Written by the National Autistic Society
This year’s World Autism Awareness Week (29 March – 4 April) feels more important than ever. It’s an opportunity to think about the society we want to live in when we leave lockdown – and the small things we can all do to make it work better for autistic children, adults and their families.
We want everyone to understand five things about autism that autistic people and families say are most important to them. These are that autistic people can:
- feel anxiety about changes or unexpected events
- be under or over sensitive to sound, smells, light, taste and touch (this is called sensory sensitivity)
- need time to process information, like questions or instructions
- face high levels of anxiety in social situations
- have difficulties communicating and interacting with others.
Almost everyone has heard of autism. But far too few people know what it’s actually like to be autistic – both the strengths and how hard life can be at times. And, at the National Autistic Society, we continue to hear from autistic people who routinely feel misunderstood, are struggling without the right support or even feel judged and mocked.
The past year has brought particular challenges for autistic people and their families, and a few positives for some. Nine in ten autistic people told us they worried about their mental health during the first lockdown, and 85% said their anxiety levels got worse.
Many things need to change if we’re to create a society that works for autistic people, starting with the Government making sure its upcoming all-age autism strategy for England is ambitious and properly funded. We all have a role to play too, by finding out more about what it’s like to be autistic and the small things we can all do to make the world a little more autism friendly.
Better understanding of autism across society, from schools to workplaces and decision makers in local and national government, would transform hundreds of thousands of lives.
Caroline Stevens, Chief Executive of the National Autistic Society said: “World Autism Awareness Week coincides with the lockdown easing. This is a unique opportunity to rebuild society in a way that works better for autistic people.
“Autistic people tend to find unexpected changes hard, so you can imagine how tough the disruption and frequent rule changes of the past 12 months have been for many autistic people and their families. But autistic people were struggling before the pandemic too, with more than two thirds telling us they don’t have the support they need.
“Many things need to change if we’re to create a society that works for autistic people, starting with the Government making sure its upcoming all-age autism strategy for England is ambitious and properly funded. But we all have a role to play too, by finding out more about what it’s like to be autistic and the small things we can all do to make the world a little more autism friendly. Together, we can improve hundreds of thousands of lives.”
- Autistic people can feel anxiety about changes or unexpected events
You can imagine how tough the disruption and frequent rule changes of the past 12 months have been. The easing of the lockdown rules will be welcome for many but will mean more change and some autistic people will be anxious about this.
Tip: Always try to give notice about upcoming changes to plans. Be specific about what is changing, why and what the new plan or rules are.
- Autistic people can be under or over sensitive to sound, smells, light, taste and touch (this is called sensory sensitivity)
One of the hard-fought changes to government rules were that those autistic people who could not wear a face covering, usually for sensory reasons, did not have to. We can all make similar allowances in everyday life to support autistic people with sensory sensitives, once the lockdown ends.
Tip: If someone you know has sensory sensitivities, ask them what you could do to help. There is often a simple fix to the environment, like dimming a light, turning down music or letting an autistic student or colleague wear ear defenders if they need to.
- Autistic people need clear communication and time to process information, like questions or instructions
Many autistic people found the pace and number of new rules around coronavirus overwhelming, and the abstract language and metaphors used in government guidance hard to understand. They were overloaded by too much information.
Tip: Think about how you can keep your language direct and clear, especially at school or in the workplace and for the most important instructions.
- Autistic people can face high levels of anxiety in social situations
Early in the pandemic, there were assumptions that lockdown might be preferable for autistic people. This has been true for some people. But for many it has compounded the loneliness they experienced before.
Tip: Make sure you’re putting in the effort to include your autistic friends or family members in the ways they’d like to be included.
- Autistic people can have difficulties communicating and interacting with others
Some autistic people will be anxious about being overloaded by the sudden increase in interactions and worried they’ll end up feeling left out and still isolated.
Tip: If someone is feeling overwhelmed, give them the space and time they need to quietly recover. And, if possible, think about if there is anything you can do to help them to feel less overwhelmed in the future.
Any of these five challenges could leave autistic people feeling on the edge of overload, and even lead to a meltdown or a shutdown.
Thanks to everyone who is supporting World Autism Awareness Week this year, and helping us to create a better society for autistic people.
- Find out more about World Autism Awareness Week and get involved. We’ve got lots of ideas, information and resources, including quizzes, posters and much more.
- Read about what it’s like to be autistic in our Stories from the Spectrum series, where autistic people and their families tell us about their lives.
- Find our about the latest coronavirus rules and what they mean for you, wherever you are in the UK.