World Autism Awareness Week
Autism is a lifelong developmental disability that affects how people perceive the world and interact with others. To mark World Autism Awareness Week, we speak to local residents Amanda Gibbs and Chris Cooper who reflect on their own experience of living with autism, bust some of the myths surrounding the condition and explain what others can do to make a positive difference to the lives of people with autism.
Living with autism
Autism is much more common than many people think. There are around 700,000 people on the Autism spectrum in the UK – that’s more than 1 in 100 and around 2000 people in Islington alone. But what does it feel like to live with autism?
Amanda explains, “I can find daily life difficult. I am hyper sensitive to sensory stimulation. Lights are brighter, the noise from traffic is more intense, smells like aftershave can make me feel nauseous and some clothing feels like sandpaper. If a plate of food has the wrong combination of colours and textures on it – I don’t want to eat it.
“It feels like I have to cope with so many things at once, which can be overwhelming, stressful and very tiring. I call it autism exhaustion”.
What is the autism spectrum?
All autistic people share certain difficulties, but being autistic will affect them in different ways – which is why autism is described as a spectrum condition. Some people with autism are able to live independent lives, but others may have accompanying learning disabilities and may need specialist support.
“If you meet one person with autism you’ve met one person with autism – just like if you meet one person with blue eyes, you’ve met one person with blue eyes. The mistake that people make is to think they know all about autism just because they know one person with the condition”.
Amanda adds, “There are also differences in men and women with autism. More men are diagnosed with autism, but the symptoms for women can be quite different, so it can be harder to recognise.”
Many people with autism can experience difficulties with social interaction. Chris works two days a week in an advertising agency as well as doing voluntary work. Despite this, he describes how “things that other people might take for granted – like going to the dentist or making an appointment – can be really stressful. I can get really high levels of anxiety about things like that.”
“I find it difficult to make friends” explains Amanda. “Conversations with groups of people are especially hard. It can take longer for me to process things and I am much more aware of background noises. It means that I miss parts of the conversation and end up saying things out of context. It can make you feel askew and disconnected.
“Language can be a barrier too. Understanding metaphors is difficult, so it can lead to some very confusing conversations. For example, if someone tells me to pull my socks up, I’ll pull my socks up!”
Changing peoples perceptions
Research carried out by the National Autistic Society shows that awareness of autism is high but there’s a lack of understanding about what it really means to live with autism, which can have a negative impact on people with autism and their families.
Amanda explains, “Autism is a hidden condition. Because you can’t see it – people can think you’re just being awkward or suborn or even stupid. Everyone is different and that rule doesn’t change just because someone has autism. The key thing is patience and taking the time to get to know someone and understand what they like and don’t like – just like you would anyone else. For example, giving people a bit more time to answer your question and taking time to explain things clearly.”
Chris suggests it would help to have “more training and awareness for teachers and other public professionals, but also – for everyone just to find out a bit more about autism. People don’t need to be experts, but more people having an understanding of autism would make a big difference to autistic people in their every day lives.”
Getting the right support
All people on the autism spectrum learn and develop and with the right sort of support, can be helped to live a life which fulfils their potential
“It can be like walking through a maze to find the right support, but if you get it, then there’s no reason you can’t do what you want to do. I’d like people to focus on my abilities rather than my disability.”
In Islington, the Autism Partnership Board is aiming to improve the lives of people with autism in the borough. Both Chris and Amanda are Board members along with professionals from health and social care, and charity and voluntary organisations. The Board focuses on practical steps, like making sure people have access to support and employment and campaigning for more organisations to make reasonable adjustments for people with autism.
Amanda said, “I feel proud to be a part of the Partnership and the work we’re doing. Voices of people with autism don’t often get heard, so this is a real opportunity to make a difference for autistic people in Islington”.
To find out more about autism, visit the National Autistic Society website. If you want to know more about the Islington Autism Partnership Board, or to get involved, contact Ellie.Chesterman@islington.gov.uk