Autism

What is autism?

This page explores autism, potential causes, and some of the issues autistic people can face.

Autism Spectrum Disorder (or more simply, ‘autism’) is a lifelong developmental condition which affects 1 in 100 people in the UK. This means there are around 700,000 people in the UK with this diagnosis.  It is likely that there are actually more people with autism than this as some  adults may have been misdiagnosed and many others may not have asked for an assessment.  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.

Describing autism

Over the years different labels have emerged to try and describe the many ways in which different people experience autism. In the past, different labels were used to describe the different ways in which people experience autism. People were diagnosed with different types of autism, such as ‘Asperger’s Syndrome’, ‘High Functioning Autism’,  ‘Classic Autism’ and ‘Kanner’s Autism’. In May 2015 these different autistic diagnoses merged into one umbrella diagnosis of ‘Autism Spectrum Disorder’ (ASD).

The term ‘ASD’ has fallen out of favour within the autistic community and amongst many of the professionals who support those with autism. This is because ‘disorder’ is a negative word which only focuses on the difficulties which people have and misses out the positive aspects of being autistic. The term ‘autism’ is now preferred. In the autism community ‘identity first’ language is also preferred (such as ‘autistic’ or  ‘autistic person’) because it recognises autism as a part of a person’s identity.

Some autistic people may also have learning disabilities, mental health issues or other conditions and so they may need more support than other autistic people. Whatever the level of support required, autism can have a significant impact on individuals and their families.

What causes autism?

The exact cause of autism is unknown. Several complex genetic and environmental factors arThe exact cause of autism is unknown. Several complex genetic and environmental factors are likely to be 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 to 70% of their genetic factors. This is the most likely reason why is that 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.
• Exposure 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.

Most researchers agree that exposure to any of these environmental factors does not in itself cause autism but it may increase a child’s chances of developing autism when combined with genetic factors.

In the past, some people believed that the MMR (mumps, measles and rubella) vaccine caused autism. It has been investigated extensively in a number of major studies around the world . Looking at 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 affects different people in very different ways. There is now a much better understanding of the many different ways autism affects people. In the past, there were much lower rates of diagnosis. It is likely that many people who would receive a diagnosis of autism today would have been incorrectly diagnosed with other conditions in the past. Misdiagnosis is still possible. This is particularly when a person’s autism comes across in a way which is not typical. For example, people may find ways of learning  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 relationships. The term ‘spectrum’ continues to be used as how a person with autism presents can vary tremendously. However, today the ‘autism spectrum’ is seen as a circular spectrum like the one used to show shades of colour (the ‘colour wheel’) rather than a single line spectrum. This is a more accurate way of understanding the many different ways in which people experience autism. In general, however, most 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 may have difficulties with interpreting both verbal (spoken or written) language 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 daily routine.

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

• Find it hard to form and maintain friendships and relationships, despite a wish to do so.
• 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.

Flexibility: restricted and repetitive behaviours

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 become upset or anxious very quickly when routines change. They require significant support and preparation for what to non-autistic people can be 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

Because of their difficulties in social imagination, at times, the world can seem a very unpredictable and confusing place to many 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 become upset or anxious very quickly when routines change. They may require significant support and preparation for what to non-autistic people can be a very minor change.

Interests

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 appear unusual to others. Autistic people might also become attached to objects (or parts of objects), such as toys, figurines or model cars or more unusual objects like 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. Many autistic people also have a capacity for intense focus on things of interest to them for long periods of time.  This capacity can become a significant strength later in life.

Repetitive behaviour

Repetitive behaviour in autistic people is different from 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 such as 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 or overwhelmed.

Hyposensitivity

Hyposensitivity is also common. This can look like a constant need for movement; difficulty recognising 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’).

Sensory sensitivity

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 involves identifying and regulating emotions.

Emotions and autism worksheet

This is a new wellbeing resource 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. Dr Stephanie Petty at York St John University created the resource. 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.

Online Course: ADAPT: After Diagnosis of Autism Parent Support Training

For more information you may wish to do the online course ADAPT which you can find in the Courses section at the top of this page.

This resource is for parents of children and young people diagnosed with Autism Spectrum Condition (ASC).

This co-produced resource is an updated and improved online version of the previous Brief ASCEND course. It was delivered in 3 ½ day face-to-face sessions before the COVID-19 pandemic.

The resource is co-produced by CAMHS (Child and Adolescent Mental Health Services) and CYC (City of York Council) Specialist Teaching Team in York.

You’ll need to create a free account with us, and then you’ll be able to access not only this course, but all of the free courses that we offer.