What is autism?
Autism affects the way a person communicates and how they experience the world around them. It is considered a spectrum condition. While autistic people share some similar characteristics, they are also all different from each other. The autism spectrum isn’t linear from high to low but varies, just as one person might vary from another.
Some people with autism are able to live relatively independent lives but others may face additional challenges, including learning disabilities, which means their support needs are different.
Autism is a lifelong developmental disability which affects how people communicate and interact with the world. One in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK.
How does autism affect people?
Autism is a hidden or invisible disability. You can’t see if someone is autistic just by looking at them and some people might not have been diagnosed when you meet them. There are some behaviours and ways of communication that an autistic person may use but these aren’t universal as every autistic person is different.
The characteristics of autism vary from one person to another, but there are four main areas of difference.
Autistic people may find socialising and social interactions difficult. There are lots of unwritten rules that we use when talking to someone else, and these rules aren’t always the same. Autistic people can find these rules difficult to remember or confusing because they aren’t always applied in the same way. This means autistic people often find it difficult to understand other people’s intentions and express their own feelings.
Social interactions can often be tiring for autistic people and difficulties ‘reading’ other people can lead to loneliness and isolation. Autistic people don’t lack the skills to interact with other people, they simply need more information and support to socialise with others.
Autistic people can find it harder to understand abstract concepts. For example, they can struggle to understand another person’s point of view – or if they know it in theory, they may still struggle to imagine what it might be.
Differences in social imagination can make it harder for people with autism to cope with new, unfamiliar or unexpected situations. As a result many autistic people like to know what is going to happen in advance and have set routines for the activities they do. They can also have routines and repetition around things they like such as clothes, food, hobbies and conversations.
Many autistic people also have intense and highly focused interests from an early age. These interests and hobbies often provide them with lots of enjoyment and can be a huge source of joy.
When you talk to another person, you listen to what they are saying, look at the actions they make with their face and body and think of what to say in response. Autistic people find it a lot harder to interpret both spoken language and body language, which can make communication more difficult. There are so many aspects of communication to take in at once, it can sometimes be too much for an autistic person to process all of this information and also respond.
Some autistic people have little or no speech or delayed language development – or they communicate in a different way – using pictures, sounds or gestures for example. This doesn’t mean that they don’t understand what is being said, often an autistic person can take in more information than they give out, this creates a disparity in what someone understands and what they communicate.
Autistic people can take instructions very literally and struggle to understand things like sarcasm or irony.
Autistic people process sensory information differently and this can impact how they interact with the environment and their ability to interact with other people.
An autistic person can be ‘under’ or ‘over’ sensitive in any of the senses – including sight, hearing and balance. This means sounds, lights, touch and smells can be painful or very uncomfortable.
To reduce discomfort, some autistic people may wear sunglasses indoors or wear ear defenders – or prefer not to be touched or only eat specific foods.
What causes autism?
Autism is a lifelong developmental disability that affects someone from birth but research has yet to pinpoint its exact cause.
Current evidence suggests that autism may be caused by a variety of factors that affect the way the brain develops, including genetic and environmental factors.
Is there a 'cure' for autism?
There is no cure for autism. Autism can present many challenges but there are many approaches and forms of support that can help transform lives.
It’s critical that we protect people with autism from harmful or illegal interventions.
Autism and the measles, mumps and rubella vaccine
In the 1990s, a theory emerged that the measles, mumps and rubella (MMR) vaccine caused autism. This idea was based on fraudulent findings put forward by Andrew Wakefield. Following an investigation into that study, Wakefield’s research was withdrawn and he has been banned from practising medicine in the UK.
His theory has been consistently disproved over the past decades, yet significant damage has been done with some parents not vaccinating their children, which puts them – and all of us – more at risk of catching potentially fatal diseases.
Repetitive behaviours and stimming
Repetitive behaviours can be a major part of life for many autistic children and young people. They can be an essential way of regulating emotion and providing someone with a source of comfort or enjoyment that enables them to carry on with their day.
The common name for repetitive behaviours in autistic people is stimming, short for ‘self-stimulatory behaviour’. Some stims are barely noticeable and some are very visible. They vary in frequency and appearance depending on the person. Stimming helps autistic people regulate their emotions and process their sensory environment.
Stimming is often an autistic person’s way of managing a situation and reducing stress and so it shouldn’t be stopped or reduced. However, stimming can sometimes be self-injurious, for example, head-banging or scratching.
Some forms of stimming have different names, for example:
- Echolalia – this is repetition of another person’s spoken words or repeating of the same word over and over. It can help someone to process the information they have been given.
Other types of repetitive behaviours are often linked to the senses, for example:
- Visual– staring at lights; doing things to make the vision flicker such as repetitive blinking or shaking fingers in front of the eyes; staring at spinning objects.
- Auditory – listening to the same song or noise on repeat or making vocal sounds, tapping ears and snapping fingers.
- Tactile – rubbing the skin with hands or with another object or scratching.
- Taste/smell – sniffing objects or people; licking or chewing on things, often things that aren’t edible.
- Proprioception – this means the body’s ability to feel where it is and what it’s doing. This could present in behaviour such as rocking, swinging, jumping, pacing, running, tiptoeing or spinning – all of which give the body’s sense of balance and position a boost. Some autistic children enjoy the sensation of pressure.
Consistency and routine are really important for many autistic children and young people. The world can be a very unpredictable place and this can be very frightening and create a lot of anxiety. Therefore, knowing what is going to happen and when it may happen can help young people to manage this anxiety.
Lots of children and young people with autism have set routines for the activities they do and everything may have to be in the right order. For example, routines around the food they eat or how they travel to school.
Keeping to a routine is not a bad thing – in fact a great strength of many autistic people is their punctuality, reliability and focus. Routines can also offer autistic people a sense of comfort when they are in distress.
However, as we all know, in life unexpected things do happen and difficulty coping with these changes can have much more of a negative impact on autistic people – leading to stress, anxiety and even illness.
Meltdowns and shutdowns
Meltdowns are often the result of situations which are highly stimulating or create high levels of anxiety which feel like they can’t be escaped. When someone is in this situation their reaction is either flight, fight or freeze. If the person cannot escape that leaves two options: either fight or freeze.
Meltdowns are similar to the fight response.
When an autistic person is having a meltdown they often have increased levels of anxiety and distress which are often interpreted as frustration, a ‘tantrum’ or an aggressive panic attack.
It’s important to understand that meltdowns are not ‘temper tantrums’. They are a reaction to a highly distressing situation or environment.
While in a meltdown a person can be injurious to others or themselves because of the extreme state of anxiety their body is in. That’s why it’s really important to minimise the risk of this happening – both for the person and those around them.
Meltdowns are very physically tiring and emotionally draining for the individual. This is because the person has been in a distressing situation and has had a highly adrenalised and emotionalised response.
If meltdowns are equivalent to the fight response, then shutdowns are similar to the freeze response.
They are often the result of situations with high demand in one or a few of the following areas:
- social situations
- situations that require a lot of thinking
- lack of sleep
- very emotional situations
- situations that are very active or physical.
An analogy for a shutdown is like a computer trying to turn on but it can’t because there isn’t enough power to do so. In a shutdown an autistic person might not seem themselves because they’re so overwhelmed that their focus has shifted to the basic functions. As they are at a reduced ability to process what is going on they may struggle to communicate as they normally do, which can mean they are mute or have a lot of difficult forming coherent sentences.
Many people with autism have a highly focused level of interest in particular topics. Some special interests begin in childhood, but some are picked up later in life.
These interests can vary, for example, from a TV show or game to a type of animal, a type of machine or a country. They bring autistic people much joy and can be a positive influence on the rest of their lives – helping them develop friendships, determining what they might study or focusing their career choice.
There are many examples of special interests being turned into amazing accomplishments. For example activist Greta Thunberg’s special interest in climate change has led to a global movement for change led by young people.
Special interest or obsession?
An obsession is a form of anxiety disorder and when a special interest tips over into an obsession it can create complications for children and young people – impacting on things like their wellbeing and ability to learn.
Here are some questions to think about to determine whether the behaviour is actually an obsession.
- Is the behaviour causing the person unhappiness – but they are unable to stop?
- It is creating issues for other people, for example siblings?
- Is it undermining their ability to learn? For instance, are they unable to concentrate on anything else at school?
- Is it limiting their ability to make friends or meet new people?
If the answer is yes it’s worth visiting a GP to raise your concerns. They will be able to investigate the behaviour and may recommend therapy.
Behaviours that challenge
Some autistic children and young people can display behaviour that puts themselves – or someone else – at risk. This is commonly known as a ‘behaviour that challenges’. Common examples of this behaviour include:
- Physically challenging behaviours – such as hitting, biting, spitting or pulling hair.
- Emotionally challenging behaviours – aggressive shouting or using derogatory language.
- Self-injurious behaviour – behaviour that harms the individual, such as head-banging, or biting hands or arms.
- Pica – which means eating things other than food. This can become self-injurious when an autistic person eats potentially toxic or sharp objects.
- Smearing – when an autistic young person smears their faeces on walls or objects.
- Pathological demand avoidance (PDA) – this is a behaviour profile within the autism spectrum that is characterised by resistance to everyday demands. What constitutes a demand can look different to every person.
Autistic children and young people experience the world differently to others. Some aren’t able to communicate their needs as easily as neurotypical children which can result in anxiety and frustration, and can lead to behaviour that challenges. Other factors could be sensory overload, exhaustion or lack of sleep, pain or illness, or changes to routine or new environments.
All behaviour occurs for a reason. Trying to understanding the cause can help us put in place strategies that will help the young person overcome behaviour that could be impacting negatively on themselves and the people or environment around them.