What is Autism?

Autism Spectrum Disorder (or more simply, ‘Autism’) is a lifelong developmental disability which affects 1 in 100 people in the UK. This means there are around 700,000 people in the UK with this diagnosis. Although this is expected to be an underestimation as many adults are misdiagnosed or have not sought diagnosis.  It affects people from all nationalities, cultures, religions and social backgrounds, although it’s more often diagnosed in men than women.

Autism appears to have its roots in very early brain development. However, the most obvious signs of Autism tend to emerge between two and three years of age. It affects the way a person communicates and how they experience the world around them.

Over the years different labels have emerged to try and represent the range in Autistic presentations. At the ‘least affected’ end, you may have heard labels such as “Asperger’s Syndrome” and “High Functioning Autism” (the main difference being in whether there is a delay in language development, there is no language delay in Asperger’s). At the more ‘severe’ end of the spectrum you would have found labels such as “Classic Autism” or “Kanner’s Autism”. In May 2015 all Autism disorders were merged into one umbrella diagnosis of ‘Autism Spectrum Disorder’ (ASD).

The term ‘ASD’ has fallen out of favour within the autistic community however, given the reference to ‘deficit’, and the term ‘autism’ is now preferred. In the autism community ‘identity first’ language is preferred (such as “Autistic,” “Autistic person,” or “Autistic individual”) because it recognises autism as an essential part of an individual’s identity.

Some autistic people may also have learning disabilities, mental health issues or other conditions, meaning people need very different levels of support. Whatever the level of support required, without the right information and input, it can have a significant impact on individuals and their families.

What causes Autism?

The exact cause of Autism is unknown, but it is thought that several complex genetic and environmental factors are involved. In terms of genetics, Autism often runs in families. If a child has Autism, there is about a ten percent chance that another sibling will have it (Wood 2015). Autism and attention-deficit/hyperactivity disorder (ADHD) share about 50–70% of their genetic factors, which is the most likely reason why they are often found together in a child, or in a family (Steijn 2012).

As well as genetics, the other important factor at play is the environment. Potential environmental factors identified to date include:

• Having older parents.
• Being exposed to teratogens during pregnancy (e.g. thalidomide, anticonvulsants and organophosphates) and certain viral infections (e.g. influenza, cytomegalovirus).
• Low birth weight, very early delivery and lack of oxygen during birth.
• Post-natal factors (after birth) such as autoimmune disease, viral infection, lack of oxygen and mercury poisoning.

In the past, some people believed that the MMR (mumps, measles and rubella) vaccine caused Autism, 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 Autism.

The Impact of Autism

The impact of autism is not always immediately obvious. Autism can often present subtly, which often leads to a later diagnosis, when the presentation is not ‘typical’ or what is generally expected. For example, people may learn some social skills, and work hard at ‘fitting in’, which can mask the level of social difficulty. As such this can have an impact on mental health, vulnerability, and developing social relationships. The term ‘spectrum’ continues to be used because how a person with Autism presents can vary tremendously. In general, however, all autistic people share specific areas of difficulty, mainly around:

• Social communication and interaction.
• Flexibility (referred to as demonstrating restricted and repetitive behaviours and activities).
• Sensory processing.

Social communication and interaction

Autistic people frequently have difficulties with interpreting both verbal and non-verbal language (like body language, gestures or tone of voice). Many have a very literal understanding of language and may assume that people always mean exactly what they say. They may find it difficult to use or understand facial expressions, tone of voice and jokes and sarcasm. They may communicate in a less ‘conversational’ manner and use formal words or phrases in ways that makes them stand out.

Another area they may struggle with is ‘social imagination’. 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.

These difficulties with communication and interaction can make it very difficult for them to fit in socially. They may:

• Not understand the unwritten social rules which come naturally to most people.
• Struggle to understand and interpret other people’s thoughts, feelings and actions.
• Be unable to predict what will happen next, or what could happen next.
• 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.
• Underestimate danger or be vulnerable to risk within a social context.
• Struggle to prepare for change and plan for the future or cope in new or unfamiliar situations.
• Find it hard to form and maintain friendships and relationships, despite a wish to do so.

Flexibility: Restricted and Repetitive Behaviours and Activities

Because of their difficulties in social imagination the world can seem a very unpredictable and confusing place to autistic people. As a result they frequently prefer to have a very predictable daily routine so that they know what is going to happen every day. They can become upset or anxious very quickly when their routine is changed and require significant support and preparation for what can seem to non-autistic people a very minor change.

Many autistic people may also have intense and highly-focused 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. An interest may sometimes be unusual. Autistic people might also become attached to objects (or parts of objects), such as toys, figurines or model cars – or more unusual objects like milk bottle tops, stones or shoes.

Autistic people often report that the pursuit of such interests is fundamental to their wellbeing and happiness, and many go on to successfully channel their interest into studying, paid work, volunteering, or other meaningful occupation. These interests can be helpful in providing structure, order and predictability or simply as a means of relaxing.

Repetitive behaviour in autistic people is not the same as OCD (Obsessive Compulsive Disorder), which is an anxiety disorder in which people experience repetitive thoughts and behaviours that are upsetting to them.

Sensory Processing Issues

Processing everyday sensory information can be difficult for autistic people. Any of their senses may be over- or under-sensitive, or both, at different times. These sensory differences can affect how they feel and act and can have a profound effect on a person’s life.  Autistic people can experience both hypersensitivity (over-responsiveness) and hyposensitivity (under-responsiveness) to a wide range of stimuli. Most people have a combination of both.

Many autistic people experience hypersensitivity to bright lights or certain light wavelengths (e.g., LED or fluorescent lights). Certain sounds, smells, textures and tastes can also be overwhelming. This can result in sensory avoidance – trying to get away from stimuli that most people can easily tune out. Sensory avoidance can look like pulling away from physical touch, covering the ears to avoid loud or unpredictable sounds, or avoiding certain kinds of clothing. This can cause anxiety or even physical pain and may lead to them avoiding situations or becoming overstimulated and having a ‘meltdown’.

Hyposensitivity is also common. This can look like a constant need for movement; difficulty recognizing sensations like hunger, illness or pain; or attraction to loud noises, bright lights and vibrant colours. People who are hypo-sensitive may not feel pain or extremes of temperature. They may engage in sensory seeking, repetitive behaviours to ‘turn up’ the sensory input such as rocking, spinning or flapping (known as ‘stimming’).

People with sensory sensitivity may also find it harder to use their body awareness system. Proprioception refers to the system that tells us where our bodies are in relation to the immediate environment. For those with reduced body awareness, it can be harder to navigate rooms, avoid obstacles, stand at an appropriate distance from other people and carry out ‘fine motor’ tasks such as tying shoelaces. Autistic people may also have issues with Interoception, the sense which helps us understand our body’s internal sensations. Interoception helps us know if we’re hungry, thirsty, hot, cold, or any other feeling that begins within our bodies. Interoception is also involved in identifying and regulating emotions.

Emotions and Autism Worksheet

A new wellbeing resource has been launched, to support the emotional wellbeing of autistic people. It is an illustrated worksheet. You can use it personally or with people you work with, as a prompt in wellbeing conversations. The resource was created by Dr Stephanie Petty at York St John University. Please share the link with anybody who might benefit.

Kindly shared by Dr. Stephanie Petty. BSc. ClinPsyD. CPsychol. PhD. FHEA – Chartered Clinical Psychologist, Senior Lecturer, Deputy Associate Head at York St. John University.

Content updated 27/03/2024.