra help with these things.

Autism is different for everyone

Autism is a spectrum. This means everybody with autism is different.

Some autistic people need little or no support. Others may need help from a parent or carer every day.

Some people use other names for autism

There are other names for autism used by some people, such as:

  • autism spectrum disorder (ASD) – the medical name for autism
  • autism spectrum condition (ASC) – used instead of ASD by some people
  • Asperger’s (or Asperger syndrome) – used by some people to describe autistic people with average or above average intelligence

It’s not clear what causes autism

Nobody knows what causes autism, or if it has a cause.

It can affect people in the same family. So it may sometimes be passed on to a child by their parents.

Autism is not caused by:

  • bad parenting
  • vaccines, such as the MMR vaccine
  • diet
  • an infection you can spread to other people

Autistic people can have any level of intelligence

Some autistic people have average or above average intelligence.

Some autistic people have a learning disability. This means they may find it hard to look after themselves and need help with daily life.

Autistic people may have other conditions

Autistic people often have other conditions, like:

  • attention deficit hyperactivity disorder (ADHD) or dyslexia
  • anxiety or depression
  • epilepsy

How to get diagnosed

1. Talk to someone for advice

If you or your child have signs of autism, the next step is to talk to someone about it.

You could speak to:

  • a GP
  • a health visitor (for children under 5)
  • any other health professional you or your child see, such as another doctor or therapist
  • special educational needs (SENCO) staff at your child’s school

Ask them if they think it’s a good idea to refer you for an autism assessment.

An assessment is done by autism specialists. It’s the only way to find out if you or your child are autistic.

Tips for when you speak to someone

Do

  • write a list of the signs of autism you think you or your child have and bring it with you
  • ask people who know you or your child well (like friends, family or teachers) if they have noticed any possible signs you could put on your list
  • bring a pen and paper so you can take notes
  • bring your child or someone who knows you well with you if you think it might help (you do not have to)

Don’t

  • try not to talk too much about other things – autism should be the main thing you talk about

2. Have an autism assessment

An autism assessment is where a team of autism specialists check if you or your child are autistic.

An assessment team may:

  • ask about any problems you or your child are having
  • watch how you or your child interact with other people
  • speak to people who know you or your child well, such as family, friends, your GP or your child’s teachers

At the end of the assessment, you’ll be given a report saying if you or your child are autistic.

Find out about autism assessments

How a diagnosis can help

Parents and children

For parents and children, a diagnosis can help you:

Adults

For adults, a diagnosis can help you:

  • understand why you might find some things harder than other people
  • explain to others why you see and feel the world in a different way
  • get support at college, university or work
  • get some financial benefits

If you find it hard to get diagnosed

It’s not always easy to get an autism assessment. Waiting times can also be very long.

If you’re finding it hard to get an assessment, you could ask to speak to someone else, like another GP – this is called getting a second opinion.

It may also help to speak to other people who have been in a similar situation.

 

What happens during an autism assessment

How to get an assessment

You need to be referred for an assessment by someone like a GP or special educational needs (SENCO) staff at your child’s school.

You may have to wait a few months to get an appointment.

 

What you can do while you wait for an assessment

If you think you or your child need support at school, home or at work, you can start getting help before having an assessment.

You can:

  • ask a GP if the assessment team can suggest any support groups
  • find a local support group using the National Autistic Society services directory
  • talk to teachers or special educational needs (SENCO) staff at your child’s school
  • speak to student support services at college or university
  • speak to your manager or human resources at work
  • ask your local council for a needs assessment to see what support they can recommend

What happens during an autism assessment

You may have 1 or more appointments with a team of different professionals.

For children

The assessment team may:

  • ask you about your child’s development, such as when they started talking
  • watch how you and your child interact, and how your child plays
  • read any reports sent by the GP and the nursery or school

A member of the team may also visit your child’s school to watch them in class and at break time.

For adults

The assessment team may:

  • ask you to fill in a questionnaire about yourself and any problems you have
  • speak to someone who knew you as a child to find out about your childhood
  • read any reports from the GP about other health problems you may have

Getting the result

When the assessment is finished, you’ll be given a report saying what the team found.

You may be given it by the team or get it in the post.

The report will say:

  • if you or your child are autistic – it might say something like you “meet the criteria for autism spectrum diagnosis”
  • what you or your child might need help with – such as social interaction, communication, behaviours or sensitivity to lights, colours and sounds
  • what you or your child are good at

Sometimes the report can be hard to understand as it can be full of terms used by healthcare professionals.

Ask the assessment team if you need any help.

Autism is a lifelong condition, so the report will be used throughout childhood and into adulthood.

If you do not agree with the result

When you get the report, you may:

  • be told you or your child are not autistic
  • be asked to wait until your child is a bit older to be assessed again, as the signs of autism may not be clear
  • be given a diagnosis you do not agree with, such as a learning disability

Ask the assessment team why they have given the diagnosis they have.

If you still do not agree, you can ask the GP to refer you to another team for a second opinion.

Remember that a second opinion may say the same thing.

Autism and everyday life

Find information and advice about living as an autistic person or caring for an autistic child.

 

How to help your child with day to day life

How to help your child communicate

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 or pictures to support what you’re saying
  • allow extra time for your child to understand what you have said
  • ask the autism assessment team if you can get help from a speech and language therapist (SLT)
  • read more tips on communicating with your child from the National Autistic Society

Don’t

  • try not to ask your child lots of questions
  • try not to have a conversation when it’s noisy
  • try not to say things that could have different meanings, such as “pull your socks up” or “break a leg”

Dealing with anxiety

Anxiety affects a lot of autistic children and adults. It’s often caused by not being able to make sense of things going on around them.

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
  • 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 autism assessment team or child mental health team for a referral to a counsellor or therapist with experience of autism.

 

 Helping with your child’s behaviour

Some autistic children have behaviours like:

  • 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 with 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
  • have problems with coughing or choking while eating
  • be constipated, so they feel full even when they’re not

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

Speak to a GP or the autism assessment 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

You can help your child by:

  • keeping a sleep diary of how your child sleeps to help you spot any common issues
  • sticking to the same bedtime routine
  • making sure their bedroom is dark and not noisy
  • letting them wear ear plugs if it helps

If these tips do not help, talk to a GP, who may prescribe a medicine called melatonin to help your child’s sleep.

Get more healthy sleep tips for children

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

Don’t

  • do not put too much 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

How to help with your child’s behaviour

Common types of behaviour in autistic children

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

You may hear health professionals call some behaviours “challenging”.

These behaviours include:

  • stimming – a kind of repetitive behaviour
  • meltdowns – a complete loss of control over behaviour

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.

Why these behaviours happen

Many autistic children have difficulties with communication, which can affect their behaviour.

Some things that can cause these behaviours include:

  • being oversensitive to things like bright lights or loud noises
  • being undersensitive to things like 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 stands for “self-stimulating behaviour”. It’s 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 there’s no need to stop it if it’s not causing any problems for you or your child.

Ambitious about Autism has more on stimming and repetitive behaviours.

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, 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.

These include:

  • letting your child wear headphones to listen to calming music
  • turning down or removing bright lights
  • 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.

Non-urgent advice:Speak to the autism assessment 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, you may be referred to a professional who can help.

 

 Autism and everyday life

Find information and advice about living as an autistic person or caring for an autistic child

Advice about the things you can do to help your child with things like communication and anxiety

Information and advice about how you can help with your autistic child’s behaviour

Advice about how caring for an autistic child can affect you and your family, and what help is available

Advice about issues like choosing a school and helping your child cope with school

Information and advice about how your child’s care may change when they become an adult

Find out about about ‘treatments’ for autism that do not work and can be harmful

Advice about going for check-ups if you or your child are autistic

Newly diagnosed: things to help

Give yourself time

People react to a diagnosis of autism in different ways.

For some, it’s a relief to find out why they or their child think, feel and act the way they do. For others, it can be a shock.

Try to give yourself time to come to terms with the diagnosis.

Remember:

  • help and support is available
  • even if things are hard now, they can get better
  • you or your child are still the same person as before
  • autism is not an illness or disease with treatments or a “cure”
  • autistic people have things they’re good at as well as things they need help with

Find help and support services

You might feel alone when you or your child are first diagnosed.

But there are places you can get support.

You can get help from:

  • local support groups
  • national charities
  • other autistic people or parents on social media and forums
  • your school, college or workplace
  • your local council
  • your GP or the autism assessment team that diagnosed you

Find out about support you can get if you’re autistic

Listen to other people’s stories

Some people find it helpful to find out about other people’s stories of autism.

The charity healthtalk.org has:

You could also search online for autism blogs, videos or books.

Important

Remember, autism is different for everyone. What happened to other people might not be the same for you or your child.

Look out for other health problems

Autism is not an illness. But many autistic people also have other conditions.

These are not always checked for during an autism assessment.

See a GP if you have any concerns about your or your child’s health. They can help you get any extra care you need.

Find out about other conditions that affect autistic people

Find out more about autism

It might help you and your family to find out more about autism.

There can be quite a lot to take in. You do not have to read everything.

You can get trusted information from:

Where to get support

Friends and family

Telling people close to you about your or your child’s autism diagnosis can help them understand what this means.

They may be able to help with:

  • everyday things so you have more time to focus on yourself or your child
  • emotional support

National charitiesNational Autistic Society

For parents of autistic children, young autistic people and autistic adults.

Ambitious about Autism

For autistic children and young people, their parents and carers.

Information:

It may also help to listen to other people’s experiences of autism on healthtalk.org.

Local support groups

The assessment team that diagnosed you or your child should give you information on local support groups.

You can also search for local groups using:

Social media and forums

There are many people with experience of autism offering support and sharing their stories on forums and social media.

You do not have to talk to others in online groups, but it can be helpful to look at what they’re saying.

A good place to start is the groups run by autism charities. But bear in mind the NHS does not monitor these sites.

Important

Comments on social media and forums are often based on personal experience and should not be taken as advice that would help you or your child.

Facebook

How to use Facebook if you’re new to it.

Twitter

How to use Twitter if you’re new to it.

Forums and communities

Your school, college or workplace

You can get support to make things easier for you or your child.

Find out what help is available at:

  • nursery or school – speak to teachers or special educational needs (SENCO) staff
  • college or university – speak to student support services
  • work – speak to your manager and human resources (HR)

Your local council

You can get some support and financial benefits from your local council.

What’s available depends on your situation.

For children and young people

For people under 25, ask your council about their “local offer”.

This is the name for the support they provide for young people with special educational needs.

Every council has to have a local offer.

You can also get advice about the local offer from your local special educational needs advice service.

For adults

If you’re an autistic adult or care for an autistic adult, ask your council for a needs assessment.

This is an assessment to find out:

  • what problems you’re having with everyday life
  • what support or financial benefits you might be able to get

For parents and carers

If you look after someone who’s autistic, ask your council for a carer’s assessment.

This is an assessment to find out what support or financial benefits you might be able to get to help you care for an autistic person.

GPs and autism assessment teams

If you think you or your child needs help from a health professional, speak to a GP or the assessment team that diagnosed you.

They may be able to refer you to a specialist who can help, such as:

  • an occupational therapist
  • a speech and language therapist
  • a mental health specialist

Information:

Find out more:

Written by: Mandy Law

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