There has been quite a lot written recently about four things – how people can deal with being in isolation, how Autistic people can deal with isolation, how kids can deal with isolation, and how Autistic kids can deal with isolation.
Split out explicitly like that it seems off, chopping it up into four parts. There are two ‘cuts’, separating ‘people’ from ‘kids’, and ‘people’ from ‘Autistics.’ Adult non-Autistic seems (surprise) to be the default.
This says that kids somehow respond to and experience isolation and disruption of their normal life differently to ‘people’, i.e. adults, and similarly Autistics experience this differently to ‘people’, i.e. non-Autistic adults, and thirdly that Autistic kids experience all this differently to all adults, and differently to other kids.
Certainly to some extent that’s true, but we could say the same based on people in their 20s versus people in their 50s, people with a physical disability versus abled people, people living lone versus those living in a household of several individuals, and so on.
What is striking about how these topics have tended to be written is not just that these divisions are taken as given, but also that what can be said about any one category can be generalised across all people dumped in one of those boxes. Not all kids are the same by any means, and the same can be said of Autistics of any age, or indeed about any people.
The consequence is that most of what’s been said thus far does not ring particularly true. From an Autistic perspective, for example, there’s been a lot of quips about isolation being basically ‘business as usual’ for us, or that we are uniquely placed to advise non-Autistics about how to cope with long-term isolation. The responses tell it all – a mix of ‘ooh yes!’ and ‘ugh nope!’ in equal measure. You can’t dump 250 million people in one box any more than you can dump 7.7 billion in one box.
However, what we can say is that all the people in all those boxes have one key thing in common. They are all human. That so-obvious-why-are-you-even observation is actually the key to getting discussion about all humans in isolation to ring true.
We are all human. That means, however we might go about interacting with others (or not), we have human bodies, exist within human societies, and have human experiences, thoughts, feelings, desires, needs and so on. Same for a five-year old kid as for an 85-year old. Certainly our knowledge, experiences, and how we express ourselves will vary person to person, but the mechanisms that drive all that are essentially the same.
We all understand that we are individuals, and we are all part of a distinct species called human. We understand, even if we can’t express it or fully understand it in an explicit way, that we live our lives within our own personal spaces, some of them shared with other people, that things in our environment impact how we feel and how we understand ourselves and our place in this world, and that when we act it has an impact on our environment, including on other people.
One element in all that is a sense of what we are entitled to – our personal dignity, and our autonomy. We establish and preserve these through our actions and words. To put that another way, we ‘fill our space’ by setting our boundaries and establishing our rights. To do that, we need to feel some sort of control over the course of our lives.
Here’s an example. If we are using a tool (or playing with a toy) and someone else reaches for it, we can say (through words or actions) “no, I’m using that.” We expect that this will be understood, that a boundary has been defined (albeit a temporary one) which places that object inside what we have defined as our personal space. We feel entitled to tell people to ‘get off my lawn’ as it were. If we’re not using that object, we may well not care less who takes and uses it, but right now, it is ‘ours.’
So what happens when our ability to access that tool or toy, or to retain ‘ownership’ rights, is removed? Past experience has defined our right to access it when we need it (subject to some other person taking temporary possession). Our sense of control – which is our sense that we ordinarily have a right to bring that thing into our personal space and set a boundary around it – has been taken from us. That can be irritating or frustrating. For some it can be deeply upsetting.
That is what isolation is.
It is the experience of finding that your access to things (both tangible objects and intangibles like freedom to meet others, to go to work or school, to sit out in the park in the sunshine) has been taken from you. This is experienced as a loss of control. When that is compounded by other uncontrollables like the risk of infection by a new potentially dangerous virus, uncertainty about when this isolation will end, lack of information about how you will be able to pay bills, when – or if – your exams will happen and so on, the experience can be very distressing. That applies to everyone. The nature of the experience is the same, regardless of how impactful it feels for an individual.
Now to specifics.
One common quip has been that Autistic people will handle isolation easily because (as the stereotype goes) we are averse to social activities, spend most of our time in a self-imposed isolation, and we actually like things to be like that. It is suggested that we can therefore roll through this with ease, and can offer others tips on how to handle the experience.
In truth, this is far from accurate.
In fact, whether it is accurate or not has very little significance, because it is what lies behind all that which actually shapes how we experience isolation. It is not isolation that is relevant here but the why, how, how much, when… Just as we can be irritated by someone reaching for a screwdriver or tablet or Lego we are using, and not care at all when we are not using it, so context is the real driver of how we experience isolation. All of us. Not just non-Autistics or kids or whatever. All humans.
Isolation or lockdown takes away our control. It takes a piece of the space we feel entitled to lay claim to, and takes it from us. That may be losing access to a daily visit to your parents, loss of your job and income, no right to do your daily 10km run or swim at the pool, or it can just be loss of the option to choose to walk to the park after lunch one day.
And here is where the assumptions about Autistic people calmly rolling through this experience starts to get turned on its head. If you have a single social outlet – say playing Dungeons and Dragons once a week with a handful of friends – losing that can be as impactful, or even more impactful, than being unable to go to work. What matters is how significant that is for how that individual lives, and how many options they have to secure control over an alternative.
If you cannot go to work and cannot meet up with friends, but can still drive to the mountains and go for a walk with your kids twice in the week or watch a movie with your partner or play video games with your brother, well it is a bit frustrating but there are still options. If you were relying on one event in the week for human contact, all the books and movies and social media in the world cannot fill that gap. What matters is how significant that lost experience is for that person at that time.
To dig into this a bit further, the more significant an experience is, the more emotional weight it carries. That DnD session may be what sustains you for the remainder of the week, bringing a flood of positive experiences to your parched inner self.
And what of Autistic people providing non-Autistics with cool tips on how to be a reclusive, isolated, asocial person? Well, putting aside the fact that most of us are not like that, or do not wish or choose to be like that, what works for one person won’t work for another, especially if they come to the same circumstances from different places. While one person may embrace isolation to dive into box sets or become engrossed in hobbies that they rarely have time for, if that makes up a significant part of your life anyway, its relevance and thus significance, and thus emotional weight, and thus potential to sustain you is considerably lessened. What works for a person who lives a largely isolated life simply is not going to work for someone coming to the experience fresh, and vice versa. Certainly you can grow into or out of ways of filling your days, but that takes time and often involves building up a new context and priorities. Even then, knowing this is a temporary or a permanent state of affairs remains in the background and colours the experience.
And this brings us back to the business of feeling in control. Knowing, for example, that you will be in isolation for 14 days, or six weeks, you have already got some control. You know you will be isolated, and for how long. You can quantify the experience, put an edge on it and decide what to fill that space with. Not knowing how long it will be for, not knowing day to day or week to week how the parameters of that isolation will change strips away a lot of that control.
The people who feel that most are those who either have a long history of feeling unable to access control, those who have limited options to re-establish a sense of control, and especially those who fit in both categories. Many Autistic people fit in both categories. Their experience of a shifting, ill-defined, open-ended uncertainty about the nature and extent of their current circumstances is for many a chronic, life-long thing. Dropping another major shifting, ill-defined, open-ended uncertainty called enforced isolation or lockdown greatly exacerbates that experience. Far from being ‘business as usual’ it can be – and as many accounts have shown, is – deeply distressing.
So, please do not turn to us asking for handy tips on being a sad loner. Not only are most of us not ‘sad loners,’ where it exists, we experience our isolation differently, and actually we are likely to be coping less well with all this than you are. Pick your own boredom-alleviating entertainment, please.
To pop over to the topic of kids (remember them?) and their experiences. To a great extent isolation impacts them similarly to adults. The details are different but they are nonetheless humans. Uncertainty has the same effect. Broken routines have the same effect. The sense of lost control has the same effect.
Most kids have been pursued into isolation by a barrage of efforts to get them to keep doing school stuff, in the belief that they absolutely need this both to remain on top of their education and so as to ensure they retain something familiar in their daily activities. Very, very few kids are going to be okay with this. Being at home doing schoolwork is not being at school doing schoolwork, because being at school is about vastly more than the elements of the curriculum.
We have as a society been suckered into the belief – now too rarely questioned – that the pursuit of schoolwork is utterly essential, something that deserves the central place in children’s lives, without which their forward charge to adult competence and college and career and ‘success’ cannot proceed. It is not. More, it is actually not that significantly impacted by losing a couple of weeks or even a month or more. Ground can be regained surprisingly quickly, and when every kid in the country is in the same boat, it is worth remembering that progress matters as much relative to a child’s peers as it does relative to some external chart of ‘development.’
Kids do need structure, but it gets forgotten why they need it. It is not because without it they will magically dissipate into a cloud of molecules and be lost forever. It is because structure provides a well-established framework in which a child can practice defining and shaping where and how they exercise control.
What creates that structure in a classroom of 30 kids is relevant to that context, and not at all relevant to doing studies at the kitchen table. Being at home for an extended period is entirely different, and opens up new opportunities for ways to learn, explore and discover that may be utterly different to those in the classroom or playground, but are nonetheless useful – even vital – and even if not directly replacing what is gained in a classroom, are very much complementary to that.
This is a novel notion to many people, giving children control in new and unfamiliar circumstances. But it works. Not only to provide an alternative but as a means to grow and develop, and kids often embrace this experience, even those who might be least expected to do so.
Here are some suggestions that are as relevant to a kid with an intellectual disability as to a kid with regularly ‘acts out,’ has an eating disorder, typically aces tests in school, is hyperactive or is reclusive… because in the end they are all just humans.
Start by establishing what the context is – we are in isolation, and it’ll last for a few weeks. It is a new experience and the old rules and structures are gone for now. Allow them time to settle into that and find their footing before trying to push too hard to replace structure. People need time to figure out the lay of the land a bit. Now, ask them to start experimenting with creating new structure. It will be awkward, faltering and involve several failed efforts, but that’s actually good. You have the time and space now for that experimentation. Let them decide some rules around how their days are structured. You will be surprised how mature and sensible their suggestions are. Encourage them to get those plans on paper, and set a point in time to come back and review their effectiveness. Engage in discussion about how they worked or didn’t, and what ways your kids can reframe (or bin) them to make the days work better. This is an adventure in ‘being grown up’ and your open-mindedness and their sense of exploration and ownership is what it is all about. Enjoy the experience. Laugh together when the plans fail spectacularly, mop up the mess, and try again. Not only will this build your child’s confidence and maturity, it will help strengthen your relationship by fostering trust and respect on both sides. Oh, and expect to be surprised. Many times.
To finish, I will outline some of the ways that this current crisis is impacting many Autistic people – and indeed many other marginalised, isolated or vulnerable communities.
Central to this experience is uncertainty, our constant companion, and central to that is the changing advice and rules. So many vulnerable people, and especially Autistic people, have found vague instructions about ‘limiting contact’, ‘going out only for essential activities’, only shops providing ‘essential services’ being open and so on to be deeply stressful. Everyone needs clarity and, though that is a rare commodity currently, that is no excuse for not being diligent about carefully defining the new parameters on our freedoms and options. The more uncertain your circumstances are, the more that certainty matters. When you have little control over the course of your life, every scrap matters, as many in society are just discovering for the first time; this is our daily experience, welcome to our wibbly-wobbly world!
One other worry that is commonplace is about access to services, healthcare and supports. While many are not reliant on any of these during their daily life, for those that are worries about a home help being unavailable, being able to get to the pharmacy or GP, dealing with services that are suddenly shifted from overstretched to almost gone, facing the prospect of dealing with an already stressful experience like attending a hospital becoming something entirely new, a carer being replaced on short notice, not knowing if a therapy or appointment still even is going to happen, and so on is potentially terrifying. That nobody can guarantee what will happen tomorrow or in a week’s time only makes that worse.
And then there’s that one weekly meetup for coffee at a hotel that is now closed, the DnD session that cannot occur, the library that is unavailable, the lift to get shopping that cannot now happen.
There is a vast difference between finding half your many certainties of life gone and finding your three precious certainties gone.
So, once again to those who want to half-jokingly lean on Autistics for suggestions, please back off and consider that we are probably enduring a lot more than you can imagine, and perhaps you could help us more than we could help you. For Autistics, please keep talking about your experiences, keep reaching out to your community, forgive yourself, treat yourself, indulge yourself a little more, and don’t forget to ask for support and help from your peers. We do get it and between us we can and will get through it. And for all parents of whatever neurology of kids of whatever neurology, this is a time for your young ones to explore new things on their own terms – the lost structures may be disorienting but they are also opportunities, and simply realising that is a great learning experience to savour.
Most of all, please let’s all remember that each one of us is just another human being – flawed, confused, disconcerted by events, worried about tomorrow – just as we all are. Let’s reach for a bit of patience and compassion for each other, put down the judgements for a while and reach out a bit more. This is a shitty, stressful time for everyone but everyone has something to give and something they need. Together – for all that we are forced apart – we have what it takes to come out of this stronger, better and wiser.
© 2020 Stiof MacAmhalghaidh
Today’s ramble was brought to you accompanied by a soundtrack of… silence.
Two hours with no noise, no music, no voices. Seemed appropriate.