If you have been watching I’m A Celebrity Get Me Out of Here this year, you will have learnt that contestant Anne Hegerty has discussed having autism and has been widely praised for her bravery and honesty. Following the episode being shown, the National Autistic Society website crashed, with people wanting to find out more about the condition and she has even inspired others (especially children) who live with the condition.
But what is autism? Here is an insightful and detailed explanation of Autism from Heather Jones who has worked in the Special Educational Needs sector for over 25 years and is now currently head of her department.
Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.
Autistic people see, hear and feel the world differently to other people. If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be ‘cured’. Often people feel being autistic is a fundamental aspect of their identity.
Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways. Some autistic people also have learning disabilities both mild or severe, mental health issues or other conditions, meaning people need different levels of support. All people on the autism spectrum learn and develop. With the right sort of support, all can be helped to live a more fulfilling life of their own choosing.
Latest figures show that there are approximately 7oo,ooo people with autism in the UK, this equates approximately to one in every hundred people and it effects four times as many males than females. The actual figures are thought to be higher than this as some people never receive a diagnosis and there is research to show that there is under diagnosis amongst the female population.
Autistic people are all individuals and present in different ways but they will all have difficulties in varying degrees in the following areas: social communication, social interaction and flexible thinking and imagination. Many will also experience sensory sensitivities and will either be over sensitive to stimuli or under sensitive or a mixture of the two; this is known as sensory processing disorder. So how do these difficulties impact upon an autistic person’s life and how do they show themselves in the person or child’s everyday functioning?
All children/people with autism will have difficulties in how they communicate with others; some lower down on the spectrum may never develop speech and will be very much “in their own world” whilst others will develop speech but have difficulties with the social use of it. They may be very literal in their understanding and struggle to understand sarcasm and jokes. They will struggle with having a reciprocal conversation with another person and in knowing how to initiate a conversation with another person and maintain it. They will struggle to understand the facial expression, gestures and body language of other people which makes it difficult for them to understand the intentions of others or how others are feeling. Neuro typical children learn all these things instinctually as they are growing up through their thousands of social interactions with others, autistic people do not. These difficulties impact on their ability to form friendships and to “fit in”.
Due to their difficulties in social communication most people with autism find social interactions challenging and may choose to shy away from interacting with others or may interact with others but their interactions may be odd or inappropriate. Autistic people often have difficulty ‘reading’ other people – recognising or understanding others’ feelings and intentions – and expressing their own emotions. This can make it very hard for them to navigate the social world. Many people with autism struggle to understand that other people have different thoughts feelings and intentions than themselves and they don’t have “theory of mind” that is the ability to see things from another person’s perspective. As getting along successfully with others depends upon empathy and understanding how others feel it is no wonder that people with autism struggle in their daily interactions, for example autistic people will often say what they see and may say hurtful comments to another person without realising that they have hurt their feelings. Another feature of autism is often an intense and highly focused interest in something and this can dominate a person’s thoughts and conversation and they will talk “at” a person rather than with them and it is all about their special interest. Special interests can often be bizarre such as church bells, vacuum cleaners, bus timetables etc.
Flexible thinking and imagination
In our day to day lives we have to be flexible on many occasions and compromise with others in order to get along successfully with other people and the world, for example if our train is 10 minutes late we can cope with this and get on with our day or if our friend doesn’t want to watch the same film as you at the cinema you can discuss it and reach a compromise as to what to do. However, people with autism often struggle to be flexible and they have a very rigid inflexible style of thinking which leads to frequent difficulties in getting along in our unpredictable world. Many can be very reliant on routine and sameness and small changes to this routine can have a very negative effect on them and may lead to a melt-down. Unexpected changes to their routine may send them into a tail spin and they will try to cling on to this routine and sameness in order to feel safe and secure which frequently means they are at odds with the world, which by nature is an unpredictable place. The use of rules can also be important. It may be difficult for an autistic person to take a different approach to something once they have been taught the ‘right’ way to do it.
Sensory processing disorder
Many autistic people may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain. For example, they may find certain background sounds, which other people ignore or block out, unbearably loud or distracting. This can cause anxiety or even physical pain. Or they may be fascinated by lights or spinning objects. Busy loud environments like a shopping centre or busy street can be overwhelming for the child/person with autism and they can experience sensory overload which will lead to a melt-down. Some children/people may be extremely touch sensitive and will become distressed if they are touched by another person or even certain items of clothing/labels etc. Equally if someone is under sensitive to sensory stimuli they will display sensory seeking behaviours where they may throw themselves into furniture or the floor just to be able to feel some sensations. Having sensory sensitivities is very common in autism.
Autistic people are all individuals and there is a famous saying “If you’ve met one person with autism you’ve met one person with autism” therefore people with autism all present in different ways and will have the above features in different measures or severity. What is important is to realise is that autism is just a different way of seeing, experiencing and interpreting the world and is in no way in inferior to neuro typical ways of thinking, it is just different that is all and different people will need different levels of support to help them cope with day to day living and to thrive and find their place in the world.
Written by Heather Jones