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What is Autism and what Parents and carers need to know.

Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colour.

How do people with autism see the world?

People with autism have said that the world, to them, is a mass of people, places and events which they struggle to make sense of, and which can cause them considerable anxiety.

In particular, understanding and relating to other people, and taking part in everyday family and social life may be harder for them. Other people appear to know, intuitively, how to communicate and interact with each other, and some people with autism may wonder why they are 'different'.

About autism

Autism is a lifelong developmental disability. It is part of the autism spectrum and is sometimes referred to as an autism spectrum disorder, or an ASD. The word 'spectrum' is used because, while all people with autism share three main areas of difficulty, their condition will affect them in very different ways. Some are able to live relatively 'everyday' lives; others will require a lifetime of specialist support.

The three main areas of difficulty which all people with autism share are sometimes known as the 'triad of impairments'. They are:

  • difficulty with social communication
  • difficulty with social interaction
  • difficulty with social imagination.

It can be hard to create awareness of autism as people with the condition do not 'look' disabled: parents of children with autism often say that other people simply think their child is naughty; while adults find that they are misunderstood.

Three main areas of difficulty

The characteristics of autism vary from one person to another but are generally divided into three main groups. These are:

  • difficulty with social communication
  • difficulty with social interaction
  • difficulty with social imagination.

People with autism have difficulties with both verbal and non-verbal language. Many have a very literal understanding of language, and think people always mean exactly what they say. They can find it difficult to use or understand:

  • facial expressions or tone of voice
  • jokes and sarcasm
  • common phrases and sayings; an example might be the phrase 'It's cool', which people often say when they think that something is good, but strictly speaking, means that it's a bit cold.

Some people with autism may not speak, or have fairly limited speech. They will usually understand what other people say to them, but prefer to use alternative means of communication themselves, such as sign language or visual symbols.

Others will have good language skills, but they may still find it hard to understand the give-and-take nature of conversations, perhaps repeating what the other person has just said (this is known as echolalia) or talking at length about their own interests.

It helps if other people speak in a clear, consistent way and give people with autism time to process what has been said to them.

Difficulty with social interaction

Socialising doesn't come naturally - we have to learn it.

People with autism often have difficulty recognising or understanding other people's emotions and feelings, and expressing their own, which can make it more difficult for them to fit in socially. They may:

  • not understand the unwritten social rules which most of us pick up without thinking: they may stand too close to another person for example, or start an inappropriate subject of conversation.
  • appear to be insensitive because they have not recognised how someone else is feeling
  • prefer to spend time alone rather than seeking out the company of other people
  • not seek comfort from other people.
  • appear to behave 'strangely' or inappropriately, as it is not always easy for them to express feelings, emotions or needs.

Difficulties with social interaction can mean that people with autism find it hard to form friendships: some may want to interact with other people and make friends, but may be unsure how to go about this.

Difficulty with social imagination

We have trouble working out what other people know. We have more difficulty guessing what other people are thinking.

Social imagination allows us to understand and predict other people's behaviour, make sense of abstract ideas, and to imagine situations outside our immediate daily routine. Difficulties with social imagination mean that people with autism find it hard to:

  • understand and interpret other people's thoughts, feelings and actions.
  • predict what will happen next, or what could happen next.
  • understand the concept of danger, for example that running on to a busy road poses a threat to them.
  • engage in imaginative play and activities: children with autism may enjoy some imaginative play but prefer to act out the same scenes each time.
  • prepare for change and plan for the future.
  • cope in new or unfamiliar situations.

Difficulties with social imagination should not be confused with a lack of imagination. Many people with autism are very creative and may be, for example, accomplished artists, musicians or writers.

Characteristics of autism

The characteristics of autism vary from one person to another but as well as the three main areas of difficulty, people with autism may have:

  • love of routines
  • sensory sensitivity
  • special interests
  • learning disabilities.

Love of Routines

  • The world can seem a very unpredictable and confusing place to people with autism, who often prefer to have a fixed daily routine so that they know what is going to happen every day. This routine can extend to always wanting to travel the same way to and from school or work, or eat exactly the same food for breakfast.

  • Rules can also be important: it may be difficult for a person with autism to take a different approach to something once they have been taught the 'right' way to do it. People with autism may not be comfortable with the idea of change, but can cope well if they are prepared for it in advance.

Sensory sensitivity

  • Rowan loves art but he hates wearing a shirt to protect his clothing - the feeling of the fabric against his skin causes him distress. We have agreed with his school that he can wear a loose-fitting apron instead.

  • People with autism may experience some form of sensory sensitivity. This can occur in one or more of the five senses - sight, sound, smell, touch and taste. A person's senses are either intensified (hypersensitive) or under-sensitive (hypo-sensitive).

  • For example, a person with autism may find certain background sounds, which other people ignore or block out, unbearably loud or distracting. This can cause anxiety or even physical pain.

  • People who are hypo-sensitive may not feel pain or extremes of temperature. Some may rock, spin or flap their hands to stimulate sensation, to help with balance and posture or to deal with stress.

  • People with sensory sensitivity may also find it harder to use their body awareness system. This system tells us where our bodies are, so for those with reduced body awareness, it can be harder to navigate rooms avoiding obstructions, stand at an appropriate distance from other people and carry out 'fine motor' tasks such as tying shoelaces.

Special interests

  • My art activity has enabled me to become a part of society. When there is something that a person with autism does well, it should be encouraged and cultivated.

  • Many people with autism have intense special interests, often from a fairly young age. These can change over time or be lifelong, and can be anything from art or music, to trains or computers. Some people with autism may eventually be able to work or study in related areas. For others, it will remain a hobby.

A special interest may sometimes be unusual. One person with autism loved collecting rubbish, for example; with encouragement, this was channelled into an interest in recycling and the environment.

Learning disabilities

  • I have a helper who sits with me and if I'm stuck on a word she helps me. It makes a big difference.

  • People with autism may have learning disabilities, which can affect all aspects of someone's life, from studying in school, to learning how to wash themselves or make a meal. As with autism, people can have different 'degrees' of learning disability, so some will be able to live fairly independently - although they may need a degree of support to achieve this - while others may require lifelong, specialist support. However, all people with autism can, and do, learn and develop with the right sort of support.

Other conditions are sometimes associated with autism. These may include attention deficit hyperactivity disorder (ADHD), or learning difficulties such as dyslexia and dyspraxia.

Who is affected by autism?

Autism is much more common than most people think. There are over half a million people in the UK with autism - that's around 1 in 100 people.

People from all nationalities and cultural, religious and social backgrounds can have autism, although it appears to affect more men than women. It is a lifelong condition: children with autism grow up to become adults with autism.