Improving access to social care for adults with autism
What autism is
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. (2)
Autism* is a lifelong developmental disability. Some people have severe autism, and require a lot of specialist support; others exhibit mild characteristics of autism, and live largely independent lives. This means that autism is often referred to as a spectrum condition. Many people with autism also have a learning disability, but a roughly equal number do not. This latter group is sometimes known as having high-functioning autism, and many have a diagnosis of Asperger's Syndrome, which is a form of autism. Other diagnoses on the autistic spectrum include atypical autism and PDD-NOS (pervasive developmental disorder - not otherwise specified).
All people with autism have difficulties in three areas. This is known as the 'triad of impairments'. People with autism have:
- difficulties with social interaction, and find it hard to instinctively understand, or recognise, how other people are feeling. They find it hard also to express their own emotions. This can make getting on with people problematic and highly stressful.
- difficulties with social communication, and struggle with verbal and non-verbal language. This varies enormously - some have no speech while others have language but it is impaired, for example they may take what is said literally, and misunderstand body language, humour and double meanings. Some people use limited body language.
- difficulties with social imagination,and without a clear structure do not easily conceive of alternatives to their daily routine, imagine what might happen next in their lives or organise themselves. They find it hard to interpret what others may be thinking, or to engage in imaginative activities. People may have limited coping strategies and apply them inappropriately, or may not be able to identify risks consistently.
As a result, people with autism typically struggle with the rules of social engagement, such as when to speak, when to laugh and when to empathise. They might therefore prefer their own company, so avoiding unpredictable and stressful situations, even though they may still crave affection. While many people with autism have good language skills, others will speak little or not at all. People with autism typically prefer communication to be simple and clear.
Many people with autism also have (2):
- sensory sensitivity - over- or under-sensitivity to things such as light, sound and heat, or certain tastes, textures or smells
- problems with motor skills or balance
- a need for structure - perceiving the world as a muddled chaos, people with autism sometimes impose their own routines in order to help make sense of it
- narrow interests - some people with autism can develop a very close interest in a particular topic or pastime, often becoming extremely knowledgeable in it. This can be a strength that opens career prospects, and differs from obsessive behaviours and rituals, which usually result from anxiety. Special interests may also result in some risky behaviours such as spending money excessively or exclusively on those interests, or spending excessive time taking part in an interest and missing meals or sleep
- a focus on detail - this is also a strength, which can enable high levels of achievement in certain fields. It can also inhibit understanding of the 'bigger picture' in relationships and contexts
- mild difficulties in one area of the triad and severe difficulties in another
- skills and needs that fluctuate from day to day and moment to moment
- learned ways to mask their difficulties, or have carers who help to mediate difficulties so well that they are not initially apparent to a professional assessing them.
The spectrum nature of the condition and the idiosyncrasy of some people's needs make it unhelpful to over-generalise about autism. They also make providing services to groups of people with autism a challenge. A key theme of this guide is the need to understand autism, but also to get to know the person with autism really well, and work with them to individualise their support based on that knowledge.
* Throughout this guide, we refer to the condition as autism, rather than as autistic spectrum condition (ASC) or autistic spectrum disorder (ASD).