Why young autistic people don't want the lockdown to be lifted
While the uncertainty of coronavirus has been devastating for many autistic people, some elements of the response -- social distancing, flexible working, clear rules around staying at home -- will be sorely missed.
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Anxiety, fear and general turmoil are feelings that most have experienced throughout the coronavirus pandemic. Within vulnerable groups, that fear is often stronger, as individuals risk a greater threat to their health, wellbeing and state of mind. In the UK, conflicting advice has made it impossible for even the most well-informed and well-meaning among us to do everything prescribed, causing further distress for those who are at risk both mentally and physically. For those with additional needs, it has also meant limited access to life-changing help like carers, speech therapists and other support. But while many aspects of lockdown have made life more difficult for the more than 1 in 100 people on the autism spectrum, others have left them more concerned about what's going to happen once it has been fully lifted.
Broadly, autism is a developmental phenomenon that affects how people see and experience the world. The condition exists on a spectrum, meaning that while for some people, symptoms are mild and easily managed; for others it's much more serious. What all autistic people share though, is a struggle with unpredictability, and one thing that makes life bearable is an intense reliance on routine and repetition, down to the minute detail of their day. Knowing what’s going to happen and when also decreases the chances of meltdowns. Initially, the lockdown threw the 700,000 autistic people in the UK into mass uncertainty. “If you’re autistic, small changes and unexpected events can trigger intense anxiety. So the scale and pace of change over the past three months has been incredibly hard,” confirms Tom Purser, Head of Campaigns at the National Autistic Society.
Tom says that the lack of clarity in lockdown rules has been particularly disruptive for autistic people, and that the easing will only further that disruption. “Now we’ve started easing the lockdown and adjusting to the new rules, different anxieties will be creeping in,“ he explains. “Do I have to go back to work? Should I send my child back to school? What if someone comes closer than two metres? These anxieties haven’t been helped by unclear messages about rule changes. Clarity and consistency are vital when you’re communicating with autistic people.”
"Going from the comfort of my home and having everything ‘my way’ to going out and being exposed to other people doing things ‘their way’ will probably be the most difficult. I’m worried I’ll have forgotten how to act around people."
Twenty-three-year-old Beth, who is autistic, tells me that heightened anxiety has made coping hard, but that the uncertainty and loss of routine is the most testing part. “It’s been difficult having new rules put in place that aren’t 100% clear on what you can and can’t do,” she says. “The change in routine has been the most difficult as I find that I thrive off routine. With that gone I feel lost.” Boris Johnson’s confusing rules have rarely taken into account the needs of disabled and vulnerable people. With the lockdown being lifted further on June 15, the uncertainty is only amplified for those who need specific rules to survive.
Autism advocate and blogger Autistictic tells me that this loss of routine and support networks has severely impacted autistic people. “Uncertainty is something we tend to struggle with immensely,” they say, adding that the pandemic has had a huge impact on them personally: “I lost my occupational therapy, my cleaner, and my carer. I lost all my structure and routine, which caused me to lose pretty much all my functioning.” With additional health issues, Autistictic will need to continue sheltering until there’s a vaccine. “My physical and mental health have suffered greatly due to this entire situation, and there is no end in sight for me,” they say.
On the flip side, however, recent weeks have seen the world somewhat adjust, albeit accidentally, to suit the needs of autistic people. Many autistic people experience sensory processing issues, making their environment overwhelming: sounds, tastes, feelings and other stimuli are difficult to filter, causing distress. Things that neurotypical people can block out, like loud sounds, an autistic person may find unbearable. This often means that being in public can be a challenge, one softened by aspects of lockdown. Social distancing, rules in supermarkets, staying home, virtual appointments and other adjustments have made life easier for those who struggle with social contact, a lack of rules, or overstimulation. Readjusting to the way things were will have its own set of difficulties for autistic people who’ve benefited from certain aspects of lockdown.
“Coming out of lockdown I’m mostly worried about following all the rules, and others following them too," Beth says. "Going from the comfort of my home and having everything ‘my way’ to going out and being exposed to other people doing things ‘their way’ will probably be the most difficult. I will miss being alone, and I’m worried I’ll have forgotten how to act around people,” she says, adding that while “doing nothing” and indulging her special interests at home is a preference, routine is necessary, both for her survival and sense of normalcy.
Hannah, who also has autism, shares Beth's concerns about the loss of social distancing. “I really wish people would respect personal space more the rest of the time. Particularly queues in coffee shops or supermarkets where people are practically touching you,” she says, adding that having time out from overwhelming auditory and physical stimuli will make reentering the world more difficult than it was before. “I've definitely preferred working from home. I can control the noise and distractions, and don't have all the awkward social situations,” she says.
Many have called for a “new normal” after the pandemic -- whether in regard to working conditions or the way we pay essential workers. Recent months have shed a light on many inequalities, and a return to “normal” would be a disservice to those whose struggles we now better understand. For autistic people, lockdown has shown that certain adjustments -- flexible workspaces, social distancing or Zoom hangouts with friends -- are entirely possible. There are things that, in the readjustment period, many don’t want to lose.
Autistictic affirms the need for these changes. “We need to create a new normal, one in which our most vulnerable remain protected. To help adjust to changes, explain the changes. Provide information in a format accessible to the individual autistic person,” they say, emphasising the importance of involving autistic people in the decision-making process when considering changes to the workplace and the wider world. “Ensure that accommodations that have been made to abled people [during this time] now remain available to autistic people who need them."
The National Autistic Society has been working to make adjustment easier for autistic people by providing information and putting pressure on the government to review the impact of the coronavirus pandemic on all disabled people. “Autistic people cannot be ignored, they must be part of our country’s recovery,” Tom insists, adding that in the meantime, people on the spectrum can take the step of implementing structure day-by-day. He also advises trying not to check the news too regularly, “so you have enough time to process and absorb what’s happening.”
The needs of autistic people during this time have been complex and overlooked, with experiences sitting across a wide spectrum of intensity. Some have suffered greatly from the uncertainty and loss of structure, while others have benefited from the ability to choose their own routine. The accommodations made for abled people throughout the crisis have made one thing clear: remote working, virtual appointments, social distancing and altered communication are all entirely possible. It's important that we maintain that flexibility; listening to the needs of people who require lifestyle adjustments and ensuring that they are always readily available.