On Spectrum10K: Co-production and the problem with autism research

On the week of the 26th August 2021, a new research project into autism was launched named Spectrum 10K. The questions started almost immediately from there. The idea of the project is to collect DNA samples from 10,000 autistic people to examine our genetics, to see how our experiences “shape our wellbeing”. The project has attracted attention largely for its celebrity endorsement from individuals like Chris Packham. Spectrum 10k aims to be the largest genetic study conducted on autism in the United Kingdom’s history, and exists – at least in part – to create a giant autism DNA database.

To give some credit to Spectrum10K, they claim that they have no intention of attempting to find a cure for autism, with the Autism Research Centre (ARC) claiming to be “ethically opposed to any form of eugenics”. The study claims it wants to look at comorbidities with autism, including anxiety, depression, and gastrointestinal conditions. However, even if this is not thier intention, Spectrum 10K cant claim that the information they gather will never be used for eugenic purposes. Newly discovered genetic syndromes could give rise to more prenatal tests. The study has already been approved to be shared with “commercial collaborators” or “potential academic collaborators”. Similarly, it’s difficult not to be skeptical of any study looking at the genetic links of autism, considering the specific ways this study will benefit our wellbeing are never specified.

Much of the autistic community is rightfully concerned, with the hashtag #StopSpectrum10K circulating. Speaking personally, I am not entirely opposed to studies of this nature but they should be led by autisitc people, honest about thier intentions, and honest about what happens to the data that’s gathered. Some of the co-occurring conditions they target are ADHD and dyspraxia, the latter of which I also have and the former of which I have family members with. These are so closely tied to autism that eliminating them seems dangerously close to eliminating autism itself. The mind doesn’t draw strict lines and in cases like mine you can’t so meticulously distinguish between autism and dyspraxia because they are, in many ways, one and the same! The study also mentions mental health difficulties. However, the idea that these can be explained by autistic DNA is questionable at best and an example of psychological determinism – the idea that absolutely everything happens because of pre-existing conditions – at its worst. Rather, research shows that autistic mental health and wellbeing issues are accounted for by lack of societal acceptance, a need to hide or ‘ mask’ autism to “fit in” or a lack of accessible opportunities. These alongside a range of other social factors that genetic data cannot address.   

Searching through the hashtag highlights many of these concerns and more. Unfortunately, some of the projects celebrity ambassadors have been less than receptive to these critiques, with Chris Packham seeming to suggest that anyone who has ethical concerns about a study the like of which has never been done before are “conspiracy theorists” who “fear science.” (by this logic, presumably his objections to animal testing are also anti-science) This is despite the fact that the autisitc community have plenty of reasons to be concerned.

Who’s Behind Spectrum 10K?

One approach that a lot of studies today are actively tying to avoid is that of research being something that ‘happens’ to people, rather than something that is ‘done with’ people. Its in part the opposite approach which led to the early conceptions of autism as something that happens because of bad parents and have caused autism to be historically cast as an affliction.

Notable among those leading the project is Simon Baron Cohen – he has fed the narrative that autistic people lack the ability to empathize with other people, that people with autism process the world through a stereotypically ‘male’ lens and that only boys are autistic. His ideas have led to many people going undiagnosed. There are potentially hundreds of thousands whose mental health has been damaged by not knowing they are autistic, because they did not fit his extremely narrow, outdated and over simplistic view of the condition. Likewise, Daniel Geschwind has a history of stem cell research looking for causes of autism, and leads an organisation called the Centre for Autism Research and Treatment which endorses the use of Applied Behavioral Analysis (ABA) – a method which stopped being professionally prescribed due to assertions by adherents that the method cures autism, despite its association with PTSD and trauma. Tellingly, Geschwind was the first chair of an organisation called Cure Autism Now who are partners with Autism Speaks. With all that in mind, how can autistic people believe that this study are prepared to work with people on the spectrum to understand autism?

There is no co-production in Spectrum 10K. Indeed, there hasn’t even been any information that openly Autistic researchers have been involved in the design of the study; only that an advisory panel included 4 Autistic people out of 11. I would remind everyone that this study is hoping to collect the DNA of 10,000 autistic people. What is the excuse for not including people on the spectrum at every level of this project? Autism research has a bad reputation amongst the neurodiversity community, not due to an imagined bias against science but because its traditionally been done by people with little knowledge of autism, as a means of ‘alleviating’ the condition, rather than focusing on meaningful and measurable goals like improving our quality of life. We do need more research into autism, but without involvement from autisitc people the field will continue to be fraught with discrimination and misunderstanding.

Data, Consent and Transparency

One of the most worrying aspects of this study is the consent form. Participants cannot ‘opt out’ of having thier DNA data shared with third parties for future use. This seems strange – someone might consent to have thier DNA used for one purpose and not for another. Despite this, if participants indicate that they don’t want this to happen, they get notified that “Unfortunately, we can only include participants who have indicated ‘Yes’ to the above statement in Spectrum 10K, as this is essential for the study”, the word ‘essential’ indicating that they do indeed intend to share this data, which of course raises the questions of “to whom?” and “for what purpose?”. It would seem to an outside observer that while Spectrum10K are perfectly aware of the ethical risks of sharing this information, they are washing thier hands of any responsibility they might have for other entities using the information to – for instance – create a pre-natal test for autism like the ones that exist for downs syndrome, or do research into the causes in hope of finding a cure.

While none of this is confirmed, the lack of thorough information provided by Spectrum10K means that its perfectly reasonable to speculate and ask questions. Its especially important to do so, when the consent forms themselves are so confusing – DNA collection, data collection, and complete access to medical records is asked for without any description as to the study itself or who that data will be passed on to. The form also says that while participants can withdraw, the study will keep the information they already have and although there is a ‘no further use’ option, the form states that under this choice, “samples” will be destroyed with no clarification as to whether this includes the information that’s already been put into the databases.

This is a recurring trend as well – words like “samples,” “DNA,” “information,” and “data” are used interchangeably throughout the consent form. I know myself that when you’re talking in scientific terms, the words you use are vitally important. However, without so much as a definition guide, the form is difficult to understand in detail, especially for some autisitc people like me, who often require very specific language in order to properly comprehend what they’re reading. The most charitable explanation for this is carelessness, with the least charitable being deliberate vagueness in order to take advantage of people with a protected characteristic, some of whom might not fully understand what they are signing up to.

On that note, the study encourages parents to sign over DNA samples of children and adults who cannot consent for themselves. To clarify, autistic individuals could have thier DNA handed over, but due to the studies insistence on data sharing, this would be a lifelong commitment that they would have no control over. By not being clear about the reasons and aims of the study, the researchers – willfully or not – are being deeply deceitful, muddying the waters and inviting participants who – due to the lack of information presented by spectrum 10K – cannot possibly give truly informed consent, which is deeply worrying given the nature of the study.

Eugenics and ‘Quality of life’

By far the biggest concerns around Spectrum 10K are around the possibility that this study might be used for eugenic-based causes – for example, discovering the cause of autism could lead to the development of screening technology, like those offered to parents to give them an option to abort children with Down Syndrome. And again, this hasn’t got to be the aim of this specific study to be one of the consequences of such a large DNA collection exercise. Another possibility is that the data could be used to encourage identification of autism from an early age as a means to ‘condition out’ the autism through behavioral therapies.

As stated earlier, Spectrum 10K are touting the purposes of the study as being to improve autisitc peoples wellbeing, focusing specifically on co-occurring conditions. However, the grant application states the following:

“We will accelerate gene discovery by collecting the DNA from 10,000 people with autism in the UK and thier immediate families…this large scale resource will enable us to identify several genetic variants that contribute to the development of autism”

Nowhere does this document mention anything about wellbeing or comorbidities. If this study already has the funding to do this study, participants should know specifically what has been approved. The lack of transparency surrounding this study is completely unethical. Despite that, the above statement can’t be found anywhere on the studies website. The project does attempt to alleviate these fears by saying that the data will only be passed to organisations whose values match theirs. However, since we’ve already established that Spectrum 10K’s values are vague at best and questionable at worst, this does very little to ease any of my worry’s.

This leads me to the issue of quality of life, which the study seems to treat like a measurable factor and not a complex one thats dependent on a myriad of factors. As everything to do with this study is obscure or confusing, nowhere is the definition of ‘quality of life’ given nor explanation as to how the study would improve peoples lives. Remember that there is no co-production with autisitc people in this study so any judgements about quality of life would have been made by non-autisitc people. On the issue of mental health, the reason so many autisitc people might be suffering on that front is because we are more likely to be victims of abuse, a lot of us have experienced social isolation or poor emotional development and many have to spend every day pretending that they are neurotypical. This is all stuff that neurodivergent individuals could have told Baron-Cohen and his team, had they entertained the idea of working with them. Whatsmore, the public project materials make the spurious claim that sleep quality, anxiety and depression are all rooted in genetic factors, without presenting any evidence for this wide-net assumption whatsoever.

All this indicates that Spectrum 10K are basing thier guiding assumptions on the ‘pathology paradigm’ – the idea that mental health problems and the like can be explained with problems intrinsic to the individuals genetics, and therefore can be treated as a medical problem. Implicit within this is the idea that there is one ‘correct’ style of being which is framed as normal while autism, ADHD and other conditions are viewed as disorders. This is in direct conflict with the perspective of the Actually Autistic community who feel shut out from this study.

An Atypical Perspective

Theres an inherent contradiction at the heart of Spectrum 10Ks claim to have the best interests of autisitc people at heart. On the one hand they claim to want to help autistic people with problems like mental health struggles. However, by presenting all the issues which autisitc people experience as problems intrinsic to autism, they are demonstrating thier lack of knowledge about autisitc people – a problem that’s exacerbated by the lack of cooperation with the autistic community on this project. This is the source of much of the vagueness and confusion around the studies intentions – they say thier intentions are noble but by focusing on the person, they are not just implicitly implying that autistic people are broken, but opening a massive dead end in this studies ambitions to improve our lives. Studying genetic data would not necessarily be fruitless, but extremely limited in pursuing this goal.

This raises two possibilities – the first is that the study itself doesn’t know what they will do with the data or what purpose it would serve. To an extent, a degree of scientific ignorance is a good thing as studies shouldn’t decide what they’re going to find before they’ve done any work, but being unable to answer massive questions around how that data will be used in the future, is far from ideal. Still, surely the study would have needed to be far more specific about thier intentions to receive funding and resources? This brings us to the possibility that Spectrum10K are not being entirely honest about what they actually want this data for. The autisitc community certainly have cause to be worried about the possibility that thier data will be used for eugenic purposes, considering some of the people involved and the history of studies of this style. This may be dismissed by some – especially Spectrum 10K’s celebrity ambassadors – as ‘anti-science’ or ‘conspiratorial’ but this really is nonsense. Throughout history, science – including autism science – has needed to learn to take into account ethical questions, the concerns of campaigners and non-scientists in order to grow and develop. Criticising a deeply flawed research project is not anti-science. Attempting to shut down outside worries and calls for transparency is most certainly anti-science.

Unfortunately, this research project is the latest in a long list of scientific endevours – many of them by Baron Cohen and Geschwind – which due to thier lack of willingness to work with autisitc people, have done a disservice to the community and actually made peoples lives harder. Researchers are capable of being wrong, both morally and factually and much of autisitc research hasn’t done much to win the support of the people it claims to be helping. As one very good autism researcher excellently summarised:

“My sense is that genetics research projects like Spectrum 10k are requiring Autistic people to have a level of trust in autism research that most autism researchers absolutely have not earned.”

Kristen Bottema-Beutel, Boston College

An Atypical Review: Bo Burnham’s ‘Inside’ combines wit and relatability

“How are you feeling? Do you like the show? Are you tired of it? Never mind, I don’t wanna know. Are you finding it boring? Too fast? Too slow? I’m asking, but don’t answer ’cause I don’t wanna know”

Bo Burnham, Inside

Being locked inside for an entire year often felt like such a barren and apocalyptically mundane act that its hard to believe any art came from 2020 at all. That said, I have become intrigued by the genre of ‘lockdown’ which seeks to simultaneously convey the boredom and fear wrought by the pandemic. Indeed, while I’m sure we will be seeing more and more retrospective pieces over time, one thats already defined the genre and set the tone for a lot of lockdown art to come is the musical comedy special ‘Inside’, by Bo Burnham. Filmed entirely in one room and turning it’s attention not to the outside world but to the “much more real” online space, the work is lent poignancy by the fact that many of the experiences the film offers an insight into – the frustration at virtually interacting with family members, the familiar yet somehow empty feeling of becoming disassociated by experiencing all interaction online – are incredibly relatable.

Quite often, Bo is shown watching himself perform the scenes, partly to show his anxiety surrounding being a public figure, and partly to show that the cycle of worrying about how you’re presented through social media – an anxiety that companies from AT&T to Instagram are happy to exploit – is a system he is very much part of. For that reason, while Bo is quite critical of social media’s grip on humanity he never lets his criticisms obscure his empathy, making clear on multiple occasions that there’s a human behind the content and that underneath what is seemingly a shallow social media post there can be nuance and humanity. ‘White Women’s Instagram’ see’s Bo being critical of social media figures, but the bridge of the song see’s the frame widening, as the influencer character being sung about uses the platform to tell a moving personal story of coping through the loss of a loved one, and using anything to try and fill the void. While a song like ‘Welcome to the Internet’ may on the one hand be a zany if menacing embodiment of the all the dystopian and weird aspects of life online, the bridge acknowledges that the perception of having ‘the world in your hands’ can feel liberating, even if that emotional response is very much by design.

You’d be forgiven upon reading that last paragraph, for thinking that Burnham is mocking others but you quickly realise upon watching Inside that most of his jokes are incredibly self-deprecating. One of the funniest moments occurs when Bo reacts to ‘the song you just heard’ before the reaction starts playing and he finds himself reacting to his own reaction and so on, getting increasingly critical of himself as he ends up starting at multiple videos of himself, each trying to validate and seek approval for his actions. Indeed, the opener see’s Bo arrogantly adopting this role of a white saviour who’s going to use his comedy to save the world – “If you wake up in a house that’s full of smoke don’t panic, call me and I’ll tell you a joke“. However, in the same breath our performer wonders if he should even be making light of a serious situation and wondering how that reflects on himself, with closer ‘Goodbye’ showing our his worries about irrelevance or losing control over his mental health, conscious that comedy could not help him in that scenario.

Of course, there is a sense of nihilism that inevitably bleeds into films like this one – Its not too detached from musical epics like The Wall and Tommy where a series of seemingly disconnected scenes coalesce in making the viewer empathize with an archetypal character, if only because we see the most depressing sides of ourselves in them. Similarly, in this film there are moments of harrowingly relatable defeatism – ‘Shit’, ‘All Time Low’ – sections of absolute absurdity laced with political commentary – ‘Bezos’, ‘How the World Works’ – and confessional fourth-wall-breaking moments which make the audience feel directly involved. Many critics have already praised the brutal honesty Bo shows around the mental health in this struggle, including crying on camera which marks a change from a lot of these types of pieces as while the ones I’ve mentioned already provided an insight into the minds of thier creators, they shrouded thier confessionalism behind metaphor and theatricality, while ‘Inside’ opts for a more vulnerable and stripped-back approach.

’30’ has rightly been lauded as a confessional and sharp-witted anthem about getting older in lockdown. This see’s Bo standing in a darkened room, illuminating himself using the torch from his phone, which he rotates around himself as if to represent the passage of earth around the sun – a stunning piece of visual art which also cleverly illuminates the grip of technology over our lives. I’ve seen some criticise this one for sounding like ‘millennial-woes the musical’ but I think that’s unfair. During lockdown, there was a very real sense of the hastening passage of time, and a very deep fear that as the days blurred together you were squandering what time you’ve got left. However old you turned in lockdown, its likely that you felt that ping of insignificance which keeps us awake at night at night, tossing and turning as we lose seconds to watching the minutes chase away the hours. Perhaps my favourite song here for the way the lyrics capture the perplexing state of unreality we find ourselves in, confronted with the apocalyptic scenarios of pandemics and climate change is ‘That Funny Feeling’. Surrounded by light and projections that give the impression of being hurdled in the woods, trying to savour the last remnants of a dying fire, the song exquisitely captures that feeling of being ‘burned-down’ – the exhaustion of being able to perceive the state of the world and yet not being able to find the right words or emotions to meet that. In a time when we’ve all resolved to stay in our homes knowing theres little we can personally do about the chaos outside our windows, this one resonates emotionally more than any other.

On that point about the visual aspects of this special, I feel that needs to be mentioned as its always been one of the aspects which has made his comedy stand out. In Eighth Grade – a film he directed, also about mental health in the presence of social media – many of the shots are illuminated using the light from computers or phones. Here, ‘Facetime With My Mom (Tonight)’ uses the same effect, the phone acting as a kind of spotlight, drawing our attention to the facial expressions. Likewise, rather than simply showing shots of Bo’s phone, ‘Sexting’ see’s Bo himself and the walls of this room he’s in becoming canvasses, partly for portraying what’s on his screen and partly for showing what’s happening in his head. ‘Problematic’ might be one of my least favourite moments owing to the fact that some of the ‘work-out montage’ visuals feel like very well trodden ground, and the song itself might come across as sneering or condescending to someone who hasn’t seen enough of Bo to know that he’s being genuine when he says that he regrets the offensive or crass aspects of his work. That said, the contrast of light with dark in this scene is very well-done and one that I can imagine took a while to perfect. Another aspect that’s particularly intriguing is how keen Bo is to remind the audience that what they are watching is a film. This is not something divorced from peoples lives, this is something he has been working on to get him through a situation we’ve all experienced. As a result, he’s often showed surrounded by his gear, setting up or testing his equipment, or else performing with some of the cameras in full view. This intentionally forces the audience to question the authenticity of the piece. To realise that this film has been planned, scripted and rehearsed, just like the rest of the online world.

Now, you might be thinking at this stage ‘this is all very well Alex, but what does Inside have to do with autism?’ The answer to that question is ‘not much’. Burnham himself is not autistic as far as myself or the wider public are aware. However, firstly, while all my work is from the perspective of an autisitc person its not necessarily all about autism. Secondly, while this may or may not have crossed Burnham’s mind when he was writing the film, its uniquely relatable from a neurodivergent point of view. Very often, autistic people, especially those who struggle with thier mental health, try to find comfort in solitude. One way many of us do this is through music and lights. I particularly find a kind of dim lamp light or coloured lights in a darkened room, accompanied by music helps to stimulate my senses, while also relaxing me. Naturally then, Inside had a similar effect on me. Also, to elaborate on the issue of the mind, in making a piece thats so open and confessional, many people on the spectrum will undoubtedly find comfort in this film, especially considering that so many of us aspire to be this expressive, but feel stifled by neurotypical norms.

The theme of social anxiety is also particularly pertinent. One of the most moving moments in the entire show comes at the climax with the song ‘All Eyes On Me’ where Bo appears to be performing on a figurative stage, his movements projected on to the wall behind him as he’s cast in in blue Light. As the song reaches its peak and the shot pulls back to reveal only a camera where there might be an audience, Bo talks about quitting live performance due to suffering frequent panic attacks on stage, recalling his process of healing and then finally deciding, in January of 2020, to start performing again. We all know, of course, what happened next. Indeed, while we see that Bo is terrified of a closed off and insular online world, represented here by the room he’s trapped inside, we also see him settled into a kind of comfort in avoiding the world, and a realisation that if he steps outside of that he will be stepping back into that role of the flamboyant comedian, which everyone expects of him. In the final moments of the special, the door to the room Bo is trapped in is seen to be slightly ajar. He walks toward the strange light emanating from the outside, opens the door and steps out on to the cold and exposed surface of a stage. He pulls at the door handle of his cage, desperate to get back inside, while a crowd is heard laughing at his futile efforts. As one line sounds:

“look who’s inside again. Went out to look for a reason to hide again. Well, well, buddy, you found it. Now come out with your hands up we’ve got you surrounded”

Bo Burnham, Inside

Personally, I’ve documented in great detail, how much I disliked the loneliness of lockdown. Inside reminded me of that and in that sense its a film I’ll only want to revisit at certain moments in my life. More than that though, the film reminded me of my own deeper anxieties surrounding social interaction, autisitc masking and maintaining an outward image of confidence through all of that. It doesn’t matter how much we value the company or others, or how frightened we are by the disquiet of isolation. Sometimes even the smallest of experiences on the outside can leaving us want to turn and desperately look for a place to hide. The beauty of Inside is that somehow through just one room, a series of vivid lighting effects and a set of cleverly crafted songs, the piece captures both, still managing to be optimistic through an acknowledgment that we wont be trapped inside our anxieties forever. “hey, what can you say we were overdue but it’ll be over soon, you wait”.

A Fear of Disability (Part Three): Combating the Conspiracies

The first two pieces in this series of blogs focused on the origins of the anti-vaccine movement and the majority of the media’s failure to effectively challenge the myth that the MMR jab causes autism. However, while I hope these made for interesting reading, it’s not likely that I’ve convinced anyone hesitant to get a vaccine. Me telling you that vaccines don’t cause autism is unlikely to make a dent in the belief system of anyone who has built up levels of skepticism towards a scientific consensus. Conversely, I’d like to say that if you’re reading this and your a vaccine sceptic I want to say that I don’t think you’re stupid or uneducated. I understand why you are concerned and you’re right to be a questioning person, even if I do think you are wrong in this case. This blog is going to seek to understand where vaccine skepticism comes from and what we can do about those attitudes.

To have this disscussion I want to draw a distinction between those who proliferate and often profit from anti-vaccine rhetoric and those that are somewhat convinced by that rhetoric, or skeptical for other reasons. No one is going to convince Andrew Wakefield or David Icke that they are wrong, namely because they have built up a brand and business around promoting lies. However, the majority of people worried about getting the vaccine are often worth listening to in order to try to understand thier concerns.

Why are people skeptical of vaccines?

A study by Oxford University found that vaccine hesitancy is not confined to particular groups, and was evident across a range of backgrounds. Hesitancy was slightly higher in the young, women, people on low income, and people of colour or black communities, but the size of the associations was small. There is just as likely to be a vaccine sceptic in your office or university classroom as there is in your local working class community. If you ask people why they are taking the jab, you are likely to have them point out to you that the vaccine protects yourself and those around you. I started this series by passionately pointing out that by not getting this vaccine “you are not just failing to protect yourself, you are failing to protect people more vulnerable to this virus than you are” and I stand by that. However, I also pointed to my fear of needles. Indeed, The Oxford study reveals that vaccine sceptics often worry more about thier own situation. They tend to be unaware aware of the public health aspects of the vaccine, don’t consider themselves at risk, worry about side effects, or fear that it’s been developed too quickly and might be unsafe.

Think of what Andrew Wakefield achieved. He weaponised fear of an abstract idea of what autism looks like and in doing so convinced many parents not to give thier child the MMR jab. Meanwhile, the news filled up with images of screaming children having needles injected into thier arms, and images of him in a lab coat talking about how important it is that we ‘listen to parents’. His study was supposedly scientific, but his strategy was deeply emotionally driven. This is why its important not to simply dismiss people skeptical of vaccines as idiots. When asked to imagine someone close to them falling ill to Covid, vaccine-hesitant individuals say that they’re more likely to get vaccinated.

This is why, rather than simply telling people that vaccines are safe, its arguably a lot more effective to show people that vaccines are safe. Look ar the YouGov study into public trust in Covid vaccines – after tracking public attitudes towards vaccination in the UK, France, Germany and the the US they found that willingness to take the vaccine increased in each nation except the US, where it rose by four percentage points between December and early February before dropping slightly. Meanwhile, the perception that the vaccine is safe has grown drastically, rising from a third of the public to over half in France and by about 10 percentage points in the other nations (see graph). This might be down to people seeing thier friends, neighbors and colleagues get the vaccine unharmed, resulting in public confidence growing over a period of time. This has happened in my social circles. In one experience, a friend of a friend who’s often performatively conspiratorial and initially entirely against the vaccine, told me they were worried about not having received thier appointment letter. That’s how effective showing people evidence of its safety can be.

“Vaccine skepticism, it would seem, is linked to a wider crisis of trust. Our data suggest that people who are vaccine hesitant are more likely to be mistrustful of doctors, are more likely to hold conspiracy beliefs, and to have little or no faith in institutions. They can also feel like they are of lower social status compared to others. What we see here is a combination of vulnerability and distrust of those in authority. That manifests itself in defensiveness. Unwilling to be experimented upon by people who don’t care about their well-being, they avoid vaccination”

Daniel Freeman, Covid-19 Hesitancy In The UK

In the case of the myth that vaccines cause autism, one might benefit from meeting autistic people and seeing that we are perfectly capable of leading normal lives. The idea that vaccines cause autism is a dangerous medical misconception but so is the idea that autism is something to be avoided at all costs or that its something worth risking disease for. In fact, just as the current drive for jabs can’t have benefited from delayed lockdowns, misinformation about the virus on social media and the fact that many people have never experienced a public health emergency on this scale, consider the lack of knowledge about autism. Consider the fact that neurodiversity is not taught as part of the school curriculum, nor often represented in popular media, outside of the occasional, often negative portrayal. It is the responsibility of leaders and communicators to give accurate information on all issues surrounding public health, and to help the public understand issues like neurodiversity. An absence of that only sows mistrust and confusion. Simply put, when people don’t have certainty, that lays the groundwork for conspiracies and snake-oil salesmen.

When not to trust ‘the experts’…

Pleas for others to get the vaccine are often accompanied by calls to ‘trust the experts’. However, this misses the point. People often treat the label ‘expert’ as meaning unbiased, but that’s not always true. In the UK, the reason Downing Street press briefings on Covid are always accompanied by scientists is to give the impression of objectivity, even though many of the decisions made during the Covid-pandemic have been motivated by factors outside of public safety.

Let’s look at another pandemic. The HIV epidemic in the 1980s started with a doctor – Robert Gallow – ‘allegedly’ stealing the work of French scientists and claiming he had discovered a new retro-virus, that was liked with a family of cancer (HTLV) viruses – something that the original paper didn’t support. Importantly, this shows how someone can become influential, not necessarily by providing the right answers but by providing wrong answers to people who are desperately looking for them. This highlights that there is an aspect to getting to be an expert that is not knowledge based. Wakefield did not have the knowledge on autism that he should have had but he was charismatic, and willing to present himself as an outsider that was listening to parents. Most experts haven’t made thier career on being communicators. Still, mainstream media naturally has a bias towards people who are good messengers, even if they might not necessarily be the ones who know the most.

In medicine, patients sometimes get treated like they don’t understand thier own symptoms. Historically, this has been the case with autism, with the condition being blamed on mothers, mental health problems or vaccines, with autistic people left out of the conversation. This can fall along racial lines as well. A report from the UK government shows that black people in the UK are more likely to be arrested and less likely to be treated for mental health problems. Likewise, a study of 18 million people from late 2020 points to black people being twice as likely than white people to catch coronavirus, pointing to structural differences between ethnic groups in terms of deprivation, living conditions and low-wage jobs. Despite all of this a scientific advisor to the government said that racism did not explain the increased risk to people in ethnic minorities. Is it any wonder then that some ethnic minority communities are likely to reject expert consensus by being hesitant to take up the vaccine?

Like with Covid, when the HIV epidemic started there were people who doubted its existence. Even some patients were denialists. HIV diagnoses was a death sentence for many people, so if you were infected you were likely to listen to anyone telling you that you were going to live. One ‘expert’ that courted the appeal of denialists was Peter Duesberg, who infamously denied the link between HIV and AIDS. As one article read – “If the public health service and the media remain silent about Duesberg’s article then gay men will have cause to be greatly concerned. This would mean that thier interests are hostile to ours”. People were claiming that the establishment was lying and that Duesberg was being silenced. Indeed, despite the situations being different, both him and Wakefield thrived off selling ‘alternative facts’ to people who were uncertain.

Looking at these examples, I hope you see why saying to vaccine sceptics “well, the experts think…” is counterproductive, because thier beliefs are deeply based in stories and emotional truth. In fact, while emotion might seem like a flimsy factor to base our actions on, what happened next is incredibly inspiring. During the search for a treatment a number of double-blind trials happened on HIV patients where half of the participants were put on a treatment pill and half were put on a placebo. Initially, after they realised what was happening they started sharing out pills, refusing to risk the possibility of anyone getting sicker. Soon enough though, activists started leaning the medical jargon and teaching themselves the science. They set up trials and tests where they determined the rules for clinical experimentation, and people with HIV came forward in huge numbers. By taking matters into thier own hands, they reminded the experts who they ended up collaborating with that they weren’t just looking for abstract answers to abstract questions, but trying to save lives.

“The arguments of aid’s activists have been published in scientific journals. Thier publications have created new pathways for the dissemination of medical information. Thier pressure has caused the prestigious journal’s to release findings faster to the press. Thier voice and vote on review committees have helped determine which studies receive funding…thier arguments have brought about shifts in the balance of power between competing visions of how clinical trials should be conducted. Thier close scrutiny has encouraged basic scientists to move compounds more rapidly into clinical trials, and thier networking has brought different communities of scientists into cooperative relationships with one another, thereby changing patterns of informal communication within science”

Steven Epstein, Impure Science

This is vital. While Andrew Wakefield’s findings were false, part of the way he convinced people was to make parents feel involved. My argument is that in neurodiversity, we can benefit from more autistic doctors and professionals who work to understand the medical aspects of thier condition but also setting the rules for how autism is discussed in medical circles, as well as media and academia, shifting the conversation from a strictly medicalized ‘how do we fix autism’ vision of autism to a social ‘how do we improve the lives of autistic people’ one. It might seem like a small change but under a system which involved autisitc people in decision making, do you think Andrew Wakefield’s paper would have seen the light of day? And that’s one part of the solution – reforming the channels which decide how we as a society view autism is a big part in stopping theories like Wakefield’s from coming up in the first place, just as encouraging people to get the Covid-19 vaccine means a responsible media and a politics that cares for thier interests. If people are confused and don’t trust leaders, people are likely to turn to simple, but wrong answers. If you involve people and make them feel cared about you’re more likely to win trust.

So, how do you change the mind of a vaccine sceptic?

Like I said at the beginning, there is no set way to change the mind of someone who’s hesitant to take the vaccine. I know for a fact though that one thing you shouldn’t do is call them an idiot. As we’ve explored, these are often people who feel mistrusting of thier government, confused and worried. Insulting them is not going to help.

The first thing to realise is that not all unvaccinated people are anti-vaxxers. A survey done in the US found that about 14% of US adults said they would “definitely not” get the vaccine. Many others are in a “movable camp.” Roughly 16% either want to get the vaccine as soon as they can, are waiting to see how the vaccine affects other people before getting it themselves, or will get it if they are required to. Most of the conversations I have had with vaccine hesitant people have focussed on a fear of needles which is something I can definitely relate to, or even factors like social anxiety – a particularly pressing issue in the lives of a lot of younger people, and individuals on the autisitc spectrum.

Despite this, when someone says that they are worried about getting the vaccine, a mental picture forms of exactly the sort of person you’re talking to. It’s often presumed that they are part of a homogenous group of conspiracy theories, who unflinchingly buy into ideas like those proliferated by Wakefield today. However, as we have seen, this is not the case. Many racial minorities in America particularly have families who have experienced actual, proven cases of medical experimentation like the Tuskegee Syphillis Experiment. Others have health issues that they fear might be impacted by the vaccines. Its always helpful when talking to a vaccine hesitant person to find out why.

From there, you can tailor what you say to that person. I made a point of saying in part one that while I am terrified of needles and was anxious to get the vaccine, I was surprised to learn that the jab didn’t hurt, and the whole process was very quick and easy. Likewise, if someone has concerns about authority or a general distrust of government, use that as a basis for a reasonable conversation. Most people have doubts that the government is always working in thier best interest. If you’re trying to convince someone of something as important as getting the vaccine, its vital to build up a level of trust, but also ask questions like “what worry’s you about the vaccine?”, to get the person to evaluate why they are skeptical. Appealing to a persons emotions is also valuable. You can recite as many facts about how the vaccine works as you want but its not going to work because skepticism is primarily emotionally led. Instead, focus on how by getting the vaccine the person is protecting thier friends, family members and communities. Reassure them that the vaccines have been tested and that there’s nothing nefarious in them, without getting overly technical. Vitally, give people time to change thier minds. People don’t like admitting they are wrong and so its important to give people time to think about what you have said and come to a conclusion on thier own.

An Atypical Perspective…

I started this series of blog posts not to degrade vaccine-hesitant people but to find out why Andrew Wakefield was able to convince so so many. A large factor was that he predicated his campaign on falsehood, using his status as a doctor to get his theories into established medical circles, and perform his studies in way’s he should never have been allowed too. He was supported by a largely unquestioning media, who he courted the hysteria and sensationalism of. Most importantly though he made people who had never heard of autism and frankly deserved more support feel listened to. He simultaneously presented himself as an ‘expert’ while using a populist narrative to drive the idea that the medical establishment didn’t care about the children of these parents, and the evidence of long waiting lists for diagnoses, poorly funded and severely limited support systems for autistic children, and lack of information about autism in the public eye shows that – in his selfish aims – he tapped into something real.

Vaccine skepticism, concludes the Oxford study cited earlier, is linked to a wider issue of people feeling vulnerable and having a distrust in authority. They then take comfort in people who tell them that they are right to feel defensive and vulnerable. This is why I emphasise this point about communication. Messaging about vaccines and pandemics should always be accurate and clear, just as messaging about issues like neurodiversity should always be accurate and clear. “Most people can see vaccination as the light at the end of the tunnel, but they are also looking – perfectly reasonably – for information they can trust”.

An important part of this, in the longer term, is going to mean reshaping our institutions to win back the trust of all those sections of society that feel disaffected by them. That’s obviously no easy task but part of this will mean authorities understanding why different groups are mistrustful and working to remedy that not just through messaging but through behaviour. I can only speak for myself but one stride we could take for the autisitc community would be to stop treating our neurological differences as problems, which would do a lot in helping others to understand the condition and treat autism with respect. There are plenty of other forms of marginalization that have led people to question the validity of experts. As the pandemic has made clear, without trust its easy to find ourselves stranded in crises situations, where the easiest thing to do seems to be to trust the people with the easy answers. Many people on the autistic spectrum know that all too well.

A Fear of Disability (part two): media ableism

In part one of this series, I discussed the origins of the modern anti-vaccine movement, particularly focusing on Andrew Wakefield’s now discredited study claiming that vaccines cause autism. This part of the blog post will look at very different media responses, asking why Wakefield was allowed to have his views so widely promoted. Its worth noting that as inaccurate as the study was, and as fraudulent and abusive as its methods ‘might have‘ been, movements against vaccines don’t start because of a study. Most of the people protesting the vaccine didn’t read the paper, and sadly most of the journalists reporting Wakefield’s claims didn’t either – it wasn’t so much the content of the study which mattered to Wakefield and Richard Barr – the lawyer who was paying him – but the existence of the study.

The media still sometimes look to cure autism. Case in point – in 2019 ‘Get Well’ magazine published a cover that read “Reversing autism – reigniting your child’s brain”. Inside were pages of pseudoscientific nonsense on ‘autism recovery’ and how the brain can ‘feel its way back’. This would have probably gone under the radar if it weren’t for Sophie Walker who tweeted the following:

This is not how a healthy media discusses autism. Autistic people have to learn to deal with a society that so often feels rigged against them, only to be confronted with the idea that thier brain need’s ‘ignition’. It says a lot about how we think about neurodivergence that some talk about risking measles or covid as a sensible and necessary alternative to thier child being autistic! Sadly, Get Well didn’t recognize that with a response that could have been written by Wakefield himself: “They want to shut down the debate and deny genuine hope to people who are seeking ways to improve their lives and those of their children”

Part of the reason headlines like these are effective is that outrage is built into thier DNA. For many journalists reporting the vaccine scare as fact, the threat of being seen to ignore a potential risk was too tantalizing. “Child vaccine linked to autism” – that was BBC news. “New evidence links MMR to autism” – The Sun. “MMR Safe? Baloney” – Daily Mail. Everywhere you looked there were news reels showing images of crying children. Either that or it was Wakefield talking about having ‘sufficient anxiety’ about the MMR jab and recommending people get the separate measles vaccine, which he patented. I was growing up in the mid 2000s, and becoming conscious of my autism. I don’t remember much of the news reports but I do remember the images of sharp needles being broadcast and people talking about the vaccine threat as something tangible. This was the same time when autism was widely assumed to be male-only, and society was only beginning to see past the theories developed by Kanner and Asperger. It unnerves me to think I was growing up in a time when some in the media were calling into question part of what defines me as a person!

Vaccine Hysteria…

The influence of Wakefield’s study cannot be understated. Research from Cardiff University undertaken in 2003, point to how most people at the time wrongly believed that doctors and scientists are equally divided over the safety of the MMR vaccine. In effect the media falsely created the impression that the medical establishment was split down the middle in spite of almost all doctors doubting Wakefield’s study. The media outlets who promoted the paper would argue that they gave equal coverage to both sides of the argument and therefore were being balanced. However, this ignores the fact that giving equal credence to two sides of a story is a biased act in itself, as that treats those contrasting view points as equally valid. ‘Impartiality’, insofar as that actually exists, is not the blind reporting of ‘both sides’ but the attempt to use ‘unbiased’ and fair investigation methods as a means of finding ‘the truth’. As Nick Davies explains, thats neutrality, not objectivity:

“Neutrality requires the journalist to become invisible, to refrain deliberately, from expressing the judgements which are essential for journalism. Neutrality requires the packaging of conflicting claims, which is precisely the opposite of truth telling. If two men go to mow a meadow an done comes back and says ‘the job’s done’ and the other cones back and says ‘we never cut a single blade of grass’, neutrality requires the journalist to report a controversy surrounding the state of the meadow, to throw together both men’s claims and shove it out to the world with an implicit sign over the top declaring ‘we don’t know what’s happening – you decide”

Nick Davies, Flat Earth News

This is exactly what happened with Wakefield’s study. Research from the Open University found that the source of the claim that ‘MMR causes autism’ – Andrew Wakefield’s paper – is mentioned in only a quarter of the 561 stories they recorded. Coverage of the controversy compounded fears. “Ministers continue to insist the MMR jab which some doctors have linked to autism is the best way of protecting children” – ITV News, “The government has mounted campaigns to persuade parents” – The Times, “New health fears over big surge in autism” – the Observer. These give both views but they are clearly not unbiased as they play into existing fears of authority and an ignorance of the science which launched the anti vaccine movement. Indeed, the framework here clearly places the burden of proof on the side of those defending the MMR vaccine!

I cannot stress enough how more than Y2K and the Great Moon Hoax of 1835, this is truly an example of media failing in thier commitment to be responsible. 53% of people surveyed in the Cardiff work assumed that because both sides of the debate received equal media coverage, there must be equal evidence. Only 23% of the population were aware that the bulk of evidence favoured supporters of the vaccine. This wasn’t helped by the fact that Wakefield’s study was accompanied by an immediate press conference where he told the world about his ‘bold’ theory.

The media coverage caused lot’s of parents to be concerned and plenty to not give thier child the vaccine. There was also a political aspect to the story – although it wasn’t until later that Wakefield became an unbridled peddler of conspiracy theories, the deeply populist idea that the medical establishment weren’t listening to parents was always a core part of his pitch. Prime Minister Tony Blair came under pressure in parliament to reveal whether his three-year-old son had received the jab. He refused to disclose this. As a result, national take-up of the MMR jab dropped from around 90% in 1998 to less than 80% in 2003. I would remind everyone that had most journalists looked into the source of the funding, Wakefield’s alternative vaccine patent or into the practices of the study itself, they might have arrived at very different conclusions.

Confidence in the MMR vaccine, and indeed other vaccines has never fully recovered. An outbreak of measles among the American-Somali community in Minnesota was caused by doubts about the MMR vaccine. Wakefield had been a visitor to the community seven years earlier, talking to them about the risk of autism. That same year there were large outbreaks in one in four European countries with over 20,000 cases of measles, and 35 lives lost. If it weren’t for Wakefield we could be well on our way to eradicating measles. Sadly, the deeply ableist anti vaccine-movement which is spearheaded by him, continues to risk the lives of children around the world.

Exposing Andrew Wakefield…

While many journalists reported Wakefield’s findings as fact, its important to remember its wasn’t every journalist. Jon Snow gave him a fairly rigorous interview, and some outlets focused more heavily on he fact that the theories weren’t popular with the scientific community. However, only one journalist went to investigative lengths to expose Wakefield’s lies – introducing Brian Deer. He found that the aim was to ‘discover’ a “new syndrome”, intended to justify litigation on behalf of thousands of British families, recruited through media stories. It was also him who found out about Wakefield’s alternative vaccine patent. This led to public uproar in Britain, the retraction of the Lancet report’s conclusions section, and, from July 2007 to May 2010, the longest-ever misconduct hearing by the UK’s General Medical Council.

Wakefield never agreed to an interview with Deer. However, there was a moment where Deer was able to confront him. Wakefield ran away:

More than the many examples of lying, it was Deer who discovered that Barr paid Wakefield with money from the UK legal aid fund: run by the government to give poorer people access to justice. Wakefield charged at the extraordinary rate of £150 an hour. The law in the UK requires doctors to state potential conflicts of interest in thier work – these payments were completely undeclared, despite the fact that Wakefield and his team took £26m of taxpayers’ money trying to prove that MMR caused a new “syndrome” which the doctor had already dubbed ‘autistic enterocolitis’ before he performed the research which purportedly discovered it. Do you see why I view the fact that few journalists were discussing this as strange? The Barr-Wakefield deal was the foundation of a vaccine crisis that would continue to have lasting ramifications, and yet the worlds media barely reported the evidence.

Wakefield understood how much money he could make from the scare he started and sought to exploit that. He falsely denied the existence of an alternative vaccine patent but a peek behind the curtain showed that here was even more than that at play. He had set up a network of companies intended to raise money for numerous schemes including autism testing kits and even a cure for autism which were all set out in confidential documents obtained by Deer. He triggered a moral panic and even before he was struck off the medical register, he planned to make millions from that. I’m thankful that he wasn’t successful in making his ideas mainstream, even if he continues to profit from talks to conspiracy theorists.

Regarding the battery of invasive procedures which the children in the study underwent, this sort of research is governed under international law by the Helsinki Declaration. There is no way any ethics committee or board would have approved a regime of risky operations for what was essentially a trial study, but Wakefield needed that approval for his study to be published. What did he do to get around this? Well, he simply lied, reporting that these procedures had been approved by his hospital! Despite denials, no such approval had ever been given.

In response to Deer’s investigation, Wakefield denied any conflicts of interest, even going so far as to deny that he ever said that MMR jabs cause autism. This was despite the fact that he was at this time continuing to produce reports arguing for his theories from Thoughtful House in Texas – an organisation he set up after refusing to do a larger study into his ideas, got him fired from the Royal Free hospital in 2001. Needless to say throughout the investigation, the former doctor acted like an unrepentant child, refusing to cooperate and denying every accusations all while his supporters hurled slurs.

Its worth pointing out that for as much influence as Wakefield’s theories had, with help from the media, Brian Deer’s theories were just as important, seeing media coverage around the world. In 2004, the prime minister of the UK came forward to make a statement about the importance of getting the MMR jab, the case against the vaccine collapsed relegating anti-vaxxers to a fringe if still far too influential minority. Vaccination levels rebounded. In the US, the academy of pediatrics stated in response to Deer’s work that “numerous studies have refuted Andrew Wakefield’s theory that MMR vaccine is linked to bowel disorders and autism. Every aspect of Dr Wakefield’s theory has been disproven”

An Atypical Perspective…

Wakefield’s success always depended on the fact that he would have a captive audience. That’s why he hosted a press conference on almost immediately after releasing his study. That’s why he fled from Deer rather than being asked difficult questions. he knew that he wouldn’t have medical opinion behind him so he needed ‘public opinion’ to give his idea legitimacy. It was journalism, of a sort, which elevated him to rockstar status and even saw a 2003 film called ‘hear the silence’ being made, where Hugh Bonneville played a heroic Wakefield rebelling against a shadowy cabal of physicians and government agents. However, it’s also journalism which brought him down and exposed the man as a ‘liar and a fraud’, making sure that no attempt to replicate his findings would ever be successful.

This to me highlights the power of public persuasion. The perception of vaccines didn’t just change, the perception of autism did too. If autism is perceived to be something which occurs unnaturally that with that unfortunately comes the question of ‘what do we do about the autism epidemic?’. However, if its something that occurs naturally – which we know to be a fact – then the question should become ‘how can we help whilst also accepting autistic people?’. And just like that, we’re back to the medicalist vs. neurodiversity debate. There are some outlets who are still keen to shift the conversation in the direction of the former. That Get Well cover is far from an isolated incident and there are plenty of cases where an autistic person is reported to have done something wrong with particular regard to thier condition. The media’s responsibility in my view has to be pushing towards dismantling the barriers which cause autisitc people to struggle and debunking the misconceptions about autism which enable people like Wakefield to flourish. There are plenty of independent content creators doing this and I’m happy to add my voice to the conversation. Crucially, to stop history repeating itself we need to adopt a neurodiverse led conception of neurodiversity, into the wider conversation. Journalism presents boundless potential for that.

The third and final blog post in this series will look at combatting conspiracies and debunking myths about autism.

A Fear of Disability (part one): The roots of the anti-vaccine movement

I would like to start this blog by saying that if you’ve not done so already, get your Covid vaccine when the time comes (unless you’ve got some legitimate medical reason not to). My autism of course means I’m very sensitive to certain textures and one of them is needles. I was terrified of having a needle stuck in my arm ahead of the time, to the extent that the nurse had to calm me down. However, if you think this isn’t aiding in your anxiety towards the vaccine, here’s the catch – the jab doesn’t hurt. Like, at all. Despite all the worry its probably the most non-painful vaccine I’ve ever had in my life, which shows that while some anxieties are warranted, others are most certainly not.

This blog post will discuss a very unwarranted and harmful form of vaccine hesitancy indeed. And that is the anti-vaxx movement. While to most reasonable people the fringe mobs protesting the vaccine are ridiculous, as an autistic person I have a particular grudge against the anti-vaccine movement. Anti-vaxxers have not historically constituted a large, vocal or influential minority of the population. That is until one man re-launched the anti-vaccine movement for the 21’st century – Andrew Wakefield. I hesitate to mention his name as any attention given to this person is not deserved and I certainly will not be validating him with the title ‘Doctor’.

Still, its necessary to mention him for the purposes of showing how ableism lurks at the heart of the anti-vaxx movement and stating the point that how we talk about vaccines underlies our attitude towards the vulnerable. Its important to bear in mind that if you don’t want to get the vaccine because of some toxic rumor that you’ve heard online, you are not just failing to protect yourself, you are failing to protect people more vulnerable to this virus than you are. Whatsmore, if you want to get back to normal but aren’t prepared to aid in that by getting your jab, bear in mind that there are people on the spectrum and with other disabilities who have been isolated for over a year due to not being able to access the appropriate support. Even though everyone is offered this vaccine on a voluntary basis, for most it is a uniquely privileged position to even consider not getting the jab. It is for the sake of other peoples safety and wellbeing, as well as yourself, that immunisation is available to you. The vaccine rollout will allow us to live our lives again but as that happens, be thankful to all the people who have got the vaccine so you could resume “normal” life, including those who weren’t so often afforded the privilege of freedom before the pandemic!

With all that in mind, I would like to delve deeper into the origins of the anti-vaxx movement and in doing so examine the myths and rumors about autism which made Wakefield’s views initially appeal to so many. If you’re reading this and worried that you thought “maybe there’s something to what he says” at the time, I’m not angry – when almost the entire media is broadcasting the views of a man who has been certified an expert, I can’t blame anyone for being initially curious. All I’ll say is I hope you know better now, and I hope this blog can teach you some more about attitudes towards autistic people.

Fake Science and ‘Fraud’…

Returning to Wakefield’s now retracted Lancet-published study claiming that the MMR vaccine causes autism, many may see this as a medical faux-pas. However, a look into the circumstances surrounding the study speak of a process that was drenched in misinformation. An investigation from the British General Medical Council found that Wakefield failed to disclose that he had filed a patent for a competing vaccine, 6 months before his study was released. More than that, he was receiving money from a lawyer – Richard Barr – representing parents who believed thier child had been harmed by the jab. He wanted to prove that vaccines damaged children by causing autism but seen as there was no evidence for this, he paid Wakefield to find some. A letter sent from Barr to Wakefield reads “The prime objective is to produce unassailable evidence as to convince a court that the vaccines are dangerous”.

In the first line of the studies findings it says that “Onset of behavioral symptoms was associated by the parents with measles mumps and rubella vaccination in eight of 12 children”. There’s two problems standing out here. One is the very small sample size this is drawing from and the second is the line ‘by the parents’ – anyone can be made to associate anyone with anything if you look hard enough. If you develop a cold you’ll probably try and think of where you were yesterday that could have caused you to be infected. You’re less likely to remember people coughing near you three weeks ago. And this is a common problem in autism material – a lot of autism resources you will find online, especially that which views autism in a negative way, tends to be aimed at distressed parents. That is the case with bloggers who write about how to deal with an autistic child and its also the case for people who try and sell pseudoscientific cures. My argument is that this study weaponized parents uncertainty by getting them to associate the child’s autism with the MMR vaccine as a cover for proper scientific analysis, or investigation.

Lines like “he received a dose of the MMR vaccine…the day after which his mother described a striking deterioration in his behaviour that she did link with the immunization” speak of a deeply opinion led process, based off a preexisting bias towards wanting to ‘blame’ something for the autism. The study also details how long the parents noticed autism symptoms after the jab. Unsurprisingly, it’s days, single weeks and even hours. I daresay that some of those parents were looking for autism in thier children more closely considering the hysteria surrounding Wakefield’s report. I bring this up because when you hear the ‘first symptoms’ of autism being mentioned, bear in mind that its from someone’s perspective and not a way to measure how long someone has had autism or where the autism came from. Typically, signs of autism become noticeable at around twelve to eighteen months. However, if you want to blame external factors for causing autism, playing around with parents perception of time and what they remember in order to get them to blame what is in the case of the MMR vaccine, a coincidental event, can be persuasive. Another parent in the study blames thier child’s autism on an ear infection and you don’t hear that being debated or considered legitimate.

The study even admits at the end that it dosent prove that there is a connection between the MMR jab and autism, but the sheer existence of the study mixed with the speculation that the jabs ‘might’ cause autism was enough for Wakefield. By admitting that he hadn’t claimed to prove anything, he could then speculate wildly. For example, each of the children in the study appeared to have non specific bowel disorders. Wakefield takes this collection of vague disorders and concludes “We have identified a chronic enterocolitis (inflammation of the bowels) in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after the measles mumps and rubella vaccine. Further investigations are needed”. To clarify, these uncertain, deeply speculative theories are his conclusions! If the kids each had different bowel disorders than there wouldn’t be a clear link to the vaccine but if they each had a new, novel bowel disorder, Andrew Wakefield could argue that they were all caused by the same thing. He even went as far as to sack two separate doctors who ruled out colitis in over half of the children before writing in his report that 11 of the 12 children had similar inflammation. In effect, he ignored everyone on his team who disagreed with him and decided by himself to invent a new gut disorder that causes autism!

What the evidence said…

Content Warning: Abuse, Medical Procedures

In investigating Wakefield’s work, the journalist Brian Deer – who obtained the medical records after Wakefield himself tried to sue the journalist, only to have the judge rule that the records were evidence in the case – showed the parent of patient 11 what the study said about their child. In a correspondence with Deer the parent noted that

“The Lancet article indicates that autisitc symptoms started at 15 months, a week after the MMR vaccine, which is completely inaccurate…the bottom line is, if my son is indeed patient 11, then the Lancet article made a false assertion that his symptoms set in immediately after the MMR in service of some attorney’s efforts to prove ‘causation’ that apparently drove this research”

Parent of Patient 11

He wasn’t the only parent who was lied to. For the study to be legally useful there needed to be something of a clear link between autism and the vaccine. According to the medical records, most of the parents never said that thier child starting showing signs of autism within the time period of 14 days after they vaccinated, despite the study claiming that they did. Most of the symptoms either started far too late to be useful in the lawsuit or far too soon. Wakefield changed the allegations of the parents so the paper said what he needed it to say. This is despite his constant assertions that he was ‘listening to the parents’ and representing their interests. Furthermore, all of the children in the study had obviously been diagnosed with autism, right? Well, no, actually. Child seven was never diagnosed with autism. Child 12 had also never been given an autism diagnoses. If this sounds absurd to you, rest assured, I was also shocked to find out that some of the people alleged to be autistic, in a study claiming to show a link between vaccines and autism, weren’t ever given a diagnoses! That said, I hope you can realise the depth of Wakefield’s lies in this in that nearly everything surrounding his study was either fabricated or exaggerated, just so he could make money from the innate ableism of a small group of parents and in doing so spread this prejudice far and wide.

Somehow though, for as angry as all of that makes me, the lies weren’t the most infuriating part of his study. In his efforts to link autism and bowel disorders, each child went through a range of dangerous procedures designed – he told their parents – to find that link. The children spent a week at the hospital during which time they were given laxatives’ and sedated as well as being given colonoscopies, having needles injected between the bones of their spine and having wires run through their head. On the consent hand-out Wakefield provided for parents, none of the risks of any of the procedures are mentioned. As a result, one five year old autistic boy was given a colonoscopy that caused his bowel to be perforated in 12 places during the procedure, resulting in lifelong disabilities that require full time care. Another child’s lumbar puncture went incredibly badly, meaning he had to be rushed to a different hospital for treatment. These children were subjected to incredibly risky and invasive procedures for no reason other than satisfying a now disgraced ex-doctor’s need to appear credible which he needed to sustain a profit motive. If you’re supporting Wakefield you’re not only supporting someone who is ‘in my opinion’ a lying conman, but someone who ‘might have‘ been guilty of child abuse. In another harrowing and creepy story which Wakefield used to tell himself, at his son’s birthday party he lined up all the other kids and offered them five pounds each for samples of their blood, so he could compare the blood of ‘normal’ children with that of those he claimed had ‘autistic enterocolitis’. Let that be testament to this man’s trustworthiness, or lack thereof.

It was all very clever in a sickening sort of way. A group of parents who thought vaccines might cause autism, payed a lawyer to represent them who then payed Wakefield to write those opinions in a study, using the link of ‘enterocolitis’ as a lynchpin to produce the ‘evidence’ the lawyer needed. To reach these findings, Wakefield was prepared to go to extreme and deeply immoral lengths. Perhaps the only thing more vile than that is that his theories still hold sway for a more significant number of people than I care to think on. I will focus on that more in future blog posts but for now, let me introduce the discussion…

A high profile example…

Upon learning that they have an autistic child there a few reactions parents can have – while we hope the condition will be met with acceptance, its likely that there will be a degree of uncertainty that comes with that. Every parent has hopes and ambitions associated with thier child. So upon learning that thier child is different comes uncertainty about thier future, and with that the desire for an explanation for why thier child is this way – something not helped by an unhealthy lack of education about autism, either in the media or in education. Its easy to see how then many could have been convinced by someone offering to explain why autism happens.

Today the anti-vaccination movement weaponizes the lack of public knowledge about infectious diseases and vaccines, combining that with existing fears of imposing governmental powers. A 2016 documentary produced by Wakefield titled ‘Vaxxed: From Cover Up to Catastrophe’ argued that vaccines are a result of a larger government conspiracy to make children ill to sustain a medical-industrial complex. That same year Donald Trump stood on a platform with many other republican party candidates vying to stand in the presidential elections, and stated his view that vaccines caused autism. It’s worth pointing out that his administration presided over an alarming number of measles and mumps outbreaks, driven in part by vaccine hesitancy. This is quite a common trend. Vaccine hesitancy increased after Wakefield’s paper which proves what a powerful tool information, or indeed disinformation, can be in public health.

In 2016, Wakefield was one of four anti-vaccine campaigners who met with Donald Trump. The disgraced doctor turned conspiracy theorist also attended one of his inauguration balls, after he defeated Hillary Clinton in the presidential election. After he entered the White House, Trump is said to have considered appointing another vaccine sceptic, Robert F Kennedy, to head a commission to look into their safety. I am stressing this because vaccine skepticism is often seen as a fringe movement, yet its important to see the idea as having potential to be far more influential and dangerous.

“Despite the fact that his findings were found to be fraudulent, the paper was retracted and that Wakefield was struck-off the medical register for dishonesty, the damage was done. Public confidence in MMR and vaccination has never fully recovered, at least not in developed countries. This was made evident by recent news that the number of measles cases in Europe increased by 400 per cent in 2017, with more than 20,000 cases and 35 needless deaths”

Seth Berkley, Global Alliance for Vaccines and Immunization

Trump’s view might have been driven in part by his business friendship with Bob Wright – former chairman of NBC and founder of ‘Autism Speaks’. Remember what I said about many parents fearing for the future as a result of an autism diagnoses? This is fed into by organizations like Cure Autism Now and Defeat Autism who emphasise the ‘tragedy of disability’. Autism Speaks’ 2015 marketing campaign proudly stated their aim to create a world where “no family has to live with autism” this reinforced to many parents and ASD individuals that eradication of the disorder was the penultimate goal, which set them apart from the many other advocacy organizations. This is a conflict at the heart of disability politics….

An Atypical Perspective…

This discrepancy between people who view autism as something scary to be explained or else cured, and people prepared to accept autism as a positive neurological difference points to the rift at the heart of discussions around the condition: the ‘medicalized’ view that states that autism is an affliction to be treated and cured, and the ‘neurodiversity’ advocates who say that the disabling aspects of autism lie in how society behaves towards us. Many parents were convinced by Wakefield’s deeply medical view of autism, that being that the condition was caused by vaccines. In instilling people with this fear he created a movement that only works to reinforce the factors which cause autistic people to struggle – job market discrimination, inaccessible language, poor mental health funding. He did this, by portraying ASD as a disease and by extension something to be feared. My argument is that as long as this stigma exists you are going to have conspiracy theorists claiming to know what causes autism. If we want to get rid of those ideas we have to get rid of the far tamer yet no less dangerous view that neurodiversity requires and explanation, and deserves to be treated as a problem.

In my next blog post we will look at the media and the role of journalists in discussing autism and vaccines.

A Story of Sensory Chaos (And what I learned)

Longtime readers of this blog may have read my piece on ‘a day of escape’ – a piece of prose in which, using grandiloquent language, I described a trip to a beach and the ruins of a chapel as a chance for me to mentally escape the turmoil wrought by lockdowns and coronavirus. A few weekends ago as I write this, I returned to rhossili bay with my family, partly in the hope of reminding myself of that sensation of feeling the worry’s of the world lift from my shoulders. As an autistic, I get very attached to places and people that I have positive memories of and so trying to replicate those experiences becomes part of my routine as I associate them with my confidence as a person. The opposite can also be true of places and people I have had negative experiences with.

One thing to bear in mind though is how different the situation was this time around. Last time, was a welcome opportunity to escape in the face of apocalyptic boredom. This time we hadn’t been in lockdown for quite a few weeks. In the space of a few weeks I’d retuned to my work routine, eaten inside pubs, browsed shops, been to the cinema and yes, had my first dose of the vaccine. Needless to say, I have enjoyed a return to some form of normality, because as well as being strange its given me a chance to creatively, emotionally and physically stimulate myself. Sitting at home may be less overwhelming but its far less invigorating. However, although I didn’t really notice it at the time, in those weeks when my life returned to normal, something was happening to me mentally.

Background

See, while I love socializing and being around people, I also need an opportunity to wind down and recover from all that sensory stimulation. This is old ground to me and many of my readers so forgive the quick explanations, but to put it simply the social-exhaustion was beginning to set in. It didn’t help that the weather was absolutely boiling (one sensory experience which does bother me is overwhelming heat. On sunny days, people who ‘like’ the heat go to the beach or the swimming pool to ‘cool down’. Autistics find this contradiction strange). As a combination of those factors I was strangely distant for most of the day – neurotypicals tend to mistake this distance as being upset or having something specific on my mind, meaning I need people looking after me. This is rarely the case. Rather, the ‘withdrawals’ are an attempt to recover from people and a pretty good signal that I’d like to be temporarily left alone.

So, you understand I was already slightly overwhelmed. That said, I had a good time regardless – I went swimming in the sea which might, in contrast to sitting in the sun, be one of my favourite sensory experiences, spent time with my family and explored the beach for its shells, markings and shipwrecks. It was, in many respects, a fine day. That was until, something happened which I’ve been thinking about ever since.

We stayed at the beach for a while. The tide was crashing forward further and further, and the last rays of evening were beginning to creep in. in the midst of this, I had this idea about wanting to swim in the cool light of evening as the sun cast its shimmering light on to the water. This was as fulfilling as I expected – mid-evening is my favourite time of day in the same way as autumn is my favourite season, so I spent a while immersed in the waves. Nothing so far had happened to cease my happiness – it was almost therapeutic in a sense, helping me recover from the mild burnout I’d been experiencing all day.

However, you know that feeling where you get out of the sea and location temporarily dosent seem to exist, as you try and adjust to your surroundings and scan the beach for where your family are. Well this is paticulary a problem on Gower Peninsula, especially when the tide is coming in. My family had started moving while I was with them, and as the tide came further and further in they had to keep moving to areas that would’nt yet been touched by the rush of the water. This is the problem – the beach itself is still absolutely enormous length wise when the tide is almost in, streching for a long distance. Being in the water, I’d lost my sense of time. Now, back on the beach I’d lost the people I was with. If I had to use one word to describe my feelings in this moment that would be ‘disorientated’. That’s important to bear in mind.

What Happened Next

After wandering around the area where I thought my family would be, I saw no sign of them – it later turned out that they were still there but whether it was just my confusion or the fact that they were just too far away, I couldn’t see them and they couldn’t see me. Something else you should know about the beach in question is that its separated from the seaside area by a mountain. The only way down or up is via steep, winding steps. Specifically, steep winding steps that I climbed in nothing other than swimming trunks. As you can imagine I was met with many strange looks. All the while, my worry and dislocation was reaching astronomical heights. I didn’t know what I’d do when I reached the top of these steps. I guess I had a vague hope that I might find my family somewhere in the mountain areas. Someone jokingly asked me if I’d lost a bucket and a spade. I regretfully snapped back in a shouted tone.

In the time following, I stumbled around the seaside area, receiving yet more strange looks, still in swimming trucks. I was visibly quite scared and overwhelmed, reacting to every suddenly amplified noise – the roar of cars leaving a car park, the piercing squawk of a bird, the bustle from a nearby café closing custom for the day. The height from the seaside area to the beach now seemed more dizzying, the setting sun more dazzling. It was getting noticeably colder, and I could feel that I was still wet, all made more poignant by the emotional background of having lost the people I came here with, having no means of contacting them, and not knowing what I was going to do.

There is a gate into the mountains which strech the length of the beach, and into the sea, forming the ‘worms head’- I frantically fumble with the lock for a long time. Looking out into the road ahead, I see no sign of anyone I recognize. Then everything happened very quickly – if you’ve never had a full scale ‘autisitc meltdown’ you can’t know what its like. The best way I can describe it is the sheer overwhelming quality of everything, from your emotions to the heightened sensory environment your in hits you, and you become unable to do anything in response. “FUCKING HELL!” I scream, bashing at the gate before processing to sit down, noticeably very upset and stimming by rocking back and forth and scratching at my skin. I hadn’t experienced an autisitc meltdown on this scale for years – I guess I kind of presumed that I wasn’t going to have them anymore. Its not any more bearable than the last time.

While all of this was going on my dad, obviously incredibly worried about the fact that the last time he saw me was going into the sea, was on the phone to the lifeguard service. I obviously didn’t hear this but from what I’m told the person on the other side of the phone needed to calm my dad down while they enquired about getting a boat ready to come looking for me. That’s one of the most unnerving parts of this story to me – as it turns out, there was not a boat sent out but the fact that there would have been give or take five minutes is incompressible and perplexing to me.

Back to me having a meltdown. Luckily, in the sea of people wondering what was going on, were two people who recognized exactly what was happening the moment they saw me. I didn’t think to ask how but needless to say they were successful in calming me down by talking to me, giving me a jacket to wear, and helping me find my dad’s car, which they had to break into by forcing the window down. Finding the car was not an easy task – I wouldn’t have been able to remember basic directions had someone had the bad sense to ask me for them in that moment. The only coherent descriptor of my dad’s car a had in that moment was ‘red’. Thankfully, I was in a fine enough frame of mind by this time to recognize the car the minute we found where the vehicle was parked. “I hope this is the right one because if its not I’ve just broken into someone’s car” one of the people helping me joked. Significantly calmer but still worried and suffering from the burned-out after effects of meltdown, I explained that I was autisitc to which they said that indicated that they’d noticed. Staying by the car that I was sat in, they phoned the same helpline that my dad had phoned five minutes earlier. Not long afterwards, I was located and the issue was settled.

What We Can Learn

In retelling this story, my mind keeps floating back to the person who mocked me that I again, regret biting back at and the people who eventually helped me. I find an interesting topic of disscussion is how we look upon people who may be perceived to be acting in a strange way. Whether that’s looking disorientated, looking visibly panicked or distressed, there’s a number of reactions. One is just to ignore someone and to be fair thats probably a common reaction, but how many times have you looked upon someone acting in a ‘strange’ way and presumed there must be something wrong with them for thier outward display of whatever’s going through our head. I don’t necessarily blame you if you’ve head that reaction – we tend to judge people by what we can see and hear and in public life there’s a set of criteria about how you should express emotion. Rarely is there a consideration of exactly what a person might be going through, how some people struggle to meet those social expectations of ‘masking’ thier inner thoughts and feelings, or even what kind of day a person might be having.

No one knows this better than autisitc people. With the emotional and physical sensitivity, as well as the social expectation that we need to hide that sensitivity lest we be perceived as ‘weird’ for transgressions of what’s considered ‘acceptable’, its easy for us to have those moments when we just can’t mask anymore. And its not always on the level I experienced at Rhossili Bay. It might just be an act of ‘stimming’, appearing noticeably emotional, or even one of us talking about how we’re feeling in a way that might be called ‘oversharing’. Meltdowns are often conflated with temper tantrums as a way of delegitimizing the experience. However, there was nothing attention seeking about what happened to me. Any attention I did get was the wrong sort and when I finally got some positive attention that was to calm me down from a point of panic and desperation. On that point, I think its worth stressing that not everyone can help when they see someone outwardly expressing themselves. Sometimes to try and help is the wrong response and I count myself incredibly lucky that there were two people who knew how to respond properly when they saw me. I don’t necessarily feel that everyone is obliged to help , simply that more people were considerate and thoughtful when it comes to seeing people experience intense emotions. If we could do that, we could make this a far more accepting world for autisitcs, and others.

Why I Write – A reflection on a year of Atypical Perspectives

“I had the lonely child’s habit of making up stories and holding conversations with imaginary persons, and I think from the very start my literary ambitions were mixed up with the feeling of being isolated and undervalued. I knew that I had a facility with words and a power of facing unpleasant facts, and I felt that this created a sort of private world in which I could get my own back for my failure in everyday life.”

George Orwell, Why I Write

Roughly a year ago I published my first blog post on Atypical Perspectives.

In that blog I talked about ‘making connections’. How as an autistic person I tend to see how seemingly unrelated factors in life like my passion for honesty in journalism, with my aspirations to try and be constantly honest about my abilities. That making connections idea has underpinned all of my work since – even my last blog post was an attempt to draw a comparison between our emotional instincts and our ‘logical’ policy decisions.

Much of my work has focussed on trying to make people understand and care about the politics of disability and show how it effects our day to day lives. The ‘grief’ that comes from a distinctly human response to pandemics and ecological issues, telling us that understanding what our decisions do to people emotionally matters in how we shape our systems and institutions. The obsession with ‘normal’ underpinning the devaluing of disability in aspects of medical policy, and the routine assessment of autistics in order to determine how well we fit into society and how deserving of support as a result. Even my love of music, my confidence, and my issues with mental health are related in the sense that each is influenced by the other.

If you’ve read one of my blog posts you might get a snapshot of me as a person, or of my views on my autism, and even if you read all of them you’ll still only have the vague sketches of me, based on the ‘personal brand’ I’ve cultivated through this blog. I have no qualms with telling people that I started this blog as a means of giving me something to commit to during the pandemic, at a time when my mental health was at a detestably low point. However, over the course of a year its grown into something more than that. A lot of the stuff I’ve written here has been stuff thats been nestling at the back of my mind for a very long time indeed, but that I didn’t know how to articulate. On a base level, talking about my issues with needs assessments, my problem with terms like ‘retard’ or ‘high functioning’ and even my discomfort with the original name of my condition – ‘Asperger Syndrome’, is almost cathartic. I surprised myself with how much I needed to get some of this stuff out of my mind and on to a page.

However, its much more than that – its me trying to get to grips with what the philosophy of ‘normal’ does. Not to sound incredibly cliché, but if you’ve ever been perceived as ‘different’ or ‘weird’ and felt that impact you throughout your life – through applying for a job, through your social interactions, through ways of looking at the world feeling out of sync with ‘the way things are’, I can relate. Indeed, if you have gained greater understanding of how all this stuff is connected and how the use of phrases like ‘abnormal’ of ‘strange’ are indicative of an economic and political reality that rarely welcomes diversity in either identity or in our analysis of social problems, me too. I think its a common misconception that writers have everything in thier head before we start writing: in reality we just have some hastily scrawled observations and an ability to improvise.

I won’t pretend I’m not harsh on myself as a writer – generally, when I’m writing I tend to go through a process of thinking my next blog post is going to be brilliant, thinking its going to be terrible while writing and then realizing at the last minute that its actually okay. Even then, I look back on some articles in an embarrassed way – I stand by a lot of what I said in my blogs on ‘canceling’, the history of autism and ‘the atomic theory of communication’ but theres parts of them that are confused, where I’m not sure what argument I was making or why I’ve put things in the way I have. And while I know that all of my work marks part of my progression as a writer, there’s another side of me that naively believes that perfection is even possible. This is despite the fact that ‘perfection’ is a flawed concept and I know as someone who loves to analyze music and film, that the best pieces have flaws which make up part of thier identity and character. After all, you can’t have a work with the stated intention of relating to people on a human level, and not have that work be as flawed as you and the people your speaking to are.

Like a trap, we’re back to this. The idea that as humans we can have ‘perfect’, we can have ‘normal’ and we can have people and art without any flaws is a toxic one. Whether its in beauty, art or work it creates an artificial standard that’s impossible to achieve, and forces many autistic people to burden themselves with the promise that if they work hard enough they can reach the plain of neurotypical acceptance. At an individual level, if you take one thing from any of my blogs I want it to be that your flaws, your imperfections, aren’t wrong. They are a vital part of being human, of being part of a world that requires all kinds of minds in order to function. That’s not to say you shouldn’t ever try and work over your issues – I have resolved many of the problems with my writing and its all the better for that. However, rather than dread or resent those aspects of us which are called ‘odd’ or ‘different’, we should aim to understand them, so they can be embraced or worked on.

In that sense, I would now like to stop publishing as often as I do. Like I said, I started Atypical Perspectives as a means of coping through lockdown, and so a commitment of one blog every Friday made sense for the circumstances. However, its not a commitment that makes sense anymore and is only going to leave me emotionally drained and burned out. After all, the quality of my work is not going to be determined by how much I do but how I do that work. That’s why I’m not enforcing any set timescale for my blog posts anymore. They won’t become too infrequent but I will not create an ideal vision of what I should be doing and then try and have everything in my life bend to that vision. That would make me almost as bad as the practices I deride.

If you’ve empathized or related to any of my blog posts over the past year, then thank you. I hope they have aided you in finding peace in these difficult times and defying the demands of normality to chart a course that is your own – one that is perfectly and unashamedly ‘atypical’.

Radical Kindness: reimagining support

Lots of talk lately has focussed on embedding kindness into public services; that is to say, making systems for accessing benefits or work accessible to people, starting your interaction with people in desperate situations through the way you speak to and interact with them. Kindness can be something as simple as taking the process of applying for benefits from being one of long forms and complicated words to being one of disscussion between someone who needs help, and a specialist able to understand what the needs are of the person in front of them, although I would add that larger change is required, not just individual ‘disruption’.

The systems we set up relating to disability are perhaps a prime example of how we approach kindness. No one goes into public policy with the stated intention of being unkind, but this relates to how we measure achievement and results. There’s the ‘rational’ measurement of public policy – the concept that everything can be reduced to a scientific ‘facts and numbers’ approach, which follows very conventional ways of doing things. Then there’s the ’emotional’ measurement – this talks about individual wellbeing, relationships, trust, hope. I’ve talked a lot about the tyranny of standard practice on this blog – the tendency to pathologize autism and treat it as a curable curse, measured in ‘severity’ by vague ideas of independence. Its empathy and compassion for autists that has started to liberate from the tyranny of ‘normal’. However, the so called common sense approach persists in autism-politics and other areas.

Some Background…

Many people living with disabilities in the UK for example have had to go through the process of applying for PIP – an overhall of the old system in which a medical recognition of your condition or impairment entitled you to certain benefits. When I did my PIP form, I found the questions to be weirdly vague asking about topics such as ‘nervousness’ and ‘feeling uncertain’. Remember, I was obviously trying to apply to receive Personal Independence Payment. This had the effect of making me almost obsessively pour every negative detail on to the form in the hope that something I said met the criteria. The interview stage was more conversational than expected but not in a good way. On the issue of getting to uni, I was presented with a lot of hypothetical questions aimed at testing my independence: “what would you do if you couldn’t get a lift to the train station?”, “what would you do if the train was cancelled?”, “what would you do if you got the wrong train?”. These are all things I have encountered and oddly enough, overcome but this is nonsense questioning – just because someone might find some areas of life easy, doesn’t mean they wont find other areas challenging. Honing in on a set few areas to see if a person is entitled to long term support is the logical equivalent of making a judgment about someone’s math skills based on thier reading and writing.

When talking about a topic like this, politics is almost impossible to ignore. Of the PIP decisions appealed in court, about 70% of such appeals go in favour of the people who bring them. The most recent controversy in a seemingly never ending list, circled around the Department For Work and Pensions phoning people appealing the decision to deny them benefits, and asking them to decide on the spot whether they want to accept a sum of money lower than that which they’re entitled to. Despite the scheme being set up specifically to stop money being spent on false claims, this is clearly very costly. I became engaged in politics around 2010 when the prevailing narrative was one of schemers and scroungers, “when you get home from work and see your neighbor with his curtains closed” narratives, used to justify the austerity politics of the Tory government. This happened against a background of my dad being unable to work, living in an apartment with my younger sisters. Talking with local people over the course of a few years meant I quickly learned about the different barriers; poor mental health provision, lack of access to technology, bereavement, childcare. Given my struggles with social interaction and anxiety it was always very easy to see how I could end up in a similar situation; among those looked down on.

I think kindness can be both a positive and negative way of talking about how to reform this; on the one hand if we are to change the way we interact with and talk about people we need inherently kinder systems in place. On the other, we need to go beyond kindness and empower people to shape thier work and personal lives in ways that are in defiance – or, to be technical – unkind to those who are not kind to them. Let’s continue to look at this through the lens of autism and disability.

The Problem of Unkindness….

The reason I started this blog by remarking on my experience with the benefit system and being around people in desperate situations is because I think its a perfect example of how the ‘unkind’, target led, punitive approach to public services has failed. The response to Coronavirus has demonstrated the ability to act differently. In the early days of the pandemic there were efforts to make hotel spaces and bedsits available to get homeless people off the streets, and mutual aid groups sprung up around the country giving people supplies and personal support – unfortunately, these have only really been understood up to this point as short term responses to the crisis. Streets are again filling up with homeless people and mutual aid groups have suffered from lost momentum and lack of long term funding. Rather than simply asking people to be kind, radical kindness demands that we identify specifically what areas of life are unkind; risk of homelessness, benefit systems built on assessments and sanctioning, long waiting list for mental health, and working to reshape our societies and relationships along significantly ‘kinder’ lines.

My needs assessments being unkind does not relate to the attitude of the assessor – for what its worth he was alright – but that it was a tick bock excersise based on a series of indicators aimed at deciding whether I’m ‘autistic enough’ and used to determine how much support I could receive. That, alongside the insidious factor that the system is designed to be punitive. As Charlotte Waite from mental health and social change charity platfform states:

“We have a landscape of services where accountability is prioritized over learning in measuring outcomes. The current system offers an overly simplistic way of assessing the work of people who implement public policy by performance-measuring them against quantitative targets. Naturally, wanting to do well, people are driven to hit their targets. And so begins a dance between service and commissioner, where each knows the data is painting a picture more about justifying the existence of the service than making the difference it was intended to make when it was designed”

Charlotte Waite, Kindness in Public Services

At this point people will likely point to the problem of resources, and how we allocate them, and I won’t attempt to answer those questions here except to say that a ‘kinder’ approach to politics, to services, to public life of course involves assessing things on that massive level of how we allocate resources as a means to make our support systems more tailored and able to meet peoples need. However, I often find the way we talk about resources creates an us and them mentality between the people who ‘have’ the resources and service users, who need to live up to the measurements we set to receive support. My argument is that human relationships and the way we think about the ‘helper/helped’ relationship plays an important role in creating kinder systems of support.

A practical alternative?…

I realise an idea as sentimental as ‘kindness’ might be a tough sell for some people, so lets talk a little about the practicalities of the idea. One of the main arguments for the ‘rational’, numbers based approach to doling out support is that it – in principle – ensures fairness, by making sure everyone is assessed equally and subject to the same criteria. It can be verified and provides for fact checking. On that, one of the criticisms of the emotional metric is that its quite sentimental, populist and can’t be measured. Paul Bloom in the affectionately titled Against Empathy argues that it is precisely the role of the state to rise above the challenges and complexity of individual emotion and to instead be structured through a clear framework of rights and responsibilities.

However, this argument doesn’t work when you consider that not everyone has exactly the same needs. Don’t get me wrong everyone deserves to be afforded equal levels of dignity and respect, and with a financial benefit like PIP theres only so much flexibility you can have. However, wider needs assessments relating to precisely what support people receive demands that individual needs are understood and accounted for. Proper autism support does not come from treating every autistic person as if they are the same – some autistic people suffer with chronic mental health problems, some are born into poorer families than others, some are diagnosed and end up receiving thier assessment earlier or later in life than others. How on earth can you treat all these different situations as requiring the same response or the same type of support? This is precisely the opposite of Bloom’s argument – having a system of inflexible rules and ‘standard practice’ dosen’t make sure things are fair but perpetuates the inequalities that already exist.

Whatsmore, to imply that you’ve got the messiness of emotions as one factor and then the sensible level-headed nature of public policy as another is deeply flawed. So much of our public policy and discourse is based on emotion and ideology. Like I said, the discourse surrounding the reason for introducing systems like PIP was that we as a country were too charitable, and that we needed to punish the undeserving. Many autisitc people live in community housing with a few carers and perhaps five or six other autistic people. This is despite the fact that, for many, moving into a care home is recognized as a distressing transition. It comes about because of the recognition of vulnerability, frequently coincides with the death of a parent, often involves moving from the family home at the same time as becoming
used to loss of other sorts – of capability and capacity, of freedom, and of individual autonomy. These examples show how separating emotion and public policy is difficult if not impossible. Rather than trying to sperate them, I argue that we should be trying to understand precisely what emotions motivate our policy decisions and what our decisions do to people on the inside. Not only will that help motivate us to kindness, but will be a kind act in itself.

How precisely do we do that though? You can’t exactly measure kindness, right? Well, this narrative too is quite over simplistic. The argument feels
logical – the rational world of measurement cannot fully meet the emotional world of subjective experience, and no one has yet come up with a way of quantifying emotion down to a specific enough level. However, we measure emotion all the time. Social media has practically built an entire industry off understanding and manipulating how people feel.

“Official statistics measure not just the reported crime rate but also the perception of crime in a neighbourhood, the latter having a
stronger correlation with individual wellbeing. We measure life satisfaction and put great weight on programmes that have proven impact on participants’ satisfaction with their own lives, despite
the fact that objectively we value different things. We measure subjective views on the quality of work, of neighborhoods, of public services, as well as the objective ‘truth’ about these aspects of our lives. So it is not that we cannot measure kindness. It is that we choose not to measure kindness as an official measure of how we are doing as a society”

Kindness, emotions and relationships: The blind spot in public policy

Read the last two sentences again. “It is not that we cannot measure kindness, it is that we choose not to measure kindness as an official measure of how we are doing as a society”. What if we did? If we measured how people feel about thier housing, about thier disability benefit, about thier mental health, what conclusions could we reach? Following that, how would we use that info to enact policy decisions that improve peoples wellbeing and psychological safety? No one is suggesting we abandon statistics and numbers as a useful way of holding the powerful to account, or gauging how society is functioning, or that we allow our emotions to take hold of us and guide our every decision, simply that we stop looking at the two as entirely separate.

An Atypical Perspective

After a year of lockdowns, there is widespread recognition that society needs to change. Ideas like remote working, mutual aid and the protection of vulnerable groups present great opportunities. We also know that huge sections of society feel disenfranchised after losing thier livelihoods, feeling isolated and cut off from society, and not receiving the support they need to get through this crisis in a healthy way. We are tired, we are missing our friends, and we have a hope that we’ll do better in our personal commitments when lockdown ends. Our beliefs and actions are shaped by our emotions – our history, our expectations, our sense of agency – perhaps more than they are by logic and reason. And at times of crisis, our need for a kind response from our politicians and institutions is powerful.

The response needs to be substantial and real. We can’t just rely on individual acts of charity to ensure the wellbeing of our society. Kindness is radical. At its best it demands a change in the relationships between people and those in authority. If those most affected by Covid are not involved in how decisions are made moving forward, yet more trust in the systems we rely on will be lost. We need a new social settlement that realises the importance of emotion and makes sure that decisions, and leadership are rooted in an understanding of how people feel. Only through this, can we inspire people to be better after the pandemic, and achieve lasting change in our communities.

Understanding My Senses: repetition and ‘stimming’

As I write, I am fidgeting with a bracelet. A pair of headphones snakes from my phone to my ears which i cant resist the urge to strech and tie into knots even if that turns listening to music into a more expensive hobby than it already is. Occasionally, I’ll read something interesting that I can use for this blog post, to which I might react with excitable movements or else stare into space if I’m confused by what I’ve found out. I’m also known to rock back and forth when listening to music, or feeling anxious. Anyone watching me in these moments might think I’m acting strange.

What they might not understand is how all those behaviours, to me at least are a reaction to something. They are how I process change and the world around me. I’m not sure exactly why these behaviors help me do that. They just come naturally. Stimming helps me feel grounded when I’m overwhelmed but its also a way I can express my joy, fascination or sadness. The world is louder now, which I like, actually. Having somewhere to go, things to observe, hear and experience on a day to day basis makes me feel intellectually and physically stimulated, even if I do sometimes get overwhelmed. I feel that sometimes people put autisitc people in a box and say that because some of us don’t react well to loud noises or crowds we don’t ever want to be in environments where there is a possibility of loud noises or crowds. On the contrary, if you say you’re an extrovert and say you like to be out and about, your occasional quietness and withdrawn nature might be seen as strange or uncharacteristic. This is despite the fact that humans do not fit neatly into boxes, not least autisitc people.

A shift in the way we see repetitive behaviours as a society is entirely necessary. They contain not only ‘stims’ like rocking back and forth but routines, and special interests like a fixation on music and writing, as is the case with me. Traditionally neuro-scientists like Leo Kanner have viewed them as something to eliminate. However, ideas about repetitive behaviours and what purpose they serve has changed, as ideas about autistic people have progressed.

Interpreting Repetition…

Leo Kanner and Hans Asperger, who originated modern thought on autism even if thier ideas are incredibly outdated and wrong, both saw ‘stimming’ as attempts by autisitc people to shut out the world around them. In the wake of these ideas sprung up a whole subset of pseudo-therapy aimed at reconditioning autistic people. Tactics used included electric shocks and physical restraint, aimed at stopping autisitc people from behaving in ways that were perceived as disruptive and strange. This still goes on to an extent – human rights law prevents the use of physical torture but there are still ‘therapies’ which some children are made to undergo, aimed at eradicating certain character traits or stopping them from being sensitive to certain sounds, textures and atmospheres. If this sounds like social conditioning its because these practices literally emerged out of academic theories which believed that autisitc people should be cured, or else made to ‘fit in’.

Despite this, as anyone who’s ever had a child or younger sibling should know, erratic body movements and repetition are an important part of development as children learn to interact with the world around them. Now, as people learn to better respond to and understand thier environments, thier actions become more purpose based and goal oriented. While I’m cautious of using comparisons to children as a way of describing autism, what if actions like stimming and routines are autistic peoples attempt to make sense of a world that so often seems overwhelming on both a sensory and emotional level? If, for the sake of argument, we assume this to be true, then the entire argument that these behaviours are a symptom of a larger problem with autistic people, falls apart. You can’t on the one hand say that autisitc people should adjust better to thier environment, and then castigate them for thier attempts to do just that.

In fact, a 2014 study appeared to point in this direction. It found that both autisitc and neurotypical children,  continue to engage in repetitive behaviors, such as fiddling with objects, as they grow. People with autism just display more of these behaviors, as well as a greater variety. The aphorism that ‘everyone is a little bit autisitc’ is an annoying one, as well as not being true. However, it is fair to say that we can learn a lot from observing behaviours which appear strange and asking what purpose they serve for the individual, rather than making rash judgements. All this informs how we treat those we perceive as ‘different’.

Understanding ‘Stimming’..

As well as playing important functions during development, stimming helps autisitc people in a number of ways. Many of us stim as a way of coping with overwhelming sensations or emotions. It can also serve as a way of communicating those thoughts and feelings. Psychologist Steven Kapp who studies self-stimulatory behaviour has said that while something like scratching yourself can represent anxiousness, hand flapping is usually a sign of happiness. He sees stims as an outlet for “uncontainable emotion”, not as something worth repressing. And that’s the other reason for repetitive behaviors like these – they feel really good.

This is a point highlighted excellently by neurodivergent blogger Julia Bascom on her piece on how uniquely autisitc body movements as well as special interests and routines are all part of the autistic attempt to make meaning out of life, and not something to be pitied.

“Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day”

Julia Bascom

I can personally relate to this -obviously, Bascom is speaking in very general terms. I personally don’t regard the multiples of seven as beautiful (although speaking as someone who has to have thier watch with them at all times, the multiples of five have something going for them) and that’s okay. Personally, I pity anyone who can’t have a song speak to them on such a deep and powerful level that listening in public requires restraint. I pity anyone who can’t pour thier soul so much into a subject that they want to find out everything it be that politics, journalism or philosophy. My emotions are somewhat volatile so a small thing can make me sad, but a small thing can make me happy. Given that I’m ‘always on’, something as tiny as a change in my environment, a smell, a taste, a sound, a word from someone, can alter my mood exponentially. Repetitive behaviours are a key part of the way I regulate that.

Despite this, I have read many comments written by neurotypical parents desperately trying to stop their child from stimming in an attempt tp make them ‘normal’. I quite regularly receive strange looks from people on train platforms for my inability to stop pacing up and down as I’m waiting. While I get that autisitc traits are not widely understood within society, I have tried to adjust my own mindset to be less presumptuous when I see anyone doing anything that could be perceived as ‘strange’. This highlights how empathy is key to understanding repetitious and obsessive behaviours. I might not relate to some autistic people love of maths and not all forms of ‘stimming’ come naturally to me, but that dosent mean I don’t understand these as autisitc peoples ability to make sense of the world and shape it to thier needs.

“It takes a million different forms. A boy pacing by himself, flapping and humming and laughing. An “interest” or obsessions that is “age appropriate”—or maybe one that is not. A shake of the fingers in front of the eyes, a monologue, an echoed phrase. All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy”

Julia Bascom

An Atypical perspective….

To me this is about how the world sees happiness, and what happiness is in reality. I think we create images of what happiness looks like that we then try and impose on other people with the assumption that everything that makes us happy, must make other people happy. This is despite the fact that all sorts of happiness exist – the type autisitc people are experiencing when they stim, or listen to thier favourite song even if they know all the notes or read about a subject thier passionate about deep into the night is a sort of reserved, private kind that makes everything else seem insignificant in that moment. Rather than resenting these behaviours or treating them as abnormal or not appropriate to ones age, we as a society should see them as an aspect of individuality that the majority might never quite ‘relate to’, but can emphasise with and understand. By taking a more open minded approach to peoples behaviours, we will improve our understanding and respect for people different from us, as a whole.

What is Ableism? The issue with being ‘normal’

Lately, I’ve talked a lot about ableism and the devaluing of autistic peoples lives relative to neurotypicals, however I haven’t had much of a chance to examine why this is the case or where that comes from. For my last blog before I take a quick break over Easter, I would like to look at this idea of being ‘normal’, who decides what the term means and what its for. We tend to see the term normal as interchangeable with usual or expected, without considering who the term benefits and its relationship to not-normal. I hope this article gets you to think and surprises you, just like researching this idea surprised me .

Perhaps you can relate to this ostracism from ideas of normality – if you feel awkward in social situations, obsess over specific interests, or have a short attention span in certain situations, you might have been considered not-normal or even considered yourself in this way, relative to the other people around you. I know I have certainly experienced this when sat in meetings and other formal environments. None of these are uniquely autistic traits by the way, although they might be more present or grouped together in autistic people. That is why the concept of ‘neurodiversity’ is vital. It rejects the idea that people with traits perceived to be outside of the norm are somehow defective or ill and in need of education.

“The sickness is with a society which attaches a stigma to people unless their brains are wired in a way considered “normal” — hence the term “neurotypical.” If you’re neurodivergent, the neurotypical demand to be “normal” can contaminate every aspect of your life”

Matthew Rozsa, how the neurodivergent are mocked for being different

That last point about education is one I want to stress. Its common for our neurotypical peers and even friends to treat us like clients. This is usually done in good faith but comments like “your terrible at eye contact” or “your so awkward” or more often than not “get outside of your comfort zone” are usually unhelpful, not to mention detrimental to autistic peoples sense of self-worth. They also have the effect of drawing a line between conceptions of how you should behave, and behaviours that are seen as strange or unnatural.

Normal is seen as the apex of perfection that people strive to achieve. Regardless of whether you have a diagnosis of autism or the like, many people belabor under the descriptions of ‘weird’ or ‘strange’ which force them to strive for a constantly out of reach idea of normality, either by hiding thier traits or doing things to compensate for thier perceived lack of normality. I would argue that this is the wrong approach. We do not owe it to the privileged to change; they owe us thier understanding and empathy.

Attitudes towards disability can be flawed…

Part of the reason why having a child with an impairment or with autism is often seen as such a huge, earth-shattering deal in families is the interruption in the idea of “sameness” that it causes. Disability is often understood as some form of wrongness. No one, except possibly people diagnosed with autism, expects to have an autisitc child, so when they find out they have, that leads to the idea that they’ve got the wrong child – i.e something other than what was anticipated. Of course, with that perception comes the predictions of thinking your child may not experience the same level of achievement in life as a neurotypical person, however grounded in reality those predictions are. In these cases, the autism or the characteristics seen as a disability become salient, overwhelming the child’s other characteristics.

This idea disability being an interruption to sameness, is at the heart at the frequently ableist concept of the existence of “normal” and therefore “abnormal” or “subnomral”. Studies into the families of people labeled with disabilities were quite revealing and surprising to even me. One study found that many parents in the UK were frustrated by medical labels and diagnoses, and felt that ‘disability’ was something that had been thrust upon thier child to alienate them from so called ‘normal’ society. Equally, a US study conducted on parents of children living with disabilities found that most had grown up with the very medicalized view of disability as a personal weakness to be avoided and caused by the mothers poor choices. However this view was strongly challenged by getting to know and living with thier children in reality. What this shows to me is that a lot of perceptions of autism etc. are built of preconcieved ideas of what these conditions might look like. We don’t handle the idea that humans are diverse and that “if you’ve met one person with autism, you’ve met one person with autism” very well, and so we easily fall for scare stories, pity narratives and simple explanations of autism as meaning ‘broken’.

I don’t usually look at this from a parents point of view, mainly because so much of autism literature focuses on parents and children already. That said, it is a useful way of understanding the different ways of looking at disability, from the point of view of the onlooker.

For example, other terms for the ‘medical model’ are the ‘tragedy model’ or the ‘charity model’. At its most core elements, it considers autism to be something that needs to be fixed, either through finding a cure or through forcing that person to try and fit in to normal society, whatever that might be. This leads to the assumption that they are somehow a burden, which in turn increases stigma. With this comes assumptions about how much happiness a disabled person will experience over the course of thier lives. As I pointed out in my blog about Peter Singer, it is not possible to define happiness along strict lines, or predict how much happiness or tragedy someone will experience over the course of thier lives. However, this dosen’t stop people like him advocating for disabled children to be euthanized at birth or others to treat our lives as having considerably less value than that of ‘normal’ people. This might seem very theoretical but this has an impact on the film portrayals of us, the medical decisions that are made about the lives of people with learning disabilities and the jobs autisitc people can get into. This obsession with turning disability into a medical disorder pervades every aspect of our lives, and undermines our ability to experience our humanity, in a way which – ironically – feeds into the pity narratives that are patronizingly pinned on us. Therefore, its time for an alternative approach…

Defying ‘normality’…

What might an alternative approach to the model of disability we’ve been presented with look like? I think we can say for certain that it should do away with the idea of disability as a tragedy and cease comparing us to our neurotypical or non-disabled peers. A better understanding might be to say that disability exists mainly when barriers are imposed. That would force us to situate our understanding of conditions like autism, downs syndrome and physical impairments within the context of the social, economic and cultural systems which do make people less happy, which stop people who are perceived as being outside of ‘the norm’ from reaching thier full potential and which – in essence – disable people.

At a micro level this might involve making education systems more accessible, creating accommodating working environments and ways of working, creating a benefits system that puts compassion and understanding for the individual at its heart as well as health and support systems that do the same. Creating representative media and making all public and private spaces accessible is also part of this. At a wider level, a more ‘social’ model of disability might involve something as wide as looking to change the economic systems that prioritize an individuals ability to be ‘profitable’ above aspects like thier creativity while shoving aside those who are not considered ‘productive’ members of society.

A major difference between the social and medical models of disability is the separation of impairment from disability. From a social model perspective, disability is imposed upon people with an impairment’, while a medical model holds that disability is caused by or is synonymous with the condition in question, be that a physical or mental one. One criticism of the social model is that it dosent take account of the lived experience of disability and the problems that disability itself causes. From this perspective, its all well and good to say that we should be removing barriers but that does not mean that there are not difficulties intrinsic to being in a wheelchair or being autisitc.

Its a fair criticism in theory but one which dosent acknowledge what neurodiversity campaigners and advocates of the social model of disability actually believe; most advocates prefer to use the social-relational model of disability which says that yeah, there are personal experiences of impairments, of course there are, and in the case of something like autism those personal experiences might be good or bad. In this framework disability is defined by and experienced through impairment effects: barriers that your condition presents to you as a person, barriers to doing: i.e disabling restrictions such as an absence of wheelchair ramps or inaccessible language, and barriers to being: the unequal social relationships and systems that help to draw a distinction between ‘normal’, ‘functioning’ members of society and so called ‘abnormal’ people, who are frequently shut out of society altogether on the basis of its lack of ability to understand or accommodate for them.

Under a social-relational model of disability, people should receive all the help they need to thrive despite thier personal impairments, while we seek to build more accessible and friendly societies, that are welcoming to people of all abilities and ways of looking at the world. More controversially, we should seek to dismantle the attitudes and so-called normal ways of doing society that keep people with disabilities trapped in gated off areas and care settings, that keep us vulnerable to viruses like Covid because of medical negligence and biased judgments about the value of our lives, and which keeps us from being part of work, higher education, or social circles because of preconceptions about how we are and what we are able to do. There is an entire class of disabled people who are suffering under the burden of being told they are ‘not normal’. Ending the stigma and beginning to reshape our ideas about what is and isn’t normal could be the first step in achieving wider, social change.

An Atypical Perspective

To return to the question posed in the introduction, what is ableism? To me, ableism is not one thing but a network of ideas, systems and practices that produces an image of an ideal human – an archetype to strive to and try and become. Autism and disability, in contrast to this vision, is portrayed as less than human, imperfect, flawed. This is created and enforced through the contrasting states of ‘normal’ and ‘abnormal’. This understanding of disability as meaning a person is ‘abnormal’ is consistent with medical model where it is assumed that people who experience disability and their families want to be ‘normal’ and are subjected to many disabling expectations, for example, to be ‘independent’, to ‘adjust’ and ‘accept’ their situation.

Something I haven’t had time to go into today is how categories of ‘normal’ and ‘disabled’ emerged through the rise of capitalism. The suggestion that a social model is not relevant to the everyday reality of families who experience disability is false. In emphasizing an understanding of disability as socially constructed and imposed through prejudice, exclusion and environmental barriers, the model shows us how creating a fairer society for autistic and disabled people is not simply a question of making ‘reasonable adjustments’ but part of a wider social project aimed at reshaping who has value and who gets to be a member of society. ‘normal’ offers some ‘high functioning’ disabled people like myself the opportunity to be operate in the economy. Social theory, grounded in a progressive vision for society as a whole, offers disabled people the opportunity to transform their own lives and in so doing to transform the society in which they live into one in which everyone is valued. As an autistic
person, I know which of those choices I prefer.