Respect as Safety: The importance of ending male violence

I’m sure you’ve all heard by now about the appalling ‘alleged’ murder of Sarah Everard. For those of you reading internationally and perhaps less aware, last week she was attacked by a police officer. A search ensued after her boyfriend alerted the authorities that she was missing. She is now presumed dead after human remains were found in a local woods. The police officer in question is currently standing trial, which is why I’m using the kind of neutral language that I am here. The case remains an extreme but no less serious incident of the kind of thing many women understandably fear about being in public.

Re-enforcing this climate of fear was the police response to the vigil a few days later – an incident that has been the subject of much protest and outcry. In response to people gathering peacefully at clapham common to pay thier respects, all wearing masks and many socially distanced, the police broke up the vigil, pinned mourners to the ground and chucked them into the back of police vans. Many have rightfully pointed out that this is indicative of the climate of fear that exists towards women being out on the streets and excersing thier right to speak out against male violence.

The first part of this blog will give an overview of how I see my responsibility as a male in ending all forms of male violence no matter how subtle. As with everything else, my autism has coloured my way of looking at the issue. The second part of this blog contains a few observations from a friend of mine who is both autistic and female. In situations which are so serious, my words may have limited effect, however if I have the ability to add my voice (and Sofie’s) to the chorus of those calling for a change in how we understand and behave towards issues of safety and respect, then I feel I have a responsibility to do so.

Violence and the problem with ‘not all men’…

Before we go any further, I want to clarify what violence is. Using its broadest definition, violence is anything that directly or indirectly causes physical or emotional harm to other people. In that sense, violence could be anything from directly assulting someone, to using your words and actions in a way which makes people feel unsafe, to refusing to speak out against other, more serious forms of violence. Its not a perfect definition but its one that works when discussing men’s responsibility to stop male violence.

My first reactions to the case of Sarah Everard were emotional and upset. The police response at the vigil a few days later made me angry. I’m lucky in that neither of these incidents made me directly fear for my safety. One of the issues which means that violence against women and sexual harassment are such pervasive issues, is the deeply contradictory messaging surrounding them. A lot of the discourse focuses on what women should be doing, wrongly – in my opinion – shifting the responsibility away from the abuser on to women. As a man, it is my responsibility to make women – and everybody – feel safe, by not engaging in any wrongful behaviours. If I didn’t and followed the ‘Its women’s responsibility’ line, I would’nt have any basis on which to criticise others who verbally mock me for my outwardly autistic traits. Indeed, if it is women’s responsibility to protect themselves, why would’nt that include the right to speak out against abuse when it happens? The message around public safety and bodily autonomy directed towards women seems to be ‘take the necessary precautions so you can defend yourself if your attacked but don’t try and challenge any of the attitudes that lead to assult in the first place’. None of this is to say that people don’t have any responsibility for thier own safety. Everybody takes precautions to feel safe but no should have to feel victimized.

At some point, if you point this out regularly and to enough men, you are likely to hear someone say ‘not all men are like that’. The primal way you want to respond when you hear or see #NotAllMen is “yes, I fucking know. Nobody is suggesting that all men are abusive, simply that it is far too common, and that all men have thier part to play in stopping abuse from happening” . As far as I can see, the phrase ‘not all men’ comes from a primal desire to defend the group that you’re a part of. Its a composition error where men hear others criticisng male violence, and immediately feel under attack. Its the logical equivalent of hearing a story about someone with blue eyes doing something criminal, and immediately becoming offended because you’ve got blue eyes. Of course, in some cases people of a certain identity are made to look bad as a whole – this quite often happens when an autistic person does something bad and media outlets implicate thier autism. However, this is clearly not what is happening here. While many might – rightfully in my view – say that all men are capable of subtle forms of violence, nobody is conflating ‘individual men’ with ‘all men’. To pretend that they are is just absurd.

And yes, in case anyone is in any doubt, the problem is that severe. Evidence indicates that even using the narrower definitions,  violence by men in public spaces is disturbingly prevalent. Although the more extreme physical manifestations of violence such as abduction or murder are relatively rare, a large proportion of women report being assulted. And when women are subjected to serious physical violence or murder, it is usually men who perpetrate it. This is often despite extensive safety work from women. Contradictory messaging about being told to protect oneself while simultaneously being told that protesting is unreasonable and overreactive does nothing to keep women or anyone else safe. Fiona Vera Grey has pointed out how women are expected “the right amount of panic” to be viewed as having a reasonable response to the threat of violence. Even then, what they do may not be viewed as enough. All the while the problem of male violence goes overshadowed and overlooked.

A few thoughts from Sofie Bainbridge…

While I as a man have a responsibility to educate myself about sexism and forms of aggression against women to make sure I do not act in subtly discriminatory ways myself, I am actually incapable of claiming to know everything about the experience of being a female. For that reason, my friend Sofie, who is also on the autism spectrum, has provided a few thoughts which I’ve added some of my own notes to.

…”with me being a woman a woman and autistic, I feel more scared when hearing about these things happening“…

This connotes a degree of anxiety arising from news stories of assult and violence. My friend does take care to point out that violence can happen to anyone for a range of reasons. However, that does not mean anyone can specifically relate to this form of sexualised violence which is so common. That’s why I think its important not to shrug off the concerns of women with ‘everyone risks experiencing violence’ – this is true, but not everyone is necessarily at equal risk. Therefore, as this observation summarises, ignoring the different forms violence takes risks ignoring the causes of the problem and oversimplifying acts of aggression as ‘crimes’ with no social significance or relevance. As Sofie goes on:

“I do believe that there is a threat, especially when I’m frequenting out of society places like bridal paths“…

This points out that while in parts of society or in certain situations, there may be accepted way’s of behaving, in isolated, less formal scenario’s the message to women is clear – ‘the right to feel comfortable in this public space is mine and not yours’. The potential for violence from male members of the public may be particularly pronounced if they see a women ‘stimming’ or acting in ways that are perceived as strange. Of course, everyone should have the right to feel comfortable in all public and private spaces but this is rarely the case.

…”It is really difficult explaining to people that I’m autistic, and they don’t respect boundaries 90% of the time. They think I’m rude or ignorant and can be hostile as a result”…

This is a particularly insipid form of violence that happens to women and autistic people, albeit in different ways. Just looking at autism for a second, when people stand to close to us or touch us in ways we feel uncomfortable with, many of us pull back. Equally, we can be very quiet and reserved when meeting someone for the first time. Both these can be perceived as rude and aggressive. Being a woman introduces a form of sexualised violence into this whereby women who reject men’s advances are met with aggression. The fact that many face the risk of one – or in cases like these, both – of these forms of discrimination proves we need better understanding of boundaries and consent throughout society. As Sofie goes on to say:

“neurotypical men could take the time to understand more. It appears unless it is told in black and white they don’t understand. I also feel they could be less domineering”

I think this is something a lot of men could work to understand. Its important to note the issue of microaggressions – subtle behaviours that make women feel less comfortable. This could be something as simple as using sexist language or intentionally and knowingly walking behind a woman for a long period of time. Importantly, if your autisitc you will still notice subtle forms of discrimination. You might not be able to articulate and make sense of what is happening to you in that moment but just because someone struggles to make sense of thier own feelings, does not give anyone the right to abuse that process.

“sexism effects me, especially when I used to work in a male dominanted industry. I also feel that being a woman on the spectrum, I’m constantly compared to men on the spectrum, as though we are all the same”

This is another example of the vicious ways sexism and ableism often intersect. Autism was presumed only to effect boys, until quite recently. This has led to many woman going undiagnosed. Think about it, count how many representations of autism are about men, and count how many are about women. It says something when the most prominent representation of autisitc females in the media is Sia’s Music. Whatsmore, the common portrayals of women and autistic people in the media is as weak and timid. The generic preconceptions of ‘all autistic people. behave this way…’ or ‘all women are like this’ or even ‘autistic women should be like this..’ contribute towards the dehumanizing and stigmatization of these identities. What right then has anyone, when faced with the idea that all men do indeed have a responsibility to educate and be honest with themselves about sexism, to claim ‘not all men’?

An Atypical Perspective…

Sofie’s special interest as an autistic person is photography and she see’s her home as her safe space – a place she can find some peace and quiet, from the hectic qualities of everyday life. She says that while her hobby gives her a sense of safety, she dosent feel comfortable taking photographs everywhere. This struck me as a great illustrative point. If you’re a creative person you don’t want your creativity to be restricted in any way. You want, to put it simply, to be free. This is not just a creative impulse but a uniquely human one. Whether its to walk, to see your friends, or to take photographs, everyone has the right to dignity and respect in all areas of life. The case of Sarah Everad and the police response at Clapham common has illustrated how we are a woefully long way from achieving that goal of safety and respect for everyone. Fortunately, creativity and freedom to be oneself, is also the solution. Women and thier allies are lifting thier voices to demand a change in a range of creative, clever and inspirational ways. My hope is that these inspire people, paticulary men, to reflect on and change thier violent and discriminating behaviours in the struggle to achieve a safer world.

A Pandemic State of Being: autistic reflections

One of the scariest things, I find is not remembering how you felt towards something. As an autistic person, emotion acts as something of an anchor, reminding me of times or experiences. If, for instance, you asked me to describe my last gathering with friends before the first lockdown, I could perhaps sketch out the rough details of what happened but at this point I’m just liable to say ‘It felt relieving’. In moments when nothing seems wrong, its very difficult to believe that anything is wrong, even in spite of all the news stories telling us that yes, something was indeed wrong. memories of how I felt upon a specific date or event help me to tether myself to specific memories or experiences.

I can tell you how I felt upon the second lockdown, as that happened after a period of relative stability. To have my once again thrown into uncertainty sent me into a temporary period of burnout and exhaustion. Coupled with the unceasingly bleak media coverage, the anxiety that I—and many other autistic people -live with, had peaked. Still, its for precisely that reason that I don’t remember how I felt upon the first lockdown. Did I feel the same way as I felt upon the second, and just forgot? If thats the case then that’s even more concerning, but my memory associated with particularly strong emotions means I somewhat doubt that. A far more likely reason is that the initial ‘novelty’ of the pandemic meant that I was bewildered by the whole experience. None of us were in control and thus any strong emotions or opinions we could have towards the virus were futile. For something like a lockdown to happen once in the life of an autistic person results in a deep and profound sense of uncertainty. For it to happen more than once results in the anxiety of going backwards after some sense of certainty has been reestablished.

On the emotional toll…

In my blog on the process of “social grief” I tried to present issues which lead to mass death and suffering in terms of an understanding of mental health, but there’s another concept that’s useful here – trauma. I want to refrain from saying that we are necessarily living through the first trauma event in several decades. Looking at events like Grenfell and reports of climate disaster flooding in from across several continents, its understandable that even people not directly affected by these could have some trauma associated with knowing that these kind of disasters could easily reach thier door. That said, Covid-19 is a unique case in that while it doesn’t effect all communities with the same level of severity, as a highly transmissible virus its experienced with a degree of universality.

The UK Trauma council have an interesting definition for the state of trauma, arguing that is should be understood as a disturbance in the process of “meaning making”. So to speak, when an event comes along which overturns the way you see yourself and the world around you, that disturbs your orienting systems which allow you to interpret your experiences. For example, before the pandemic was officially declared many people – including myself – wrongly assigned little meaning or significance to covid, partly because it was difficult to imagine anything fundamental changing in our lives. The UK Trauma council argue that “Through meaning making, individuals  restore a sense of the world as meaningful and their own lives as worthwhile”. This might be why elements such as routine have been so important in giving people a sense of stability.

Even the most simple changes to our lives can result in trauma. The identity of lots of people on the spectrum in particular is tied up in our ways of going about things, in our social circles and routines. The first lockdown felt like more of a slow burn, everyone knew it was coming and no one expected it to last as long as it did. Being unexpectedly forced back into not seeing anyone for a few months caused many people significant stress. Unexpected events deplete our mental resilience and if nothing fills the gap to help explain to yourself the usefulness of your life, then that can kick of a cycle of mental ill health, making you less able to adapt to changes.

I appreciate this is all slightly abstract so let’s look at some more concrete, albeit bleak, examples. Most obviously, the reports of death and illness emanating from the news each night are not doing our mental health any favours and can lead to a process known as “vicarious traumatisation”. A survey of psychotherapists who had heard about traumatic pandemic experiences found that 15% had experienced “high levels” of this kind of ‘trauma by absorption’. On top of that, the usual rituals of mourning and reconciliation – meeting with loved ones etc. – which follow traumatic events, have been restricted and made to feel different.

“the evidence is clear that communal gatherings and social networks are essential for adequate recovery. With Covid-19, though, meeting other people is precisely what spreads the virus. The treatment for mass trauma in one case is the problem in ours”

BBC Future, How to heal the ‘mass trauma’ of Covid-19

That the threat is invisible is part of the issue. It means that ordinary environments, even one we have positive memories associated with, get reframed as dangerous places where the virus can spread and mutate. Going back to the anchoring effect I was talking about earlier, whereby people like me can feel a certain sense of stability associated with a specific place, this is especially frightening. Speaking as someone who see’s even small events in quite huge, systemic terms, I’m scared as to how I will view the world in the aftermath of the pandemic. Autistic people especially, could use those narratives built up over the course of the pandemic – “we never know what to expect, the world is unsafe, our leaders aren’t looking after us” – to develop quite a scary view of thier surroundings. Hopefully you can see how all this meets the definition of what we might call “collective trauma”.

Healing and the peril of forgetting…

In psychology, things like everyday ‘rituals’ and shared social spaces are called “the basic tissues of social life”. Of course, the pandemic does present opportunities for us to reform in digital spaces for instance, but also presents the risk of damaging the wellbeing and sense of psychological safety that comes from our communities. However, the fact that we have all experienced the pandemic in one way or another means that it is linked to a group identity, as are the narratives about “when this is all over”. A collectives relationship with trauma, according to psychologists like Gilad Hirschberger, helps people to overcome, transcend and move past what they have been through.

This raises an important issue – perhaps in the aftermath of the pandemic the way we talk about it should focus on celebrating the fact that its over, and mourning for all those we’ve lost, because that implies that we’d be remembering the experience. This might seem like a strange thing to point out but I genuinely think there is danger in putting coronavirus behind us in our memories. Covid is often compared to the 1918 influenza pandemic, but only one country instituted a national memorial process – and that country was New Zealand. I don’t know if there’s any link there between how they reacted to that pandemic, and how they’ve behaved in this one, but the idea that there could be provides us with an interesting thought experiment.

“Initially, AIDS seemed to single out gay men and other so-called ‘at-risk groups’, such as Haitians and heroin users. As churches refused to bury victims and schools barred haemophiliacs infected with the virus through contaminated blood products, it is unsurprising that the shame and grief of friends and family members quickly turned to anger and demands for political change. By contrast, even when the Spanish flu mutated into a virulent killer in the autumn of 1918, most of the deaths were compressed into a short four-week period, with the mortality falling on a wide cross-section of society. Cutting across social, sexual and ethnic lines, it did not become a vehicle for stigma or a motor for outrage”

Mark Honigsbaum, Why the 1918 Spanish flu defied both memory and imagination

Obviously the impact of WWI immediately preceding the 1918 pandemic can’t be ignored, but I don’t think its as simple as that. Why is it you don’t hear anyone talk about the 1957 influenza pandemic or even the 2002 SARS outbreak? Perhaps there’s a lesson here about how we talk about pandemics. As I’ve pointed out, in the sense of wanting to come together after the pandemic, its useful to think about the situation affecting all of us equally. In some senses it has, but in other senses it hasn’t. You just need to take a cursory glance through some of my blogs to see that there’s been outrage about people with learning difficulties not being prioritized by the vaccine despite the significantly higher death rate amongst people in that group. This has been accompanied by multiple other injustices against autisitc and disabled people, which I’m not going to revisit here. Making meaning of pandemic trauma is difficult because disease deaths simply aren’t as “narrativized”. HIV/AIDS was painted in a narrative-based because it initially appeared to effect a specific group, so was siezed upon by different sides in a larger political battle. However, pandemics are rarely framed by the media, in such political terms. Do they have an aim? Who is the enemy? What’s the cautionary tale?

Without answers to these questions, there’s a risk that this pandemic could shrink to the backgrounds of peoples memories like past ones did, and I think its important that we do remember. Outside of the obvious – and highly politicized – idea that not commemorating may affect our preparedness for future crises, it is important we posses those channels for trauma and catharsis. Art, memorials, activism on the issues the virus has highlighted and public gatherings tinged with the memory of the pandemic, will be central in understanding our own emotions and making a difference for the future.

An Atypical Perspective…

Speaking as someone who considers themselves highly emotional and motivated by emotion, Covid-19 is somewhat traumatic for me. I imagine it must be immeasurably traumatic for those who have experienced the pandemic in more adverse ways than I have. In the spirit of meaning making, we will all – autistic or non autistic – have to work hard to rebuild our routines, our relationships with loved ones and our ways of thinking about the world in a positive light. This will end, however it is likely that our ways of thinking about the world have been coloured and changed, probably permanently. I’m sure you’ve seen me say in the past that I will think twice before taking anything for granted ever again. Just because the past year has left an imprint on our minds, dosent mean we can’t use that to safeguard our own wellbeing and to shape a better future, for all of us.

Morality and Disability: ethical theory, utilitarianism and Peter Singer

Before I get into the body of this, some clarification; I was not expecting to do a blog on Peter Singer as I thought the controversies surrounding him would be best left alone. Then he did an interview with an independent media outlet that I respect, in which he brought up his utilitarianism and I thought that this was worth exploring.

Coining the term speciesism, his 1975 book Animal Liberation argues that all sentient beings should be regarded as morally equal in the sense that their interests ought to be considered equally. He differs from many vegans in that while he is against animal testing in many cases, his philosophy on life allows him to concede that some testing is necessary if, for example, its the only way to help alleviate human suffering on a grand scale.

He also proposes a theory of effective altruism – the notion that you should be altruistic in the most effective way possible. He recommends people give the majority of thier disposable income to charity, if it will reduce suffering for the most amount of people. Emotional attachment does not factor in to this worldview – even the interests of your own child do not count for more than those of a group of starving individuals.

However, he has attracted controversy for some of his views, and the ones we will be focusing on today are his views on disability. Notably, he has publicly justified the killing of infants with disabilities if doing so increases the happiness of ‘all involved’. Needless to say, I find that disgusting.

Underpinning Singers worldview is the concept of utilitarianism – a philosophy which believes that all actions should aim to maximise happiness and/or welfare for affected beings – in this case animals and humans. Utilitarian’s believe that the consequences of any actions are the only measurement of right and wrong so from an animal-rights, utilitarian perspective, us living in a culture that consumes animal products is immoral in that it sustains the mass suffering of animals. On the one hand, this is a kind philosophy that can encourage generosity. On the other, this can seem quite a cold and calculating idea that prioritizes the ‘greater good’ above other moral values. We will delve into Singer more later but first lets provide some background…

Some thoughts on utilitarianism…

In its original form, the principle of utilitarian moral theory states that the correct action is the one that produces the most happiness for all involved. It has certainly been a useful theory in the past and can result in adherents fighting for a fairer society. John Stuart Mill, who adopted Jeremy Bentham’s original theory fought for women’s rights, against slavery, and for fair labour practices. Aside from that, I think ideas like effective altruism have thier place in encouraging humane acts of charity. I, for instance, would recommend you donate to the Autistic Self Advocacy Network over Autism Speaks any day, because while both of these actions are well intentioned, the former group are likely to spend thier resources on actions that help people on the spectrum, while the later would use those funds in ways that hurt us. As well as that, I completely see the appeal of looking at issues on a macro as opposed to a micro level. I too tend to see things in more systemic terms, tending to observe how specific decisions, particularly ones by individuals in authority, effect the rest of society. Utilitarianism also considers this and is not just focused on the individual.

Still, the theory is terribly flawed in other places. Applying a utilitarian mindset asks us to compare our possible actions based on the benefits and harms they reap. That is to say, assign values to the benefits of each of our actions. However this is not congruent with how people think in real life and relies on subjective, rather than objective judgments. How do we go about assigning a value to life or to art for instance? You could make a piece of art and justify it on the basis that your work brings happiness into other peoples lives, whereas to someone else that time could have been better spent being more ‘productive’. More than that though, no one can be expected to calculate the individual consequences of each and every one of thier actions. Complexity theory exists precisely to chart the individual causes of social problems and how those causes interact with each other, but our cognitive ability to measure and to predict the benefits and harms resulting from a decision is dubious, to say the least.

It’s also arguable that the idea violates the standards of justice in pursuit of finding the greatest good for the greatest number. One example which often gets given is of an innocent man being accused of a crime. There is lots of civil unrest surrounding the case, negatively affecting a lot of peoples wellbeing and happiness. In the spirit of fairness, most would advocate that the innocent man be set free. However, from a utilitarian perspective, wouldn’t the better decision be to sentence him, if that reduces the social unrest overall? A lot of disabled people can relate to this line of thinking – if, for instance, your disability is defined in terms of suffering and difficulty, you might struggle to find work as businesses might view employing someone with a disability to be a net-negative with the risk of reducing how comfortable staff members and customers feel. That’s obviously completely unreasonable, but I hope you can see that making decisions based on what increases overall happiness can be based on subjective value judgments that may not be congruent with equality and progress. It’s wrong to unjustly punish someone, but not if all that matters to you is the net gain of what you see as ‘happiness’. To utilitarians, increasing the happiness of the many can justify making a few miserable.

We can conclude from this that while consequence should be an important guiding factor in our decisions, it should not be the only guiding factor in our decisions. Rights, fairness and even emotion can be equally important. Utilitarianism boils down the deeply layered process of making a decision down to a mathematical calculation of good and bad. For that reason, while it can be a powerful reminder that morality calls us to look beyond the self to the good of all, it can also be harmful. Peter Singer, on disability, is a prime example of this.

So how does this relate to disability?…

At the end of the interview, the interviewer asked about the controversy surrounding his stance on disability. See, Singers views on this subject have made him something of an enemy to the community and the interview made me initially angry that the controversy was addressed in what I saw as a quite a non-challenging way. In Practical Ethics, Singer details how he thinks the interests of beings should be weighted, arguing that:

“When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore, if killing the hemophiliac infant has no adverse effect on others, it would, according to the total view, be right to kill him.”

Singer, Practical Ethics

This rests on a series of assumptions. What does ‘lead to’ mean? Parents may not have the foresight to know if they will have another child, and why would they necessarily choose not to have another if they kept the disabled child? Why is Singer presuming to know that the ‘hemophiliac’ will lead a less ‘happy’ life than a non-disabled one? The quote furthers the idea that disability is more likely to presuppose unhappiness than being abled, when ‘happiness’ is a subjective measurement that depends on a range of factors. By some ratios – family, where you live, support available to you – some severely disabled people have better lives than that of some abled people. Singer would probably prefer to talk about people who are likely to ‘suffer’ but that’s a word that’s so often used to describe anyone with a disability that the option of euthanasia could apply in practically every case. My autism means that I can struggle with my sensitivity. If we’re comparing, I might not have experienced some of the happiness that I would if I were non-autistic. Should I have been killed? How on earth can parents make a judgement about the ‘total happiness’ that a person will experience? Even if they could, this would still be ableist as it presupposes that abled people can make value judgements about our lives based on subjective concepts about our happiness relative to that of non-disabled people.

In the interview I watched, Singer draws a comparison between this and abortion: ‘many of the same people who criticise what I say about people with disability will defend the right of a pregnant women to end her pregnancy and that will include if the child has a disability’. If abortion were allowed up to the point of birth, he might have a point, but this is rarely the case. I’m from the UK, where there’s a 24 week limit justified in law by the fact that this is when life becomes capable of surviving on its own. Irrespective of your views on this issue, this comparison doesn’t work. I’m not going to delve deep into issues like screening for downs syndrome, except to say that the lives of people with disabilities are worth living. I’m going to recommend you read this article in the Atlantic which gives nuance to the debate.

The article makes clear that if you handed any parent a whole list of every factor that would increase their chances of unhappiness relative to someone else —illnesses etc. then everyone would be too scared. It concludes that we should move away from traditional measures of what counts as happiness. At one point, the author points out that people in the medical profession, or in this case philosophers, base their identity on their intelligence; ‘might the system be biased on the question of whose lives have value?’. You can perhaps see why to some disabled people, Singer might appear to be calling into question the value they add to the world.

I’m bringing value judgements into this discussion because this factors into Singers own thinking. In one interview he posed the question that if most people see the life of a dog or a pig as inferior to that of a human being “On what basis could they hold that the life of an intellectually disabled human being with intellectual capacities inferior to those of a dog or a pig is of equal value to the life of a normal human being?”. However, intellectual capacity is not calculable to such a specific extent. Again, there’s no consideration of emotion – if you saw a dog and a disabled person drowning, you’d instinctually want to rescue the person, either because they have longer life expectancy, or because there’s more sentimental value attached to the person. Interestingly, in another article, Singer argues for rationing healthcare based on average life expectancy – this seems to contradict his assertion that the value of an intellectually disabled person is potentially worth less than that of a dog. This also relates to a blog post I wrote a couple of weeks ago, where I talked about patients in the UK being hit with do not resuscitate notices because of thier learning disabilities. We don’t know what the rationale for this was but there’s a chance that the shorter lives of many people with learning disabilities, and the fact that they are less likely to be ‘productive members of society’, was part of the decision. However, both of these are largely social phenomena based on the fact that intellectually disabled people often don’t have access to the medical support that they need, and are often shut out of society.

In that sense, shouldn’t a true ethical utilitarian approach to disability be to advocate for making society more fair and safe for marginalized groups? Wouldn’t that be more in line with the concept of creating happiness, than relying on value assessments as to who is deserving of life, the conclusions to which are informed by existing stigma? Don’t get me wrong, Singer would say that he is in favour of that levelling up, but to me its about the precedent set by his views. His is a cold, calculating utilitarianism that asks people to make strong decisions that ignore complexity, based on arbitrary concepts about the ‘utility’ of decisions. There’s a short-sightedness at play that ignores the fact that having less disabled people and treating their birth with disgust, means that we are less likely dismantle the barriers which make their lives unhappy in the first place. Any attempts to create that new world have to be grounded in approach which grants dignity and agency to disabled people, so that they can be an essential part in shaping the society we want to see. Any approach that ignores that, and looks to short-term solutions in the vague hope of long term gains is simply papering over the problems we have with vague platitudes of mercy and reducing suffering. It’s an approach which makes sense to some utilitarian’s but can only be antithetical in the long run.

An Atypical Perspective…

Much as this blog gives the impression of being about Pete Singer and utilitarianism, its moreso about our cultural attitudes to disability and how we assign value based on the assumptions that non-disabled and disabled mean better and worse off respectively. We base our conception of downs syndrome and ASD and hemophilia off sets of assumed truths. “They’re never going to have a job, they’re never going to get married, they’re never going to go to uni”. Indeed the narrative that ‘disabled’ people do attend uni and get married are helpful in pointing out how disability is socially forced upon people. Nothing changed in the biological make-up these conditions to allow these changes to happen. Rather, society shifted focus to better accommodate them.

But what about those that don’t work or get married but like to do art or to be with family. Do we ascribe less value to these people based on a culturally constructed notion that they are somehow “worse off? Singer might answer yes and that families and medical experts should get to decide whether or not that persons life is worth living. One of the reasons he sees it as appropriate to kill babies with disabilities is because their lives are difficult and they are not first in line to be adopted. What this fails to consider is the fact that these difficulties are socially constructed, and that an approach to ensuring ‘more happiness’ should be changing society, not getting rid of the disabled.

Sia’s ‘Music’ proves an tedious display of ableism and ignorance – An Atypical Review

Although I try, as a critic and commentator, to remain neutral on a piece of media before the experience, I and many other people in the autisitc community were angry at ‘Music’ and Sia months before release date. The issues started with some autistic people making some very good faith critiques about Sia casting a neurotypical actress, Maddie Ziegler, in the role of a non-verbal autistic character named Music. In the process of responding to those tweets she called autisitc people bad actors, said that she tried to cast a non-verbal autistic actress despite previously saying in 2017 that she wrote the role specifically for Maddie and tacitly acknowledged that she hadn’t tried to make the environment more accessible in the process. When asked later whether she thought she was being ableist she replied “Well, it is ableism but it’s actually nepotism, because I couldn’t do a project without Maddie” – So….hang on….are we saying that ableism is just fine now?

Perhaps that perspective came from working with Autism Speaks – an organization who put the majority of thier resources into finding cures for what they see as an affliction. The popstar turned budding director claims she did three years of research into this subject, and yet she didn’t know that to most people on the spectrum, autism speaks equals bad? Woe to those who press play. Needless to say, I was not looking forward to seeing this. However, I felt that if my review could stop one person from seeing this movie, then it would be worth sitting through. ‘Grrrrrrr. Fuckity fuck why don’t you watch my film before you judge it? FURY’ Sia tweeted early on, in response to critics. Well Sia, I’ve seen your movie. Its terrible.

Indeed, this movie isn’t just terrible. Its offensively, patronizingly, terrible. Its’s the cinematic equivalent of every person who’s ever looked at you pityingly when they say that your autistic. It observes without understanding. This is apparent when in one of the movies many phoney postcard- inspirational attempts to pull on the viewers heartstrings, two of the main characters entrusted to care for Music – Zu and Ebo – walk behind her in the park, and comment on how her autism means she can apparently hear whispering from three rooms away, which…uh….no. If this seems a baffling indictment of the kind of ‘magical thinking’ idea of autism, that guides many of Sia’s directorial decisions, including the sensory-overload inducing dance routines that pepper this film, that’s because this movie is not for autistic people at all.

‘Music’ tells the story of Kazu “Zu” Gamble (Kate Hudson) – the lead characters drug dealing sister, struggling to stay sober. In true rain man form, the autistic girl becomes a cynical plot device to help the protagonist achieve her goals of getting her life together, and be with the kindly neighbor ‘Ebo’ (Leslie Odom Jr.) As well as bein a redemption narrative for a neurotypical characters, its also a vain mercy device for Sia who has a cameo in this movie to talk about a fabricated charity venture named ‘popstars without borders’. What autistic people are supposed to get from any of this, is unclear. The whole piece reeks of a ill-informed attempt to pander to some neurotypicals desire to feel good about themselves, while allowing Sia to give herself a pat on the back for being such a good saviour of the autistic and disabled, who she evidently dosent believe have any agency of thier own. In one particularly revealing interview leading up to this film being released, the interviewer compared non-verbal autisitc people to inanimate objects to which Sia nodded and smiled. Did I mention that Autism Speaks was involved here?

From the moment this film starts, you get an extremely offensive caricature of autisitc people as Ziegler dances through a labyrinth of flashing light while contorting her facial expressions, flailing her arms and making exaggerated movements. I remind you that there are plenty of autistic actors Sia could have picked in making this movie, who may not have so easily slipped into the kind of ableist tropes Ziegler does here. In defending her movie, Sia recalled how Maddie became quite emotional at the possibility that she could be taking the mick out of autistic people. For reference, I am not about to go after an 18 year old actress for doing something that she was told to do, but I can’t say she wasn’t right to be worried. This performance is a caricature of autistic ‘stimming’ and is deeply reminiscent of the exaggerated mannerisms people employ when bullying autistic people for the ways we behave. I find these stim activities deeply comforting, as they lend a sense of stability to my world. However, I have believed in the past that there must be something wrong with the way I move, due to bullying and imitation by neurotypicals. Watching this deeply insensitive, tone deaf embarrassment of a film makes for an infantilizing and dehumanizing experience. I won’t link to the trailer, but here is a tweet from autistic advocacy account, the autisticats:

None of this is helped by the flow of the film. The entire thing feels messy and scattered, like narrative cohesion was an afterthought rather than a guiding principle. Characters fall out and then make up, in fake attempts to inject drama into what is otherwise a lifeless and deeply tedious script. Nearly all of the dialogue is hackneyed, feeling torn from a scrapbook of generic song lyrics, a la – “I used to think I knew what love was, now I’m not so sure”. There’s an odd subplot about a non-speaking neighbor of Music and Zu who’s verbally abused by his parents, and ends up getting killed after stepping into a fierce altercation between his mum and his dad, just after buying a pet dog for Music. Why does this subplot exist? Who is this character? What is this entire section of the movie intended to achieve? In yet another display of pointless mockery, Ziegler’s character makes lots of noise in the hallway of the apartment building where she lives, provoking the ire of a very angry neighbor who responds by calling the police – a movie event that goes absolutely nowhere. Lot’s of debate has been had as to whether the dance sequences or the actual movie are preferable – a conflict I wrestled with, as I found myself wanting one type of scene to end as the other began. Worst of all, I feel the musical breaks could have worked had some serious consideration been put into them beyond the desire to visually wow the viewer, and if they were accompanied by a much more coherent film, to give them context.

This brings me to something I’ve been avoiding thus far. Let’s talk about the restraint scenes. Prone restraint is more often than not, a form of abuse directed against autistic people which can result in injury or death. Here its portrayed twice after ‘Music’ is portrayed having autistic meltdowns and both times, its portrayed as an act of mercy rather than the violent and aggressive action that it is. “aren’t you hurting her” Zu asks when Ebo performs the prone restraint action. “No, I’m crushing her with my love” Ebo replies in a line that would be outright laughable if it weren’t so ridiculously offensive and wrong. For reference, autistic people do sometimes have meltdowns when confronted with sensory overload. They are unlikely to be of harm to anyone in that moment and these states can be stabilized in a range of ways, from letting the autisitc person find a quiet space where they can calm down, to talking to them.

I’d hate to think that from watching this movie, more people came to believe that prone restraint is an acceptable way to deal with this situation. These scenes surfaced before the movie was released meaning they were among the concerns that Sia so ardently dismissed when promoting her film. I also fear for the wellbeing of autisitc people who have experienced prone restraint and are reminded of thier suffering through watching these scenes, after experiencing all the trauma that comes through being violently constrained. If there was ever a reason not to watch this awful movie, these scenes provide that excuse. The below video cuts off before any violence is shown, but is worth bringing to people’s attention:

Although I have supported Sia’s music and art in the past, after watching this film I’m done with her. Her vague apologies and attempts to cover up her huge mistakes are too little too late. Its recently come out that this movie has received a golden globe nomination which is an insult not only to the campaigners speaking out against this movies insipid portrayals and terrible writing, but an insult to all the genuinely talented autistic creators who I want to focus on much more in the future, and who unlike this movie are worth your time. I sincerely hope that Sia never plans to come within an inch of this subject ever again and I ask anyone who wishes to make autism media, not to steal agency away from people on the spectrum, not to rob autisitc actors of badly needed work, and not to shut out all facts and opinions which conflict with your ego in pursuit of making a conceited and self-aggrandizing pity narrative! Under no circumstances should creators put themselves on a pedestal by claiming to be supportive of disability, before silencing and patronizing us. If you can’t at least try and understand us by listening to people and organisations who care, let autisitc people tell thier own stories!

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.