A lifelong developmental disability, autism spectrum disorder (ASD) is a condition that affects social interaction, communication, interests and behaviour. Asperger syndrome and childhood autism are types.
Overview
Symptoms
Causes
Diagnosing
Treatment
Adults with autism
Overview
The main features of ASD typically start to develop in childhood, although the impact of these may not be apparent until there is a significant change in the person’s life, such as a change of school.
In the UK, it’s estimated that about one in every 100 people has ASD.
There is no ‘cure’ for ASD, but a wide range of treatments including education and behaviour support can help people with the condition.
ASD can cause a wide range of symptoms, which are often grouped into two main categories:
- Problems with social interaction and communication – including problems understanding and being aware of other people’s emotions and feelings; it can also include delayed language development and an inability to start conversations or take part in them properly.
- Restricted and repetitive patterns of thought, interests and physical behaviours – including making repetitive physical movements, such as hand tapping or twisting, and becoming upset if these set routines are disrupted.
Children, young people and adults with ASD are often also affected by other mental health conditions such as attention deficit hyperactivity disorder (ADHD), anxiety or depression.
About half of those with ASD also have varying levels of learning difficulties. However, with appropriate support many people can be helped to become independent.
Children with more severe symptoms and learning difficulties are likely to need more additional care and assistance to live independently as adults, although there is no reason why they and their families cannot enjoy a good quality of life.
Autism features can often be recognised in children before the age of two or three years. However for many, the signs will often only become more noticeable as they get older.
See your GP or health visitor if you notice any of the symptoms of ASD, or if you’re concerned about your child’s development. You can discuss your concerns together in depth before deciding whether your child should be referred for specialist assessment. It can also be helpful to discuss your concerns with your child’s nursery or school.
Adults can also be diagnosed with ASD. See your GP if you are concerned. They may use a screening tool to check if you have signs of ASD and they can refer you to appropriate services in your area.
The exact cause of ASD is unknown, but it is thought that several complex genetic and environmental factors are involved. In some cases, an underlying condition may contribute to ASD.
In the past, some people believed that the MMR (mumps, measles and rubella) 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.
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 people with ASD and their families understand the condition and work out what kind of support they need.
A number of autism-specific services are available to help adults with ASD find advice and support, get involved in leisure activities and find somewhere they are comfortable.
Some adults with ASD may have difficulty finding a job because of the social demands and changes in routine that working involves. However, they can get support to help them find a job that matches their abilities and skills.
Symptoms of Autism
Autism spectrum disorder (ASD) can cause a wide range of symptoms, and there are many different ways those symptoms can be grouped.
It is useful for parents to know the signs and symptoms of autism and Asperger syndrome that are related to their child’s stages of development.
See your GP if you notice any of the symptoms of ASD or if you’re concerned about your child’s development. You can discuss your concerns together in depth before deciding whether your child should be referred for a specialist assessment.
Read more about diagnosing autism spectrum disorder.
Signs of ASD in pre-school children:
The features of ASD that often develop in pre-school children are explained below.
Spoken language
• delayed speech development (for example, not speaking at least 10 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 their age like, such as birthday parties
• preferring to play alone, rather than asking others to play with them
• rarely using gestures (such as pointing) 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 extremely 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
Signs and symptoms of ASD in school-age children:
Features of ASD that can develop in older children and teenagers are explained below.
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 conversationResponding 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 their age like
• rarely using gestures or facial expressions when communicating
• avoiding eye contact
Behaviour
• having repetitive movements such as flapping their fingers, 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 extremely 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
Other conditions associated with ASD
It is common for people with ASD to have symptoms or aspects of other conditions such as:
• attention deficit hyperactivity disorder (ADHD)
• Tourette’s syndrome or other tic disorders
• epilepsy
• dyspraxia (a developmental co-ordination disorder)
• obsessive compulsive disorder (OCD)
• generalised anxiety disorder
• depression
• bipolar disorder
• a learning disability
If your child has any of these problems, they may require separate treatment, such as medication or cognitive behavioural therapy (CBT), in addition to their treatment for ASD.
Causes of autism
The exact causes of autism spectrum disorder (ASD) are unknown, although it is thought that several complex genetic and environmental factors are involved.
The causes of ASD can be described in two ways:
• Primary ASD (also known as idiopathic ASD) – where no underlying factors can be identified to explain why ASD has developed.
• Secondary ASD – where an underlying medical condition or environmental factor thought to increase the risk of ASD is identified.
About 90% of cases of ASD are primary, and about 10% are secondary.
Risk factors
Factors thought to increase the risk of developing ASD, known as ‘risk factors’, can usually be divided into five main categories:
• Genetic factors – certain genetic mutations may make a child more likely to develop ASD.
• Environmental factors – during pregnancy, a child may be exposed to certain environmental factors that could increase the risk of developing ASD.
• Psychological factors – people with ASD may think in certain ways that contribute towards their symptoms.
• Neurological factors – specific problems with the development of the brain and nervous system could contribute to the symptoms of ASD.
• Other health conditions – certain health conditions associated with higher rates of ASD.
Each of these factors is described in more detail below.
Genetic factors
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 have an increased risk of developing the condition themselves and it is common for identical twins to both develop ASD.
At present, however, no specific genes linked to ASD have been identified and there are currently no tests that can screen for ‘ASD genes’. However, the specialist seeing your child may screen them for genetic conditions that have similar features to ASD, depending on any additional symptoms your child has.
Environmental factors
Some researchers have argued that ASD is not primarily caused by genes, but also by environmental factors. The theory is that a person is born with a vulnerability to ASD, but the condition develops only if that person is exposed to a specific environmental trigger.
Some suggested environmental factors include being born before 35 weeks of pregnancy (premature birth) and exposure to alcohol or medications such as sodium valproate (a medication 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.
Psychological factors
Much of the research into the possible psychological factors behind ASD is based on a concept known as ‘theory of mind’ (TOM). This is a person’s ability to understand other people’s mental states, recognising that each person they meet has their own set of intentions, beliefs, emotions, likes and dislikes. To put it simply, it’s seeing the world through another person’s eyes.
It is thought that most children without ASD have a full understanding of theory of mind by around the age of four. Children with ASD develop a limited understanding or no understanding at all of theory of mind.
This may be one of the root causes of their problems with social interaction and may explain some of the psychological features of ASD, such as a tendency towards needing an order or routine and getting lost in detail rather than seeing the bigger picture.
Neurological factors
In people without conditions affecting the brain and nervous system (see below), medical theories and brain imaging studies carried out in people with ASD suggest that the connections between parts of the brain called the cerebral cortex, the amygdala and the limbic system may have become scrambled or ‘over connected’.
As a result, people with ASD may suddenly experience an extreme emotional response when seeing a trivial object or event. This may be a reason why people with ASD are fond of routines, as they have found a set pattern of behaviour that does not provoke an extreme emotional response. It may also explain why they often become very upset if that routine is suddenly broken.
This confusion of emotional responses may also explain why children with ASD are interested in topics that most children would find boring, such as train timetables or have altered or exaggerated responses to sensory stimulation such as tastes, sounds, noises, smells.
Other health conditions
Some conditions that are known to increase the risk of ASD include:
• Fragile X syndrome – an uncommon genetic condition that usually causes certain facial and bodily characteristics, such as a long face, large ears and flexible joints.
• Tuberous sclerosis – a rare genetic condition that causes multiple non-cancerous tumours to grow throughout the body, including the brain.
• Rett syndrome – a rare genetic condition that mostly affects girls. It causes symptoms of ASDs, and difficulties with physical movement and development.
• Neurofibromatosis – a number of genetic conditions that cause tumours to grow along your nerves. The main types are neurofibromatosis type 1 and neurofibromatosis type 2.
• Muscular dystrophy – a group of inherited genetic conditions that gradually cause the muscles to weaken, leading to an increasing level of physical disability.
• Down’s syndrome – a genetic condition that typically causes some level of learning disability and a characteristic range of physical features.
• Cerebral palsy – conditions that affect the brain and nervous system, causing problems with a child’s movement and coordination.
• Infantile spasms – a type of epilepsy that develops while a child is still very young (usually before they are one year old).
• Intellectual disability – about half of those diagnosed with autism have an IQ below 70 (the average IQ is 100).
Misconceptions about the causes of ASD
There are a number of things that have been linked to ASD in the past, but extensive research has found no evidence to suggest any of these contribute to the condition.
These include:
• the MMR (mumps, measles and rubella) vaccine
• a compound containing mercury called thiomersal, which is used as a preservative in some vaccines
• the way a person has been brought up
• diet – such as eating gluten or dairy products
Diagnosing Autism
In most cases, parents notice the symptoms of autism spectrum disorder (ASD) when their child is around two or three years old.
In some instances, mild cases may not be detected until adulthood.
Diagnosing ASD in children
If you are worried about your child’s development, visit your GP. If appropriate, they can refer you to a health professional or team who may specialise in diagnosing ASD, or someone who has access to such a team. They will make a more in-depth assessment.
This health professional may be:
• a psychologist – a health professional with a psychology degree, plus further training and qualifications in psychology
• a psychiatrist – a medically qualified doctor with further training in psychiatry
• a paediatrician – a doctor who specialises in treating children
• a speech and language therapist – a specialist in recognising and treating communication problems
Some local health authorities now use multidisciplinary teams. These are made up of a combination of professionals who work together to make an assessment.
Assessment
There are no individual tests to confirm a diagnosis of ASD, a diagnosis is instead based on the range of features your child is showing.
The type of assessment carried out often depends on things such as access to additional information (for example nursery or school records) and the skills of the professional or team seeing your child.
A detailed assessment for ASD may or may not be required. If one is carried out, this will involve a number of steps, which are explained below.
For most children:
• Any existing information about your child’s development, health and behaviour may be sought from relevant people, such as your GP, nursery or school staff.
• A detailed physical examination will be carried out to rule out possible physical causes of your child’s symptoms, and some children may be referred for further tests, such as testing their blood for genetic conditions with similar features to ASD.
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 can be drawn up.
• Your child may be asked to attend a series of appointments so that specific skills and activities can be observed and assessed. This is known as a focused observation. Focused observation looks at language, behaviour, the pattern of your child’s thinking (known as their cognitive ability) and how they interact with others.
Once this process is complete, a diagnosis of ASD may be confirmed. If a diagnosis of ASD is not confirmed during an assessment, but your child later develops more significant signs of the condition, a re-assessment may be carried out.
After diagnosis
Parents may react in different ways when ASD has been confirmed. Some parents feel relieved because they now understand the reasons behind their child’s behaviour and can begin to treat them.
Other parents feel an immense sense of shock and disbelief, as they are naturally worried about what the diagnosis means for their child’s future.
However, the diagnosis offers an insight into your child’s individuality and personality. In turn, it gives you a chance to guide their development and growth.
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 on its website.
You can also the read the National Institute for Health and Care Excellence (NICE) guidelines on diagnosing autism in children and young people and managing autism in children and young people.
Diagnosis of 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.
Getting a diagnosis of ASD will help 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 on the process of being diagnosed with ASD for adults.
If you’re already seeing a specialist for other reasons, you may want to ask them for a referral instead. However, some local NHS Health Boards do not provide NHS funding for diagnosing ASD in adults.
Treatment for autism
There is currently no ‘cure’ for autism spectrum disorder (ASD). However, a range of specialist education and behavioural programmes (often referred to as interventions) can be effective in improving the skills of children with ASD.
There are many different types of intervention for ASD and it can be hard to judge which one will work best for your child as each person with ASD is affected differently.
Some types of intervention can involve hours of intensive work, and this is not always possible for many families because of the practical, emotional and financial commitments necessary.
The National Autism Society website has information on the many different approaches, therapies and interventions available for ASD.
Any intervention should focus on important aspects of your child’s development. These are:
• communication skills – such as the ability to start conversations
• social interaction skills – such as the ability to understand other people’s feelings and respond to them
• cognitive skills – such as encouraging imaginative play
• academic skills – the ‘traditional’ skills a child needs to progress with their education, such as reading, writing and maths
Treatment for ASD often involves a team of different specialists working together, such as a paediatrician, a psychologist, a psychiatrist, a speech and language therapist and an occupational therapist.
Medication
No medication is available to treat the core symptoms of ASD, but medication may be able to treat some of the related symptoms or conditions, such as:
• problems sleeping – which may be treated with a medication such as melatonin
• depression – which may be treated with a type of medication called a selective serotonin reuptake inhibitor (SSRI)
• epilepsy – which may be treated with a type of medication called an anticonvulsant
• attention deficit hyperactivity disorder (ADHD) – which may be treated with a medication such as methylphenidate
• aggressive and challenging behaviour, such as tantrums or self-harming – which may be treated with a type of medication called an antipsychotic if the behaviour is severe, or if psychological treatments (see above) have not helped
However, these medications can have significant side effects and are usually only prescribed by a doctor specialising in the condition being treated. If medication is offered, your child will usually have a check-up after a few weeks to see if it is helping.
Parental Support
The parents of a child with ASD play a crucial role in supporting their child and helping them improve their skills. If your child is diagnosed with ASD, it can be useful to find out as much as you can about life with the condition. The National Autistic Society has an excellent range of resources and advice about living with autism on its website.
Adults with autism
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 is never too late to be diagnosed with ASD, although it is not always easy because some local NHS authorities do not provide NHS funding for diagnosing ASD in adults.
Read more about diagnosing autism spectrum disorder in adults or see the National Autistic Society website for a range of diagnosis information for adults.