Routine developments
The Covid-19 lockdown has impacted life as we know it for many people, not least those in the autistic community.
In this column, Sycamore Trust Autism Ambassador Robert Lamb examines some everyday areas where rules have changed in the short term, and discusses how people with autism may be affected.
Autism Ambassador Robert Lamb
The lockdown has presented many challenges for the autism community. In this article, I’ll be discussing some of these, using quotes from autistic individuals in the media to provide real-life examples.
The biggest challenge for people with autism during lockdown has been the change in routine. Depending on what characteristics of autism they have, some autistic individuals might think that lockdown has not changed their life at all, as they spend most of their time in their bedrooms playing video games. However, others might see it as a loss of their social life and a significant change to their normal routine (me included).
An example of the former is Victoria: “I normally don’t mind staying home, but right now there’s a difference: choice. I do not have the freedom to choose. A man in a fancy suit is telling me to stay at home” (National Autistic Society, 2020). Ben is a good example of the latter: “The first few weeks of lockdown were really hard. I sometimes felt like screaming at the walls. It was a very dark time. I spent a lot of time watching the news and reading about the virus on social media. I also found it really hard to set up a routine and maintain a regular sleep pattern. This has gradually improved, and I now try to go to bed at a decent time. I miss my friends so much. It just makes my heart so sad and I feel really alone and lost. Although I know we are all in this together, I also know that everyone is different. ” (National Autistic Society, 2020).
Ben’s quote is also a good example of another effect of the lockdown on autistic individuals – the increase in isolation. Author, speaker and autism champion Andrew Edwards says that he would have preferred it if lockdown came straight away “rather than the dithering that ensued in the first couple of weeks of spring” (Edwards, 2020). This is because some autistic people find that they can process things better if they are rigid and concrete, rather than “bit-by-bit” (Edwards, 2020).
This doesn’t just apply to changes of routine in social life, however. People with autism have had to deal with changes of routine in their working lives as well, as this quote from Jake shows: “I am autistic and I am keen on my routine in life. I work full time as a bus driver and the coronavirus outbreak has had an impact on the way we run our services. Fewer buses are needed on the road, so our shifts have had to change at rather short notice. I have also had to adjust to different times on our usual routes. My work have [sic] been very supportive through all this, and my managers and colleagues have all really looked out for me” (National Autistic Society, 2020).
Laura James, author of ‘Odd Girl Out: An Autistic Woman in a Neurotypical World' says another challenge for autistic people during lockdown has been navigating confusion and uncertainty. She says: "I think a big part of the challenge for autistic adults is the lack of clarity. You get the government announcement, and you think you understand it, but actually the guidance isn't that clear and everyone's interpreting the rules differently. I can't speak for every autistic person but generally, autistic people are obsessed with clarity: we just need everything to be very simple and very clear, and we're very rules-based. As some autistic families will know, one of the biggest everyday challenges faced by autistic individuals is shopping, due to the large amount of sensory data in shops. However, this has been much amplified throughout lockdown and has even given autistic individuals who do not normally have sensory issues an insight into how ordinary shopping trips feel for those who do have sensory issues, let alone without social distancing in operation! This is exactly how I felt.
This quote from Jake reflects this: “The social distancing rules in supermarkets have thrown me a bit, especially when it comes to queueing outside. I can understand why this is being done in the current circumstances, but the sudden change has still been very overwhelming. I am now unable to go into a supermarket without getting confused or having a meltdown” (National Autistic Society, 2020). Laura James says another challenge of shopping during lockdown is that “often [they] need to have sameness in food and drink to make us feel safe. What I'm seeing a lot of is parents of autistic kids saying their child will literally only eat this one brand of crisps, or they'll only eat chicken nuggets from McDonalds, and they can't get that anymore” (Patient, 2020).
Even autistic individuals who normally use online shopping have had to change their routine, as this quote from John demonstrates: “Because of the mass panic-buying, our usual routine of online shopping is heavily disrupted, and a trip to any supermarkets (though distressing enough as it is), becomes even more overwhelming and agitating when all of the shelves have next to nothing left as everyone runs around with overflowing trolleys. With this [in] mind, we have had to reassure ourselves with what supplies we already have in, make a list, and then build the confidence to trek to several smaller local shops to purchase sensible amounts from each i.e. 2 tins from one shop, 2 tins from another etc” (National Autistic Society, 2020).
Another sensory issue which is being faced by people with autism is wearing face masks. Dr. Radica Mahase documents how her 10-year-old son, Rahal, does not understand why he has to wear a face mask. “Because he is sensitive to most fabric (we choose his clothes very carefully) he couldn’t use any of the face masks we bought. In the end we took one of his old T-shirts that he was comfortable wearing and we made a face mask for him. At first he kept pulling it below his nose. Now he keeps it on but not for more than ten minutes” (Newsday, 2020) and “He keeps asking why he has to wear the face mask, why there are no tables and chairs in the food court, why he can’t sit and eat there. The first time we went back to the mall he was so overwhelmed by the changes that we had to leave. The girl said she couldn’t serve us if he didn’t have on his mask properly and that threw him off. I kept explaining to him that she was just doing her job and sticking to the new rules. But even now he keeps asking if we’re going back by the ‘bad girl who didn’t give him food.' All we can do is keep explaining to him and answer his questions” (Newsday, 2020).
Wearing face masks has also been an issue for me personally. The problem for me, though, lies more in the loss of ability to read people’s facial expressions. As some families of autistic individuals will know, facial expressions are very important for autistic individuals to be able to interact properly, as they help us to better understand people’s emotions, especially if they’re joking or being sarcastic. When people are wearing face masks, however, this becomes much harder for autistic individuals. I acknowledge that the UK government has made an exception in its new face mask rules from 15th June onwards for autistic people not to wear masks if this upsets them, but when you’re an autistic individual who doesn’t have sensory issues like me, any other excuse feels lame and you still feel obliged to wear them. There are also cards available that people with autism can carry, in the same way as an autism alert card, to show that they are exempt from wearing face masks under the law. However, I’m weary of carrying autism alert cards, in case some authority figures don’t recognise them and, as Laura James puts it, “it can be quite stressful to think you might be breaking a rule, and to see other people breaking the rules" (Graham, 2020). I also acknowledge that there are masks available which have transparent mouth areas, which are very useful for people that need to lip-read. However, these have mostly been marketed for sign language interpreters or carers. Therefore, when you’re an autistic individual who doesn’t need to lip-read or who doesn’t have a carer, but just needs to be able to understand facial expressions, it can make you feel awkward, as you feel you are potentially making those masks less available for those sign language interpreters or carers, in line with the way that the government are telling the British public not to buy the N95 standard (medical grade) face masks, so that we can keep the stock for front-line NHS workers who really need them. Therefore, as with many other things in my life, I feel as if I am very “on the fence” about whether I should be exempt from wearing a face mask or not.
So far I have talked about how lockdown has been difficult for people who have autism alone. However, it has been even more difficult for those who have other conditions alongside their autism (co-morbidity), as Ian’s quote confirms: “I am autistic and currently shielding. I am married with twins and work full time. Only a select few people at work know that I am autistic. Although I fit into the 'extremely vulnerable' category, none of my conditions are visible and I don't tend to tell many people about them. People just look at me as a thirty something fit and healthy man. They don't see how I really feel beneath the surface…I didn’t initially receive the NHS letter, so I felt my anxiety lift slightly. That was brought crashing back to earth on Monday (when I got my letter) and I’ve gone into overdrive. I am constantly taking my temperature and using my peak flow about 10 times a day” (National Autistic Society, 2020).
The lockdown has been harder still for autistic young people who are being kept in institutions. The Joint Committee of Human Rights has found that the human rights of young people with autism have been abused, since the lockdown means that they are unable to see their parents, despite the national guidance being sent to hospitals saying that all inpatient settings can allow visitors "when local organisations agree it is safe and appropriate to do so", and there must be "no blanket ban" (Birchley, 2020). Andrea Attree, a mum whose daughter, Danielle, is currently detained in an institution, says “Dannielle [sic] suffers with paranoia so she thinks sometimes that I don't want to come or I don't like her. It just heightens all those anxieties and then obviously the more anxious she becomes, the more she self-harms and it's just a vicious circle" (Birchley, 2020).
While in the UK the government has recognised the needs of autistic people by allowing them more than one form of exercise per day as from 20th April, in South Africa, the autism community is pleading with their government for them to relax the lockdown rules. The charities Action in Autism, Autism Western Cape, Autism South Africa, Els for Autism, Autism Eastern Cape, Autism Limpopo, The Centre for Autism Research in Africa and Jozi4Autism are asking for the easing of lockdown restrictions to allow daily walks and exercise for autistic people and carers; access to helpers and/or carers to give home support; funds for social relief and feeding schemes; and the re-opening of care centres to admit autistic people in distress when their families can no longer cope (Broughton, 2020).
Texting is a form of communcation favoured by many in the autistic community
However, the impacts of the lockdown on people with autism have not all been negative. Kylie Noble says she developed severe anxiety and depression after moving from London to living with a friend in Doncaster and changing jobs, all in one weekend (Noble, 2020). However, she visited a mental health nurse, who increased her antidepressants and Kylie slowly began to feel better, until her friend decided to leave the flat and isolate with her partner once lockdown began, leaving Kylie to live by herself for the first time in her life (Noble, 2020). However, Kylie says “I had long dreamed of this” (Kylie, 2020) because “most of my previous house shares had been exhausting – I don’t like the small talk, drama and the noise of having roommates. But I did wonder if I’d be able to cope by myself, when I had been so unwell just a few weeks earlier” (Noble, 2020) so “I needn’t have worried. Living alone now, I felt a deep-rooted contentment. I really love the solitude. As a long-time insomniac, I have started sleeping better. I’m cooking more. My creative energy for writing is returning. When it comes to communication, I’ve always preferred texting or emailing and can go longer than a lot of people without face-to-face contact” (Noble, 2020). She even goes as far as to say that “this time in lockdown feels like one of the happiest periods of my life” (Noble, 2020). Kylie does, however, acknowledge that she misses catch-ups with her friends, “the ability to roam and people-watch in a café” and “Not all autistic people feel as I do, but this slower-paced, calmer world in which we don’t have the same pressure to be social is a welcome shift for many” (Noble, 2020).
So, the biggest ways in which lockdown has affected the autism community are in terms of the change in routine (both socially and economically) and the increase in isolation. Lockdown has also changed the shopping experience of people with autism in two ways: 1. It has amplified the everyday issue of sensory overload and, from my personal experience, given those without sensory issues an insight into what shopping trips feel like on a daily basis for those with sensory issues. 2. It has forced a change in the shopping habits of people with autism, even for those who normally use online shopping, as John’s quote demonstrated. Wearing face masks has also heightened sensory issues in some autistic individuals and, both from Dr. Radica Mahase’s and my own personal experiences, caused some confusion for some people on the autism spectrum. Some of the hardest-hit autistic individuals have been those who have co-morbidity, as it has heightened their vulnerability, and those who have been kept in institutions, since they are unable to see their parents. We have seen from the example in South Africa that some governments have been more accommodating than others in trying to recognise the needs of people with autism during lockdown. Finally, Kylie Noble’s experience has demonstrated that the impacts of lockdown on the autism community have not always been negative and some autistic people can cope and even prefer with this “new normal” – for her, lockdown was a retreat from a chaotic, busy world to a slower-paced and calmer world.
References:
Birchley, E., (2020) available at: https://news.sky.com/story/coronavirus-children-with-autism-stopped-from-seeing-parents-during-lockdown-12005079
Broughton, T., (2020) available at: https://www.news24.com/news24/southafrica/news/covid-19-autism-community-pleads-for-relaxed-lockdown-rules-20200426
Edwards, A., (2020) available at: https://www.autismtogether.co.uk/living-with-autism-in-lockdown-by-andrew-edwards/
Graham, S., (2020) available at: https://patient.info/news-and-features/covid-19-how-does-the-coronavirus-pandemic-affect-autistic-people
Mahase, Dr. R., (2020) available at: https://newsday.co.tt/2020/06/22/autism-challenges-and-the-new-normal/
National Autistic Society (2020) available at: https://www.autism.org.uk/services/helplines/coronavirus/resources/stories-from-the-spectrum.aspx
Noble, K., (2020) available at: https://metro.co.uk/2020/05/19/autistic-lockdown-improved-mental-health-12690819/