‘We will continue, way beyond lockdown, to try to navigate for our son the complexities of the human world’
BBC drama The A Word offers some welcome insight into life with an autistic child, writes Fiona Atherton but lockdown has thrown up particular challenges for her autistic son and the rest of the family, as vital routines have been thrown into disarray
Icame across a post on an online forum recently that bluntly assumed that “the autistics” (always a strange term – akin to “the epileptics” or “the diabetics”, umbrella-ing every aspect of a person’s personality under a particular diagnosis) were having a pretty easy time of it. After all, they like being alone? They don’t like other human beings anyway, right? Surely the UK’S current lockdown suits them perfectly? Naturally, none of these suppositions were phrased as questions.
The truth is that there will be a group of people with autism – just as there will be a group of “neurotypical” people – who find this lockdown a blessed relief. For some, social interaction is indeed a necessary part of existence, nothing more. If it can be excluded from daily life then all the better. But this is not the rule of thumb amongst the autistic community, just as it is not the norm amongst neurotypicals. As the saying goes, “if you’ve met one autistic person then you’ve met one autistic person”.
What confuses people is the chasm between social interest and social ability. My 6-year-old autistic son has an abundance of social interest
– he loves people in all their confusing beauty – but his social abilities are dwarfed by that interest. He simply cannot confidently manage the minefield that is human interaction.
Inevitably, and thankfully, conversations around autism will be given a boost by the reappearance on our screens of BBC’S The A Word – now in its third series – which follows a family after the diagnosis of Joe. I always feel a pang of sympathy for the makers of dramas that represent any disability – surely they’re damned if they do and damned if they don’t. Television is constantly criticised for under-representing the disabled community, and yet the minute they do they are generally lambasted – often by the very community they’re trying to respresent – for overgeneralising.
We all know that there are good and bad examples of these dramas – some are shoddily researched, clumsily written and are more detrimental than no representation at all. But The A Word doesn’t fall into this category, and the inevitable accusation that it relies on stereotypes and clichés in order to produce drama, whilst fair, is also, surely, necessary.
After all, my complaining that my unique 6-year-old is not accurately portrayed in The A Word is surely akin to raging that a 70-year-old Mancunian aunty is not directly mirrored in Coronation Street. Drama relies on generalisations about character and human experience, and I think if autism is featuring on primetime BBC then all the better.
And let’s face it, we’re all desperate for good television during lockdown.
Ours is a kind of strange lockdown, I suppose. Strange in the sense that we’re not finding the same things difficult as others are. Yes, we are desperate for the freedom to go to the shops whenever we please and to see family and close friends; to start making plans again. But we have spent three years now avoiding crowds, constantly assessing risks, avoiding many social gatherings and limiting peer contact. None of this is new to us. Families living with autism have been practising some of this stuff quietly, seemingly calmly, swan-like, every day, for years – not all of of it, but some. And at no point will the Prime Minister announce that we can stop.
Our lockdown challenges come in different guises. Our lad is hypo-sensitive, in the main – that’s to say, he seeks more from every sensory experience and constantly needs more “input” in order for his nervous system to be organised and just alert enough to operate well.
At school, he has an additional support needs assistant who works tirelessly to try to ensure his day is just stimulating enough, in sensory terms, to keep him level and functioning. He loves swimming and all the intense stimulation that provides. He pony rides weekly – the ultimate therapy for a boy who craves endless movement. And our weekends are spent doing the things he loves – visiting the local air museum, eating in familiar cafes, spending time with family.
One day in March, all of this stopped. But my son’s sensory needs did not. In fact, they became more intense, because when the nervous system is taxed by uncertainty – something the autistic brain struggles with, without exception – the sensory needs become greater in an effort to self-regulate.
Fast-forward six weeks. We have a bouncy castle in our garden (bouncing is a very strong sensation), and have invested heavily in space hoppers. A tent has been erected (apparently good for autistic kids, although I’ve never found them to be any more interested than any other child), and, despite the Scottish breeze, paddling pool and sprinkler are part of the prebath fun. We may as well have taken out shares in bubble companies, and the ultimate party trick is for our son to climb to a really precarious spot – roof of the Wendy house is the current favourite – to blow bubbles for hours and watch them soar into neighbours’ gardens.
So far so good. The problem is, none of this is enough. We go for three-hour-long bike rides (exercise rules have
We have spent three years now avoiding crowds, constantly assessing risks, avoiding many social gatherings and limiting peer contact
been relaxed for the disabled population), and spend pretty much every waking minute of the day in the garden, regardless of temperature. Still the needs are not met.
Since lockdown, I have found my son sticking his head down the toilet as he flushes, simply to get the full sensory experience. And the stonethrowing. The stone-throwing is relentless. We are lucky enough to be able to bike to a beach almost every day – the happy place – where chucking stones is not a problem and the only risk is the inevitable unscheduled, sensory-seeking dip. But at home, the throwing continues. It’s a compulsion. And it has been for years. But it’s worse since lockdown. When everything else stopped.
A whole host of new Ocdlike behaviours have also come our way – some physical and very new, some verbal and long-standing, but now more apparent, more overbearing. They vary in severity. Some days are happy despite them. Others are a real slog – watching a young lad try to escape the ritualistic prison his own nervous system is creating just to help him cope.
We answer the same questions time and time again, robot-like. This is not the enquiring mind of a toddler, desperate to learn the next fact. This is the same question, hundreds of times a day. The same question, which must have the same answer, phrased the same way. It’s about security and self-soothing – the predictability of knowing the answer you’re going to be given. Even my three-year-old now knows the scripts his older brother needs to hear and patiently recites them.
Current fixations include the antelopes in a particular kids’ movie; the exact chronology of a birthday party we attended two months ago; and the details of where our neighbours will be standing during the Thursday night clapping for the NHS and what they will be wearing. As a mum, you can mitigate a lot. I can watch the angry cartoon antelopes as many times as required and can relive the horror of the birthday party if I must. But I have no (legal) way of knowing what our neighbours are wearing. There is only so much certainty I can offer. As a parent, that’s a killer.
But we will continue, way beyond lockdown, to try to navigate for our son the complexities of the human world. It’s not always a cake walk, but it’s justified a million times over by his absolute longing to be part of it and to understand it. And around the world there are millions of families like ours. Talking endlessly about antelopes, reliving distastrous birthday parties, and trying to hazard a guess at what their neighbours are wearing.
● The A Word is on BBC 1 on Tuesdays at 9pm