ASD is a group of conditions that affect how your child develops and makes sense of the world around them. They may have problems communicating and interacting with other people. And their interests, activities and behaviour may become very repetitive and restricted to routines.
ASD includes the conditions known as autism and Asperger’s syndrome. The word ‘spectrum’ is used because, although many people with ASD share similar difficulties, the way and the extent to which these affect them varies. See our frequently asked questions below for more information about Asperger’s syndrome.
There are over half a million people in the UK with ASD (around one in 100). Boys are four times more likely to be diagnosed with ASD than girls. About half of people with ASD also have a learning disability and may need specialist support. Those with autism may also have strengths – some people may have excellent memory for facts and figures, although this isn’t true for everyone with ASD.
ASD is a lifelong condition – this means that if your child has ASD they’ll grow up to be an adult with the condition. There is no ‘cure’, but there’s a wide range of things that can be done to help a person with ASD learn and develop. While many people with ASD need specialist support throughout their lives, some grow up to live independently with jobs and their own families.
People with autism spectrum disorder (ASD) vary enormously, but will share the main features of the condition. These include difficulties in social communication and interaction with others, and behaviour which becomes repetitive, restricted and routine.
You may notice some of the features and behaviour of ASD when your child is very young. However, features may not become obvious until your child experiences new social settings, such as going to school. Although they will have had features as children, some people with milder symptoms don’t recognise these might be due to ASD until they are adults.
People with ASD have problems in communicating with others. This affects their verbal skills (speaking and listening) and non-verbal skills (eye contact and body language). For example, your child may:
- not make eye contact, or be unwilling to
- not be able to speak, speak only a few words or start to speak very late
- use fewer facial expressions and gestures
- find it difficult to hold a two-way conversation
- not understand other people’s body language, or use strange body language like facing away when speaking
- not understand jokes and sarcasm
People with ASD often find it hard to recognise or understand what other people are feeling and may have trouble expressing their own feelings. This can mean it’s hard to make friends and fit in socially. For example, someone with ASD may:
- not look for comfort from other people, even when distressed
- prefer to spend time on their own
- find it difficult to accept simple social rules, like what it’s OK to talk about in public
- behave strangely because they can’t express how they’re feeling
Behaviour, interests and activities
People with ASD all have restricted, repetitive behaviours, interests or activities. For some this might include movements such as rocking or spinning, or flapping their hands over and over. Your child may develop a special and overwhelming interest in something from a fairly young age. Rules, rituals and routines may be very important to them. These may include how they greet people, which route they want to take when they travel or what they eat. They may become distressed if these routines aren’t followed or need to impose those routines on other people. Change may make them anxious.
People with ASD may also have extreme sensitivity in one or more of the five senses – sight, sound, smell, touch and taste. For instance they might find certain background sounds unpleasantly loud and distracting.
Many children with ASD also have other conditions. These can include attention deficit hyperactivity disorder (ADHD), or dyspraxia (difficulty organising thoughts and movements). Some children with ASD also have dyslexia (a learning difficulty that can cause problems with reading, writing and spelling).
There’s a very wide range of other symptoms and conditions that people with ASD may have. If you’re concerned about whether a symptom could be linked with ASD, ask your GP. You could also check the websites mentioned in our resources section for more information about the symptoms and signs of ASD.
Getting a diagnosis of ASD can be a good thing, as it may help explain some of the difficulties your child has been having. It may also mean that you can now get the support you need. Children can be diagnosed with ASD when they’re quite young, but it’s not unusual for older children and adults to be diagnosed too.
If you notice your child might be showing signs of ASD, see your GP or health visitor. Your GP will ask about your child’s behaviour and may examine them. If your GP thinks your child may have ASD, they may refer you to a specialist or child development centre. You may have to wait some time before you actually go for the assessment.
You and your child may see a number of different people including a paediatrician, child psychiatrist, speech therapist, occupational therapist and psychologist. This can mean having several appointments over several weeks. There are a number of different assessments which experts can use to assess your child’s behaviour and how they interact with other people. These may include tests, interviews and examinations. The health professional carrying out the test should explain what it’s for, and what will happen. Don’t be afraid to ask if you need more explanation or have questions.
After the assessments you may get a detailed report, which should state clearly what the diagnosis is. Your GP will get a copy of this report. With your permission, the report may also be shared with your child’s school or social services to help them offer you the support you need.
There isn’t a cure for ASD, however, there are many different ways that your child can be helped to manage. These are called interventions and are treatments or therapies which aim to improve the quality of life for you and your child. There are over 1000 interventions which have been used in ASD. Lots of research is going on to try and find out which work the best. But at the moment, specialists may differ in their recommended treatment.
Some of the main approaches to managing ASD are listed below.
- Making adjustments to the physical environment such as the lighting, amount of noise, colour of walls and personal space available.
- Alternative communications – this involves teaching your child to communicate using other types of communication apart from speech. They include sign language and Picture Exchange Communication System (PECS), where your child is taught to communicate with picture cards.
- Behaviour therapies. There is a wide range of these programmes, which aim to encourage appropriate behaviour and to discourage inappropriate behaviour. They include Applied Behaviour Analysis (ABA) which improves skills by rewarding good behaviour.
- Therapies that help with specific problems, for example speech and language therapy, physiotherapy to improve movement and co-ordination, and occupational therapy to help develop daily living skills.
It’s important to remember that one therapy may work for one child but not for another, as all children have different needs and abilities. The best treatment for your child will depend on how they are affected. Individual therapies can be tailored to your child.
Making a choice about what’s best for your child can be difficult as there are so many options. Talk to your specialist for information about the different approaches to managing ASD. You can also find out more about some of the many interventions used in ASD from The National Autistic Society and Research Autism. See our resources section for the contact details of these charities.
Medicines can’t treat ASD as such, but they can help to ease some of the symptoms. Your child’s specialist may prescribe a medicine to reduce symptoms such as agitation, aggression, hyperactive behaviour or sleep problems. Always ask your specialist, pharmacist or GP for advice and read the patient information leaflet that comes with your child’s medicine.
If you have autism spectrum disorder (ASD), you will have always had it. However, some people with ASD don’t get a diagnosis of the condition until they’re a teenager or an adult. If you have ASD you may have had difficulties fitting in at school, both in lessons and in making friends. You may have found it particularly stressful changing schools, leaving home or changing jobs. Some people may only get a diagnosis of ASD in mid-life after a series of failed relationships and failed jobs.
However, it’s important to remember that many adults with ASD learn to cope with life in their own ways. They may have successful relationships, have children and do fulfilling jobs.
If you think you might have ASD you may want to seek a medical diagnosis. Not everyone chooses to do this – it’s up to you. Being diagnosed with ASD may help you to understand some of the experiences and difficulties you’ve had in your life. It may also help you get support if you need it.
Getting a diagnosis of ASD as an adult can be difficult. The first step is to see your GP. It may help you to find out as much as you can about ASD before you see your GP. This will help you clearly explain to them why you think you may have it. If your GP thinks you may have ASD they will refer you to a specialist such as a psychiatrist or clinical psychologist. However, it can sometimes be hard to find a specialist with experience in diagnosing autism in adults.
There’s a very wide range of treatments or interventions which may help you if you’re an adult with ASD. These may include help with improving your social interactions, training in life skills and specially designed leisure activities. You may be able to get help with managing your anger, if that’s a problem for you. There are also some medicines which your doctor may recommend to help with irritability. Ask your specialist what might help you in your particular circumstances.
If you have ASD as an adult, or you’re caring for an adult with ASD, you may be able to get practical help and support. This will be through your local authority, and might include help in the home, help with travel and certain leisure or educational facilities. Contact your local authority to find out what is available. You may need to ask them to do an assessment of your needs.
You may also be able to claim benefits such as the Personal Independence Payment (PIP) to help with daily living. To find out more and make a claim contact the Department for Work and Pensions (DWP) on 0800 917 2222.
Help and support covering all areas of ASD is freely available for people with ASD from charities. See our resources section for contact details. There are also many local groups offering friendship and support.
We don’t understand the exact causes of autism spectrum disorder (ASD) yet – it’s still being investigated. ASD may be caused by a combination of factors that affect the development of the nervous system. These include the genes inherited from our parents, as we know that ASD runs in families. See our frequently asked questions below for more information about genetic causes of ASD.
ASD is not caused by the way a child is brought up or a person’s social circumstances. And lots of studies have found there is no link between ASD and the MMR (measles, mumps and rubella) vaccine.
Looking after a child with autism spectrum disorder (ASD) can be challenging and hard work at times. Health professionals involved in your child’s care should provide help and support for you and your child’s carers. For example, respite breaks give you a chance to rest while somebody else looks after your child – these may be provided by social services.
Some families are entitled to benefits, such as disability living allowance (DLA) to help cover the expenses involved in caring for a child with ASD. If your child qualifies for DLA you may also be entitled to Carer’s Allowance.
If your child has ASD, he or she is entitled to extra help at school, college and university. Your child can also get help at times of transition, when they move from one school to another. Children with ASD often need an educational assessment and special support. There are various different types of school that your child may attend. These include mainstream schools (perhaps with a special unit), special schools and independent schools. See our frequently asked questions below for more information about education and ASD.
You may sometimes find that it’s difficult to get the services that you and your child are entitled to. You can get help by contacting charities such as The National Autistic Society. They have more information about living with ASD, and how to get the help and support you need. See our resources section below for contact details. You may also find it helpful to get information and support from local autism support groups.
Children with autism spectrum disorder (ASD) like routine, and trips out can be very stressful for them and the whole family. Take time to prepare your child in advance when going to new places so that they know what to expect. Build up the length of trips to new places gradually. And give your child a chance to relax and be calm afterwards.
Children with an ASD often prefer fixed routines and can react badly when this is disrupted.
Some children may be oversensitive to certain sensory information, such as smells, lights or sounds. A trip to somewhere new with your child, such as the shops, can often be a stressful experience. Try keeping a diary to help you identify what triggers your child’s anxiety. For instance, are some times of the day better than others? Which types of places that you visit cause problems?
Also, try to prepare your child in advance. For example, show a picture of the place where you’re going (e.g. a shop) and explain what you’ll do when you get there. You may find it helps to use a timetable to explain what will happen during your trip. This might include how you’ll get there, when you’ll eat and when you’ll return home.
If your child still becomes distressed after you’ve tried to prepare them for your visit, you could try the following.
- Use books or stories about going to new places.
- Learn some relaxation techniques to use.
- Use earmuffs, earplugs, headphones or sunglasses if noise or bright/flickering lights cause your child to feel anxious.
- Use a timer so that your child can see how much longer the trip will last.
- Let your child bring a comforter, small toy or just a familiar object to distract them.
- Increase your child’s tolerance to new events by gradually building up to them.
After the visit, allow your child to have some calm time, such as winding down in the car or at home.The National Autistic Society website has useful tips for planning a range of specific visits including to the doctor, places of worship and the hairdresser. See our resources section for contact details.
If your child has autism spectrum disorder (ASD) then their school should provide extra help and support. The help that your child can receive differs in each county in the UK. Check with your local authority to see what kind of help is available.
If your child has ASD, their school should put a programme in place to provide them with extra support. The type of help your child receives may include:
- extra support from a learning support assistant or teaching assistant on an individual basis or in small groups
- special learning materials and equipment
- further specialist help from an educational psychologist, a specialist teacher and/or a speech and language therapist. (That is, a health professional who specialises in identifying and managing speech and communication problems.)
There will be a Special Educational Needs Co-ordinator (SENCO) at your child’s school who will be able to give you further information and advice.
If the school is unable to meet your child’s needs, you can request an assessment from your local authority. In England, this now leads to the development of an Education, Health and Care plan, which is sometimes just called a ‘plan’. This will show what specialist help your child needs and how this can be provided. Other parts of the UK have slightly different systems – ask your local authority to explain theirs.The National Autistic Society has an Education Rights Service which can give you advice and support in getting the best education for your child. See our resources section for contact details.
Children with autism spectrum disorder (ASD) may attend a range of different schools depending on their needs and your own preferences. It will also depend on what is available in your area.
Children with ASD may be taught at:
- a mainstream school – your child is taught alongside other pupils. However, the school may provide extra support for your child for a set number of hours a week
- a base or unit within a mainstream school – pupils with an ASD are educated separately, but are able to access the mainstream school when appropriate
- a specialist school – these are schools specifically for children with special educational needs
- a residential school – your child stays overnight and will be provided with support 24 hours a day
- an independent school – these aren’t maintained by the local authority, so you may need to pay for them
- home – you may teach your child at home yourself if you wish
The schools suitable for your child may differ between areas, so it’s a good idea to check with your local authority first. They will be able to provide you with a list of schools in your area.
The National Autistic Society has an Education Rights Service which can give you advice and support in getting the best education for your child. See our resources section for contact details.
Asperger’s syndrome is a lifelong disability similar to autism, although there are some differences. A child with Asperger’s syndrome doesn’t have the same problems with developing language that a child with autism may. And those with Asperger’s syndrome are usually of average or above average intelligence. It used to be thought of as a separate condition. But now Asperger’s syndrome is included with autism under the heading of autism spectrum disorder (ASD).
People with ASD – including those with autism and Asperger’s syndrome – share certain features. They all have problems in communicating and interacting with others. And they all show behaviours, interests and activities which become repetitive, routine and restricted. See our section on symptoms of ASD above for more details.
About half of people with ASD have a learning disability, but those with Asperger’s syndrome have average or above average intelligence. If your child has Asperger’s syndrome they probably won’t have the delay in starting to speak that a child with autism might.
Children with Asperger’s syndrome tend to be diagnosed later in life than children with autism. Their language skills and intelligence may help them cope, until a big life change like going to secondary school or university causes problems. Some people are diagnosed as adults, and some are never diagnosed.
If you think you, or your child may have Asperger’s syndrome, see your GP.
No, autism spectrum disorder (ASD) isn’t something that your child can grow out of – it continues to affect a person throughout their life. Treatment and support can help to minimise the impact an ASD has on your child’s life.
ASD is a lifelong condition. It doesn’t go away by itself and there isn’t a cure. If your child has ASD, they will still have the disorder when they become an adult.
Adults who have ASD can live a full and satisfying life with the right support. Around one in seven adults with ASD lives independently. Another one in seven (or slightly more) lives alone with community support. Some adults with ASD have relationships, marry and raise children, just like anyone else. However, some adults need lifelong care.
There has been a lot of interest in special diets for children with autism spectrum disorder (ASD). At the moment experts still aren’t sure whether any of these can help. If you choose to give your child a special diet it’s important to get advice from your doctor or dietitian. That way you can make sure you’re giving your child enough of the important foods they need to stay healthy.
Many different diets have been suggested and used as a treatment for ASD. There are diets which include certain foods thought to be helpful, and others which exclude foods thought to be harmful. For instance, one which excludes certain foods is the ‘gluten and casein-free’ diet. (Gluten is a protein found in wheat, rye and barley; casein is a protein found in cow’s, goat’s and sheep’s milk).
At the moment, experts can’t be sure whether any of these diets help people with ASD, or which types of people might benefit from them. Because of this, your doctor may not recommend them.If you’re thinking about giving your child a special diet, discuss this with your doctor. You can ask them to refer you to a dietitian (a healthcare professional who specialises in diet and nutrition). They can help you plan a diet so that it gives your child all the important foods they need to stay healthy.
We don’t fully understand the causes of autism spectrum disorder (ASD) yet – it’s probably due to a number of factors acting together. Most experts agree that your genes are one of these factors. However, there isn’t a genetic test for ASD yet.
ASD often runs in families. So there are many families where more than one member of the extended family has ASD. Other members of the family may have milder problems related to ASD. The genetic tendency towards ASD is passed down through the generations. However, there are also some families who have only one person with ASD. This is probably due to a one-off change in a gene affecting just one person.
If you have one child with ASD then there’s a greatly increased chance that your other children will have it. There’s about a one in 10 chance that a brother or sister of a person with ASD will have the condition too.
There’s no genetic test for ASD yet. However, sometimes ASD is linked with a specific genetic disease. These include Rett’s syndrome, Fragile X syndrome and tuberous sclerosis, which may be identified by genetic testing. So it may be worth testing people with ASD to make sure they don’t have one of these conditions as well as ASD.If you want to know more about the link between genes and autism you can find out more from The National Autistic Society’s website. See our resources section for contact details.
- Autism spectrum disorder. BMJ Best Practice. www.bestpractice.bmj.com, published 16 February 2015
- Autism in children. NICE Clinical Knowledge Summaries. cks.nice.org.uk, published June 2014
- Autism diagnosis in children and young people: recognition, referral and diagnosis of children and young people on the autism spectrum. National Institute for Health and Care Excellence (NICE), 2011. www.nice.org.uk
- Autism: the management and support of children and young people on the autism spectrum. National Institute for Health and Care Excellence (NICE), 2013. www.nice.org.uk
- Autism: recognition, referral, diagnosis and management of adults on the autism spectrum. National Institute for Health and Care Excellence (NICE), 2012. www.nice.org.uk
- Map of Medicine. Autism spectrum disorder (ASD) in children. International View. London: Map of Medicine; 2014 (Issue 1)
- Millward C, Ferriter M, Calver SJ et al. Gluten- and casein-free diets for autistic spectrum disorder. Cochrane Database of Systematic Reviews 2008, Issue 2. doi: 10.1002/14651858.CD003498.pub3
- About autism. The National Autistic Society. www.autism.org.uk, published 2 July 2015
- Living with autism. The National Autistic Society. www.autism.org.uk, published 2 July 2015
- Working with people with autism. The National Autistic Society. www.autism.org.uk, published 15 July 2015
- Autism. Research autism. www.researchautism.net, published 3 August 2015
- Issues. Research autism. www.researchautism.net, published 3 August 2015
- Interventions. Research autism. www.researchautism.net, published 17 February 2015
- Personal Independence Payment (PIP). Department for Work and Pensions. www.gov.uk
- Asperger syndrome. Medscape. www.emedicine.medscape.com, published 26 March 2014
- Autism. Food fact sheet. BDA: The Association of UK Dietitians. www.bda.uk.com, 2015
- Abrahams, BS, Geschwind DH. Advances in autism genetics: on the threshold of a new neurobiology. Nat Rev Genet 2008; 9(5):341–55. doi:10.1038/nrg2346
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