“It’s very clear that people are responding to the lockdown in very different ways.”
This statement is universally true. But Dr Kevin Tierney was not referring to all of us. He was speaking about one of the most diversely and at times severely affected groups: the autistic.
A clinical psychologist and autism specialist, Dr Tierney continued: “Some people are finding the lockdown to be a strangely positive thing. It feels good to have some demands reduced. Others have found it really challenging.”
It is often said that autism is a broad spectrum. Its symptoms are varied. So too, therefore, are the ways in which autistic people are managing the lockdown. Isolation has calmed some and induced meltdown in others. Many care homes are surprisingly unaffected, others are struggling and even closing down.
These are the diverse ways autistic people are coping with coronavirus.
700,000 people in the UK have been diagnosed with autism. James Sinclair is one of them. Everyone is struggling to adapt to lockdown, but the lack of structure and routine makes life particularly difficult for autistic people, who tend to dislike change. This makes them more reliant on coping mechanisms now than ever before. When autistic people become overstimulated or stressed, they often lose control and enter a state known as ‘meltdown’. James likes to go for walks to clear his head. But even this simple activity has become a source of stress.
Autism specialist Dr Robert Patterson has found that some autistic people are actually better-suited to lockdown than the neurotypical . “It’s almost like all their worries have faded away,” he says. “No one is getting them up at 8AM, telling them what to do. They can do whatever they like.”
Joe Dallaway is among the autistic people not finding the lockdown particularly difficult. Besides missing trivial things like playing football with friends, Joe is coping remarkably well. He is, however, concerned about the upcoming lifting of lockdown and the social ambiguities associated with this.
Care home staff
It is becoming clear that the social care sector has endured the outbreak’s brunt. Covid-19 has ripped through care homes nationwide, leaving over 4,000 dead according to the Office for National Statistics. Hundreds of autistic people require care home accommodation. For them, their families and their carers, the figures are deeply concerning.
“The government has let us down big time. It’s been a case of leaving us to our own devices,” says the residential manager of a care home who wishes to remain anonymous. “If we had to isolate one of our residents it would be the biggest challenge of my life – getting a severely autistic person to understand self-isolation. We have been incredibly lucky so far.”
The manager lists the lack of PPE and broader government support among his grievances.
“We keep receiving all these emails about PPE, but all we have received is a batch of facemasks about 7 weeks ago,” he complains. “We’ve had to get hold of it privately but our supplier has run out because the NHS has taken the bulk of supply. The NHS has been given priority and the government has forgotten about care homes.”
He thinks it is only a matter of time before someone contracts the virus.
“Our guys have what is called high function behaviour. People with ADHD, like ours, have to exhaust a lot of energy. If they don’t, they have outbursts, so they have to go out on a daily basis which makes us all vulnerable. This is about risk management and it is scary.”
Testament to autism’s diverse spectrum, other autistic care homes are doing surprisingly well. Gul Collis runs a National Autistic Society (NAS) care home in Godalming. She says her residents’ needs are well-suited to isolation.
“I was expecting the worst. Cabin fever. Sickness. But it really hasn’t been bad,” she told us. “The calmness is really working for them. Our incident reports have gone down to almost nothing! It’s more relaxed, there’s fewer pressures on them.”
But for the carers themselves, daily life has become considerably more difficult. Gul lays the blame here at the feet of the government.
“It is more of a strain on carers because they have to wear full PPE and be really cautious,” she says. “Care homes have been at bottom of the government’s list of priorities. We are still relying on the NAS for PPE and charity for visors.”
It’s a Tuesday night and an NAS youth group has convened online for a video meeting. Songs are sung, quizzes played and pictures drawn. It is remarkable how quickly these routine-focused teens seem to have adapted to conditions.
“Life’s actually easier than before,” one of them says. “I get to play games and live life on my own terms. If I’m feeling anxious, there’s no pressure to do things that might provoke a meltdown.” The group nod in agreement.
But towards the end of a ‘name-the-movie’ quiz, excitement peaks and the group begins to speak over each other. A thirteen-year-old, who had been quiet until that point, hurriedly stands up and leaves view. Muffled screams are heard in the background. He is having a meltdown.
Even in a group this small group, it is hard to ignore the diverse challenges autistic people face during lockdown.