A Remedy for Loneliness: Mutual Aid and Autism

I enjoy being around people,

That might sound strange, considering stereotypes around autism. I don’t always like being around people. Its not unusual to find me secluding myself for a few hours everyday, recuperating from the sensory overload which comes from feeling crowded. That said, I do enjoy the sensory stimulation that camaraderie brings.

Socializing and being around others be that in a workplace, at a concert, or in the comfort of our own home is very much a part of our society…most of the time. When talking about autism the issue of loneliness gets swept under the rug as ‘they’re used to being alone’.

When I did voluntary support work for autistic adults some would find comfort in a level of seclusion, but most would like some form of interaction. So while some enjoyed the humm of city life more than the walls of thier living setting, some actually felt incredibly cut off in busy environments. There is after all, more than one way to feel lonely.

That last point is what I want to focus on. The different types of loneliness, and how mutual aid provides a blueprint for helping autistic people to be part of thier community. Behind any serious effort to combat loneliness though, has to be a willingness for communities to come together as a movement to form ‘spontaneous, long-lasting, and beneficial associations’

Loneliness

A complicated issue which effects many groups, according to the National Autistic Society, 79% of autistic adults feel socially isolated.

I can personally relate. I’ve described before how sensory stimulation can be overwhelming. However, its friendly environments where I feel happiest. I mainly become overwhelmed when I’m in a sensory environment that I’m not a part of. Picture this: you’re in a crowded festival, the streets teem with revelers. The sounds and sensations of liveliness are all around you but you’re not part of any of that. You can’t find your friends, though you certainly don’t want to leave. Confusion sets in. Confusion turns to panic, anger and frustration. You’re in a busy environment, yet you’re isolated.

A significant amount of research into autism has focussed on children. This often leads them to becoming more isolated as they grow older and try to adapt to the world around them. Its important to realise the effects that a sense of isolation can reap.

Autistic adults are at a higher risk of physical and mental health conditions including depression, diabetes and heart disease. They are also more likely to die early. Indeed, the impact of loneliness has been scientifically estimated to be as damaging as smoking 15 cigarettes a day.

Without the support network they need – and sometimes without even having been diagnosed – adults with autism struggle to to access housing and medical services. When I was an outreach worker I encountered individuals whose lack of support had forced them into group homes where they were not physically alone – if anything some of the homes I went to were overcrowded – but experienced a sensation of loneliness, whereby they felt thier sense of routine and emotional support broken. I felt a huge degree of responsibility knowing that I was sometimes the only person providing that familiarity.

Houting argues with reference to covid-19 that many autistic people were already experiencing that sort of isolation brought on by lockdowns:

“There is a vast difference between choosing self-isolation out of preference, and choosing—or being forced into—self-isolation out of necessity. Many autistic and otherwise disabled people live lives of isolation not motivated by preference, but motivated by self-preservation. Exclusion, bullying, harassment, and abuse; inaccessible physical and social environments; and a lack of appropriate services and supports can mean that for many, self-isolation is the only option. Now, the broader community is being faced with the circumstances in which too many autistic and otherwise disabled people find ourselves every day. I can only hope that this might engender empathy for our experiences, and prompt more allies to work together with us to build inclusive, accessible communities when this crisis eventually ends”

Jac den Houting, Stepping Out of Isolation: Autistic People and COVID-19

This is part of the reason why autistic people as well as support groups emphasise the value of social connection. Its vitally important for autistic people to have support networks and ‘buddies’, in a way which transcends the traditional ‘helper-helped’ relationship….

Mutual Aid

“The mutual aid tendency in man has so remote an origin, and is so deeply interwoven with all the past evolution of the human race, that is has been maintained by mankind up to the present time, notwithstanding all vicissitudes of history”

Peter Kropotkin. Mutual Aid: A Factor In Evolution

Traditionally, help available to autistic people has reflected a ‘helper-helped’ relationship – whereby an autistic individual is allocated a support worker who assumes the responsibility of helping that individual. While there’s nothing wrong with that, within restrictions of resourcing and having to have activities ‘signed off’, any approach which focuses purely on formal methods of extending help will likely be inadequate.

With Covid, Mutual aid activities began small scale; delivering essential medicines and food, though many have gone further through activities like cooking healthy food for those who are shielding, setting up helplines, holding virtual meet-ups, and raising money for households who are suffering the financial effects of the crisis.

While it is true that many autistic people are eager to return to the outside world, the extra sensory stimulation of the new environments fostered by social distancing might be difficult for autistic people to comprehend at first; This is where the traditional activities associated with mutual aid are really useful. For many autistic individuals having people from thier communities deliver supplires, or form a ‘bubble’with them, might be incredibly affirming for thier health.

Covid has exposed how sensory the outside world can be. Social distancing guidelines are encouraging roads to be closed, for people to walk on one side of the street or for music to be turned down in shops so that people don’t have to speak loudly. I don’t think people truly recognized how ‘noisy’ the world was. Which elements of the new world we want to keep is a subject for another blog post, but the long term effects of widespread mutual aid programs may bring people metaphorically closer together, creating communities of positive reinforcement so that all people – not least those who are autistic, do feel safer going to the shops, going for an appointment or seeing live entertainment.

“The real, pivotal impact that Mutual Aid groups have had during this crisis demonstrates the potential of community power. More specifically, it demonstrates the potential of a less formal, community-led, and more human way of thinking about responding to people’s needs, outside of the traditional public service framework that is the established and dominant model of deploying support. With extraordinary speed, the most successful of these groups identified the most critical needs in their communities and met them with a holistic approach that has strengthened the local social fabric and improved all participants’ wellbeing in a time of crisis”

Communities vs. Coronavirus, the rise of mutual aid

Part of the strength of mutual aid groups is thier spontaneous and horizontal nature. The point is not putting people in charge. Rather, people are coming together as equals to solve a problem, whilst evading traditional routines of management and administration. For that reason they rely largely on people trusting each other; In the case of the coronavirus this has allowed groups of volunteers to reach people quickly.

Challenges come through attempts to control aid groups by authorities. A quote by a volunteer, cited in the rise of mutual aid report states that: “The council wants to professionalize everything. They want groups to fit into their corporate plans. It’s really unhelpful.” For that reason it is important that councils take a facilitation approach in helping to connect different groups, budgeting and working with local businesses and charities to be part of mutual aid programs. This approach helps to retain the horizontal, community minded approach to working, without centralizing decision making or slowing process’ down.

One sticking question that I will conclude on, is the extent to which the concept of mutual aid is political. Those struggles over top down vs bottom up organising prove to me that the idea is at least in part political. That said, one of my traits is a tendency to see everything through a societal, wide angle lens. The easy answer to this would be that the activity itself may be political, but proving a point shouldn’t be the priority. Still, theres something inherently political about communities coming together in a non-hierarchical way to help remedy pressing social issues like loneliness. Either way, the concept certainly beats division and selfishness.

An Atypical Perspective…

There’s more than one kind of loneliness: While the standard perception of loneliness is being on your own, there are a number of elements which can make people feel lonely. In the case of autism, over stimulation and feeling cut off from the world by struggling to comprehend everything going on around you can cause loneliness. Lack of support means that some autistic individuals especially, suffer chronic loneliness later in life, making them choose isolation out of necessity, or else places them in environments where thier needs are not best met. The detriment to mental and physical health caused by this illustrates the need for support networks…

Mutual aid presents a template for offering support: Insofar as existing methods of authority-mandated support has gaps, mutual aid i.e communities coming together to support each other, presents an alternative model. This is not to say that future efforts to support the vulnerable, should be entirely charity focussed but that the model itself is promising. Through actions such as delivering essential resources to the vulnerable, organizing community get togethers and creating dedicated support networks for those who are suffering, the approach creates a form of psychological safety. This transcends the necessary but often limited help provided by short time support work.

Community organising is personal and political: From a personal perspective, mutual aid schemes help foster positive communities through supporting some of the most vulnerable people within them. This should be the primary motivator behind them. However, through mutual aid, you are intervening in a scenario where people have been ‘left behind’ and presenting an alternative method of help, which runs contrary to the individualistic mindsets of ‘deal with your own problems’ and ‘one size fits all’ methods of combating isolation. Mutual aid activities present a different way of thinking about our relationships, which in turn imparts questions about how we run our societies, especially during times of crisis.

‘Proving’ my Autism: Malicious Compliance and Bottom-Up Thinking

If you’re disabled, you have probably had to endure the process of proving your disability, usually to receive some form of support such as personal independence payments. If you’ve ever had to fill out one of these forms, amidst the obviousness of knowing you’re disabled, you’ll know exactly what I mean.

“Describe in precise detail the way your disability effects you”

This depends weather you’re asking me at the moment or generally. In fact, the vast amount of sensory inputs I receive on a day to day basis mean my disability effects me differently at different times. Filling out this form for example can cause vast amounts of anxiety, and will likely affect me for the next few days, with the concern about the effect my answers will have. I find being asked for a nuanced view of my autism, which focuses solely on the negatives, quite reductionist. In order to deal with those emotions I will likely set a routine for myself and listen to music, which will allow me to comprehend how I’m feeling without having to understand all the ways autism has affected me…I hope that answers your question”

Okay…that’s the answer I dream of giving

This is how my mind genuinely jumps to answering questions like this: Why shouldn’t it? – a complicated answer for a non-specific question. After all, autism determines how I perceive absolutely everything and I’d personally argue that ‘absolutely everything’ is quite a wide spectrum to draw on when composing an opinion.

By answering questions in this way, I’d be using a form of ‘malicious compliance‘, whereby my analytical (and tongue in cheek) answer satarises the entire process, whilst actually demonstrating the way I see the world.

Bottom-Up Thinking

Most people, if they are asked to describe what thier day to day experiences look like will draw on memory and what they know about the world to sort all thier experiences into a few set categories, which they would then give a general overview of. Fair enough!

In this scenario they’re using, top down thinking i.e mental shortcuts to filter information, selecting what they feel is useful and confirming what they already assume. In a fast moving medical environment, a doctor will have little time to contemplate the complexities of who requires medical attention, and will base thier decisions on a range of ‘heuristic’ factors which allow them to make rapid decisions. On a less positive note, other aspects of top down thinking are ideology, law and order, the rules – those are not bad things in and of themselves, but can be ways for people to bypass the subtleties of problems and make biased assumptions based on how they already perceive the world.

By contrast Bottom-Up thinking is a details and analysis first way of thought. I’ve written before about ‘information overload’ and how I can become overwhelmed, yet also thrive off of sensory stimulants.

“Based on this comparison, it is logical to conclude, this act of processing multiple sensory data for an autistic person, becomes frontrunner to the act of logically formulating a memory-driven hypothesis. Wherein the typical-minded person is taking in the concept before the details, based on collective memories, the autistic mind, due to a bombardment of sensory cues, is taking in the details before the concept. This idea is a definer of the bottom-up process approach to thinking. An approach that is indispensable to innovative thinking

Samantha Craft, The innovative thinking style of the Aspergers mind

When I’m writing an opinion piece on how I see the world as an autistic person; I trawl through multiple sources and articles, soaking in the detail, looking for connections and using them to build up a distinct picture of the issue in my head. Data analysis is another issue where that in-depth details-first analysis is needed. A person writing a song or a book may have some preconcieved concepts or influences, but they will be multifarious and the final product will still be a new invention created from disparate elements and reflecting the persona of the writer.

Tradition and ‘Standard Practice’

So, while the answers that I have fantasied given on “proving your disability” forms, are malicious compliance, they’re also a demonstration of how I see the world at large…

One of the key experiences autistic people have to go through is proving thier disability. This includes through needs assessment, but also in day to day life where it can be difficult for others to understand how your needs are different from theirs – ‘you don’t look autistic’

“Since the original definition of ASDs, those on the spectrum and their families have been have been challenged by stereotypes. The numerous reasons for this associated stigma include the individualized nature of the syndrome, the associated different speech and actions, and the lack of understanding in its physical basis”

Danielle N. Martin, East Carolina University

Needs assessments are a tick-box excersise where the individual must fullfill a set of criteria that has been pre-determined. The logic behind them is a very much a top down form of thinking, based off of what has already been assumed about the way autistic individuals think and act. An individuals experience or neuro-diversity is considered less important.

This mindset spans institutions. Any organisation that wishes to produce creative content will likely come up against a range of questions about the effect said content could have, usually to preserve an image of some sort. There’s nothing necessarily wrong with that, and it is standard editorial practice.

Its also worth pointing out that obsession with preconcieved ideas and biases often manifests in more sinister ways, such as cases where organisations turn down application forms of disabled applicants, based on preconceptions about thier ability.

I’m not advocating that you all fill out your PIP forms with essays on the state of how disabled people are treated, or that you use your next employee feedback forms to advocate for an overhaul of the existing economic order. There are always channels through which you can express yourselves creatively. Still, its important to realise that bottom-up thinking is a cornerstone of creativity, and besides – its always fun to think about malicious compliance.

An Atypical Perspective

Listen to those with something to say: Bottom-up is also a method of organising. Staying on autism, its important to listen to what autistic people say about thier experiences, and give them the opportunity to express themselves, without fear of economic reprisals. This will allow us to move away from ‘one size fits all’ solutions and assumptions about what autistic people need and towards one which creates disability-friendly systems. The same applies to questions of discrimination in race, sexuality, identity etc.

Ask ‘what can be achieved?’ more: This applies at an individual and orginisational level. Anyone or any institution looking to reach into areas such as data and new media may be held back by traditionalism or ‘standard practice’. A public service that aims to help those in need may benefit from technology to understand its impact. For instance, research bodies in the science or innovation sectors could benefit from podcasts and videos telling its story’s – developing these requires people to look beyond notions of how things have been done in the past, asking ‘what can be achieved?’

Brainstorming and networking: ‘Brainstorming’ is one of the most common examples of Bottom-Up thinking – forcing people to look at the bigger picture. If you’re trying to take a holistic view on a problem like homelessness, start with basic causes and branch out from there. Same applies to networking – an example of a scheme which started small and is now becoming widespread is ‘disability confident’. Its not perfect for different reasons – but its a step towards creating societies which accept disabled people, moving away from the strict individualism of ‘here are our disability guidelines’. These are effective ways of taking a well rounded view of complex problems.

I’m Autistic…here’s how I’m dealing with Lockdown

‘I bet self isolation comes naturally to you doesn’t it?’

‘No one needs to tell you to socially distance, am I right?’

‘The benefit people like you have during this time is you’re always very happy with your own company’

These are three of the statements I’ve heard from various people during lockdown. They’re (usually) intended in good faith, yet come across patronizing

The truth is that a lot of autistic people are struggling just as much with everyone else. While I do enjoy my own company and often become overwhelmed, that does not mean I don’t look forward to regaining the freedom I had in the pre-coronavirus world.

While in pre-lockdown life there were lots of sensory simulators -the train journey, the buzz of city life, live music – my heightened perception means they can motivate or enthuse, just as they can scare or overwhelm.

And all that is going to come back. I’ve said before that I’ve learned not to take anything for granted, and those emotional or sensory stimulants, and the routine that comes with them, may present themselves as yet more stimulating.

In the meantime, here are some of the ways I am learning to deal with lockdown, day by day.

Routine

Understandably routine often gets confused with repetition -and that’s certainly part of the idea, though it need not be a laborious process.

In lockdown, days have tendency to blur into one – the stagnant feeling that life is not going forward or backward can lead to a lack of motivation. Indeed, the idea of routine grants me and some autistic individuals a great amount of comfort – it helps to create a sense of sureness in our actions, and our thoughts (The amount of times I’ve been doing research and my minds decided to focus on a complete unrelated matter!) – Its easier to feel productive if you have set aims and goals to work towards vs. being in the weird in between space, when you are unsure as to how to fill your time.

Lockdown has taken away that environment, very much by making my home and work life inseparable. I do not live on my own, and more than once I’ve found myself awkwardly having to tie the loose ends of my day together, reconciling a particularly noisy day at home with an important meeting. Having a routine allows me to mentally separate the two mindsets.

‘Stimming’ and stimulation

Shorthand for self stimulatory behaviour, you may have witnessed stimming through autistic people rocking back and forth, flapping their hands, repeating words or phrases. It appears odd, but like routine it is an important form of self regulation – as the AsIAm blog explains

An autistic person is able to self-regulate through stimming and navigate their sensory environment. This helps them cope with challenges in their sensory processing in their day-to-day lives. It is a means of easing physical pain and internal anxiety as well as expressing one’s emotions, from frustration to joy.

AsIAm blog (2018)

Often not allowing an autistic person to express this is harmful as it can generally trigger information overload or ‘meltdown’. With respect to lockdown, we have less of a sensory environment surrounding us, yet its one of the most emotional times many of us have ever experienced. If I read a news article that triggers an emotional response, I’ll often pace around my room to keep my feelings in check.

That’s not to say that ‘stimming’ is bad – Indeed, as mentioned at the beginning of the article, I miss the rush of sensations that greet me on a day to day basis, which allow me to make sense of the world.

I’m still going for walks, making sure to cook myself a variety of foods, listening to a range of different music, I could go on. These elements alter my mood massively – a nice walk through the local wood, one of my favourite foods or an album I get an emotional response to can cheer me up, just as a mean word from someone can mess me up massively – its always been that way.

Music and Writing

“Some mornings I pray for evening, for the day to be done and some summer days I hide away and wait for rain to come ’cause it turns out hell will not be found within the fires below, yet in making do and muddling through when you’ve nowhere else to go.

So then I remember you, and the way you shine like truth in all you do and if you remembered me you could save me from the way I tend to be, the way I tend to be”

Frank Turner

Another element of autism is obsession. Actually, scratch that – obsession is a nasty word. One element of autism is having a passion for a range of particular subjects. I have a few of these; I have touched on my love of journalism and getting to the depths of a mystery or investigation (an interest which leads me down some very weird research rabbit holes). I’ve chosen to focus on music here, cause this is a blog post about coping and occasionally feels like the one element keeping me sane.

Music is not so much a means of escape. Rather, listening and putting my thoughts on music to paper provides the means to articulate my emotional up’s and downs in a way that I may not be able to express otherwise. If I’m feeling depressed I’ll quite often listen to a song that expresses those feelings. Simultaneously, if I’m having an up day, I will listen to positive music. Through that I’m able to experience a form of emotional management which allows for a form of catharsis while simultaneously calming me down.

So you see through this ‘obsession’ I can exercise a form of emotional and self regulation that allows me to cope during lockdown.

An Atypical Perspective…

Routines are valuable: planning weeks into advance reminds me that this is temporary. Very much like ticking off tasks each week, across a long plan, while working towards the eventual lifting of restrictions. Its like having a sense of power, almost, to say ‘right’ I’ve got through everything I needed to do in that month, and I’ve got a plan for the next.

Having sensory input is important: And indeed, dealing with that can be an essential learning process. Surviving this in a healthy way will require regulating my emotions in a way which provides seeing sensory input as positive, and reacting to that in a way which helps me make sense of those emotions.

Having a passion is vital: Using music as a form of self-regulation and putting those emotions to paper has been very useful – as someone who runs a separate blog on the subject, and writes for various publications, the activity not only allows me to set targets for myself in a time when it can be easy to question the meaning in our lives, but preoccupies my admittedly busy mind on an analytical and skillful task.

I hope these tips can help whether you are autistic or neurotypical…

What are you Passionate About? Making Comparisons in a Complex World

“Name something that you’re passionate about”

I froze. I was sat opposite an interviewer at an assessment centre for Change 100 – a charity scheme that helps disabled graduates into work. “there’s lots I’m passionate about” I jokingly remarked, taking a few seconds to calm the whirlwind that had just ensued in my mind.

“I’m passionate about honesty in journalism. I did my dissertation on ‘fake news’…and I became interested in trying to discover the truth. That’s what I’d like anything I do to be focused on, whether media or research. I think that relates to my strengths…I try and be honest with people, about my abilities. What I can do and can’t do. I’m always trying to learn”

*Internal screaming* what on earth was that? I’d just given them a long answer on honesty in journalism, that tried to connect ‘fake news’ with being honest about your abilities! That couldn’t be called straightforward.

Skip ahead. It was the Thursday before Easter 2019, I was stood on a train platform in Oxenholme for a camping trip when I received a phone call: I’d been successful and secured a placement in communications!

Like a spider slinging a web, I began to make connections. Honesty led into seeking truth, leading into Communications: Gotcha! Later I was invited to be an assessor at a Change 100 assessment centre. I heard answers on everything from animal habitats, to the similarities between washing machine and career cycles.

Hearing different explanations of subjects which are seemingly related is fascinating. I’m not patting myself on the back here. Sometimes not being able to think simply is a pain. That’s why people use mental shortcuts.

Mood’s are one example. If we’re ‘happy’ that’s probably due to a range of factors causing chemicals to be released in our brain, and calculating a series of memories to find the right emotion. One description doesn’t cut the mustard. (This is why I don’t get invited to family barbecues)

However, little did I realise, that skill would come in handy.

Connections and Coronavirus…..

Coronavirus is incredibly significant and complicated, so we find ways of simplifying the problem.

Example: Flatten the Curve – Basic idea: there is a line which represents NHS capacity, we need to keep the curve i.e number of infections below that line, to stop our hospitals becoming overwhelmed. Simple enough.

Clearly, hospital capacity is a complex problem. However, here’s a simple way of distilling the issue, and getting everyone to stay at home, practice social distancing, and wash their hands to the opening bars of ‘Welcome to the Black Parade’ by My Chemical Romance (That was the song right?)

However that doesn’t mean we should always opt for simple explanations. Here are some case ready examples of where drawing comparisons proves useful.

  • Historical parallels: During the Ebola epidemic, misinformation became a problem in the DRC. Media platforms, such as Facebook and WhatsApp, have been used to promote conspiracies since they entered popular culture. Perhaps that raises questions about being wary of misinformation now?

  • Personal Parallels: Different people deal with lockdown in different ways: some by emphasising healthy routines such as excersise and hobbies, others by making lists of everything they are going to do post lockdown. I’ve learned not to take anything for granted. What tactics can apply to yourself and what can you learn from them?

  • Organisational Parallels: There are widespread changes to society happening from regional governments opening up their archives, to police using new technology to communicate with the public, to the entertainment industry looking for new ways to raise funds. What can organisations responding to the Coronavirus learn from each other?

As shown, we’re constantly making links between different events or elements often without realising that’s what we’re doing – some doing this more than others. Drawing those similarities can pose some important lessons about how we organise our societies, our personal lives, and our institutions. Elements like watercolours: working in tandem with one another to create an expansive if perplexing picture.

I argue, we should not be dismissing these connections as insignificant, yet instead taking more time to analyse them and see what we can learn.

An Atypical Perspective…

  • What are you passionate about?: This is a great place to start making sense of the world. If you’re interested in ancient history, there might be societal lessons you can apply from the past. If you’re into music, that might be a cornerstone in your emotional development, as you sympathise and relate to the feelings on display.

  • Look further than shortcuts: Mental shortcuts like ‘this worked last time’, can be incredibly useful for finding ways of thinking about a problem. However, they can also provide oversimplified answers. If there’s a complex or difficult problem like poverty, or mental health, its always worth taking a detailed look at the causes, if only to give yourself a well rounded view.

  • The most insignificant of links can be valuable: Don’t dismiss connections because they seem flimsy. There’s no absolute connection between journalism and self-assessment. However, that view gives me a way of looking at things that allows me to hold myself and my work to a standard, and apply analysis, investigation and precision to different elements in life.

On that note, I will leave you with a reminder to stay inside, wash your hands…and thanks to the song lyric initiative, I’ve got just the tune!