“People sometimes underestimate us, and sometimes they overestimate us.”
This was how T, an autistic customer of Stonewater Housing Association (where I work) described herself, her autistic child, and the other 700,000 autistic people in the UK. In one sentence, T had crucially highlighted both the diversity of the autistic community, and the prevalent lack of true autism awareness in the UK.
Autism – or the Autistic Spectrum Disorder (ASD) – affects 1% of the UK population directly, and a further 2.8 million family members and carers indirectly.1 I am one of these: I have a family member on the spectrum and regularly observe the everyday challenges this disability poses to him. Growing up, I had autistic classmates but had no toolkit for relating to them. At Stonewater at least 0.3% of our customers have ASD: problems often arise because their neighbours, local community, and even on occasion our staff, aren’t fully aware of or sympathetic to their condition.
I’m very grateful for the families, charity workers and colleagues who have modelled to me how to lovingly draw alongside autistic people, and have helped me understand how I can proactively accommodate for their needs so that they can thrive.
But what about those who may never have interacted with an autistic person or their family? Or those who still hold historic assumptions about ASD (‘it only affects boys’, ‘he’ll grow out of it’, ‘it means you’re a maths nerd’, ‘she just acts a bit weird’)?
World Autism Awareness Week exists to ensure that people like T don’t constantly feel misunderstood and misjudged. By spreading awareness, the campaign aims to increase acceptance of all autistic people in our society, so that they and their families are met with the support they need to flourish.
Autism is “a lifelong developmental disability that affects how people perceive the world and interact with others”2. It is not caused by a person’s upbringing or their social circumstances, and is definitely not the individual’s fault. People are born with it, and often feel it is fundamental to their identity.
Autism is a spectrum condition – all autistic people struggle with similar issues, but these present in a variety of ways. Asperger’s Syndrome, for example, is a milder form sometimes described as ‘high-functioning ASD’.
Some common difficulties for autistic people include:
However, as T states, we must be careful in our awareness of autism not to have a ‘one size fits all’ approach and just assume an autistic person’s capabilities. T says that just asking an autistic person (or someone close to them, like a parent/key worker) what they would find helpful from the very start makes a big difference.
Thanks to two years of campaigning (by members of the National Autistic Society and the All-Parliamentary Group on Autism), in 2009 Autism became the only disability to have an Act dedicated to improving and supporting the services used by autistic people. The 2009 Autism Act ensured that the Government (national and local) had a duty to produce and review an autism strategy to meet the needs of autistic adults in England. Since this happened, 93% of areas in England now have an adult diagnosis service and the strategy has been amplified to also support children.4 Progress is happening in other areas too: major retailers introduced ‘autism hour’, where the music is switched off and lights are dimmed to make shopping less stressful for autistic customers; and many businesses now hold the ‘Autism Friendly Award’ for adapting their services to better support autistic clients.
But society could still do more. 50% of autistic people and their families still sometimes choose not to go out because they are concerned about people’s reaction to their ASD.5 40% of autistic children report having been bullied at school.6 At Stonewater, our autistic customers often suffer from harassment and loneliness because of their condition. Greater autism awareness is needed at every level if we are to develop a truly autism-friendly society.
My research at Stonewater has demonstrated that so many staff really want to support our autistic customers better – they’re just not always sure how. Willingness to learn, and awareness of a lack of awareness, are the first crucial steps to addressing these issues, and this feedback gives me hope that as a society we can move forward.
Many of 2020’s World Autism Awareness Week activities will have been cancelled or put on hold due to the COVID-19 pandemic. But it seems poignant, even ironic, that this year’s Awareness Week has coincided with a season when we’ve been told to stay at home and socially isolate.
79% of autistic people and 70% of families say they feel socially isolated.7 Not just during the COVID-19 pandemic, but all the time. As we stay at home this week with restricted social contact, could you reflect with me on what it is like for 70%+ of autistic people and their families every day? Together can we consider how stressful this week is for autistic people who have been thrown new routines and expectations when structure and calm are so vital for their wellbeing?
And when COVID-19 abates and we restore our social lives again, would you reflect with me on how it feels to leave your house each day knowing that the people you’ll meet will be aware of your needs and accept you, even befriend you, where they can – and how autistic people should expect that too?
Autism is a hidden disability but not a rare one, and it’s almost certain you’ll meet at least one person affected by ASD in your lifetime. So my question to you is: how are you going to be proactive about it? Perhaps in the non-profit you work for, or the COVID-19 Mutual Aid group you’re part of? For me, I’m currently analysing how at Stonewater we can better support customers affected by autism at every stage – with the vital input of our neurodiverse customers we’re seeking to tailor our working practices, communications and services so that they are fully accessible. What might it be for you?
The National Autistic Society is the best source of Autism information in the UK: https://www.autism.org.uk/
If you know some affected by Autism who is struggling with the consequences of COVID-19, please direct them here
By Rachel Eatough, Customer Experience Graduate at Stonewater