It’s world autism awareness day, in what represents an incredibly trying time for children and adults who suffer from autism all over the world. I’m speaking to Tom Purser, who is the Head of Campaigns for the National Autistic Society in the United Kingdom. So Tom tell me, why does quarantine constitute such a difficult issue for autistic people ?
<< For the 700,000 autistic children and adults in the UK, this is a massive disruption for their daily lives. Things like your favourite local cafe being closed, supermarket shelves not having a particular type of food you might eat every day and disruption to school and care services having a massive impact for autistic people. >>
So what you’re saying is that the biggest issue is the not having a guaranteed structure and routine whether that be the big things or the small ?
<< Autistic people can find the world very overwhelming. They can struggle with unexpected changes, noise, smell, light etc and they can find it difficult to process new information. What this situation has done is impact all of those things, so there is lots of information coming out every single day with new rules, changes. People might be stuck at home in a totally different environment than they’re used to. Social interaction for example they might be surrounded by siblings too. >>
And just how much does this change from person to person? I suppose I’m saying obviously there’s an autism spectrum, but that’s not what I’m talking about. Are there different aspects of this need to have a routine that will affect some autistic people more than others or do they just all sort of fall under the same bracket ?
<< We do know the five things : needing more time to process information, finding social situations anxiety provoking, unexpected changes anxiety provoking, different ways of experiencing sensory information and a difficulty with communication. All of those things are being impacted for them at the moment. For some people potentially not being able to get a certain type of food might be the most impactful thing for them, for someone else it might be the changed sensory environment. >>
So what advice have you got particularly for autistic children, but most of all for the parents who are trying to help both themselves and their children ?
<< We’ve got information in a number of formats on our website and then we’ve got some resources to help people establish a new routine so even if they are self-isolating for 14 days, they can still establish a routine around their day and have a structure despite the unpredictability of everything that is happening. >>
Now let’s talk about the UK for a moment, obviously confinement has lasted nearly two weeks now. Just how much has your job changed since first of all the possibility of the pandemic hitting the UK came about, and second of all since the start of confinement ?
<< There is a huge thirst for information and resources around it, we are taking what our volunteers offer online, and it has changed the focus of things in one respect but in many ways the challenge remains the same. We know that what they often need support with is issues around social isolation, around accessing services whether that’s normal day to day services like supermarkets or whether it’s social care services. >>
For an autistic person who is in the unfortunate situation where they are living alone, something that I’d imagine that would be incredibly incredibly difficult, what advice would you have for them ?
<< We’ve got lots of advice around employment and what they can do in the workplace, and to manage anxiety, but some of it is just some really practical tips, like making sure that they are setting up a regular point where they are checking in and having regular communication with someone, in a way that means they don’t get overwhelmed by communication but just so that they can check in. >>
Boris Johnson obviously gave a time frame for turning the crisis around just in time for summer. Obviously know one knows if this will actually be the case, but what are the problems for autistic people given that with this crisis, there’s no clear end date ?
<< Autistic people were already some of the most isolated people in the UK. Our worry is that the longer it goes on, the greater that isolation can become and the greater the risk of an impact on people’s mental health. We need to see a response from the government to make sure that charities can keep doing the work that they’re doing.
Are these the kind of problems where as they get into a routine, as they establish a pattern of behaviour it actually might get easier for autistic people over the course of the quarantine, or because of increased boredom, increased social stress it will just become more and more difficult ?
<< Autistic people can adapt to change, it just depends how well they are being supported. I think if those things are put in place there is no reason why they can’t adjust to this new reality just like anyone else. Though the longer you work on the structure and the new routine, the harder it is to go back to how things used to be. We still have some big things we need to clarify, such as autistic people needing to access vulnerable shopping slots for example, since they may struggle to stand in a queue for an hour and a half due to their autism. >>
There are plenty of support resources on the National Autistic Society website that can help autistic children, autistic adults and parents of autistic children to make this confinement period easier.