Shopping with my two autistic teenagers can be problematic, to say the least. In the circles that I move in, I hear many horror stories about people on the autism spectrum becoming overwhelmed by the supermarket environment, the smells, the strip lighting, the myriad arrangement of choice and temptation. We hear that people often ‘meltdown’ – become completely overloaded.
A ‘meltdown’ can become a public spectacle, with crowds gathering, some people desperately wanting to help, others just glad to experience a free show. According to the National Autistic Society, 87% of families say people stare and 74% say people tut or make disapproving noises when they’ve been out and about. We’ve experienced both. This used to be really upsetting and would make it harder to go out but I ended up building a thick skin.
It’s not that people set out to be nasty, it’s just that they don’t recognise that Lenny and Daisy are autistic and what this means. This underlines why it’s so important to keep talking about autism. This is the only way to challenge the many stereotypes and misconceptions that continue to persist – and make it a bit easier for families like ours.
Our family is quite unusual in that the supermarket is a favourite place for both of my autistic teenagers. Being highly motivated by food, packaging, patterns and lights, the sensory experience is delicious to both of them. We’ve spent many rainy afternoons wandering up and down the aisles, often dissuading Lenny from filling his trolley with so many Cadbury’s chocolate bars as to necessitate a small loan.
The trouble lies with me, really, the shopper who must find some way to fill her cupboards with sensible, boring items other than chocolate and cake.
For the shopping experience, Daisy uses a wheelchair. Lenny walks beside me, I encourage him to link my arm so that I am quickly alerted if he spots something and makes a run for it. As well as the wheelchair pushing and the arm linking and guiding, I need to fill the trolley with all of our household necessities. This requires some concentration, and is little helped by the fact that my son immediately removes any undesirable items (vegetables, fruit, milk and cheese) from the trolley and returns them to their rightful places on the shelves.
Daisy is very conscious of the fact that the trolley attached to her wheelchair (and within easy grabbing distance of her lightning fast little fingers) is slowly filling up with delicious treats selected by her wise younger brother, and constantly reaches for these, biting through the packaging if I am irresponsible enough not to remove it immediately. If I stop her, she is liable to scream the place down, or begin to hit herself directly in the face, causing crowds to gather, judgy-faces to be assumed, heads to be slowly shaken.
Over the years Daisy and Lenny have become quite used to the shopping experience, and have learned that many treats can be gleaned. They are cunning, despite their severe learning disabilities, highly motivated by the allure of chocolate. Mums can be cunning too. I have learned some sneaky habits myself, like hiding vegetables beneath mounds of chocolate and explaining in heavily coded messaging to the checkout assistant that not all of the chocolate should be put through the till.
That we live directly opposite a well-stocked Co-op is not ideal. Lenny, ever watchful of security, has his eye constantly on our front door, checking that people exiting or entering have not been foolish enough to omit to lock, double-lock and treble-lock. Should anyone slip up, he will make a break for the sanctuary of the Co-op, filling a basket with fruit corners, chocolate brioche rolls and family sized bars of Dairy Milk. Luckily the staff on the counters are well used to his frenzied visits and are always understanding. They immediately send out someone to knock on my door and alert me to the fact that my son is on a spree.
I slip on the nearest pair of shoes to hand, grab my purse, and am with him in a matter of minutes. He is always pleased to see me, greets me with a surprised smile as though to say “fancy seeing you here!”
Together we pay for his purchases, me slyly informing the assistant which goods we are happy to pay for and keep, and which should be secreted back onto the shelves, and him gleefully filling plastic bags with his booty. This shows the positive difference a bit of understanding from a shop can make.
This doesn’t mean everyone has to be an expert in autism. A general knowledge of autism is going to encourage people to be a bit more flexible and understanding of families like mine. This is why initiatives like the National Autistic Society’s Autism Hour, supported by The Entertainer, are so important. They’re working with shops across the country to help them hold Autism Hours between 6 and 13 October. This means familiarising staff with autism and taking simple steps, like turning down music, dimming bright lights, and sharing information about autism. For my family, we don’t really have issues with lighting or sound ourselves but we could definitely benefit from more shop staff having a better understanding of autism, which is the campaign’s long-term aim anyway.
So, there is a snap-shot of some of my shopping experiences – and some of the things we’ve tried to make shopping a little easier. Needless to say, as the years have gone by I shop less and less with the children, filling my bags and my cupboards while they are at school or respite. This way the occasional whirlwind visit to the supermarket with my children can be a distraction and a satisfying activity for them, rather than an unmanageable obligation for me.
Sharon King is a writer and autism advocate. She has a 16-year-old autistic son Lenny and an 18-year-old daughter, Daisy - who is also on the autism spectrum and has Kabuki syndrome