How is autism described?

When a person receives a diagnosis, they may be told they have a particular kind of autism. People without a learning difficulty are sometimes diagnosed as having ‘high-functioning autism’, or ‘Asperger syndrome’, or 'Asperger's'. Others may be given a diagnosis of ‘classic’ autism, atypical autism or PDD-NOS (pervasive developmental disorder – not otherwise specified). While the need for specific names for different kinds of autism has been questioned, it is important that the preferences of the autistic person are borne in mind, such as retaining the use of ‘Asperger syndrome’ as a descriptor. What is key is focusing on the individual, since within each diagnostic label there may be a wide variance in the support needed for day-to-day living between different people.

A recent study [3] asked people on the autistic spectrum, parents, family and friends, as well as professionals, about the terminology they preferred to use. It found that there were many differences and strong arguments put forward for each of them. Many autistic people and parents argued that as a descriptive term ‘autistic’ should come first, to show that it is not derogatory: you wouldn’t call a beautiful person a ‘person with beauty’. Professionals preferred the ‘person-first’ approach: ‘person with autism’. This guide uses both, acknowledging that while autism is a form of neurodiversity and may be an important part of a person’s identity, it can also mean that people need support for day-to-day living. This use of terminology is also reflected in changes to the language in statutory guidance.[4]

Three areas of difficulty

Autism is experienced differently by individuals, but there are three areas of difficulty which are commonly used to describe the condition, and are also used in the criteria when diagnosing autism. These are known as the ‘triad of impairments’. While people may experience different degrees of impairment for each part of the triad, people with autism experience the following:

• difficulties with social interaction – finding it hard to understand, communicate and recognise how other people are feeling.
• difficulties with social communication – struggling with verbal and non-verbal language
• difficulties with social imagination – finding it hard to imagine what others are thinking or alternatives to their own routines.

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. While many people with autism have good language skills, others will speak little or not at all, though this does not mean they cannot communicate in other ways. Autistic people typically prefer communication to be simple and clear.

Many autistic people also have the following.

• Sensory sensitivity – over- or under-sensitivity to things such as light, sound, touch and heat, or certain tastes, textures or smells.
• Problems with motor skills, proprioception or balance.
• A need for structure – imposing their own routines in order to help make sense of the world and alleviate anxiety; such routines can sometimes become obsessive behaviours and rituals.
• narrow interests – a very close interest in a particular topic or pastime, often becoming extremely knowledgeable in it.
• A focus on detail – this is also a strength which can enable high levels of achievement in certain fields. However, 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 strategies which mask their difficulties, or carers who help to mediate difficulties so well that they are not initially apparent to a professional assessing them.

It is important to note that impairment in the area of ‘social imagination’ does not mean that people with autism lack imagination and creative talent. The spectrum nature of the condition and the idiosyncrasy of some people’s needs mean it is imperative that service providers and practitioners do not over-generalise, This also makes 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.