Autism: challenging the new normal

Constant change to routines and government rules have created a challenging environment for autistic people both in and out of the home. Emma Storr discovers what adaptations have to be made to create a better space for autistic people.

The constant changes due to the coronavirus pandemic throughout the first half of 2020 have created a confusing and distressing landscape for people with autism. New rules and guidelines around staying at home, wearing face coverings and shopping, it can be difficult for people to process.

“In lots of ways I think our concerns have changed as we’re going along, but I think the constant change and disruption is difficult for people to process,” explains Tom Purser, head of campaigns at the National Autistic Society. “We know that different changes have been much harder for some people than others.”

IMPACT

The continued update of rules is something that has affected Jane*, a mother of three. Her second son has autism, ADHD and a range of neurodiverse conditions.

“My autistic son is frightened of going out in case he catches COVID,” explains Jane. “He won’t go in the shops, it’s hard for him to go out usually so when we go back to normality it’s going to be even harder because it won’t be the same normality.

“We’re just a normal family really struggling to cope with a child with all these conditions and fighting for support,” emphasises Jane.

One of the main changes that Tom feels has affected autistic people is the requirement to wear a face covering in enclosed spaces.

“Some people are worried they can’t wear masks because of sensory elements or their children won’t wear masks, for others they’re worried about what happens when other people aren’t following the rules,” reveals Tom.

“We’re trying to make sure the government is reflecting the needs of autistic people in rules around face coverings.”

Alongside the government’s face covering exemption cards, the National Autistic Society had developed exemption cards unique to autistic people, but Jane feels this might make her son feel singled out or embarrassed in shops.

“They’re going to find it difficult to communicate that with the person in the shop,” explains Jane. “To go to someone with the card is making them look different and they don’t want to look different.

“A lot of teenagers want to blend in and fit in; to look different is a big thing for them.”

Instead, Jane wants to see better support and advice available for autistic people about what to expect when leaving home, she says: “They need to a have session where they can have a short course to say this is what you’re going to see in the shops; this is what you’re going to have to deal with; show them what two metres apart is, because they won’t understand it.”

HOME SCHOOL

Along with leaving home to go to shops, Jane’s son has experienced difficulties accessing education during this time.

“He cannot cope with doing work at home and never has,” emphasises Jane. “From the start of lockdown, the school said ‘don’t worry we’ll get all of it complete’, and that’s not been the case. Zoom isn’t the mode for children with his difficulties because he can’t learn that way.”

Jane was left in a position where she had to put pressure on her son to complete work that he couldn’t cope with.

“I sort of pressured him one day and tried to get him to go on and he ended up having a meltdown and being violent,” recalls Jane. “He was smashing a Pringles tub against the wardrobe and split the lid and cut his hand open then had a seizure.

“That’s when I said I’m not doing this anymore.”

The mainstream school Jane’s son attends reopened so he could attend, but the family found that this didn’t help the situation as they didn’t understand his support needs. Before and during lockdown Jane has been campaigning to have her son moved to a SEND school where his needs would be met.

“The school he’s at don’t understand and shout at him for not completing work and it’s a vicious circle,” reveals Jane. “If it was a special needs school they would understand and he wouldn’t get punished.”

Without access to the social aspects of school and the youth club that he attends, Jane’s son has had to rely on social media to upkeep friendships.

This isolation is something that has affected the whole family’s mental health, Jane says: “He’s had nowhere to go so they’re stuck with social media and he doesn’t cope with social media because of his social difficulties.

“Even for my youngest who doesn’t have neuro difficulties, he’s having to have counselling because of lockdown and being in the situation we’re in,” explains Jane. “It’s not knowing how his brother is going to be from day to day.”

As we move though the lockdown phases, it is hoped that lessons will be learned from this difficult period of time.

“I hope the governments of all nations will continue to factor autistic people in their planning,” admits Tom. “We need to see guidance for changes coming out as early as possible so people can be prepared for them.

“I think it’s so important that we don’t see future waves and that lessons are learned from what has happened and people’s experience so far.”

Upcoming changes to rules and the easing of lockdown will continue to prove difficult for people with autism, but with more support this transition could be easier. Advance guidance, easy-read information and autism-specific guidance will be necessary to making that happen.

FOR MORE INFORMATION

The National Autistic Society’s coronavirus hub provides autism-specific guidance on rules and guidance from the government.

*Names changed to protect identities

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