Published date: 03 Apr 2018
99.5% of us know what autism is, but only 16% of autistic people feel that the public understands them (1).
As we begin Autism Awareness Month, I wanted to understand the condition that causes so much misunderstanding. I’ve also caught up on the great work the National Autistic Society (NAS) carries out to raise awareness of autism.
First off… the basics. What is autism?
Having autism means your brain is wired differently. It makes you see, hear and feel the world in a different way to people without the condition.
In the UK, around 700,000 people have autism, but no two people experience autism in exactly the same way (1). To generalise, people with autism struggle to empathise the way the rest of us do. Some people with autism find it difficult to say what they need and how they feel, and many find social situations confusing. Many autistic people feel that, despite trying their hardest every day, they always get it wrong (1).
A phrase we often hear is ‘we’re all on the spectrum’, but what does that mean? According to statistics, only 1% of the
UK population is on a scale referred to as autism spectrum disorder (ASD) (2).
Within the autism spectrum, there are three different types of disorder: autistic disorder, Asperger’s syndrome and pervasive developmental disorder not otherwise specified (PDD-NOS) (3). Whilst all autistic people share certain difficulties, Asperger’s syndrome is generally considered to be on the ‘high-functioning’ end of the spectrum with milder symptoms of autistic disorder (3,4). They might have social challenges and unusual behaviours and interests; however, they typically do not have problems with language or intellectual disability (4). People with autism disorder, on the other hand, usually have significant language delays, social and communication challenges, and unusual behaviours or interests (4). Some are entirely unable to function safely without 24-hour care.
The autism stigma
One problem in autism awareness is that those with the condition don’t usually look different to anyone else. There aren’t any defining facial characteristics, and they don’t typically use devices such as wheelchairs. Others may mistake a child’s autistic behaviour for ‘terrible parenting’, or put an adult’s outbreak down to lack of self-control or mental illness (5). An invisible disability like autism, combined with the lack of public knowledge and understanding, can make life extremely upsetting and depressing for those living with the condition.
So if someone seems a little off, just remember that they may have autism and there may be a number of different reasons for their behaviour. Whether it’s an attempt to communicate or a way of coping, understanding what causes the behaviour can help us develop ways of dealing with it better so autistic people and their families can become more widely accepted and understood by society.
One common experience for people with autism is feeling as if all their senses are firing at once, like they’re getting too much information. The aptly named ‘Too Much Information’ (TMI) campaign by the NAS raises public awareness and understanding of autism.
The TMI campaign, which has been running for three years, is based on the feedback received in surveys from autistic people and their families who felt that increasing public understanding of autism is the best way that the NAS can help (1).
Each year, the NAS publishes a short film focusing on various scenarios that people with autism face. This is accompanied by a number of short stories from other people with the condition to show just how diverse the symptoms can be.
This year, the NAS’s campaign focuses on how fear of unexpected changes for autistic people can result in crippling anxiety and social isolation. The film follows Saskia and her experience of public transport: how sudden breaks or changes in her routine can trigger huge anxiety, panic and even anger. By educating the public on behaviours like this and making a small change in our response, we can make the biggest difference to individuals living with autism. I for one will certainly bear this in mind the next time I notice someone who’s acting a little differently. How we act in response to autistic behaviour can make a world of difference.
The NAS has put together a list of some top tips for the public that can help reduce the overload autistic people face – check it out during Autism Awareness Month, and together we can change our awareness into understanding.
1. Autism.org.uk. (2018). Why Too Much Information? NAS. Available at:
http://www.autism.org.uk/get-involved/tmi/about/report.aspx [Accessed 28 Mar. 2018]
2. Brugha T.S. et al. (2011). Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry 68(5):459–465.
3. Asws.org. (2018). Autism definition, who it affects, and the types | ASWS | W. Michigan. [online] Available at: https://www.asws.org/WhatisAutism.aspx [Accessed 28 Mar. 2018].
4. Autism Speaks. (2018). Asperger Syndrome. [online] Available at:
https://www.autismspeaks.org/what-autism/asperger-syndrome [Accessed 28 Mar. 2018].
5. Iancommunity.org. (2018). Families Face Autism Stigma, Isolation | Interactive Autism Network.
Available at: https://iancommunity.org/ssc/families-face-autism-stigma-isolation [Accessed 28 Mar. 2018]