Systemic Neglect: On the devaluing of disability during the pandemic

Its rare that I address social issues head on in this blog and I will be doing more than just bringing the news up but I hope you understand that I’ve always tried to emphasize that the lives of autistic or ‘disabled’ individuals is no less important than that of anyone else, no matter how much they are maligned or even discriminated against. I couldn’t stay silent on this…

In the UK, people with learning difficulties have been given do not resuscitate orders during the pandemic. This has continued despite The Care quality Commission warning in December that these notices caused avoidable deaths in people with learning difficulties last year. To clarify, these notices are intended and should only be used on people who are too frail to benefit from CPR, or absolutely cannot be resuscitated. This does not include anyone and everyone with a disability. The charity Mencap even say that they have received correspondence from people with learning difficulties who have been told that they would not be resuscitated if taken ill with Covid-19! Worst of all, the same organization say that these seem to have been issued for some, simply because they have a learning disability.

This underlines the way we see learning difficulties in this country. We see them in terms of ‘frailty’. We think because someone struggles to interact properly, they must therefore struggle with everything. How terrified and angry would you feel if in the middle of a global pandemic you were told that if you succumb to life threatening levels of illness, you will not be revived? Now put yourself in the shoes as someone with a learning difficulty. Even I as an autistic person feel less safe and cared for by my own government, as a result of this news. This news shows criminal failure to look at the nuances – ‘if you’re disabled, that means your too weak to deserve treatment that could save your life’. No questions asked. I wish I could say this was a few bad cases but sadly this has occurred against a background of fatal discriminations against people with learning difficulties throughout the pandemic…

A culture of systemic neglect…

To illuminate the scale of this problem, we just need to look at the statistics. NHS numbers released last week show that since the third lockdown started, the coronavirus accounted for 65% of deaths of people with learning difficulties. Whatsmore, your more likely to die from the disease at a young age if you have a learning disability, with those aged 18 to 34, 30 times more likely to die than others the same age. Looking at disability more broadly, an analysis by the Office for National Statistics estimated that six in ten Covid deaths were of disabled people.

These statistics are of course disgusting, but the causes are all too apparent. First, the way the vaccine has been rolled out. In my end of year review for 2020 I praised the news of the vaccine as ‘amazing’ which of course it still is but I’m slow to praise the rollout as a unique national effort of complete brilliance. Much has been asked in particular about why people with learning disabilities are not on the priority list for the vaccine, when the figures are so staggering. Although some people, such as those with downs syndrome are in the top four groups to receive the vaccine, many are still waiting. This is in spite of the fact that research from the University of Bristol conducted before Covid found that on average, people with learning difficulties were dying 16 years earlier than people in the general population. This gap in the vaccine rollout to me speaks to two elements: a lack of knowledge about learning disability issues – we’ll get to that, and the fact that in focusing solely on the factors of age and severity, other factors like the environments people live in, were presumably not considered. I’m not saying that we shouldn’t have focused on younger people with learning difficulties – however, through simplistic, non complex ideas of how to roll out the vaccine, a vulnerable group of people faded into the background.

‘People with a learning disability have long been forgotten and discriminated against, and never more so than in this crisis…Ultimately the medical approach to the priority list is flawed and fails to consider a host of social, economic and health inequalities.’

Dan Scorcer, Head of Policy at Mencap

One of the inequalities that Scorcer is describing here is how hard it can be to communicate across quite rigid ways of thinking about who deserves the vaccine. This can be something as simple as being high priority from a purely technical point of view, but your GP not having precise details of your condition on record. This is something most disabled people have experienced in some form. There comes a point when your requesting support or benefits when you’ll likely need to phone your doctor and ask for confirmation on exact details on how your condition effects you, only to find that those records have been lost or don’t exist. Imagine that level of bureaucracy applied to a life or death scenario. Equally, if you catch Covid and struggle to communicate your symptoms without the help of a support worker, that might be just as threatening.

On top of that, many individuals with learning difficulties, whether told to isolate or not, have been completely cut off from society since March. Understandably, this has greatly affected thier mental health. I know as someone who is autistic that I rely greatly on my support networks and friends. This isolation mixed with the danger posed to people with learning difficulties by the pandemic, is a particularly toxic combination.

One of the biggest factors causing the higher death rate among people with learning difficulties is the care homes and often very small and crowded facilities disabled people are forced into living in. Psychiatrists like Dr Keri-Michèle Lodge point to the discrepancy in the fact that older people living in care homes were prioritized for vaccination, while people living in a similar settings were ignored. This is a core example of what I mean when I describe systemic neglect; these facilities often act as ‘storage functions’ for individuals who are deemed unable to be part of thier communities, often as a result of resource and support based neglect at a government level. During a pandemic, the level of support available to people living in those settings is cut, isolating and alienating them; Being crowded and small, Covid-19 spreads easily within these settings, creating a crisis that the individuals living within are even denied the vaccine for. If they end up contracting Covid, some of them risk being given do not resuscitate notices, devaluing their life even further.

Where this comes from…

We can’t view any of these problems in isolation. While the figures I’ve mentioned here are deeply unpleasant truths, from my perspective I can’t say that I’m all that surprised. When people talk about ‘Covid recovery’ they tend to think of it purely in terms of ending the pandemic when in meaningful terms it should include solving the issues that have been exacerbated by the current crises. The assertion that you saw in some memes and by some commentators, especially at the start of the pandemic, that only certain ‘vulnerable’ sections of society are affected seriously by the virus, works in practice as a call to “get back to normal” without solving the issues which increased the suffering of these communities.

One of these issues has to be the gap in social care. The vaccine prioritization question has highlighted how disabled people are very much left out of conversations around this issue. To illustrate this, consider the fact that the National Institute for Health and Care Excellence issued a clarification about people with a learning disability only after publishing guidance on using who may is appropriate for critical care. That was a huge mistake. In 2018 to 2019, 293,000 people aged 18-64 received council-funded social care in England, mostly at home, with 70% of them needing it because of learning difficulties. Currently, these younger adults account for around a third of all those receiving social care, and around half of all local authority social care spending. Considering this, its absolutely bizarre that disabled people have become something of an afterthought!

On top of that, we must improve standards of care and make it easier for autistic and disabled people to become part of thier communities. Last year, the CQC pointed to poor standards of care as a problem which exists in some hospitals. This can span from some staff not knowing how to speak to patients to issues stemming from under-resourcing. The shortage of specialist nurses is among the serious gaps in the NHS workforce. In a wider sense, benefits freezes and cuts to local services such as libraries have made it harder for people with additional needs to participate in social life.  In 2020, a review of 50 people with a learning disability whose death had been attributed to covid-19 highlighted how many of them had mobility impairments, and/or mental health needs. The author suggested that these factors may lead to an increased risk of covid-19—because of these people’s need for regular and sustained contact for support. The author of this study noted that: “these characteristics underpin prejudicial attitudes towards care, treatment and judgements about ceilings of care”.

The struggles around mental health and grief may be particularly prominent for people with a learning disabilities who now having the little autonomy some of them already have removed. Loss of contact with the outside world, an end to outreach work, struggles with employment. All of these are problems which existed before the pandemic. To neurodiversity activists the message is simple – if its a problem now, it will still be a problem after the virus is gone! On the issue of mental health, rather than trying to set up systems of care and support, individuals with learning disabilities are often inappropriately prescribed medication to control so called “challenging behaviour.” Similarly, people in ‘formal’ inpatient mental health settings are at risk of other restrictive practices, like physical restraint. Still, the pandemic has led to limits on visits by family and friends, heightening risk of abusive environments being created.

It can be said that the isolation and mental challenges that come with Covid are what many people with learning disabilities experience every day. What does getting back to normal mean, for instance, for someone living in an institutionalized environment? In my view, part of the response to the pandemic has to be not only lifting those who are disproportionately affected out of thier situation, but lifting up those who were left out of society to begin with.

An Atypical Perspective…

All of the elements I’ve pointed to across this blog post relate to how we value the lives of people with learning disabilities. In telling them that they won’t be resuscitated, in not prioritizing them for vaccines in spite of the evidence, in cramming them into isolating social care sessions, we are sending out a very clear message: you don’t belong. In that sense, part of all of this has to include combating narratives about who gets to be a member of society. We assume disabled people can’t be part of thier communities or are to frail to receive life saving treatment. With these ignorance’s existing in multiple areas of life, and at multiple layers of governance, we ‘disable’ people, cutting out thier means of support and creating a self-fulfilling image of these individuals: unsociable, constrained, withdrawn. That’s what’s meant by systemic neglect. Covid-19 has highlighted these issues starkly and frighteningly. Now we must respond by breaking the ableist cycle, and doing away with the stigma.

Redefining Success: A neurodivergent understanding of ‘work’

Being autistic you experience the right to work – or even not to work – in different ways. The first is through the application process and the decision whether or not to disclose your autism to your employer. On the one hand, being autistic colours our experiences of everything around us so how we answer questions like ‘How do you perform in social situations?’ might be different from that of neurotypicals.

Disclosing at an interview or on application forms can have pitfalls and can shape the employers perception of you. If you are to disclose, how do you do that? ‘Well, I cope well in some social situations but in others I might need to stand in the corner on my own. By the way I’m autistic’. I know one person who used to work in an independent café and tried to disclose their ASD to their manager, to be met with the response ‘It’s not really bad, right?’. This attitude was reflected on one particularly busy day when they tried to ask for five minutes on their own, only to be told that that any quiet time would be deducted from their lunch break. After asking for ‘reasonable adjustments’ on multiple occasions, they were fired and underpaid.

In preferable, albeit deeply flawed scenarios, scholars and even some autistic charities, preach the virtues of neurodiversity as being good for business. ‘Neurodiversity is a competitive advantage’ proclaim Harvard. These are well intentioned yet stand by the market logic that autistic people ought to be defined in terms of their profit-making abilities. There’s a famous article by Simon Baron Cohen, where – to his credit – he says that the neurodiversity movement “recognizes that genetic or other kinds of biological variation are intrinsic to people’s identity” but argues that the movement ignores the more ‘disabling aspects of autism’. This is a common misunderstanding, so let me clarify:  we know that as autistic people we struggle with certain things, but we are not flawed. People with neurological differences are not broken copies of normal people, any more than we are mathematical machines. Often, being disabled is defined more by the conditions which society puts in place which force us to struggle, than by individual weaknesses.

To me, the crucial aspect missing from Cohen’s analysis is autonomy. If you’re an autistic person who instead of working, spends your days going to fitness socials, or volunteering or even just engaging in a hobby, your considered an unproductive member of the community. If you are in a job which you struggle with, well, looks like you chose the wrong career path…better luck next time, kid! All the while data scientists and engineers are touted as the autistic ideal, while Tesla and Google get to tell everyone about their oh so accomplished neurodivergent employees. I argue that we ought to be dismantling the barriers which prevent autistic people from finding meaningful work, while granting them the autonomy to decide how and if they want to be part of the economy.

There is a difference between impairment and disability…

“With impairment comes personal challenges… disability, in contrast, is the political and social repression of impaired people. This is accomplished by making them economically and socially isolated…The disabled community argues that these disadvantages are thus not due to impairment by its nature, but due to a cultural aversion to impairment, a lack of productive opportunity in the current economy for disabled people. Disablement is a political state and not a personal one”

Sunny Taylor, The Right Not to Work: Power and Disability

Taylor goes on to argue for her right not to work. She’s a painter, who due to her disability paints by holding the paintbrush in her mouth. She does sell her paintings but doesn’t support herself with that money. She feels questions about that are a test to see if what she spends her time doing is a ‘legitimate’ hobby or not. She’s not denying her impairments. No neurodiverse or physically disabled people deny that they have tasks which they struggle with. Autism, for example, can come with certain allergies, or sensitivity problems. When we talk about not wanting to pathologize people, we don’t mean denying that autistic people struggle in social situations. However, not wanting to be around others is different from finding socialising difficult. These are both options which autistic people should be allowed to freely choose. Sadly, much of the business world and the psychiatric world treat these as indistinguishable from each other, and in need of remedying.

 In his article Baron Cohen cites some autistic peoples struggles to communicate as a problem that the neurodiversity movement are failing to address, but this is nonsense. As stated, autistic people can struggle to communicate. Additionally, many of us prefer to listen than to speak, or only interact with people we feel comfortable around. I still struggle with corporate language and when harshly spoken to; I struggle to focus on the content of the speech. I often need to ask people to repeat things several times occasionally, and you know what? I’m surprised more people don’t! That’s not meant to be accusatory, but to highlight how one of the biggest challenges faced by autistic people is neurotypicals reluctance to interact with those they perceive as ‘different’.

All these are barriers to autistic people finding and enjoying work. Even if you don’t work, the type of language and modes of communication you might face when going to a bank or a job centre, may not be accommodating if you struggle with social anxiety. There’s an idea called the ‘double-empathy problem’ which states that because neurotypical onlookers view autism in terms of how it looks, and not in terms of how people experience their autism, empathy between autistics and non-autistics can break down, especially in tense scenarios. The way people who know I’m autistic behave to me often ranges from oversensitive – ‘let me explain every word I say to you’ – to ignorant – ‘well you should have been listening if you didn’t understand’.

One example that always gets given is pretend play. Thinking in terms of neurodiversity, a child may prefer to observe other kids playing without necessarily joining in themselves. I have always been and continue to be an observant learner. The problem is we track progress on neurotypical developmental timelines and act like its strange when autistic people divert from that. For all the options Covid takes away, I think the new world presents an opportunity to give people -autistic or non-autistic – more choices about how and where they work, as well as giving us a chance as a society to reshape how we interact with people under stress, and how we decide what work is meaningful or not meaningful. This leads me to discuss the issue of independence…

Independence is a flawed measurement of success…

Continuing this idea of how we measure development, I would like to specify that I consider myself relatively privileged. I enjoy my job and feel supported there. This is by no means the case for everyone. In Wales where I’m from, the TUC believe that many autistic workers face “daily discrimination”, saying that their research shows that many employers are unwilling even to make even the smallest of adjustments to their workplaces. They go on to say that fewer than 100 companies have signed up to the positive about working with autism charter.  However, while I have a large degree of independence and intend to get more, there are other traditional measurements that I’m quite a while from achieving. Sunny Taylor adds, “Independence is perhaps prized beyond all else in this country, and for disabled people this means that our lives are automatically seen as tragically dependent.”. In my case, while I’m able to go practically anywhere by public transport, I still don’t know if I will ever be able to drive, which many regard as a cornerstone in being ‘independent’.

When I did outreach work for autistic adults I met some people, who were better with directions and talking to people than I am but needed some assistance in cooking their own food. The point of the neurodiversity movement is to question whether being ‘independent’ means being able to perform household chores without assistance or being able to choose your friends. Considering this throws the employment question into a different light. An autistic employee might need help getting around but be great at their work. In so many cases though there’s a bar to entry for valuable professions where traditional measures of independence are used as a judgement on how the individual will perform in the workplace. If you manage to overcome those hurdles, you risk being talked down to by people who treat your perceived lack of ‘mobility’ as an excuse to speak to you in an infantilizing or patronizing way. 

As noted, I’ve only seen scratches of this in my current role, and much as intention doesn’t mitigate the problem, it’s nearly always been a case of easily corrected bias rather than anything malicious. On the contrary, overt bias is something which particularly exists in certain media circles. Its an industry more obsessed with mitigating the risk of anything going wrong, than you would expect. Being an autistic person in a newsroom or at certain PR companies very much consisted of being ignored and being given begrudging excuses of how putting me on a story or letting me tail a journalist would be ‘too complicated’. What right then do armchair commentators and media pundits like Toby Young have to label autistic people unproductive members of society if they don’t perform as ‘efficiently’ as some of their neurotypical counterparts, or don’t ‘work’ in the traditional sense?

I bet some of you are thinking ‘Well, I had to make adjustments to get to where I am. You can’t expect everyone to roll over for your personal needs’, but this ignores the fact that as well as there being neurotypical-centred expectations of independence, there are also neurotypical centred timeframes for when these milestones should be reached. Autistic people, like everyone, do try and learn new skills to better themselves. However, while a lot of neurotypicals might learn to drive at 18, some autistic people might not get their license until their late 20s, especially by the time they’ve built up the confidence and passed. I didn’t have any long-term work until the age of 24, and when I was much younger I took a long time to adjust to the sensory environments that encircled me during primary school. There’s a really interesting discussion to be had another time about neurotypical vs. neurodivergent time, yet the timescale on which you progress through stages in your life can effect everything from relationships to career prospects to education. What you can and can’t do at a certain stage in life can have profound impact on what opportunities you are offered and how you are treated.

An Atypical Perspective…

Ultimately, although the theming of this blog has been work and employment its messages apply on a grander scale.

The first thing we need to do is respect the choices of autistic people even when those choices seem inconvenient or not age appropriate. Workplaces in particular can make themselves more receptive to these choices by providing different working options, allowing people to choose their hours, or even democratizing their processes so autistic people don’t feel pressured. Reconciling how autistic people experience the world with the demands of ‘standard development’ means listening to them about what they can and can’t do and providing meaningful alternatives when an autistic person can’t handle certain circumstances or situations. It’s never letting a neurodiverse individual overhear themself described as “hard work” or “far behind,” and remembering that an inability to communicate doesn’t mean inability to understand.

More than that we need to do away with certain ideas of what success is and how to measure it. By certain measurements I’m sure you could consider me a failure. I’m 26 and I don’t drive, I don’t yet live on my own, and I’ve never really been in a proper relationship. And yes, I struggle with those feelings of worthlessness put upon me by a world obsessed with ‘achievement’ but overcome those moments by reminding myself that I’ve got time to achieve all of those and more, if I want to. Often, autistic people have to camouflage in reverse by detailing everything we struggle with and everything we don’t like about ourselves in order to secure access to certain benefits or support opportunities. In other cases, we have to pretend to be as ‘ordinary’ as possible in order for people to respect us as normal. Either we’re not autistic enough, in which case we don’t need support or we’re too autistic, in which case we can’t be respected as adults.  This creates a system where ‘success’ is continuously out of reach.

Ultimately, neurodiversity means just that: diversity. Some autistic people will never take an interest in cars or sports. Some will learn to paint but always struggle to communicate through body language. Some will understand emotion far more easily through the medium of song than through speech. Some will defy concepts of gender and sexuality entirely and identify as non-binary or asexual. There are enough resources in this world to accommodate for all of these, and with the help of autistic people there can be even more. The world requires all kinds of minds!

Social Grief: coping with ‘the end of the world’

Embers fly above a firefighter as he works to control a backfire as the Delta Fire burns in the Shasta-Trinity National Forest, Calif., on Thursday, Sept. 6, 2018. The blaze had tripled in size overnight. (AP Photo/Noah Berger)

“How are you coping with everything”. The question came as a shock to me. Up until March 2020 the new decade felt just like any other, from a selfish, personal perspective at least. And when the news of the pandemic first broke, I was in a state of blissfully optimistic denial. Its not until the first deaths happened and the seriousness of the situation transpired to us all that I felt a sense of very real grief. Specifically, that out of place feeling which lies at the intersection of not knowing how to feel against a background of actual stories of grief that were flooding from the news, and the anticipated grief of everything that would come next. How was I coping with everything? ‘with the end of the world?’ came the darkly humorous response. It wasn’t of course, but entertaining the idea felt like a great coping mechanism. Then another thought occurred to me. What keeps humans from curling up in the face of seemingly insurmountable threats to human life and the world around us?

Despair…

In my last blog post I talked about Greta Thunberg, and how her autism is integral to her activism. In doing my research I was particularly struck by her assertion that “I thought it was very strange that humans who are part of the animal species, could be capable of changing earth’s climate, because if we were and if it were really happening than surely we wouldn’t be talking about anything else”. Indeed, she was one of the people most affected by what can be called climate despair, until she found a voice through her decision to strike. Perhaps that’s one way we deal with seemingly apocalyptic scenarios – the idea or hope that we have control or can do something. I won’t deny the importance of that motivation.

Another explanation is that like grief, the climate or even the pandemic doesn’t appear to have a tangible form. Its influence can be felt in different ways across the course of our lives, but the lack of visual presence makes it easy to ignore, even if we can see effects such as burning forests and crowded hospitals as tangible evidence that these are issues which we ought to be worried about. One classic, if oversimplified, characterisation of autism is that we struggle to see the forests for the trees. We see details before we see categories. This might be why, when thinking about climate change, Greta Thunberg thinks of the ecosystem as a large system of which we are a part, and not something separate from ourselves.

This relates to an issue called the non-identity problem – a classic example comes from the philosopher Gilbert Ryle who tells the story of a man who goes to Oxford and asks to see the University. So, they show him the lecture rooms, the debate hall and even the students walking between classes. At the end of the tour he says, ‘thanks, but where’s the university?’. This is a brilliant example of mistaking a concept for a separate object. Rather than seeing the university as an interaction between objects, people and what they do, the man in the analogy thought of the university as a separate ‘object’. This is why talking about ‘the environment’ or ‘the pandemic’ as things separate from ourselves, is a mistake. Autistic people aren’t the only ones to apply a more integrated look at issues like the environment. Indigenous communities may have grief over loss of the natural world, which is so closely connected to their identity that they rightly see themselves as part of nature. An Innuit elder is famously credited as saying “We are people of the sea ice. And if there’s no more sea ice, how do we be people of the sea ice?”

Denial…

I’m oddly reminded of the music video for the song ‘Just’ by Radiohead, where a man going about his daily routine stops in the middle of the street and lies down. When he’s asked why, he simply replies ‘you don’t want to know’. This process repeats until the man has amassed a pretty decent crowd around him. Eventually they convince him to describe why he is lying there. His lips move without subtitles before eventually cutting to a wide shot of everyone in the street led down, as if stuck by some unbearable truth. Many have debated what the man says at the end of that video but I like to believe that he’s found a way to distil the enormity of the problems we face to a few sentences, in a way which forces everyone into despair…

The type of despair we see represented there could come as a consequence of climate change, or the pandemic. Its part of the reason campaigns like ‘look into his eyes…’ are considered effective: they turn invisible danger into something tangible and real. According to psychology scholar Renee Lertzman, we can see this process happening with the environment.

“It’s a surreal experience because we’re still in the same system, so walking around, people are driving, and everyone’s eating a lot of meat and everyone’s acting like that’s normal. For some people, that feeling is incompatible with carrying on with the business of everyday life”

Renee Lertzman, Environmental Melancholia

However, simply inspiring an emotional reaction in someone, doesn’t mean they will change their behaviour as a result. Climate despair goes beyond worry’s that a warming planet will force us to make difficult decisions. In the case of coronavirus, previous lockdowns and promises of being “out of this by Christmas” have undoubtedly harmed public trust. In a study into climate despair, data visualizations were presented to test subjects who were urged, in fear-based terms, to take action. Mostly, these appeals produced “denial, apathy, avoidance, and negative accusations”. The researchers concluded that “climate change images can evoke powerful feelings of issue salience, but these do not necessarily make participants feel able to do anything about it” In other words, presenting something in starkly negative and fearful terms forces people to retreat. A common reaction to “there is no solution” is “then there is no problem”. It doesn’t matter how many times you shout ‘danger!’ if people don’t feel like their actions have any difference. News briefings on the pandemic take care to emphasise the seriousness of the situation but make a conscious choice to present a positive outlook for the future. Greta Thunberg is always keen to emphasise that something can be done (although, is keen to emphasise ‘system change’). Being presented solely with pessimism gives us a choice between denialism or despair – between being the man lying down or being the people who initially criticise him. Thankfully, that’s not a choice we need to make…

Bargaining…

I’ve talked a lot about the subject of adapting to transitions as an autistic person. Well, as well as being an autistic issue, it’s a distinctly human one. When confronted with a change, we eventually accept the inevitable, before trying to capture the last fragments of normality that we might find for a while. When we knew that lockdowns were coming, many still spent the weeks leading up to them as if they were like any other. You may have heard people downplay the impacts of climate change by focussing on “better weather”. The key component of this reaction is the attempt to feel better, to avoid facing the loss. For autistic people those feelings of dislocation and denial can be especially prevalent.

This might be why commentators like Bryant associate climate grief with privilege. They argue that we can only ‘bargain’ about things like global warming when we have the luxury to avoid its consequences. How someone in Latin America experiences atmospheric warming will be different from how someone living in the UK experiences atmospheric warming, and the emotional response will be different because of that. An autistic or disabled person living in shared accommodation and unable to access the same level of support as they are usually able to, will experience lockdown in a very different way from someone who is able bodied or neurotypical. When we notice ourselves bargaining, it is perhaps worth asking whether we are bargaining for our own peace of mind at the expense of “invisible” groups

Interestingly, early theories of grief do not discuss social grief but say things which can be applied to the environment or the pandemic. William Worden and Thomas Attig argued that one of the key tasks in a grief process is “the adjustment to a new environment” or new way of behaving. They described the whole grief process as “relearning the world”. Something has profoundly changed, something or someone is either lost or in the process of going away, and grief can help to us adjust. When they were writing they used the death of a loved one as an example, but their work is strangely applicable on a larger scale. Both pandemics and climate change require us to change our behaviour and relearn our ways of thinking. I think if this pandemic has changed anything it’s the way people think about the world around them: how we shouldn’t take anything as given, and how we can never put our faith in stability again.

Acceptance…

The original Kubler-Ross model of grief was again based on very personal matters and talked the calm acceptance of the inevitability of death. However, here’s where we’ve got to draw a distinction between despair and grief. The later says that ‘there is nothing we can do anymore. The apocalypse is coming. It’s too late’. The former is far more cathartic. If you want something that will really depress you, just read ‘Deep Adaptation: A Map for Navigating Climate Tragedy’, by Cumbria University professor Jem Bendell. The paper takes as its starting point the assumption that societal collapse is on its way. Its been rightly pilloried for being quite oversimplistic and for the use of hyperbolic assertations like “You will fear being violently killed before starving to death.”. Many also called the paper irresponsible accusing the piece of spreading despair, not grief.

When we lose a loved one its obviously very tragic but there are harmful and healthy ways to deal with that tragedy. Grief over human life is assigned a series of stages but is really considered a legitimate reaction to social issues like climate change or pandemics. Kriss Kevorkian – an expert in bereavement – notes that we lack the language to describe the feelings of loss that come from watching the destruction of species or mass loss of human life. This is called ‘disenfranchised grief’ – i.e feelings that we don’t acknowledge because they don’t fit within our traditional ideas of what those emotions are, or what causes them. A 2012 National Wildlife Federation report on the psychological effects of climate change estimates that 200 million Americans will be exposed to serious psychological distress from climate-related events and incidents. “This anxiety will increase as reports of the gravity of our condition become clearer and starker.”

An Atypical Perspective…

It goes without saying that I suffer from a lot of social grief. I described earlier how, as an autistic person who views myself part of a large ecosystem and a society, seeing that fall apart upsets me, quite a lot. One way I deal with this is maintaining a healthy emotional distance, trying not to look at the news or social media too much. However, as much as that has its positives, its quite limited as a strategy. So, what do I sometimes do in order to process my emotions on the climate or the pandemic? I grieve. I often temporarily allow myself to give into those emotions and acknowledge how fucking bad everything can seem. This isn’t the same as wallowing in despair. It’s a healthy acknowledgment of your emotions. A moment of saying ‘this is how I feel’ so that we may move on and use that acknowledgment to help affect change.

‘I Am Greta’ shows autism as essential to Thunberg’s activism – An Atypical Review

We begin on footage of forests burning, of flooding, of climate refugees in a desperate struggle for safety. Over the carnage we hear recordings of world leaders and political commentators denying the problem – falsely arguing that CO2 being released into the atmosphere makes negligible difference on the climate or how ‘global warming is good, actually’. We then cut to footage of Greta on a small boat sailing across a tumultuous ocean, as she remarks on her life as being like a particularly bad movie. She’s not the one being naïve. Her uniquely autism-inspired message that as part of nature, surely humans should be talking about nothing other than safeguarding the natural world, makes perfect sense when presented in such stark terms.

Contrasted against images of powerful adults underestimating the scale of the problem, or else proposing spurious solutions to do with lightbulbs, her uniquely autistic messages of ‘survival or extinction’ are shown be ‘that simple’. She’s not the one being childish, our leaders are! There are other moments where she is shown to get emotional during speeches. When asked why she reacted in that way afterwards she simply relays the content: entire species disappearing, rainforests being plundered for the natural resources, and a human race whose future remains in the balance – how could anybody not feel like crying when faced with those realties?

One of the starkest moments comes when Greta describes falling into depression at the age of 11, faced with the reality of the climate crisis. Accompanied by her father – who is shown as a constant source of support, but by no means control – she describes how she stopped talking to anyone, stopped eating and lost unhealthy amounts of weight. Soon after, she was diagnosed with Autism, Obsessive Compulsive Disorder and Selective Mutism – a condition by which you only speak in certain circumstances or, vitally, when necessary. Her reaction when she realised that there is a climate crisis speaks to the way autistic people react when confronted with a wicked problem. Many of us can’t passively observe while millions suffer, or ecosystems die. There’s a very real emotional reaction we can have to staring these seemingly insurmountable challenges in the face. They can lead us to become sad, depressed or motivate us to action. This documentary doesn’t present this as anything strange.

 “We aren’t very good at lying, and we usually don’t enjoy participating in this social game that the rest of you seem so fond of. I think in many ways that we autistic are the normal ones, and the rest of the people are pretty strange, especially when it comes to the sustainability crisis, where everyone keeps saying climate change is an existential threat and the most important issue of all, and yet they just carry on like before”

Greta Thunberg, TED Talk

Of course, now at the age of 18, Greta has already achieved something few teenagers ever accomplish – make thousands of grown men unreasonably angry at her. There’s one scene where she’s joyously mocking mean comments. Many of the criticisms levelled at Greta are through an “ableist gaze”. Ideas of her being ‘mentally ill’ are repeated in compilations of all the media pundits who have levelled hate against Thunberg, as is the idea that she ‘can’t understand’ the world. Scarily, these are accusations most autistics have experienced at some point. Others bully her for her tone of voice or her facial expressions – Donald Trump and Jair Bolsonaro among them. The idea here is that a few very rich and powerful individuals have held a grip over natural resources and are now challenged by those who think differently from them, demanding that they stop treating the natural world as a ‘bottomless sweet jar’. Even when speaking at conferences, Greta feels patronised and ignored. Looking at the meagre “solutions” presented in response to her speeches (“We’re making toilet flushes more energy efficient”) its’ hard not to understand her frustration. For those people, liberal or alt-right, Greta has a very simple message which she delivers at the UN summit “Change is coming, whether you want that or not”.

A lot of the film focuses on Greta’s relationship with her dad, who has a large role in helping her with a lot of her activities. Equally though, we see how laughably far from the truth the claims that Thunberg is being put up to her activism by her parents are. ‘When she told me that she planned to skip school and sit outside the Swedish parliament, I said I wouldn’t support her’ says her father at the beginning of the film.  Indeed, thinking about the documentary in terms of character development, his is very interesting in that he begins the film with the same reservations as those who come up to Greta on the street to ask why she is in school, and becomes gradually more sympathetic to the line that asks “why study for our future, if we might not even have one?”. There are moments where he gets overly interventionist as a parent, for example by encouraging Greta to stop using language like “sixth mass extinction”, to which she makes clear the importance and accuracy of those words. There are other moments where he is more sensible such as when he begs Greta to please eat her lunch before going on stage.  As an autistic person watching, I find a great deal of relatability in these scenes. They show us that this is a distinctly human story and reminds us of the personal passions and experiences which compel people to try and change their world.

Part of the reason this film is so effective in its personable and non-aggressive approach is the fly-on-the-wall technique whereby the camera simply follows Greta through her day to day activities, allowing her to narrate. In fact, while many others treat her like a celebrity, she doesn’t treat herself like one. She makes clear on several occasions that the glitz and glamour, the fancy palaces she gets invited to and the wild receptions are all meaningless, unless the problems she’s addressing can be remedied. She has very little to prove beyond her cause, and all the proof needed for that is already there, if people would care to listen.  In one moment, she’s meeting a friend and joking about how she can’t plan anything just in case she’s invited to speak to another conference or protest about a message which should be incredibly obvious by now.

Of course, there are moments where these sentiments are expressed with more anger and frustration. The camera even accompanies her aboard the ship that she and her father used to sail to America to speak to world leaders – she doesn’t want to be someone that says something and does the opposite. In an emotional sequence, we see waves batter the tiny boat as Greta talks about missing her friends, of wanting a normal life, yet not being able to have one as she values the opportunity to make a difference above her wants her needs. This portrays the tiredness, the stress and dislocation that led to that widely shared quote we saw amplified across our screens – ‘you have stolen my childhood. How dare you!’

Think about that last quote. She could have been ‘professional’ and given an eloquent and polite speech. Instead, her autism and ways of thinking about the world compelled her to express herself honestly, and in doing so break the steotypical image of how people on those platforms are supposed to behave. As she said before, she’s not interested in the social games we all seem so fond of. The situation is far too serious for that.   

Its explained very early in the film that as someone on the spectrum, Greta likes a sense of certainty and routine. Climate change provides the human race with neither of those. That’s why whether she wants to hear it or not, Greta is quite brave for defying some of the challenges which can come with autism and placing herself outside of her comfort zone. And no, not everything Thunberg says guarantees to make you comfortable or happy about yourself. That’s why the underlying message of this movie is not simply one of a girl who skipped school to protest or even one of environmentalism. Rather, that in order to make a difference, you sometimes need to step outside of the places and routines you feel most safe in.  Indeed, that’s not just a message we could do with learning with regard to the natural world, but with regard to autism! In one moment, which made me grin from ear to ear, an interview asserts that Thunberg “suffers from autism” as is the agreed upon terminology for much of the media. Proudly and politely, the teenage activist corrects him: “I wouldn’t say I suffer…I am autistic”. Even through all the uncertainty she’s endured, she still sees her autism as her ‘superpower’ because she likely wouldn’t have had the creativity and drive do a lot of her work if she wasn’t ‘atypical’. Perhaps we should all be a little autistic, in that sense!

I Am Greta is currently available to view on BBC iPlayer and Hulu

Quiet Confidence: The positives and negatives of being an ‘ambivert’

I am neither an extrovert nor an introvert. If you asked some of my acquaintances who only vaguely know me they would probably say that I am quite introverted, as I tend to be quite quiet and withdrawn, especially in unfamiliar social situations. Others, who know me more well, would say I am extroverted, as I’m more confident around these people, to an extent where I feel comfortable being quite open and honest. Interestingly, dictionaries have a word for people like me – ambivert. You might have also seen people who are in between the two extremes referred to as ‘omniverts’. Regardless of the terminology, this is someone who displays classic traits of both introverts and extroverts, in specific situations.

From my perspective, being autistic makes me more susceptible to ambiversion. The way my energy and emotional capacity works is I can be extremely sociable and outgoing one moment, while in the next I can be extremely socially conscious, awkward and demanding to be on my own. Similarly, if I’m secluded for too long, I get bored quickly, and agitated with my own company. It’s a mixed blessing as being an ambivert means I can enjoy being both social and alone, but I can never be truly comfortable for longer than the set amount of time which my mind allows me to be content. Its not just social occasions; in work I can be enthusiastic or full of ideas one moment, but after I’ve finished or while I’m on a break, I will be quiet, recuperating using music or a book and – as someone on the spectrum – less responsive to social cues, finding interaction far more difficult.

Some people plot these contrasting states on a continuum with ‘introversion’ and ‘extroversion’ at either end, which is accurate. However, I like to think of my mental states as more of a rechargeable battery. I stop short of saying ‘one which determines the effectiveness of the item its powering’ because that would be taking the metaphor to a ridiculous extent and would appear to imply that I’m at my least effective when I’m having a ‘down’ or introverted moment, when in reality I’m simply being me under different circumstances. Lastly, keep in mind that all these labels are completely arbitrary concepts, and you can never entirely accurately categorise someone as an extrovert or an introvert, as humans don’t fit comfortably into categories.

The definition of ‘Ambivert’ is abstract but useful…

I’m sure you’ve been asked plenty of times whether you’re an introverted or extroverted person. And when you were asked that there’s a significant chance you responded based on your experiences of being around people and how you feel in those situations.  For this reason, the introvert/extrovert dichotomy is something of a misnomer and reflects an outdated view of personality. Bradberry, writing in Forbes defines personality as ‘a stable set of preferences and tendencies through which we approach the world’. For autistic people certain elements of social awkwardness or changeable reactions may effect how people judge us. And, to harp on an oft repeated talking point, what about masking? If you’ve ever been in a social situation where you’ve had to live up to the assumed definition of being extroverted i.e confident and outgoing, even while your anxiety is eating you inside, then you will begin to see the dichotomy as quite limited. Adam Grant set out to study this distinction. He found that two-thirds of people don’t strongly identify as introverts or extroverts. These people are called ambiverts, who have both introverted and extroverted tendencies. The direction ambiverts lean towards varies greatly, depending on the situation.

Some people can confuse some autistic peoples shyness and social anxiety for introversion. Likewise, if an autistic person spends hours talking about their special interest fluently and confidently with people who are in their immediate social circle, they might be perceived as quite extroverted. But these perceptions might not reflect how the person in question see’s themselves. A person who identifies as an introvert might enjoy social interaction in small doses. Similarly, a person who identifies as an extrovert might enjoy being on their own in certain situations, for instance if their upset. This is why I like the term ‘ambivert’ – it gives a sensible third point with which to understand the states of introvert vs. extrovert as more opposite ends of a continuum, rather than a case of ‘your either one or the other’. But…hang on… if most people drift around in the middle of the spectrum drifting from one side to the other depending on circumstances, why do we need definitions? Can’t we just discard the entire concept? Well, we could, but I have been a bit popularist in defining my terms so far. Looking deeper provides a blueprint for how we might usefully understand and apply them…

How you recharge is important…

The idea of introversion and extroversion first came from Swiss psychiatrist Carl G. Jung in the early 1900s. He believed that extroverts were energized by the external wold and that introverts were energized by the internal world. He thought that extroverts direct their energy towards the world around them and gain energy from things like interactions. Introverts, meanwhile, focus their energy inwards, towards more solitary activities. This is still very oversimplified but as explained in the introduction with the battery analogy, I find the idea of ‘social energy’ quite useful. Indeed, in line with my definition for myself as an ambivert, both the internal and external world can build up or sap my energy.

Returning to the battery analogy for a second, I think there is potentially more to it than ‘I need to recharge after doing the same thing for too long’. If my battery is full and firing on all cylinders for too long I can become restless, anxious and often very emotional in a short space of time. If it’s empty for too long I will become distanced from my situation, unable to focus on what people are saying or start staring off into space. I both desperately need other people and desperately need to be alone at different times. Often when I’m at social gatherings, and there’s three or four groups each containing people that I know, I will wander between groups as different forms of communication affect me in different ways. As an autistic ambivert, regulating small elements such as how I communicate and the environment I’m in, is something I need to do as a coping mechanism. Lockdown has left many of us absent of those sorts of choices. I must admit that without tools such as the internet which allows me to watch a concert or talk to friends, I would feel even more isolated and unable to flick between different mental states. I think that while terms like ‘ambivert’ might be reductionist, they are useful tools in understanding how many people – particularly autistic people – interact with the world around them.

 Regulating sensory environments is key to being an ambivert…

Perhaps this should read “regulating sensory environments and internal states of being…”. I mentioned masking earlier in this blog post, and I feel its important to note that someone who appears withdrawn at a social gatherings might have good reason to be that way in the moment. Constantly being ‘on’ and required to live up to some expectation of how you should behave in that situation is not possible for everyone. One article I read doing research for this blog post said that: ‘a self-aware ambivert will lean toward the extroverted side of the scale, even when it has been a long day and he or she has had enough of people’ and while there is a grain of truth in this statement, it immediately follows the sentence up with ‘Mismatching your approach to the situation can be frustrating, ineffective, and demoralizing for ambiverts’ with no acknowledgement of how frustrating camouflaging can be.

This is why a healthy approach to regulating ones environment is needed. Its why I like having the option to be around people or on my own when I’m working. Its why I often block out busy environments by listening to music. Its why when I’ve been on my own all day, I find meeting up with a friend to be incredibly energising. Like I was saying earlier, circumstances are key, and so is having the flexibility to put myself in different environments when I feel the need to. This is quite often difficult and involves lots of planning ahead, so for example if I know I have a busy week ahead of me, I will often need to plan time to wind down the following weekend. Equally, being an ambivert requires learning to say ‘no’ when necessary. Its easy to become swept up in obligations, just as its easy to become caught up in not wanting to do anything in which case you need to tell yourself ‘no’. Its an odd and occasionally uncomfortable process of self-evaluation which can be tiring in itself, yet also liberating and positive.

An Atypical Perspective

I hope through reading this blog post you have come to a greater understanding of why questions around confidence and introversion vs. extroversion matter. The terminology of ‘ambivert’ is a useful if flawed way of understanding how many autistic people interact, and the struggles we go through to maintain a mentally healthy balance of being around people and being on our own. I feel as if there’s a presumption outside of the autistic community that we can’t socially interact and that our erratic behaviours are testament to our inability to communicate and understand people properly. This is disrespectful as many autistic people are tying to do just that – true, we ned to be on our own sometimes and our emotional states can be volatile and changeable. However, it’s not through an inability to enjoy and savour the experiences that we struggle, but through huge efforts to members of society while simultaneously cherishing our individuality as autistics.

Stranger than Fiction: 5 myths about autism (and why they’re dangerous)

Like seemingly every sphere of public life, discussions around the causes and consequences of autism are rife with fiction. It’s a mentality which arises from the “people have had enough of experts” school of thought. Critics of experts believe that should you even appear to deviate from your role as a neutral presenter of facts by stating an opinion, you are no longer an expert or cannot be trusted. This is the argument people like Andrew Wakefield make. Upon having his medical license revoked for saying that vaccines cause autism, he has made documentaries like Vaxxed and appeared on platforms like ‘Infowars’ to argue that the truth is being shrouded by a medical elite.

This of course ignores the fact that experts are human, and that it’s through those differences in view that the best ideas emerge. Scientists have long debated exactly what autism is and how its caused, and it’s still an emerging field of knowledge. In my lifetime, science has gone from believing that autism mainly effects males, to an acknowledgement that there is no gender difference. Does this mean scientists are not to be trusted? Well, while you should not necessarily always take researches at face value, this does not mean you should turn your back on the entire scientific community or reject learning. In this blog post we will be looking at 5 myths about autism, showing why disinformation matters.

Myth #5. ‘Dairy Products cause autism’

First of all, the terminology goes ‘‘is your child autistic?’, but minor grammatical gripes aside, this is an utterly egregious example of distortion based on little to no scientific fact. This is another tactic of linking two things which are unrelated. Peta are here playing off fears of parents planted by years of disinformation campaigns in order to sell veganism or secure donations. 

If you follow the link on the advert, you get taken to a page where they site two scientific papers neither of which support the claim Peta are making. The first was published in 2002 and observed some possible improvement in autism symptoms when children were put on a diet free of proteins found in milk. Everything about the study is incredibly vague, offering the explanation that the change was due to “processes with opioid effect,” and using a sample group of just 20 children. The second study was published in 1995 and found no link between dairy products and autism, with Peta offering as evidence the fact that the study found antibodies to milk proteins in the blood of autistic children, which suggests nothing.

Of course, any person or organisation claiming to know what ‘causes autism’ should be treated with suspicion. We don’t yet know what causes autism. Perhaps the most infamous example of this are the ‘vaccines cause autism’ studies by Andrew Wakefield – the truth is that three of nine children in his 1998 stud did not receive a diagnosis. Only one child clearly had autism. In addition, five children had documented pre-existing developmental concerns. Despite that the study reported that all 12 children were “previously normal.”. These type of misinformation campaigns don’t need to be grounded in truth to be effective. They play to some parents desire to have a sense of control. You can’t control whether your child has autism or not but what can you control? their diet, whether they take vaccines. This might appear one of the least believable on this list, but its one of the most manipulative. 

Myth #4. ‘Autism used to be rare, but now it’s common’

 Tied in with the idea that you can find potential triggers for autism in the world around you is the idea that whereas autism was once rarely seen, its now everywhere. The implication being that people are being over diagnosed, or that some third factor like vaccines is causing more people to become autistic. The most common figure that gets chucked around by groups like Autism Speaks is that the prevalence of autism is now one in 68, whereas in 1970 it was one in 10,000. 

In case the fact of the matter wasn’t obvious already, the increase in diagnoses of autism in recent decades has to do with the fact that a broad range of people are able to get diagnosed. I have written a whole blog post where I document how understanding of autism has progressed from being seen as a childhood condition with an association with schizophrenia to being seen as a common and varied spectrum. Prior to the 1980s there was no “autism spectrum” as a diagnostic category. The work of Leo Kanner, who mistakenly believed that autism was rare and discouraged diagnosis unless children precisely matched the core features he described, was embedded in the medical consensus at the time. This meant that parents through the 1980s often had to bring their child to multiple specialists before finally obtaining an autism diagnosis. Few working-class families, or families of colour received a diagnosis (this is still a problem), and girls were considered incapable of having autism. 

Lorna Wing, among others, helped dispel these notions. Throughout her work spanning from the late 80s to the early 90s, she refined the idea of the ‘autistic continuum’ which posited that autism Is a lifelong condition and that the condition occurs on a spectrum. This model reflected the broad range of their patients. It proved that autism is not, as this misconception suggests, a tragic by-product of how the world has changed, but something to be understood. 

Myth #3. ‘Autism can (and should) be cured’

I’ve talked about the idea before, but it’s worth reiterating that past attempts to cure autism bear no fruit and are a waste of money and time that could be spent providing extra support for autistic people, helping them people into secure employment, or creating resources to help increase understanding. Not only is the idea that you can cure autism not true, but I wouldn’t want it to be true. What we need is autism acceptance. Through their actions, the people applying these “cures” to their children are making a very loud statement, saying that they believe autistic people like myself are broken. Getting rid of autism becomes code for ‘getting rid of autistic people’. Its ableism in its most vile and pronounced. 

Indeed, the world of fake autism cures is a lucrative business. The most recent example of this is Miracle Mineral Solution: a “supplement” being sold online to parents as a ‘cure’. In reality, the product, when used as instructed, generates chlorine dioxide i.e bleach. In 2015 more than 10,000 vials of the substance were seized at a production site in Cambridgeshire, with the product being sold through targeted advertising on social media. Facebook groups with thousands of members promote these miracle cures posting pictures of children with rashes and bleeding and presenting that as a sign that the solution is working!  There are other such treatments including hyperbaric oxygen therapy involving treatment with oxygen in a pressurised chamber, as well as a series of fake vitamins, minerals and diet supplements. I detail these to show how dangerous misinformation about autism can be. Not only do fake facts poison peoples minds and social media feeds, but literally kill and hurt people.

Offensive anti-autism commercial by Autism-Speaks

Myth #2. ‘Autistic people lack emotion’

Media representations of autistic people tend to portray us as cold emotionless beings who are neither aware of our own feelings nor those of others. This is at best inaccurate, and at worst actively harmful towards autistic people. Indeed, one early article on Autism Spectrum Disorder (then Asperger syndrome) described the condition as “a plague of those unable to feel” referring to people on the spectrum as “cruel” and “heartless”. I’m acutely aware that these are the perceptions of autism that I was born into and that others perception of me, as well as my perception of myself, has changed as thinking on autism has progressed. 

The truth is that autistic people are often highly concerned with their own feelings and that of others. I’ve detailed before how I’m quite emotionally sensitive but use ‘camouflaging’ as a way of masking that, because the world around us rarely appreciates outward displays of emotion. Likewise, when I’m around others I am highly concerned with their emotions. I might struggle to fully read signals or modify my behaviour to appear sympathetic, but it’s certainly not true that I’m cold or unfeeling. “neurotypicals” rely on social signals to broadcast their emotional states to one another. Autistic people often prefer to communicate in more overt and obvious ways, not necessarily as a way to make communicating easier but as a way of enabling us to better understand a person’s motives and intentions. The frankly quite hurtful idea that autistic people don’t understand emotion or can’t empathise has been used to perpetrate a number of cruel injustices, including the assertion by media figures like MSNBC’s Joe Scarborough that many mass murderers are on the spectrum. If you assume that autistic people are non-emotional beings you can then treat them as inhuman by performing dangerous pseudoscientific experiments aimed at ‘curing’ them or blaming acts of violence by actual sociopaths on autistic people. This might seem to be one of the most innocuous ideas based on how often its employed, but it’s often the precursor to far more harmful acts of violence against autistic individuals.

Its fair to say that both autistic and neurotypical people struggle to see the world for each other’s point of view, but in order for us to feel empathy with other people we need others to understand and feel empathy for us. 

Myth #1. ‘We should aim to make autistic people normal’

I place this idea at no. 1 as it’s the one underpinning all the other concepts on this list: the idea that autism needs to be got rid of, ‘cured’, or else that autistic people should be made to be the same as everybody else. Of course, if this could be achieved then you would leave the fields of arts and science significantly worse off, as these are dominated by autistic individuals whose skill for detail and, yes, emotion enables them to excel in those fields. The message to autistic people here is clear: ‘you are a burden’.

Perhaps the most overt example of this idea being trialled is in the 1980s. psychologist Ole Ivar Lovaas claimed that his method of “Applied Behavioural Analysis” could be make autistic children “indistinguishable” from their peers by putting them through years of intensive behaviour modification. Lovass did not see autistic people as people “in the psychological sense”. He used this to justify an approach which often involved electric shocks and beating as types of what he called ‘aversives’. The method seeks to put autistic people in environments and situations that they are uncomfortable with. For example, if a child is uncomfortable with certain textures in food, part of the regime might involve force feeding them. For every openly autistic behaviour that is demonstrated, that comes with a ‘aversive’ or punishment. The method is still widely used today. Problem being, beyond the gross idea that you can simply teach someone not to be autistic, Lovaas exaggerated the success of his interventions. His former colleague Christine Lord acknowledged that his claims of prompting recovery “did not reflect what really happened and certainly cannot be used as scientific evidence”.

For an honest account and analysis of ABA and its lifelong effect, I recommend everyone read Julia Bascoms essay “Quiet Hands”. In it, she writes:“When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy”. Of course, elements of autism like stimming are not defects. As documented by numerous autism researchers including Lorna Wing and Barry Prizant, they are adaptive strategies to cope with a world that feels chaotic. The latter sums this up in a quote which I think underpins the point of this entire blog post: “The problem with interventions that focus on attempting to render a child indistinguishable from typical peers, is that they treat the person as a problem to be solved rather than an individual to be understood”.

An Atypical Perspective

I hope you realise that while these ideas and ones like them are gradually beginning to fade from relevance, they are still very dangerous. Although these ideas may on first look seem to possess varying degrees of extremity, in my opinion they come from a similar place in that they stem from different ends of a neuro-medical model of thinking about autism, that says that the wrongly believes that autism is the problem, not the conditions of society which oppress and stifle individuals on the spectrum. The focus here is on treating the condition as a malfunction, rather than making a systemic critique of the issues which ‘disable’ us. Admittedly, society is in a far better place with its attitude towards autism than it was in when I was born, and frankly while one hopes for a degree of longevity in their blog posts, I would like nothing better than for this one to be completely irrelevant one day. I’m a huge proponent of the idea that concepts have consequences, and nothing evidences that better than some of these. Yet positive concepts have results and through ideas like neurodiversity and the idea that autism can be just a difference, rather than a disability, we’ve made leaps and bounds in peoples understanding. If you’ve ever found yourself even mildly convinced by any of these, thank you for reading until the end, and I hope you look at autism differently now.  

Optimism of the Will: A case for pragmatic positivity

I like to think of myself as an optimist. There have certainly been times when I have been too optimistic. When this pandemic first began I had the same idea as many other people had that this would all be over by September, born out of hope that the situation would be short lived and never having encountered any situation of this kind before. For that reason, I’m very conscious of not wanting to talk down to my more pessimistically inclined readers. For instance, I could make the case that in terms of wealth and opportunities the world is a significantly better place now than it was 200 years ago, and while its true that several measurements of quality of life have risen over that period, we should not kid ourselves into believing thats universal. I could make the argument that optimistic people tend to live longer overall, but if your worldview is based on the fact that the future will most likely be worse, your probably not that fussed.

To my mind, optimism made rational dosen’t mean being deluded that everything will magically get better, but seeing the misery and desperation in bad situations as well as the potential and opportunities for things to get better. An example of this might be mutual aid; the setting up of support networks for individuals who are isolated as a result of the pandemic, in order to provide resources or simply serve as a means of combatting loneliness, presents a new way of thinking about those problems in general.

This is an idea popularized by Antonio Gramsci, who had every right to be miserable as he was imprisoned by Mussolini’s fascist regime in 1926 until shortly before his death in 1937. In his prison writings he noted his idea of ‘pessimism of the intellect, optimism of the will’:

“You must realize that I am far from feeling beaten. It seems to me that a man out to be deeply convinced that the source of his own moral force is in himself — his very energy and will, the iron coherence of ends and means — that he never falls into those vulgar, banal moods, pessimism and optimism. My own state of mind synthesizes these two feelings and transcends them: my mind is pessimistic, but my will is optimistic. Whatever the situation, I imagine the worst that could happen in order to summon up all my reserves and will power to overcome every obstacle”

Antonio Gramsci, Prison Notebooks

To put it another way, situations may seem dire and indeed there’s a strong chance that they are dire, but the optimistic side to that is that they can be changed through human willingness to make them better. Look at the field of autism and neurodiversity. In 50 years we’ve gone from blaming autism on ‘refrigerator mothers’, to autistic people being accepted members of society. Although, the term need not be meant in the political sense in which Gramsci intended. The ongoing coronavirus pandemic has focussed closely on the potential of collective action – the acknowledgement that we are living in desperate times, and the idea that we can suppress the virus, through the simple act of not leaving the house. You get the idea. This blog post will use this idea to make the case for a rational optimism, looking at how we can stay positive faced with the challenges of 2021 and beyond.

Uncertainty is a source of optimism and pessimism…

From an autistic perspective, 2020 was a year of unprecedented challenges for everyone, not least the disability community. Mental and physical challenges wrought from the pandemic, have dominated our lives for the past nine months. Looking more narrowly for a second, part of my autism has been having a constant awareness of these societal problems: climate change, racism, political manipulation. While these might be issues everyone worries about they serve as a constant thrum in my mind, and there have been moments when feeling that not everyone is motivated by those issues in the same way I am, has caused me to be pessimistic.

An important factor in all of this is uncertainty. The states of optimism and pessimism are based on contrasting positions about the future. Being an optimist, you have a strong sense of hope but risk disappointment. Being a pessimist, you are riddled with anxiety but may feel elated when the worst is avoided. So which is better? The magical world hypotheses posits that autistic people have impaired predictive ability. We can absorb lots of information but we can’t so instinctually use things like the behaviour of people around us to predict what might happen in the immediate future. This might serve as one source of anxiety, but also as a source of hope for those unencumbered by worries.

You should not ignore positive emotions…

Two economists, David de Meza and Chris Dawson, set out to solve the riddle of state of mind and uncertainty. They examined the responses of 1,601 individuals to two questions that they repeatedly answered every year between 1991 and 2009: “How do you think you will be financially a year from now?”. A year later they would ask them “Would you say that you are better off, worse off or the same financially than you were a year ago?”. They then looked at the well-being of these individuals to determine if the optimists or pessimists were happier or more miserable based on whether or not they achieved their aims.

Some of the conclusions from this study provide a clue as to how we might predict the future and answer questions like how will the pandemic end? There’s an important caveat I have to add to this analysis that your finances are obviously more under your control than a pandemic, but as a hypothetical look at optimism and pessimism, the concept works. First, those who accurately predicted how they would be doing a year later were happiest: okay so that’s a point scored for realism. Most of us aren’t very good at predicting and rely on our natural inclinations. However, the study also found that pessimistic people experienced 38% more distress than people who could predict, while optimists felt 12% percent more distress.  In those terms, those who live in a state of negativity experience over three times more distress—even when they are pleasantly surprised that it’s not as bad as they thought—than those who are optimistic.  Negativity can bread negativity, resulting in situations where pessimistic people can’t see past the worst possible outcome.

Negative experiences are still incredibly important…

None of this is to ignore the importance of negative emotions, as they are important for mental health. I quite often put myself in situations where I allow myself to become sad or adopt a negative frame of mind, in order to regulate myself emotionally. In therapeutic settings, the therapist will quote often encourage an outpouring of emotions, and are often encountered with situations in which the patient feels like they have to apologise for being negative. This applies on an individual and societal level:

“Positive thoughts and emotions can, of course, benefit mental health. Hedonic theories define well-being as the presence of positive emotion, the relative absence of negative emotion and a sense of life satisfaction. Taken to an extreme, however, that definition is not congruent with the messiness of real life. In addition, people’s outlook can become so rosy that they ignore dangers or become complacent”

Can Positive Thinking Be Negative?, by Scott O. Lilienfeld and Hal Arkowit

Unpleasant feelings are just as crucial as positive ones in helping you make sense of life. I know as an autistic person who is very emotionally motivated and experiences thier emotions strongly, that sadness and anxiety have been incredibly useful in helping me understand myself.

Adler Hershfield, a professor of marketing psychology, investigated the link between mixed emotional experience and psychological welfare in a group of people. Before each session, participants completed a questionnaire that assessed their psychological well-being. They also wrote narratives describing their life events, which were coded for emotional content. Alder reported numerous cases of participants feeling happy and dejected at the same time. One participant noted “I feel sad at times because of everything I’ve been through, but I’m also happy and hopeful because I’m working through my issues” . This shows a process where acknowledgement of negative emotions provided a blueprint for working through them. Understanding your sadness or comprehending a negative situation and turning that into an opportunity for change in one’s own life or on a wider scale can be ultimately positive.

An Atypical Perspective

How would we go about squaring this deeply contradictory analysis within an understanding of optimism and pessimism as a whole? The answer has to be that neither pessimism nor optimism provide a clue to happiness or making the world a better place. The first thing to remember is to be honest with ourselves about how the world is and how we feel; suppressing negative emotions is an incredibly detrimental process to ones mental health, as is ignoring the problems of society to society as a whole.

As a solution, I like to employ a pragmatic optimism, that is the crux of pessimism of the intellect, optimism of the will. That things will only get better if we acknowledge the negative, and allow that to propel us into actively changing our world, and that which surrounds us. As Noam Chomsky summarises “Optimism is a strategy for making a better future. Because unless you believe that the future can be better, you are unlikely to step up and take responsibility for making it so”.

As an autisitc person, I’ve had to experience all of these emotions: happiness, uncertainty, sadness, in very pronounced way’s. I label the forward thinking approach I’ve described ‘pragmatic optimism’ as it does involve despair, anxiety and worry. Understandably, many do not want to face up to harsh realties, just as others would prefer to ignore the possibility of change. However, the intentions and opportunities of this way of broaching the divide are ultimately positive.

An Atypical Reflection on 2020

“Everything that we were, everything we based our lives upon, everything that we believed is gone…So, the betrayed ones, like you and me, have to start all over again, from absolute zero, and construct some new version of “life,” one that we can “live with.” No way we can hold onto what we used to believe, and no way we can forget what has actually happened in our lives, and in our worlds. We will never trust life again.”

Neil Peart, 1952-2020

Well….that was a difficult year. Thanks for reading

No, only kidding. As tempting as it would be to just label 2020 the worst year ever and leave my analysis there, that would be taking the joke to an almost destructive extent, blotting out opportunities for learning and doing a disservice to those who need us to learn.

I began this blog as an attempt to document my experiences as an autistic person living through strange and extraordinary times. In my very first blog post I talked about making connections, and seeing the world in terms of its interactions, rather than seeing separate elements, each with an entirely distinct story to tell. In a sense, this year has required us all to think like that. Suddenly our actions became not about us but about what we were doing to combat the spread of something that effected all of us. Staying on that, we soon learned that the emotional anxiety, worry and fear that we were feeling was being felt in some way by everyone else.

Around where I’m from quite a few peoples terrible year started with the flooding. I have a friend who owns a live music venue which was destroyed early in the year, and who couldn’t hold the fundraising events which they had planned. Still, through digital campaigns they’ve made steps towards a reopening in 2021. This was an early indicator of the fact that as humans we don’t exist in a vacuum, but operate in complex spaces where we need each other. My friends music venue was one persons entire livelihood, a few peoples jobs, another persons community resource and a small piece of the local economy…I could go on. My friend was denied an insurance pay out on some spurious notion of what technically counts as flooding. With all the controversies that have emerged about how you support people in desperate situations this year, the floods just felt indicative of everything that would come next.

I don’t fully remember exactly how I felt as the pandemic started. I did go through the process of downplaying COVID-19, becoming scared and then finally coming round to comprehend the gravity of the situation. One nerdy joke that I made at the start of the year was “of all the things I was expecting to happen in my life, global pandemic was not top of the list”. And thats true, this whole situation feels so alien to so many people. Put yourself though, in the mind of a journalist taking an observing view to the whole experience. On a global scale this year has involved a pandemic, economic collapse, and a social justice movement, not to mention the politics of Brexit and the American election. To this end items in the vein of a shopping list of items that need to be stockpiled for lockdown, a face mask, a tear gas cannister, take on different meanings and help to tell a story. There’s something beautiful I think about appreciating the value in the mundane. For while 2020 has been boring for many its not been dull in the wider sense. On a personal level, something like an album which kept me sane over lockdown, or a book I’ve read might become ‘signifiers’, changing the meaning of how I see them forever.

For me, one important signifier were the timetables I kept for myself, which were filled up usually with mundane tasks but helped me preserve a sense of routine and surety throughout. This year was a paticulary difficult time to be autisitc, especially in the transition points between normal life and lockdown where my routines, as well as my expectations of stability, collapsed in on me. While as an autistic person I occasionally enjoy solitude, to me the sensory stimulation that comes from going places and meeting people is a cornerstone in staying mentally healthy. As an autisitc person I also experience emotions more intensely. This means that the turmoil the world has been in often leaves me in an emotional state. At the same time though, those little moments of emotional reprieve, the rush of happiness that comes from listening to a song that takes me to another place mentally, time spent with family, these are all important moments that throughout 2020 reminded me that the situation we are in is temporary.

Just because somethings temporary though dosent mean that we forget. We can never forget. Read the quote at the beginning of the blog post. Its from a musical inspiration to many who died very early on this year. It talks about how after you’ve seen tragedy on a huge enough scale, whether that’s personal or global, you learn not to trust the world. Even still, we construct something from that tragedy. When the pandemic struck we strengthened our online communities, and made memes and media which spoke of the universality of our situation. When the floods happened, communities tried to arrange fundraising efforts. When George Floyd was murdered by police it resulted in an international movement for racial justice being ignited. The world will never feel ‘safe’ again. The world was never safe to begin with. As climate change continues to take a toll, scientists warn of the risk of future pandemics and injustices continue to permeate throughout the world, there is every reason to feel scared.

Oddly though, I’m strangely optimistic for the future. That might just be the hope that 2021 will be an improvement but I do feel that we are on the cusp of things getting better. It goes without saying that the news of the vaccines has been amazing, but aside from that I think there is a larger point to be made about lessons learned. One lesson which I learned very early on in the pandemic was never take anything for granted, realising the kindness that people can be moved to with that philosophy.

Come the return to some form of normality next year, I would like to think that we’ll all appreciate our friendships a lot more, that we will all value the community spaces which provide us with sources of togetherness, and that we won’t be so quick to judge others. Mutual aid, the acts of charity work, the shifting conversations on mental health and loneliness, and to an extent even the clapping for NHS workers, proves that we’re capable of that kind of humility. Not to get to political but when Trump lost the US election, many observed the event as a victory for a kinder way of doing things. That will only happen if we are willing to act on that, and work to transition not to normality but to a better way of being that is both sustainable, inclusive of people from a variety of backgrounds and concerned for everybody’s mental and physical health.

Every year I make the same two new years resolutions. They are to look after my mental health, and to make an effort to see my friends (or make new ones) more. This year has not made either of those easy for me, yet I consider them a work in constant progress. I might add one resolution to keep, going forward: to appreciate my little privileges’ more. After everything, to be more compassionate and thankful towards those people and elements which allow us to survive and thrive through chaos, feels wholly and vitally natural.

Thank you for supporting this blog so far. Atypical Perspectives will return in 2021! Have a Merry Christmas and Happy New Year!

Savants or Spokespeople? On Autism and Creativity

When I was a child I was desperately scared of loud noises. The world seemed like a sensory avalanche of sensations best represented by the whooshing of cars, the chattering of voices or the shunting of trains. When I began to enter ultra-sensory environments like school, I took a long time to comprehend the ‘noisy’ environments I found myself in. I would have panic attacks, or react by covering my ears, trying to block out the world.

I think even I was surprised when I developed a keen interest in music and live performance. I have no musical talent but I’m able to analyze and write about my passion. That said, I think I can help explain why when the world is such a ‘noisy’ and overwhelming place to autisitc people, we find solace in either being creative or enjoying creativity. The answer to me is twofold: control and emotion. sound, colours and textures surround us every day and are normally out of our control so through art and particularly through having certain pieces of art which we keep coming back to, we find a sense of stability in our lives. Secondly, as deeply emotional beings, autistic people feel lots but struggle to express ourselves, and so the art we create or enjoy provides a cathartic outlet.

“Artists have a hand in publicly demanding change. They can capture the imagination of an entire public sphere” says art activist Beth Pickens. Another observation I like is from one of my favourite musicians, Steven Wilson, who talks about how he makes music for selfish reasons in the hope that his audience will resonate with him, rather than appealing to some imaginary concept of what he thinks his audience want. That’s kind of how atypical perspectives works. I hope that through this blog, I can bring people in to new ways of thinking about the world around them, yet the blog primarily serves as a means for me to express my own emotions.

None of this is to say that creative autistic people are necessarily masters in thier field. All of the factors I’ve outlined are all things neurotypical people do as well. At the same time I don’t want to get into diagnosing celebrities and pointing to that as a symbol of what autistics can achieve. Marshall Mathers, Anthony Hopkins and Gary Numen have all come out as being on the spectrum and as great as I think it is to have that representation there, the truth is that most people on the spectrum are not savants and are not famous. I do think theres a risk that by focusing on autisitc celebrities, we undermine the work many do to hone thier talent, and create an artificially high standard of success.

What I want to focus on today is how and why autisitcs express themselves creatively, or find solace and relatability through the creations of other people. Why is it that I have such a love of music, and such a keen interest in writing? Why is it that some spend hours honing thier art or photography? In exploring these questions we will hopefully explore new concepts and debunk a few misconceptions.

‘Outside the box’

“The most interesting people you’ll find are ones that don’t fit into your average cardboard box.” Perhaps autistic people are also the ones who truly think outside the box”

Temple Grandin

Autism is commonly associated with logical, rather than emotional thinking. I’ve pointed out before how that distinction is not quite as simple as it may look because while autistic people are better at analyzing detail, there will be situations where we use mental shortcuts in making a decision. In these cases our ‘logic’ might converge with somebody elses, who has a different set of emotions and past experiences.

One study found that autistic people are likely to come up with more creative ideas. Participants were asked to come up with alternative uses for random items like a brick or a paperclip, and responses were judged in terms of innovation, elaborateness and usefulness. Autistic participants suggested uses for the paperclip such as a weight on a paper airplane; as wire to support cut flowers; as a token for gambling; and as a light duty spring. On the other hand, responses graded useful but not paticulary ‘outside the box’ came from neurotypical participants and included hook; pin; to clean small grooves; and to make jewelry.

Interestingly, the university of east Anglia who conducted the study presented these findings as strange, equating autism with more ‘rigid thinking’. However, to me, this just shows that autisitcs approach problems in different ways. While the neurotypical participants might have been using a memory and prediction based hypothesis to come up with uses for a paperclip, autistic people might have been looking at the details – its sharpness, its colour, its weight.

The Adult Autism Quotient test designed by Professor Baron Cohen assesses autistic traits relating to routine, communication and socializing and is used to help diagnose people with autism. It launched in 2001 and continues to be reproduced across websites, books and magazines worldwide. The questionnaire includes carefully-scored questions regarding maths and the arts. If your answers indicate an interest in maths, that will raise your autism score. Any answers suggesting an interest in fiction or art score towards “neurotypicality” – or non-autism. So, if you are autistic but you like music, your autism quotient will be lower and could be less likely to be referred for assessment. It also means that mathematicians may score higher on the questionnaire because they are interested in numbers but not necessarily because they are autistic.

On that, some might see that kind of details based thinking as an anathema to creative thought and its true that creative products do rely on memorability cues, and associations between ‘signifiers’ like a note or a colour, and an emotion. However, this isn’t divorced from an autistic way of thinking, at all. In music or painting, detail is the key, and comprehending how separate elements interact with one another is of vital importance. One stereotype associated with autism is that they are good at maths and science and yet we’re surprised when somebody on the spectrum effectively uses the tools of timing, rhythm and complexity to create a song, or uses analysis and observation as a method of critiquing art.

Sensitive Minds

My observations so far have been quite clinical, looking at how a knack for detail and analysis allows autistic people to make and understand art. Still, that’s not the only element. In order to do either of those you need to have the ability to identify on an emotional level with what your creating.

One possibility that I can certainly identify with is that autistic people struggle to express themselves and so find ways of expression either through creating, or through the emotional experience that comes through enjoying art. It may also be the case that autisitc people are less constrained by social norms and expectations and so can express themselves in a way which defies any inhibitions or conceptions of normality that might be placed on them. Michael Bakan, an ethnomusicology professor at Florida University says of the association between music and communication that:

“The kind of rules of etiquette and the kind of social demands are actually much looser in a music making environment, where there isn’t a predetermined outcome. In conversation, you’re having to constantly modulate to satisfy the expectations of the other person, second by second. So I don’t think it’s language so much that is the challenge, I think it is the social paradigm of language exchange that makes communication difficult for verbal autistic people and why there’s a certain kind of fluency in music that exceeds that”

Michael Bakan

From this interpretation, autisitc people might be able to find more meaningful ways to express themselves through art, than through conversation, as creating doesn’t come with the social anxiety which comes from the risk of being misunderstood or judged. Perhaps this is why listening to music is an outlet for helping me to understand how I’m feeling in a way which simply describing how I’m feeling, dosent achieve.

As autisitc people we experience the world in very noisy ways, so when I’m in a busy room, I will struggle to distinguish between one person talking to me and the cluster of surrounding noises and sensations. Ironically, this makes me a quite attentive listener and by extension quite receptive to cues. When I’m reviewing a film or an album I focus on the nuances as opposed to the elements which are most obvious.

Creative designs feel like a sort of organized chaos where random elements or happenings come together to form a cohesive whole that makes sense as one. The same could be said for emotions. As an autistic person I might have difficulty deciphering how I’m feeling at times, but thats not because I’m not feeling anything. Rather, I’m experiencing my emotions more acutely because I’m taking in more information. A song is, after all, a collection of sounds designed to make you feel something, yet its the combination of those noises and emotional cues together that imparts meaning and takes us on an emotional journey.

All this opens up worlds of opportunity for how we think about communication. One study found that while recognising an emotion on someone’s face is a struggle for many with autism, when the emotion is portrayed in music, identifying it is not a problem. Another investigation, as referenced by the National Autistic society, presents case studies where children with severe autism are seen to use music as a complex language that can even include humour. Bear in mind that these are just a few examples and that for other autisitc people, colour or poetry might present the key to understanding emotion.

I don’t think there is an ‘art of autism’ as in a directing or playing style which captures autism, although there are obviously ones I find relateable. I enjoy photographs which bring out colour and detail as that resonates with the way I’m viewing the world. When I’m watching a film I like to understand and sympathize with the characters, and the songs I like the most are ones which start off on a small detail before swelling into something huge as if to demonstrate that detailed, layered approach towards harmony and rhythm. I also think that’s why we care when figures like Marshall Mathers or Gary Numen reveal themselves as autistic and indeed why we often like to guess at whether musicians or directors we like are on the spectrum. There’s that question of ‘maybe they are autistic?’, because when we resonate with a film or a piece of music, we experience part of ourselves in them.

An Atypical Perspective…

The ‘minds wired for science’ concept needs a rethink: While its true that autistic minds are predisposed to detail, the way that’s been presented seems very strange. Part of the problem is we treat maths and science as necessarily consistent with that logical, detail-oriented, way of thinking about the world, ignoring the fact that a significant amount of science relies on risk, trial and error and innovation. On the other hand we treat creativity as divorced from that way of thinking when so much of it is based in understanding math and how different elements combine. You could put a dividing line at how emotionally motivated these disciplines are, but again the line is far from clear and even if it was you would have to prove that autisitc people aren’t influenced by emotion. Like everything else we simply experience our emotions in a more detailed way – an element of ourselves that many of us choose to explore through creativity.

Creativity helps us make sense of our emotions: I find the concept that art can be used to portray emotions absolutely fascinating, especially when its something abstract like a painting or a song. There’s something truly intriguing about how a set of notes or a colour palate organized to form a piece can act as an outlet for emotions or make you feel something. In the sense that pieces of art employ detail and specifics in transmitting emotions though, they helps autisitcs make sense of our own emotions by giving sound, colour and texture to them, and transcending the limitations of typical communication methods.

Creativity helps to defy social norms: Despite being quite an optimistic possibility, the idea that autistic people might be less constrained by social norms helps explain thier creative tendency. In non-autistic individuals, the pressures of expectation and compliance with group behaviour may get in the way of creativity, preventing some of the more unusual ideas. In addition, we may be less bound by ‘top down’ ideas of what’s normal and expected. Freedom from all these influences and pressures might allow more unusual ideas to form.

Kaufman’s ‘I’m Thinking of Ending Things’ explores surreal narratives – An Atypical Review

‘people like to think of themselves as points moving through time, but I think It’s the opposite. We’re stationary and time passes through us, blowing like cold wind’

Uncertainly named Girlfriend, I’m thinking of Ending Things

Any writer talking about Charlie Kaufman hasn’t got an easy task on their hands. Films like Eternal Sunshine of the Spotless Mind or Being John Malkovich are detailed to such an extent that interpreting them is likely to result in a degree of the writer drawing on thier interpretation.

Kaufman has built his career on confounding viewer expectations around story, logic, coherence, often in attempt to criticise the clichés surrounding storytelling. A central theme of this movie is the often-stereotyped theme of romantic relationships. One of the key plot points that’s presented is the disconnect between staying in a relationship while burdened by the idea that this is the closest you will ever get to happiness, or risk confronting the uncertainty and anxiety that comes with ‘ending things’. Many people’s lives can lack a sense of certainty. My struggle to internalize and expect sudden noises, patterns of speaking or ways of behaving, means the world can be an uncertain place. What wonder then that when we find a sense of certainty like a stable routine or a relationship, we want to cling to that.

The actual story is distinctly awkward – the girlfriend whose name is not quite clear, is the central character. She is going with her boyfriend, Jake, to visit his parents. Importantly, before she so much as gets into the car she’s thinking of ending their relationship, which is in itself portrayed as strange, in the way they communicate. Equally disquieting are her interactions with his parents. The dispersed nature of the communication, accentuated by the erratic camera work and the cuts to out of context parts of the room like a pair of eye’s that don’t know where to focus. In one scene the girlfriend and father are discussing paintings – he hates art that dosent represent anything, and dosent understand how landscapes can be sad – ‘how can a painting be sad if there’s no one looking sad in them’.

The relationship between the couple is intriguing – Jake has a superiority complex when it comes to the art that he creates as well as the intellectual pursuits that his parents dote upon him. And yet they are not that different – they both like to paint and often her career is described as similar even if, like her name, its never made clear. Still, that sense that something is very wrong saturates. I’m not the first person to point out that the boyfriend could be autistic. The girlfriend has an element of being able to socialize that he clearly does not have, again reminiscing the strange feeling of being in a room where everyone’s chatting freely, and you have a glass wall separating from the atmosphere. Does she really want to be with someone who has such a different way of being, just to help him sustain this idealized image of a relationship that he has in his head? We soon realise that the film is not really about either of these two characters.

For as much as her name is obscured, the film puts the girlfriend front and centre both through the narration and the artwork. She captures the anxiety of trying to find a place where she can make a relationship work out of a sense of ‘what else am I going to do with my life?’, even if she knows that the relationship is doomed. Underpinning the film is that sense of danger and as a blizzard ensues throughout, there’s a running motif of the road being treacherous – a metaphor for the journey into uncertainty. Indeed, every time the girlfriend insists that they need to leave, the boyfriend loudly rebukes her with ‘I have chains’ – a strong metaphor for the surrender of freedom she might undergo, if she stays with him. While he’s clinging on to a sort of idealized romanticism that he’s seen in musicals, she’s clinging on to routine and the hope that the road ahead won’t be so treacherous.

I want to return to the title. There’s a deliberate vagueness to the wordplay that allows the viewer to apply the phrase to their own circumstances. Its like Kaufman wrote this film about you – ‘that’s what one hopes for, I guess’. Lurking all throughout is that element of concealed decay, that’s represented brilliantly by the bleak colours of the set. Early on they go to a farm and while their journey starts off sweet, they soon find a pig pen. Jake explains that the pigs had been infested with maggots that slowly ate them alive. There’s this stench of corruption that permeates even the nice moments. When they reach an ice cream parlor on thier way home, the contrast between the vein, dolled up waitresses and the humble serving girl with a rash, proves a vital instance of how the film communicates with the viewer. I had to watch the film several times and look out for those miniscule indicators of facial expression, tone of voice, timing.

Ultimately, if the girlfriend dosent face up to her emotions, either with her relationship or those revealed in the depressive monologue which opens the movie, then she will become like the pig, slowly being eaten alive by her own anxieties. Time bends around Jakes childhood home. The parents start to change age, becoming suddenly a lot older or younger as if to represent alternative futures and pasts for our main characters. When the couple first arrive at the parents house, the mother and the uncertainly named girlfriend wave at each other for a long time, owing to that idea of being stationary, not moving forward for fear of the unknown.

Its when they start driving home through the blizzard that things start to get really interesting. Our two lead characters start talking about another movie centred on a relationship, and while the boyfriend is a fan and sympathetic to the characters, the girlfriend starts reciting a scathing review, where she deconstructs the characters and the narrative, adopting an uppity sneer in doing so. This is in my view the most revealing moment – the boyfriend is empathetic to the concept of established narratives and expects his relationship to be a successful one. The girlfriend on the other hand, while desiring safety, has contempt for narratives as a whole. Its incredibly relatable – I’ve found myself creating those expectations to do with how I expect my life to pan out, only to be disappointed upon noticing I have pinned my hopes on a fiction.

In the final scenes we come to Jakes old school, where he goes missing in an attempt to confront someone he believes is watching him. Its here that we meet the janitor – a character who you have great sympathy for when you realise that this is the Jake who didn’t get to live out his fantasies. Saddest of all he still has that sentimentality, despite being seen by the world as just another old man. What follows is a dance scene between two caricatures of Jake and the uncertainly named girl, which feels reminiscent of a romance from Oklahoma or any number of assorted fairy stories. Constantly, the janitor figure tries to interrupt the dance, either in an attempt to wrench back that youthful innocence or to break apart this fictionalized image of this perfect relationship and restore ‘reality’.

One of the most poignant lines comes not from any of the main characters. Its not clear who the speaker is but the line runs ‘Someone has to be a pig infested with maggots, it might as well be you’. Its a dejected quote, which says you might as well be resigned to stay in situations where you are not in control of your life. Are we just part of somebody else’s narrative, constructed for us so they can say ‘I succeeded’? Or are we free actors, in control of our own lives, but naively setting expectations for ourselves? Indeed, isn’t it normal to fall into a routine of setting narratives and fantasies for ourselves, only to be upset when we witness them collapse?

‘It’s tragic how few people possess their souls before they die. Nothing is more rare in any man, says Emerson, than an act of his own. And it’s quite true. Most people are other people. Their thoughts are someone else’s opinions. Their lives a mimicry. Their passions a quotation’

Uncertainly named Girlfriend, I’m Thinking Of Ending Things

Considering this is a film designed to be interpreted, how do we square its themes with an overall understanding of autism? My past few works have been about the phenomenon of trying to mask ourselves to fit in. In that sense, many autisitc people are in service to a fictional narrative of normality that others construct for us, and can very easily relate to the girl. Still, there’s a lot of common ground the autistic viewer could find in painting an image in ones head of how you want your life to look. If you look through my past blog posts you’ll see numerous cases of where reality has confounded my narrative. Like the boy in the story, I have quite a sentimental worldview and find falling into those ways of thinking incredibly tempting. There’s more I have never told my readers about. Part of the reason this film works so well is that like a sad landscape painting, we see ourselves in these stories. We all have elements in our life at some point which we think of ending. We keep them close to our chest and mull over them because we don’t want to upset other people. Its that nebulous of doubt and uncertainty inhabiting this movie that makes viewing a relatable and sobering experience.

‘I’m Thinking Of Ending Things’ is available to view on Netflix.