National Autism Month in April coincided with our strictest phase of lockdown. My son, 36, who has Asperger’s, has consequently been unable to stick to all his routines — one being the Sunday car boot sale on Brighton Racecourse — and I was worried about how he’d cope.
He suggested we watch classic EastEnderstogether from our separate homes and text each other about the personalities and plot. It worked. The episodes from the early 1990s are fast-moving and the characters very real. One scriptwriter then, Susan Boyd, born in Glasgow, hung out with the Jamaican community in Ladbroke Grove in the 1970s. She died at only 55. I looked up her obituary. ‘The woman comes across as unassuming and unmaterialistic and also very talented. Son.’
Like others with his condition, though, my son is unable to stop some of his Asperger’s routines. He is taking buses to Asda as he did before coronavirus, instead of shopping locally. He could be endangering himself and the young carers who come in part-time, but he can’t stop. He doesn’t seem frightened of getting the virus — but would it be worse if he was full of anxiety about it?
Most parents of autistic children, and the children themselves, are finding this situation difficult. I talked to the mother of a 15-year-old who is, she says, ‘profoundly autistic’. He has ‘pockets of brilliance’ in maths, reading and music, can speak five languages and reads fluently — but doesn’t understand what he’s reading and can’t answer what his name is, his age or where he lives. He would go off with a stranger if they had something he wanted and can be violent if upset. She has three other boys.
Last year, she and her husband nearly bankrupted themselves in a court case with the local council over funding, after finally locating a school that suited their son. After battling for nine months — the mother had to give up work — they went to a tribunal to get him six nights a week of boarding at the school instead of four.
The school has transformed his behaviour. His rages have subsided and he’s become calm and curious about the outside world. But the school had to close because of coronavirus. I wonder how many other schools and centres which provide invaluable help to autistic people have shut? I hope they’re brave enough to reopen as soon as they possibly can. It can be catastrophic for someone with autism to disrupt their routine.
Yesterday the mother was told that the school is re-opening — her son can return as a boarder, four nights a week instead of six. If he shows signs of the virus he’ll have to come home. But, she says, the school is doing as much as possible to accommodate parents and pupils. (I know about this school, St John’s in Seaford, as a friend’s autistic daughter, now in her twenties, had her life transformed by it.)
The National Autistic Society’s helpline has had to reduce its hours to between 10 a.m. and 3 p.m. during this crisis. And yet there are many desperate parents with autistic children now at home, in distress because of their disrupted routines.
A few weeks ago, my son’s cat, Bandit, disappeared. I drove over with ‘Lost’ posters and attached them to poles with blue knitting wool, strangely difficult while wearing protective gloves. I walked up the huge field behind his bungalow despite a woman mucking out horses shouting that it was private land. I was a long way from her and kept going. Other locals walking dogs in his street were sympathetic, but social distancing prevented us knocking on neighbours’ doors.
Then came a Facebook message: a dead cat the same colour as Bandit was seen in a garden the previous night, several miles away. I didn’t tell my son, because Bandit, a grey rescue he got two years ago, is his closest companion. He doesn’t have friends. The poor dead cat was removed overnight before I could identify it. Perhaps tele-pathically, my son said he was back in the fields ‘looking for Bandit’s body’ — I told him I was about to enlist a psychic who specialised in lost pets. He said to wait; if she ‘saw’ Bandit’s death he couldn’t take it. In the past two years he has been happy and settled for the first time in his life. I knew if his cat never came back he would find it hard to recover.
I woke the next morning to find a text sent at 1.21 a.m.: ‘BANDIT IS HOME. THANK GOODNESS. HE IS VERY HUNGRY. I AM FEEDING HIM.’
On Sunday, Bandit was on his lap as we settled down to EastEnders, waiting for our normal routines to begin again.
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