Asperger syndrome

Introduction
Symptoms of autism spectrum disorder
Causes of autism spectrum disorder
Diagnosing autism spectrum disorder
Treating autism spectrum disorder

Autism spectrum disorder (ASD) is the name for a range of similar conditions, including Asperger syndrome, that affect a person's social interaction, communication, interests and behaviour.

In children with ASD, the symptoms are present before three years of age, although a diagnosis can sometimes be made after the age of three.

It's estimated that about 1 in every 100 people in the UK has ASD. More boys are diagnosed with the condition than girls.

There's no "cure" for ASD, but speech and language therapy, occupational therapy, educational support, plus a number of other interventions are available to help children and parents.

Signs and symptoms

People with ASD tend to have problems with social interaction and communication.

In early infancy, some children with ASD don’t babble or use other vocal sounds. Older children have problems using non-verbal behaviours to interact with others – for example, they have difficulty with eye contact, facial expressions, body language and gestures. They may give no or brief eye contact and ignore familiar or unfamiliar people.

Children with ASD may also lack awareness of and interest in other children. They’ll often either gravitate to older or younger children, rather than interacting with children of the same age. They tend to play alone.

They can find it hard to understand other people's emotions and feelings, and have difficulty starting conversations or taking part in them properly. Language development may be delayed, and a child with ASD won’t compensate their lack of language or delayed language skills by using gestures (body language) or facial expressions.

Children with ASD will tend to repeat words or phrases spoken by others (either immediately or later) without formulating their own language, or in parallel to developing their language skills. Some children don’t demonstrate imaginative or pretend play, while others will continually repeat the same pretend play.

Some children with ASD like to stick to the same routine and little changes may trigger tantrums. Some children may flap their hand or twist or flick their fingers when they’re excited or upset. Others may engage in repetitive activity, such as turning light switches on and off, opening and closing doors, or lining things up.

Children and young people with ASD frequently experience a range of cognitive (thinking), learning, emotional and behavioural problems. For example, they may also have attention deficit hyperactivity disorder (ADHD), anxiety, or depression.

About 70% of children with ASD have a non-verbal IQ below 70. Of these, 50% have a non-verbal IQ below 50. Overall, up to 50% of people with "severe learning difficulties" have an ASD.

The main features of autism spectrum disorder (ASD) are problems with social communication and interaction.

See your GP or health visitor if you notice any of the following signs of ASD in your child or if you’re concerned about your child’s development.

Signs of ASD in pre-school children

Spoken language

delayed speech development (for example, speaking less than 50 different words by the age of two), or not speaking at all
frequent repetition of set words and phrases
speech that sounds very monotonous or flat
preferring to communicate using single words, despite being able to speak in sentences

Responding to others

not responding to their name being called, despite having normal hearing
rejecting cuddles initiated by a parent or carer (although they may initiate cuddles themselves)
reacting unusually negatively when asked to do something by someone else

Interacting with others

not being aware of other people’s personal space, or being unusually intolerant of people entering their own personal space
little interest in interacting with other people, including children of a similar age
not enjoying situations that most children of their age like, such as birthday parties
preferring to play alone, rather than asking others to play with them
rarely using gestures or facial expressions when communicating
avoiding eye contact

Behaviour

having repetitive movements, such as flapping their hands, rocking back and forth, or flicking their fingers
playing with toys in a repetitive and unimaginative way, such as lining blocks up in order of size or colour, rather than using them to build something
preferring to have a familiar routine and getting very upset if there are changes to this routine
having a strong like or dislike of certain foods based on the texture or colour of the food as much as the taste
unusual sensory interests – for example, children with ASD may sniff toys, objects or people inappropriately

Signs and symptoms of ASD in school-age children

Spoken language

preferring to avoid using spoken language
speech that sounds very monotonous or flat
speaking in pre-learned phrases, rather than putting together individual words to form new sentences
seeming to talk "at" people, rather than sharing a two-way conversation

Responding to others

taking people’s speech literally and being unable to understand sarcasm, metaphors or figures of speech
reacting unusually negatively when asked to do something by someone else

Interacting with others

not being aware of other people’s personal space, or being unusually intolerant of people entering their own personal space
little interest in interacting with other people, including children of a similar age, or having few close friends, despite attempts to form friendships
not understanding how people normally interact socially, such as greeting people or wishing them farewell
being unable to adapt the tone and content of their speech to different social situations – for example, speaking very formally at a party and then speaking to total strangers in a familiar way
not enjoying situations and activities that most children of their age enjoy
rarely using gestures or facial expressions when communicating
avoiding eye contact

Behaviour

repetitive movements, such as flapping their hands, rocking back and forth, or flicking their fingers
playing in a repetitive and unimaginative way, often preferring to play with objects rather than people
developing a highly specific interest in a particular subject or activity
preferring to have a familiar routine and getting very upset if there are changes to their normal routine
having a strong like or dislike of certain foods based on the texture or colour of the food as much as the taste
unusual sensory interests – for example, children with ASD may sniff toys, objects or people inappropriately

Getting a diagnosis

The main features of ASD – problems with social communication and interaction – can often be recognised during early childhood.

Some features of ASD may not become noticeable until a change of situation, such as when the child starts nursery or school.

See your GP or health visitor if you notice any of the signs and symptoms of ASD in your child, or if you're concerned about your child's development. It can also be helpful to discuss your concerns with your child's nursery or school.

See your GP or health visitor if your child is showing symptoms of autism spectrum disorder (ASD), or you're worried about their development.

If appropriate, your GP can refer you to a healthcare professional or team who specialise in diagnosing ASD, or someone who has access to such a team.

The specialist or specialist team will make a more in-depth assessment, which should be started within three months of the referral.

If you're referred to an individual specialist, they may be a:

psychologist – a healthcare professional with a psychology degree, plus further training and qualifications in psychology
psychiatrist – a medically qualified doctor with further training in psychiatry
paediatrician – a doctor who specialises in treating children
speech and language therapist – a specialist in recognising and treating communication problems

Some local health authorities use multidisciplinary teams. These are a combination of specialists who work together to make an assessment.

Assessment

A diagnosis of ASD is based on the range of features your child is showing.

For most children:

information will be needed from your GP, nursery or school staff, plus speech and language and occupational therapists, about your child's development, health and behaviour
a speech and language therapist, and often an occupational therapist, will carry out an assessment
a detailed physical examination will need to be carried out to rule out possible physical causes of your child's symptoms, such as an underlying condition like neurofibromatosis or Down's syndrome
the assessment will include a check for any coexisting physical health conditions and mental health problems

In addition, for some children:

you may be asked to attend a series of interviews so a detailed family history and the history of your child's development and behaviour can be drawn up
your child may be asked to attend a series of appointments so specific skills and activities can be observed and assessed

Once this process is complete, a diagnosis of ASD may be confirmed.

After diagnosis

When a child is diagnosed with ASD, many parents are keen to find out as much as they can about the condition. The National Autistic Society has an excellent range of resources and advice.

Diagnosing ASD in adults

Some people with ASD grow up without their condition being recognised, but it's never too late to get a diagnosis. Some people may be scared of being diagnosed because they feel it will "label" them, and lower other people's expectations of them.

But there are several advantages to getting a diagnosis. It helps people with the condition and their families understand ASD and decide what sort of support they need. A diagnosis may also make it easier to access autism-specific services and claim benefits.

See your GP if you think you may have ASD and ask them to refer you to a psychiatrist or clinical psychologist. The National Autistic Society website has information about being diagnosed with ASD if you're an adult.

If you're already seeing a specialist for other reasons, you may want to ask them for a referral instead.

You can also read the NICE guidelines about the recognition, referral, diagnosis and management of adults on the autism spectrum (PDF, 267kb).

Caring for someone with ASD

Being a carer isn't an easy role. When you're busy responding to the needs of others, it can affect your emotional and physical energy, and make it easy to forget your own health and mental wellbeing.

If you're caring for someone else, it's important to look after yourself and get as much help as possible. It's in your best interests and those of the person you care for.

Read more about care and support, including information on:

carers' assessments
support and the benefits carers are entitled to
carers' breaks and respite care

You can also call the Carers Direct helpline on 0300 123 1053.

What causes ASD?

The exact cause of ASD is unknown, but it's thought that several complex genetic and environmental factors are involved.

In the past, some people believed the MMR vaccine caused ASD, but this has been investigated extensively in a number of major studies around the world, involving millions of children, and researchers have found no evidence of a link between MMR and ASD.

The exact cause of autism spectrum disorder (ASD) is currently unknown.

It's a complex condition and may occur as a result of genetic predisposition (a natural tendency), environmental or unknown factors.

Genes

Most researchers believe that certain genes a child inherits from their parents could make them more vulnerable to developing ASD.

Cases of ASD have been known to run in families. For example, younger siblings of children with ASD can also develop the condition, and it's common for identical twins to both develop ASD.

No specific genes linked to ASD have been identified, but it may be a presenting feature of some rare genetic syndromes, including Fragile X syndrome, Williams syndrome and Angelman syndrome.

Environmental triggers

Some researchers believe that a person born with a genetic vulnerability to ASD only develops the condition if they're exposed to a specific environmental trigger.

Possible triggers include being born prematurely (before 35 weeks of pregnancy), or being exposed in the womb to alcohol or to certain medication, such as sodium valproate (sometimes used to treat epilepsy during pregnancy).

No conclusive evidence has been found linking pollution or maternal infections in pregnancy with an increased risk of ASD.

Other health conditions

Below are some other conditions known to be associated with ASD:

muscular dystrophy – a group of inherited genetic conditions that gradually cause the muscles to weaken
Down's syndrome – a genetic condition that typically causes a learning disability and a range of physical features
cerebral palsy – conditions that affect the brain and nervous system, causing problems with movement and co-ordination
infantile spasms – a type of epilepsy that develops while a child is still very young (usually before they're one year old)
neurofibromatosis – a number of genetic conditions that cause tumours to grow along the nerves (the main types are neurofibromatosis type 1 and neurofibromatosis type 2)
the rare genetic conditions fragile X syndrome, tuberous sclerosis and Rett syndrome

Autism in adults

Some people with ASD had features of the condition as a child, but enter adulthood without ever being diagnosed.

However, getting a diagnosis as an adult can often help a person with ASD and their families understand the condition, and work out what type of advice and support they need.

For example, a number of autism-specific services are available that provide adults with ASD with the help and support they need to live independently and find a job that matches their skills and abilities.

Some people with autism spectrum disorder (ASD) grow up without their condition being recognised, sometimes through choice.

However, a diagnosis can make it easier to access a range of support services that may be available locally.

It's never too late to be diagnosed with ASD, although it's not always easy because some local NHS authorities don't provide NHS funding for diagnosing ASD in adults.

Read more about diagnosing ASD in adults, or see The National Autistic Society website for further information about autism diagnosis for adults .

Treatment and support

With a proper diagnosis, adults with ASD may be able to access local autism support services, if available in their area. You can search for services for adults using the Autism Services Directory.

The healthcare professionals who diagnose you with ASD should be able to provide more information and advice about the care and support services available to you.

Read about assessing your care and support needs.

Examples of programmes that may be available in your local area include:

social learning programmes – to help you cope in social situations
leisure activity programmes – these involve taking part in leisure activities, such as games, exercise, or going to the cinema or theatre with a group of people
skills for daily living programmes – to help you if you have problems carrying out daily activities, such as eating and washing

Adults with ASD may also benefit from some of the treatments offered to children with ASD, such as psychological therapy and medication.

Read more about the help and support available for people with ASD.

Benefits

Adults diagnosed with ASD can also claim some benefits, such as the Personal Independence Payment (PIP). This is the new benefit replacing Disability Living Allowance (DLA) for people with a disability who are aged 16 to 64.

You can find out more about benefits for adults with autism on The National Autistic Society website, or you can visit GOV.UK to read more about benefits.

Accommodation

Adults with ASD can live in all types of housing. Some people may be suited to a residential care home, while others may prefer to live on their own and receive home support. Some people with ASD live completely independently.

Supported living can work very well for some adults with ASD, because it means they can choose a place to live in the community, either alone or with other people, with the support they need. They may need 24-hour care, or they may only need help with important tasks for a couple of hours each week.

The level of support an adult with ASD needs will be decided after your local authority's social services carry out an assessment, and it's agreed with the person and their carer.

Employment

It can be difficult for people with ASD to find a job. For example, they may find the work environment too noisy, or travelling to work may be too stressful because of the crowds. Sudden changes in routine can also be upsetting.

However, in the right job and with the right support, people with ASD have much to offer. They're often accurate, reliable, and have a good eye for detail. Being in a working environment can help the individual's personal development tremendously.

Read about disability in the workplace and the Equality Act.

If you're having problems getting a job or staying in a job, you may be able to access a supported employment programme in your local area. These programmes can help you write your CV and job applications, and prepare you for interviews. They can also help you choose which jobs would suit you and provide training for that role.

Those providing the programme can also advise employers about any changes that need to be made to the workplace to suit people with ASD, as well as supporting you and the employer before and after you've started work.

See The National Autistic Society website to find help with getting a job.

Making decisions

Someone with ASD may have the capacity to make some decisions (for example, to decide what items to buy at the local shop), but lack capacity to make other decisions (for example, making decisions about complex financial issues).

Where someone is judged not to have the capacity to make a specific decision after they've had a capacity assessment, that decision can be taken for them – but it must be in their best interests.

For more information, read What is the Mental Capacity Act?