Shopping in the world of Coronavirus: an Autistic’s perspective

For an autistic person, shopping can be a nightmare at the best of times. The fluorescent lights flicker and burn our eyes as they glaringly reflect off the multitude of brightly coloured shiny plastic packaging. The music which blares from the speakers – a marketing ploy to get people in a better mood so they spend more money – has precisely the opposite effect on us, mainly causing sensory overload and abandoned shopping trollies partially filled with goods. Stock shift arounds leave us disorientated and confused rather than making us impulse buy, and the number of families who seem to use the supermarket as a daytrip destination means they’re overcrowded and, frankly, terrifying. This is before we account for executive dysfunction, making sure what we’re buying actually makes meals, and that the use by dates match our meal plans (if we’ve even been able to make them in the first place.)

Shopping during the Coronavirus pandemic is even more confusing. There are allegedly stricter rules, but they’re not working, and while there are fewer people in the shops at any one time the experience is just as stressful, if not more-so, despite the rules being (on paper) quite autistic-person friendly:

Note: suggestions about how to make shopping trips less awful for autistic readers are in italics at the end of each section. Ideas about how supermarkets and their advisors could do better are in bold italics.

  1. Only one adult from each household is supposed to go shopping

    Many supermarkets have made it clear that they only want one adult per household to enter their stores. It makes sense from a social distancing perspective – the fewer people who enter, the easier it is to stay apart – but there is a complete lack of nuance, and there’s also no official guidelines. This means that some stores are turning away people who rely on carers to help them shop, whereas others are letting in entire families without a second glance. (Please note that this isn’t a slight against single-parent households. Until August 2019 I was in one myself. I know you need to take your children with you – this isn’t aimed at you.)

    I am strictly adhering to the guidance for a number of reasons, the main one being that I don’t want the children to potentially be exposed as my youngest is higher risk of complications, and they are too young (and their support needs too high) for them to be left alone, so my partner takes care of them while I shop. He can’t go as he doesn’t drive, but that’s only relevant to explain why the onus is on me – the adult with the higher support needs – to go. I find shopping very difficult, and generally need support. The only reason I’ve been able to manage so far is due to the fear I have of my children going without the food they’ll eat. I don’t get PIP so my partner can’t be classed as a carer, so even if we didn’t have the children to consider, he still (technically) couldn’t come with me.

    I know of autistic people whose carers (also members of their family) have been told they can’t go in, and others who have only been allowed on production of official paperwork from DWP to prove they are disabled and that the person they’re with is their carer. So imagine my horror as I queued to get into Tesco and saw entire families strolling in with their trollies as if Coronavirus couldn’t breech the threshold of the store. This perceived rule-breaking set the tone of my shopping trip, and is likely to cause anxiety and confusion for other autistic shoppers.

    There needs to be official guidance, and that guidance needs to be enforced across all supermarkets in the UK to avoid confusion, contamination, and choler.

    Ask your carer (if you have one) to contact your supermarket of choice to find out what their system is before you go. This way, you won’t have a nasty shock when you arrive.

  2. One way systems

    I’ve only been to Tesco so I can’t speak for other supermarkets, but they’ve introduced a well-marked one way system for shoppers to navigate the aisles while maintaining social distancing rules. They are actually such a good idea I’d love for them to stay in place post-pandemic, a bit like the system in IKEA. However, great ideas are nothing if they’re not used, and people seem to be utterly baffled as to what a one way system actually is.

    I have an ingrained need to follow rules which make sense to me. Nonsensical rules are another matter, but this rule makes sense. It provides a smoother flow through the supermarket, means that you can see items on the shelves on both sides of the walkway, and (as long as you’re patient) means you won’t need to pass people in confined spaces.

    However, I seem to be the only person to follow the rule. I lost count of the number of obscenities I muttered under my breath as, for the tenth time, someone squeezed past me in the butter aisle while strolling over the (to them) backwards arrow. It got to the stage where I actually said aloud “doesn’t anyone know what a one way system is?” while stropping down the world foods aisle, as someone – who’d already pushed passed me three times that day by going down every single aisle the wrong way – once again made me step to one side. I didn’t actually need anything down the world foods aisle, but the system took me that way. The system that’s there to keep us safe, not to inconvenience us.

    Supermarket staff need to manage the systems they put in place to keep us safe in order for them to work. It’s no good sticking arrows to the floor and putting signs up to tell us there’s a one way system if you’re not going to enforce it.

    Be prepared for people to break this rule. It will be hard to accept, but until supermarkets enforce it there’s nothing we can do. Knowing this will happen in itself will help make the trip slightly easier.

  3. Uncertainty about what will be in stock

    While this may be a big deal for all families – we all have a preferred brand of toilet paper, and we all know that different baked bean brands have vastly different flavours – this is horribly stressful for autistic people and their families, particularly if (as in our case) they have a family member with ARFID or any other eating disorder.

    When catering for restricted diets, including those stemming from autoimmune conditions such as coeliac disease, and allergies, one item being unavailable can be a huge deal. It can be the difference between someone being able to have dinner and starvation. This may sound extreme for those of you reading this who don’t have experience in the area, but believe me, it’s not the same as the ‘fussy eating’ you often see in toddlers. If my youngest doesn’t deem what’s on offer safe, he won’t eat. It’s not a case of putting something in front of him and saying it’s that or nothing, he will always choose nothing and will (and has before he was on supplementary feeds) lose weight.

    As it’s not always possible during this pandemic to get what’s needed, you need to be okay with repeating meals using items you can find. I’ve also found social media incredibly helpful, and at the start of all of this when it was impossible to get gluten free pasta, I had several packets delivered to my doorstep by the kind people who ‘live in my phone’.

    Where possible, have a backup in mind if you can’t get your preferred brand. If that’s not possible, ask friends and family to look out for these items when they go shopping and (if they’re able) ask them to pop them on your doorstep for you. Getting Heinz baked beans is essential if it’s the only thing you, or your child, will eat for lunch.

  4. Buying limits

    This is another rule which is brilliant in principle, but doesn’t always work for autistic people. Though I’ve noticed these have started to be relaxed, one person’s hoarding is another person’s weekly shop. Three boxes of Birds Eye gluten free fish fingers may look excessive, but at peak stress, they’re the only source of protein my youngest has other than his Pediasure.

    Supermarkets (and those advising them) need to be aware that there are certain medical conditions which mean people need to consume specific products. If those products are hard to find, while they actually are on the shelf there’s a fine line between panic buying and being sensible. After finding it impossible to buy gluten free pasta at the start of the pandemic, when I started seeing it in supermarkets I’d buy a packet every time I went, even if I had one left in the cupboard. Pasta is a staple in our household, and I’m a coeliac. It’s essential our supply doesn’t run out, and I won’t feel guilty for having one packet open and another spare.

    It’s been suggested by members of the Coelaic UK Facebook group that supermarkets only sell gluten free food to those who can prove they have the condition. While I don’t agree with this entirely (there are plenty of reasons people may not eat gluten) I agree with the sentiment: until people are more sensible about their buying habits, supermarkets need to ensure that certain items are allocated to those who need them for legitimate medical reasons.

    In that vein, I think it’s unreasonable to enforce buying limits (within reason) for those who have restrictive eating, though I’m unsure of a way any relaxation could be monitored other than by proof of diagnosis, which is gatekeeping in itself because many adults are self-diagnosed due to lack of access to diagnostic services.

    It could be worth taking any proof of restrictive eating needs (if you have it) with you while you shop to ensure you can buy what you need, in the quantities you need. While I don’t proclaim this a perfect solution, it’s the only one I can think of right now.

  5. Social distancing measures

    We’re all supposed to stay 2m (6 foot) away from everyone who isn’t in your household. This includes while queueing at the bank; it includes GP waiting rooms; it includes parcel and takeaway deliveries; it even includes supermarket deliveries. So why is it that people seem to think it doesn’t include while shopping in supermarkets?

    The regular Tannoy announcement reminds us all to keep our distance. There are dots and crosses stuck to the floor so those of you (like me) who struggle with spatial awareness can see what distance needs to be kept. So why are people struggling to stick to it? They’re not so bad when queueing to pay at the checkout, where square outlines are taped to the floor for us to stand in, but everywhere else it’s pandemonium. It reminds me of motorway driving where there’s a section with chevrons painted on the road with a sign: keep two chevrons apart. People (mainly) follow this guidance, until the chevron zone ends, and they drive bumper-to-bumper at 80mph again.

    As with the motorway scenario, the main reason for the lack of adherence to this rule is impatience. People don’t want to wait their turn in the bread aisle, they want to nip in, grab the loaf they fancy and get on with their day. The trouble is, when you’re autistic and following the rules, it means you get stuck at the bread shelf for an awfully long time as you wait 2m away from the person selecting their loaf, then 2m away from the person who’s pushed in, then 2m away from the person coming down the aisle the wrong way – I’m sure you get the point.

    Again, this rule is great in theory, but the supermarkets are doing nothing to manage it. They are almost constantly restocking shelves, so there’s often a member of staff in each aisle, or at least at the end of it. A quick “there’s a queue to get to the shelf, keep 2m apart, no you need to go the other way” would greatly help with our stress levels, though I guess the offset would be that it increases the stress levels of the workers as I’m sure there’d be more than one person who demanded to speak to a manager because they feel like the rules don’t apply to them.

    Though it will be stressful, and may feel pointless, keep adhering to the social distancing rules. As with the one way system, knowing this will be an issue in advance is part of the preparation. I won’t lie to you and say it won’t be frustrating, but it is going to happen.

  6. Lack of online shopping slots

    This final one is a strange one, because I wholeheartedly agree that online shopping slots should be reserved for those who are shielding for 12 weeks. They, and members of their household, are supposed to literally stay inside their houses for the full 12 weeks, and many don’t have people who can go shopping for them.

    However, lots of autistic people rely on online shopping for the reasons highlighted at the start of this post, and, as you can see, each point I’ve raised adds an additional stressor to the shopping experience. Though I felt they were tokenistic (and at inappropriate times of the day) there’s no longer an autistic shopping hour, and there’s a lack of clarity regarding whether we fall into the ‘vulnerable’ category for the slots reserved elderly and vulnerable customers. Even if we do, how do we prove it? Autism (along with other neurodivergencies) is an invisible disability, and as previously mentioned, not everyone gets PIP or has diagnostic paperwork to prove they are autistic in the first place. This means that many autistic people are relying on friends and family (if they have them) to get their food shopping, and are losing their much needed autonomy over what is purchased in the first place.

    Supermarkets and those who advise them need to make it clear whether or not autistic people are included in the vulnerable category for quieter shopping hours. They also need to allow some autistic people, who are unable to leave the house, to use delivery slots without fear that they will be cancelled the day the shopping is supposed to arrive. If that’s not possible, they need to come up with another solution – reintroduce autistic hour if possible. Please don’t forget, the hour isn’t only about autistic children, it’s about autistic adults too.

    Moving from online shopping to having to do it in person is stressful at any time. It’s particularly stressful when we’re in the midst of a pandemic, and we’re being told at all possible intervals to stay at home. I find the following helps reduce the feeling of panic I have while shopping:

    • Make a shopping list which is written in the same order as the aisles in the shop. If you’re not sure what that order is, someone on social media will know – post the question and you’ll probably get an answer.
    • Make sure you have alternatives on your list in case you can’t get what you really want.
    • Find out in advance if you can take a carer in with you.
    • Wear whatever makes you feel comfortable and reduces sensory sensitivities. If that means sunglasses, ear defenders, soft clothes and (for those with breasts) no bra, so be it.
    • Be prepared for people breaking the rules. I was really shocked when I first went (which is what prompted this post) and it made me feel really panicky. Now I know what to expect, I’ll still be annoyed, but I won’t be on the verge of a panic attack.
    • Find out from local groups when the quiet times are. Supermarkets near me are currently busier when they first open and at lunchtime (12-1). Going outside those hours really helps.
    • Go down the aisles systematically so you don’t have to go back for something you’ve forgotten.
    • If you can stand the beeps, use scan as you shop. The queues are shorter at the end, and you’re less likely to have someone else touching your items. It also means you can pack as you shop, so don’t have the panic of someone scanning faster than you can pack, while simultaneously trying to figure out if you’ve brought enough bags with you.

If you’re autistic, I hope this helps with preparing you for shopping during the pandemic. If you’re not autistic, I hope it helps you to understand why this is so monumentally difficult for us. If you work in a supermarket, I hope it will help you provide a better serve for your autistic customers. Finally, if you are a supermarket boss, or in an advisory role during this pandemic, I hope it opens your eyes to what’s really going on in your stores. Your ideas are great on paper, but they’re just not working.

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