Parents of autistic children speak out about coronavirus lockdown challenges
- Credit: Aditi Rastogi
Parents of autistic children have spoken out about the challenges they have faced during the coronavirus pandemic - and about feeling abandoned by the government.
According to a YouGov survey, 60% of disabled people who rely on social care couldn’t obtain essentials such as medication during the pandemic, and the Education Union recently said that special educational needs and disability (SEND) funding faces a £2 billion annual shortfall.
Stéphanie Buckingham’s 10-year-old son, Kristian, has autism and ADHD. The Muswell Hill mum said his The Vale School was brilliant and opened when it could, but that the family was let down by the government.
Kristian began self-harming, including pinching himself, leaving bruises on his legs. Stéphanie said his screaming distressed his siblings, 15-year-old Andrew and Kristian’s twin brother Alex.
“We were left in complete limbo,” said Stéphanie. “The change in routine completely messed his life up, he couldn’t process it. It felt like all of a sudden all our support disappeared, it was awful.
“I was crying every day. I think my mental health really deteriorated over those weeks. I feel like the government didn’t take into account what might happen to families like ours.
“My resilience is gone, and I couldn’t go through what we went through in March again.”
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Aditi Rastogi, 34, who lives in Hampstead with her autistic son Arush, 10, also praised his school, Abingdon House, but said she struggled and didn’t receive help for months from the government.
The exhausted mum said Arush’s physical and mental health deteriorated at home, and he constantly played games or watched videos of trains and buses, which he desperately missed watching outside.
Ms Rastogi, also mother to 18-month-old son Adhrit and a newly-qualified wellness coach for struggling mums, said she was terrified when Arush started having seizures.
She added: “It scared us, it was the first time we’d seen him like this.
“Arush was frustrated and irritable, so he would shout and cry, and that affected our mental health a lot.”
A Department for Education spokesperson said: “Throughout the pandemic we’ve prioritised pupils with SEND including those with Education, Health and Care Plans for whom we kept schools open where it was safe to do so.
“We’ve provided more than £37 million this year to help thousands of low-income families raising disabled or seriously ill children with the challenge the face staying at home and our £1 billion Covid catch-up fund includes additional weighting for specialist settings in recognition of the higher costs they face.
“At the same time, we are increasing high needs funding for local authorities by £780 million this year and a further £730 million next year, which means high needs budgets will have grown by 24% in just two years.”
It’s not just school-age people with autism who need support. A former Highgate resident told the Ham&High she is concerned about the effects of the next lockdown on her adult sister, whose autism and Down’s syndrome means she doesn’t like changes to her routine. She said her sister was unsettled by moving back in with her parents for the past five months and is adamant that this time around she’s staying in her sheltered accommodation.
She said: “She’s just a bit withdrawn- her whole routine has changed, and she has anxiety around the virus.
“It stresses her out that there’s no timeline, and we can’t answer her questions about when things will be back to normal.”
Their mother added: “People with learning difficulties are only just getting some sort of normality back in their lives, then suddenly it’s back to square one. They’re completely confused and anxious about it.”
She helped her daughter with a routine of Zoom activities.
“You’re balancing work with supporting your young adult to maintain their independence and health, whilst staying healthy yourself.
“It’s a lot to juggle but who else is going to do it?”
Muswell Hill-based therapist Martina Moini, who has worked with autistic children for 15 years, said the conflicting information being thrown around is unhelpful and difficult to cope with.
She said: “It’s hard for all of us, but autistic people are much more affected by unpredictability and things that cause anxiety.
“Anxiety sometimes manifests as anger, and a child might be much more aggressive than usual, and have tantrums or self-injure.
“My main advice is to try and make the things you can control at home as predictable as possible, and limiting autistic children’s exposure to the news.”
Golders Green based charity Resources for Autism offers autism-friendly Covid-19 guides and support for parents.