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’
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….
“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.