Difficult Discussions: Where autism meets mental health

Tomorrow, as I publish this, is World Mental Health Day.

I’m not paticulary one for new years resolutions but the two I always make are a promise to talk to people more – seeing what I can learn be that from a colleague or a friend, and to keep check of my mental health. This year has not made either of those easy, and look, despite the urge to say ‘things are okay’, Its equally fine to admit that they are not.

Though, this is not another post about the pandemic. Its about understanding the connection between mental health and autism. Up to 70% of autisitc people experience mental health issues such as anxiety and depression. While I have never been diagnosed with any mental health conditions, I quite often feel a lingering sense of anxiety, and alongside that a lack of confidence in myself which only subsides at times where I’m comfortable in my routines and understanding of the world. We don’t know exactly what’s responsible for the prevalence of these difficulties in people on the spectrum. That said, there is research to indicate that a feeling of autism not being accepted as a positive aspect of ones personality leads to feelings of alienatiation.

I’m conscious of the way my autism marks me out as different both outwardly through affecting things like my speech, reactions and coordination and inwardly by impacting my ability to process multiple sensory stimuli at once, making me quite emotionally vulnerable. All these can show in social situations and therefore having my autism accepted is important to me. I have been in situations where I feel some of these aspects have ostracized me, making me feel somewhat depressed.

As human beings we have a natural desire to be accepted and to belong to a group. For autistic people, this presents a dichotomy where we can either disclose our autism and risk having it met blankly, or put on a façade of ‘normalcy’ and risk appearing strange to other people if we don’t ‘camaflagoue’ effectively. Both these forms of lack of acceptance can be harmful to an autistic persons mental wellbeing.

Interacting with emotion

One of the main challenges in confronting mental health difficulties and autism is deciphering the difference between the symptoms of anxiety and depression, and those of autism…

Take socializing. How do you distinguish between someone with no interest in social interaction and someone who who is incredibly socially anxious? And is it fear of ridicule thats driving that, or a generalized ‘irrational’ fear of talking to people? One of my special interests has always been in media. I’ve always admired journalists and creators, like those who investigated the Cambridge Analytica scandal and music journalists who have built up a reputation as freelancers. In uni I was understandably told I needed to be at all the cultural events, asking questions, reporting on social media, pushing myself to the forefront of the public eye. I’m getting far better at networking although its by no means easy, and while I took great pride in my special interest, I remember metaphorically beating myself up over the fact that I didn’t think of myself as confident or ‘savvy’ enough. I very much had and have a lasting uncertainty about the way my occasional lack of confidence would effect me in life.

I do certainly have a need to be on my own at times. That said, I don’t have any trauma from past attempts to socialize, which puts me in a semantic quandary, as only that would technically qualify as ‘anxiety’. The problem is that we’re thinking about the problem through a limiting lens. There is now more work being done on how autistic people experience mental health difficulties. Psychologists have started looking at ASD specific difficulties including factors such as fear of the uncertain, and a more general fear of communication. One interpretation of what I went through might be that my special interest turned into a constant source of fear or worry where I feared the consequences of what would happen if I didn’t live up to my own expectations; I prefer to think of the experience as a fear and difficulty in working out ‘what comes next’ contributing to those feelings of anxiety and worthlessness.

Still, why is it that these feelings are so inescapable for a lot of people on the spectrum? I do worry more than I should – usually about trivial matters. In fact, many autistic people report the same sense of lingering anxiety, often over something as benign as a pain in thier arm or how they organise thier day. This perception of the world as overwhelming might be down to the fact that autistic people sometimes overlook certain cues leading up to an unexpected experience, and that this exacerbates anxiety and sensory overload. I know there are environments and circumstances which I consider ‘safe spaces’, and that outside of them, I feel very anxious and afraid. While the facts around this are up for debate, there is some sound research and logic to support the idea. That said, given autism and mental health are on a spectrum, it would be a mistake to group the symptoms of both in together into one umbrella theory.

The consuming nature of how your mental health treats you, often makes you feel like no explanation can quantify how your feeling. I have states where my happiness is so overwhelming that the last thing I want is logic to come along and ruin my positivity, just as I’m sometimes in a state where even the idea that what I’m going through has a rational explanation, fills me with dread. That’s what this next section will look at.

Taking off the Mask

Lets return to this idea of distinguishing between a difficulty with mental health and a symptom of autism.

Going through a dark patch in your mental health seeps the life from you. However long it lasts, time seems to drag while its going on. You feel either a sense of worthlessness in yourself and your achievements accompanied by a sort of bleak negativity in everything around you, or a constant uncertainty in your actions which makes you procrastinate, worrying that everything you do is wrong or of no use to anybody. Physically, these sensations are met with extreme tiredness or aching.

I might call these patches autistic burnout or depressive episodes. However, I see both as interlinked. I’ve described before how I’m emotionally sensitive. So, something as small as a mean comment or a huge disappointment can impact me, messing me up mentally or bringing down my mood for perhaps a whole day. Another potentially harmful stage is the process of ‘biting my lip’ and muddling through, while trying to maintain a somewhat positive façade. This exhausts mental energy which further saps my ability to interact and communicate, all of which has the potential to create a rather vicious cycle of poor mental health.

Thankfully its not all negative. I have built up a level of awareness that allows me to realise when I’m going through a dark patch in my mental health and stop it spiraling into something bigger by seeking emotional support and trying to understand how I’m feeling through documenting my experiences. That’s not to say that everybody can do that. I realise that getting out of that cycle is difficult. In the period between leaving university and initially struggling to find work, my stagnant position led to a self-fulfilling feeling of hopelessness, which undermined my health both physically and mentally.

On a wider scale, this has serious effects. Autistic people are four times more likely than neurotypicals to experience feelings of dejection, insignificance and depression. This can severely impact even our previously learned independence skills. I know from experience, that not getting the opportunity to socially interact, makes my confidence plummet. It also warrants pointing out that autistic people are at alarmingly high risk of suicidality. I’ve been lucky enough never to have been in that frame of mind, even though I’m conscious of anybody’s potential to feel like that at some point in thier life. I’m also paticulary moved by the stories of those autistic people close to me, who have been through that degrading and awful mindset.

“People with autism often struggle to imagine the thoughts and feelings of others, including their own future selves. As a result, they may have trouble believing they will ever feel better. They can also easily become overwhelmed by the small but complex problems of everyday life and respond with extreme thoughts or statements”

Sara Deweert, Spectrum news

I had to include that quote as its so accurate, to the way I and many others have felt. When your emotionally hurting, one of the irrational questions that rears its head is ‘am I going to feel like this forever?’, and thats a scary mindset to get stuck in. I’ve never been very good at solutions, but the one thing I will ask you to do if you know somebody suffering with mental health difficulties or you think theres a possibility that somebody might be, is to show compassion. Just as a negative experience such as the pandemic can embed us in ways of thinking which feel inescapable, something as simple as a kind message from a friend can remind us of all those times when we’ve felt positive and that we will feel that way again. Remind somebody of that, this mental health day.

An Atypical Perspective…

Autistics experience mental health in different ways: We cannot look at mental health in autistic people through a purely neurotypical lens. While many peoples struggles to socially interact might be offset by past experience, many of us just feel naturally socially anxious. Whereas most have the ability to process changes in thier environment or circumstances quickly, our ability to understand and comprehend these changes may be severely impaired. Importantly, through the process of masking and wondering whether or not to disclose, we exhaust a large amount of mental energy which could be better spent. Obviously everyone’s mental health difficulties deserve attention, and nobody is more important than anybody else, but not everybody experiences thier mind in the same way. Realising that is surely a vital stepping stone in the pathway towards supporting individuals, over stereotypes.

Mental Health States can be consuming (and thats okay): As always, I can only speak for myself here but I know as an autistic person who is conscious of thier mental health, I can be overwhelmingly happy at times and utterly miserable at others. Its only in those two extremes that I can fully decipher how I’m feeling. When you occupy either of those mindframes, it colours every other aspect of your life, making you unable to see past your current emotion. Especially in negative mental states, its important to hold on to the knowledge that things are rarely that black and white and that the sensation your feeling is not inescapable, even if that does seem like more of an uncomfortable truth than something thats wholly reassuring. Through having that reassurance, we can realise that our mindsets are temporary and seek to understand why we’re feeling that way.

Compassion is aspirational: The simple act of sending a kind message to a friend is the baseline level of compassion and is definitely an amazing behaviour. However, compassion on a grander scale is worth aspiring towards. I’ve been trying to make myself and others feel better by reaching out to people I haven’t spoken to in a while and making plans to see them when conditions allow. In the long run, I’d like the current pandemic to result in more community initiatives to help the most vulnerable, every workplace becoming somewhere where people can feel mentally reassured, and mental health facilities expanded to reflect the wide array of experiences people have. While building fully compassionate societies cannot be achieved overnight, as a goal it provides a blueprint for making the spaces we interact in receptive to the needs of autistic people and all those struggling with thier own mental state.

A Crossroads of Equality: Ableism and Intersectionality

“Ableism is discrimination and social prejudice against people with disabilities or who are perceived to have disabilities. Ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled”

A definition of “ableism”

The exact definition of ableism depends on who you ask. Different people experience the discrimination in different ways. I like the one above, which clarifies how ableism can happen when people are perceived as disabled, or reduced to one charecteric in order to undermine them.

I’d like to think of myself as an ally to minority groups, even if I can’t speak with any authority on the experiences of any of them, except autism. For a more in depth analysis of disability issues specifically, I recommend you follow Mel Baggs’ blog. Her post “There is ableism somewhere at the heart of your oppression…” frames the argument along the lines of ‘if you’ve experienced discrimination, you’ve experienced abelism’ which is different to mine, though hers is still worth a read.

The idea behind intersectionalism is that all forms of discrimination go hand in hand with one another, in the sense that racism and abelism intersect, as there are obviously disabled people from BAME backgrounds. Homophobia and transphobia intersect in that there are trans people who are also gay and so on. The idea of intersectionalism proposes that you can’t be against one form of discrimination without also being against the others.

Until recently, autism has been widely thought of as largely a male disorder, with boys diagnosed with autism outnumbering girls, 4 to 1. Psychologists such as Baron-Cohen attribute the condition to an “extreme male brain”, where according to him the minds of men are geared towards ordering things – a male trait – but not empathisng – a female trait. However, scientists such as Shana Nicholas have pointed out how females often “slip under the radar” and research from 2012 theorized that autistic females are more likely to skew towards needing learning support, than showing behavioral problems, meaning thier missed by a lot of the methods used to diagnose ASD. That’s without mentioning the very interesting research appearing to show that autistic people are more likely than neurotypical people to be gender diverse.

Within BAME communities, a lot of families experience double discrimination, due to thier ethnicity or disability. Many families from those groups struggle to engage with autism resources due to a lack of representation from facilitators, the language barrier and not being able to get others to empathize with issues related to thier culture or religion. Also, testimony by autistic people from those communities say that things like public meltdowns often aren’t treated as symptoms of autism for them. To use one quote from a parent ‘people will see this behaviour first, and then see the colour of my child’s skin’

In that sense, there is an archetype associated with autistic people. That of, ‘straight, white and male’ – and I fit that picture. How can advocates of the neurodiversity movement like myself, claim to be against oppression of all autistics, when we have yet to shake off that stereotype? Research on autism within gender and race etc. present an opportunity for a turning point in our understanding of the condition. Vitally, in order to be truly representative, autistic activists must realise the importance of intersectionalism. This is why I say we are at a crossroads of equality.

Intersectionality

Reading the research around gender, sexuality and race makes deciphering how ableism interacts with different discriminations, easier to understand.

Consider for a second that a lot of homophobia focuses on trying to delegitimize peoples sexual identity either by making them seem less woman-like or making them out as effeminate. These are obviously incredibly offensive caricatures to both women and LGBT+ people. Therefore, sexism, homophobia and indeed transphobia are here interacting in a way which paints stereotypes of people from across the sexual or gender spectrum. To be against one of these forms of discrimination and not the others, would be absurd.

Upon further analysis of quotes like the one from the mother who worried her son was being judged based on race for his autisitc meltdowns, we see this sort of interaction happening within ableism. In what she described, passers by saw the skin colour before they even guessed at autism, and presumably used that to make a judgement about the child or her parenting. In fact with lots of forms of discrimination, the concept of intelligence, learning and the mind plays a vital role. People on the LGBTQ+ spectrum have been accused of having a mental illness. IQ scores are often used as a way of saying people from certain racial backgrounds and are inferior to white people. Even when autism research focuses on one gender, the fact that all characteristics for defining autism are being looked at through a lens of how males experience ASD, shows an intersection of ableism and sexism.

Embeded within each of the fist two examples is the idea that people from those groups must be mentally disabled. In the case of the later we see how one group experiences autism being applied as the prototype, which overlooks not just females but all people with unique experiences of being on the spectrum. In this sense, ableism too can intersect with multiple forms of discrimination. I use the word intersect here to stress that this isn’t a case of one form of discrimination being more important than another, just that they’re not as disconnected as they are sometimes thought of as being. Importantly, realising that they intersect, strengthens the case for why we should care about all marginalized groups.

A Question of Ability?

In order to explore abelism with regard to intersectionalism we need to look further at this idea of intelligence and the mind. Any attempt to devalue autisitc people or to devalue somebody by making them out as disabled, focuses on thier weaknesses. For me that’s interacting in social situations and being under pressure. This disregards things like emotional intelligence, or cognitive ability to understand a special skill, which a lot of autistic people excel at. All discrimination really, involves a stripping of nuance and specifics.

I pointed out earlier how the idea of intelligence has been routinely used to undermine people of different racial backgrounds. In the case of the former, the abelist and racist myth of “race science” says that there is link between race and intelligence and that there are “evolutionary bases for disparities in social outcomes such as wealth and educational attainment”

So I bet some of you are a bit confused right now. If neither autistic people or people from BAME backgrounds are less intelligent, than how are those two forms of discrimination connected? Well, heres the point. Intelligence is a slippery concept. Its one thing to try and prove that there are no significant disparities in intelligence between marginalized groups and everyone else, and another to argue against the ways some methods of measuring intelligence can be used to promote discriminatory messaging.

Take IQ scores. Most people who take them will achieve a fairly flat line across each of the categories. For the majority, if they are unable to cook a meal, they will also be unable to analyze complex literature. However, for autisitc people this might be different. I remember when I was young I took a longer time than most to learn how to tell the time and to cook, but I also remember still being very emotionally aware, and knowing lots about my favourite authors and musicians. One could look at my difficulty in immediately comprehending an instruction or question now and conclude that I am less intelligent, without taking into account other forms of intelligence. Its a similar situation with people from different cultures. IQ tests have been criticised before for placing undue weight on language skills, when people from different backgrounds obviously communicate differently.

This goes back to this question of nuance. With discrimination all question of different experiences is removed and the discriminator is focusing on a set of standards which they have decided determines someone’s intelligence. Transphobia relies on a set of assumptions about what male or female is, homophobia on ideas about what is right for men or women to do. Considering straight, white and abled people are the majority, the assumptions are frequently based on what’s ‘expected’.

Ableism can intersect with other discriminations any time one group of people is derided as mentally and psychologically inferior another, and you see a view of thier identity as something to be cured. Age old ideas of medicalization – the concept that you can just ‘cure’ something thats intrinsic to the genetic makeup of a person – has been used to hurt people of numerous identities, including autistics. Even if we’re looking at this on a less extreme note, every time people are judged on a basis of what they can or cant do, or anytime someone is barred from access to a certain part of society that most have access to, you’re seeing why identity activists of all stipes should be supportive of each other.

An Atypical Perspective…

Discriminations intersect in different ways: Just looking at the baseline fact that there are autistic people who are black or autistic people who are gender diverse shows a good enough argument for intersectional equality. This is stressed further still through the prevalence of medicalization in identity discrimination, the like for like comparison of peoples abilities irrespective of thier backgrounds, and even the bias that sometimes occurs within research. By grasping how these discriminations intersect we can seek to further understand the experiences of a wide range of autistic people, and make the community a welcoming place for those outside of the steotypical definition of ‘disabled’.

Don’t judge a fish by its ability to climb a tree: This is a mislabeled quote often attributed to Albert Einstein which goes ‘everybody’s a genius but if you judge a fish by its ability to climb a tree, it will spend its whole life believing it is stupid’. He meant that someone might excel on one measurement and prove inept on another. Unlike the standard portrayal of autisitc people, I’m awful at maths, while I excel in creative ventures. Still, if you judged my intellegence based on the former, you could conclude that I’m not very bright. We see this across the board. People from different cultures or countries are judged on thier ability to understand western reading or writing comprehension. People of different genders are expected to experience things like disabilities in the same way. To hold up a set of standards and pretend that they are universal is not only ableist but a disservice to people of all identities.

Intersectionalism should be a lynchpin of movements towards equality: Considering that everybody is diverse in some respect, without any intersectionalism at the heart of your movement you’re really only speaking for yourself. However, as previously pointed out, efforts to seek equality should consider the experiences of all those people within them – an autistic community should value the experiences of its BAME members, just as much as those of its LGBTQ+ members. There are issues that you can say pertain specifically to each of those groups and they themselves should always be given the microphone first in any disscussion about thier oppression. Still, our struggles are often interconnected and interweaved in ways which can’t, or indeed shouldn’t, be overlooked.

Uncertain Transitions: On the prospect of a second wave

I try and use this blog as a useful resource and not as a platform to vent , but as my country seems to gear up for a second wave of covid 19, I need to vent. Let me devote this next paragraph to that activity *breathes in*:

“What on earth was that last week? Here I am trying to create the mental energy to deal with these already stressful times and I get bombarded with anxiety. Upon finding out my area was going into lockdown, I was thrown into doubt about my work routine – something thats been keeping me sane for the past few weeks. Despite reaching a compromise over that, I’m still not sure which family members I’m going to get to see and when! Do we expect these restrictions to carry over into Christmas? Can we expect another national lockdown? More local lockdowns? This was the week when the stark reality of our uncertain future was thrown starkly into the light, and if the mixed messages are anything to go by, nobody, especially not the politicians have a clue what happens next!”

*breathes out* ah, that’s better. All joking aside my frustration does have a serious side. The prospect of a second wave is not something anyone is looking forward to having to deal with and anyone would understand the frustration many feel at having to suddenly revert to a lockdown way of behaving, or at least prepare for that possibility.

That may be why the nuances surrounding the implications of a second wave seem more apparent this time around. Maybe its to do with the frustration people feel at already having been through so much, and a mistrust of those who are supposed to be guiding us through? That’s not to downplay the seriousness of the coronavirus. It is very serious and requires us all to be vigilant bur we gain nothing by treating peoples frustrations as if they’re whining complaints, secondary to the ‘national effort’.

This blog post will address some of those anxieties from an autistic perspective, and asks how we can resolve them in a responsible way.

Autistic transitions

We tend to think about transitions as huge moments when someone’s life changes. While its true that those changes can impact autisitc people in adverse ways, we make transitions everyday.

Picture the scene: I’m going for a walk in the park . I take a cursory glance at social media which is a mistake under most circumstances, and see that my area has gone into lockdown. My mood immediately drops from pleasant to mortified. I negotiate with work, I tell them about my wellbeing needs and I agree to come in for about two days a week. I consider still seeing my family on the basis that I live with them.half the time. That said, I promise myself to stop socializing outside of those settings. After a serious and sombre message from the prime minister, my mind takes on a significantly more negative tone. Fully expecting to be met with a fearful and quiet atmosphere the next day, my mood heading into work is one of dejection. After I come into work I am surprised to find weirdly busy atmosphere, and relieved to see that people share my frustrations with trying to balance personal wellbeing and collective responsibility for keeping others safe.

This is an abridged version of how volatile my emotions can be when confronted with a combination of sudden changes and uncertainty. I’m not looking for sympathy but perhaps empathy. On Monday night halfway through writing a piece for my music blog I gave up the task and sobbed. I’ve described before how I’m quite emotionally vulnerable anyway but in that moment everything that had been weighing on me, finally made me temporarily collapse. For the past few days I’ve been carrying around a sensation which is hard to describe, but feels like an emotional heaviness. I’m going through a process of autistic burnout.

To anyone reading this who might be going through something similar, its okay to feel this way. In recent weeks more and more disscussion has focussed on the imposing of local lockdowns and second waves. For many of us who enjoy company and like to have routines in place which involve going places and being active, these are scary times. For many, including myself, a sense of safety as well as sensory stimulation and happiness was being built up through those routines, which we were already devoting effort and mental energy in integrating in to.

Now that things are getting bad again, we are being asked to transition to a new structure, and new way of thinking whereby we might not be getting that person to person interaction with friends or family members that so many of us need. This rightly makes us feel uneasy or even wanting to push back against the change. As an aside to that the uncertainty – the increased fear that things might change further, or that we might be plunged back into lockdown, makes preparing mentally and trying to plan out events in your head near impossible. As it currently stands, not too much of my post lockdown routine has changed, but the worry induced by still being in an uncertain position has caused me great amounts of anxiety.

The one piece of advice I can give for those feeling similar is to remind yourself of the temporality of the situation. Autistic people especially will be working particularly hard to mask how thier feeling, yet we can’t do so all the time as that expends precious mental energy. Its important to speak to people you trust and tell them how you feel. Indulge in that activity that always makes you feel better – for me thats listening to music. If you imagine your mental energy supplies like a tank these can all help replenish you in some small way. Anything that reminds you that this experience won’t last forever, will be incredibly helpful in getting you through!

Reason to be worried?

So far, this blog has focussed mainly on myself and how I’m feeling though as I’ve said time and again, I consider myself to be in a relatively priveleged position. I’m in stable employment. While it may not be that good for me to work from home I am able to do so. Being young without any physical health issues, I’m also at low risk of dying from Covid-19.

Spare a thought then for those who are dealing with this transition in thier lives worse than me. A few blog posts ago I detailed my struggles in uni and finding work, as an autistic person. I am very grateful that I don’t have to deal with the struggle of looking for work now, or being in higher education and experiencing even less of the camaraderie and friendship which rightly defines that era of life. Not to mention, that 10% percent of autistic people with physical disabilities or underlying health conditions, those who suffer from atypical immune responses like autoimmune disorder.

I have explained how how I personally suffer on the mental health front, however this is a vast and wide ranging problem. The Autism in Adulthood journal takes care to point out that with social distancing a key factor in reducing the spread of the virus, many of the services available to autisitc people have disappeared. I can only imagine what the people who I used to support on a voluntary basis are going through. We know that ongoing isolation and loneliness can be as detrimental to a persons health as smoking or fast food can be. Also, research done on the Ebola epidemic suggests that living through one may be associated with symptoms of depression, anxiety and post-traumatic stress disorder. As the journal just cited states: ‘Given that autistic people are already overwhelmingly likely to experience mental illness, and nine times more likely than the general population to die by suicide, the mental health consequences of COVID-19 may be devastating’ .

I bring this up as as far as I can tell very little has been considered about disability, either in Covid19 recovery planning or policymaking. Its not been entirely absent. Some support services as well as university courses have been put online, shops have introduced priority opening times for disabled customers, and mutual aid groups are helping to deliver essential supplies to the disabled, as well as hosting online meets etc. A lot of the community responses we’ve seen have been inspiring but in terms of national action plans for looking after disabled people during covid, and helping them deal with the effects of returning to a post covid world, I’m seeing very little.

In the UK, the response to the virus is looking less and less like a national effort that we all need to unite for and more like a curtian-twitiching dystopia. Last week the UK parliaments joint committee on human rights published a report which stated that “It is unacceptable that many thousands of people are being fined in circumstances where the lockdown regulations contain unclear and ambiguous language”. Government ministers have made admittedly non official statements encouraging people to snitch on people breaking the ‘rule of six’. This is in spite of constantly guidance over what you should or should not do, and an absence of financial support to employees or people self isolating.

The underlying moral here is: Give people who are anxious and worried the help that they need, while combining that with clear and practical instructions, and people will do what’s required. Create a climate of fear with an air of uncertainty as to what the rules are and whether they should obey them, and people kick back .

An Atypical Perspective…

Its normal to find transitions scary: If you view your experiences as a train journey and every sudden change as a diversion to some uncertain place, thats rightly going to make you feel anxious. In those situations we want to know where we’re going and what we’ll encounter when we get there. Not having that makes us uneasy. To overcome that worry, cling to the elements in your life which are more certain. Phone a loved one, listen to your favourite song. These help us to maintain that sense of order and certainty which are necessary for everyone’s wellbeing, especially autisitc people!

The Coronavirus is making disabled people ill (in more ways than one): Talking about peoples health and wellbeing with regard to the coronavirus is not an act of defiance against the restrictions. By contrast, its a plea to help the most vulnerable at this time. To have support services still in place to help autisitc and disabled people through the coronavirus period, so that we can be a more supportive society post-covid. Efforts to promote this have focussed on encouraging individual acts of charity, which while welcome, fail to confront the international crisis in physical and mental health, worsened by the pandemic. Rather, these problems require our leaders to pay attention and put forward a coordinated response that strengthens the ability of communities to support each other.

Creating a climate of suspicion is counterproductive: From an autistic perspective this uncertainty creates a sensation of information overload, where our base emotional instincts overtake our ability to effectively process all the information being chucked our way. This ultimately means that going about my routine for the sake of my own wellbeing, or seeing a family member that I live with half the time, becomes treated with a sort of suspicion. By mutual effect, this makes people especially likely to distrust authority and disobey regulations, especially when they believe they have a need which prevents them from complying. Considering that I have a fear of confrontation, especially from people in authority, the uncertainty fueled by our leaders furthers my sense of panic. Put simply, don’t confuse people, and support them where possible. With that mantra, we will hopefully still have a society once this crisis is over.

The Empathy Imbalance: How autistics relate to others

Seeing autism as an ’empathy disorder’ is quite a common umbrella theory…

An umbrella theory applied to autism is any idea that tries to explain several symptoms of autism using one underlying concept. ‘Magical world theory’ which I went over a few weeks ago technically counts as an umbrella theory. Despite still being in its early stages, the idea that a lot of autisitc traits stem from difficulty in predicting and understanding change might be useful in our understanding of the spectrum…

Umbrella theories are problematic in that trying to explain anything using one overarching net is likely to result in some oversimplification. By some of the proponents own admission, this is definitely the problem with describing autism as a deficiency in feeling empathy.

I know that I don’t completely lack empathy. I “feel with” people greatly. I can understand when I’m in a happy environment ’cause I feel positive as a result, which partly explains why social gatherings don’t worry me. Alternatively, news of human suffering effects me, even if they might not do so personally. When the Grenfell Fire tragedy happened, I remember having a severely upset and angry reaction, to the extent that I felt socially paralyzed, unable to divert my thoughts.

Just as ’empathy disorder’ lacks nuance, its not entirely wrong. It is true that autistic people can have more difficulty discerning how other people think and feel through elements such as facial expression and body language. Not to mention “reading between the lines” or discerning the hidden meanings in how people communicate. This is what theorists like Simon Baron-Cohen mean when they describe ‘mind blindness’. The problem here is that we’re talking about empathy in binary terms.

Shallow vs. Deep Empathy

We tend to think about empathy as the process of “putting yourself in anothers shoes”. That is to say, trying to understand someones emotions and thought processes from thier outward expression.

In social work its quite common for a support worker to show you images of different facial expressions. While overtime an autistic person can learn to identify them, they may sometimes struggle to properly respond to these signs, at least initially, when they encounter them in real life. Again, this shows a bottom up thought process at play whereby an autistic mind tries to find and then discern detail in order to come to a conclusion, rather than relying on learned attributes of ‘this is how to respond to sadness’…

Many hold this up to show autistic people lacking empathy. After all, using outward signals to directly work out what a person is feeling is the definition of empathy employed by thinkers like Paul Gilbert who uses the phrase “looking through the eyes of another”. And, they’re not entirely wrong. Just like a good improv comedian, to encourage communication, I shouldn’t say ‘no’ I should say ‘yes and…’

This form of empathy is called “shallow” or “cognitive” and is concerned with knowing how somebody else is feeling. However to understand a persons sorrow is not the same thing as feeling sorrowful. There might be scenarios where this approach is needed. I used to enter a state of extreme panic when I lost anything that I valued, as not having that would make me feel like I was loosing my sense of surety. While I still find that an unpleasant experience, being able to recognize that sort of anxiety in younger autistic relatives helps me to observe from a distance, so that I might take a rational approach, without feeling overwhelming emotion. Its the same form of empathy that a support worker might feel when confronted with someone suffering from a dark patch in thier mental health. Although this is the form of empathy autistic people struggle with, its by no means alien to us. I had a mentor through uni who was autistic, and helped me to understand my anxious states as well as my contended and happy ones.

This leads me to discuss “deep” or “affective empathy”. This, according to psychologist Daniel Goleman is when “you feel physically along with the other person, as though their emotions were contagious”. You might have heard some autistic people describe themselves as being too empathetic. Well, this is precisely what is meant. In my blog on music I point to mirror neurons where your brain processes, and by extension your actions and emotions, mimic those of someone you’ve observed. As an autistic person, I see a lot of my behaviours as learned from influential figures in my life. For me its a natural reaction when a friend describes to me thier upset, or when I hear emotion strongly transmitted in music and film, to find myself having a heightened emotional reaction.

A pitfall of affective empathy is that managing your emotions becomes more difficult. Constantly having strong emotional reactions which can change without warning can lead to burnout, and psychological exhaustion. Here’s where we discuss compassionate empathy, whereby we’re moved to help. Compassionate empathy recognizes thought processes and emotions as intrinsically connected.When friends comes to me describing feelings of anxiety or distress, I often feel deeply emotionally connected, and often try to help them make sense of that by telling them about my own experience of those feelings, and how I overcome them.

Interestingly, while as an autistic person I struggle with cognitive empathy, I have large amounts of affective and compassionate empathy.

Imbalance

It goes without saying that different people will have different levels of empathy. How much value you hold to the different types will depend on how much value you place on the trait. According to psychologist Steve Taylor, empathy is the thing that makes us human, and that all oppression and cruelty is the result of a lack of empathy.

“if you identify with another person, if you have a psychic and emotional connection with them, then it’s impossible to treat them brutally. You recoil from their experience of suffering in the same way that you recoil from your own suffering. In fact, you feel a strong desire to relieve their suffering and aid their development. But if you can’t identify with them, then there’s no limit to the amount of suffering you can inflict. You can’t sense their pain, so there’s nothing to stop you causing it”

Empathy: The Ability that Makes Us Truly Human

Peronally, while I can accept the idea that inflicting suffering on another requires a suspension of empathy, for me its the contrast: the ability to change if and how we relate to others that makes us human. As an autistic person with a strong sense of right and wrong, I used to be – and to an extent still am – constantly confounded about how some politicians can be aware of the suffering some of thier decisions inflict, and continue with them irrespective. These politicians may have the ability to excersise shallow empathy in being able to talk to people, understand thier needs and appeal to them, while a lack of affective empathy allows them to make decisions which maltreat others, without the burden of guilt or pain.

The same principal applies to conversation. If I as an autisitc person came to you, physically shaken and tell you that I’m suffering from a great deal of social anxiety after being overwhelmed, the correct response is not to reassure me that I’ll be fine or remind me that everyone has days like that. These minimize my experience by removing the specifics with little regard for my anxiousness. Rather, trying to understand how this has affected me, and helping me make sense of my thought processes through conversation might be a far more useful approach. This creates a non-judgmental environment, therefore creating space to address a stressful situation.

Remember earlier when I described “mind-blindness” – the way in which autistic people struggle to predict anthers thought processes or reactions in an exact moment. Well, this is related to “theory of mind” the idea that we constantly mind-read and thats how we gauge the mood and motives of someone we’re talking to. Notably, the ‘blindness’ that some autistic people can experience in certain interactions is something experienced by everyone. Empathy usually isn’t something that just happens – its a conscious decision to be emotionally present.

Going back to the ‘I come to you feeling stressed’ example, there will be scenarios where you are so caught up with our own problems that you emotionally withdraw. Able to sympathize – i.e to express pity, but not able to be empathetic. I bring this up ’cause we spend a lot of time beating ourselves up when we dont have an empathetic response to someone who comes at us with thier problems. Make no mistake though, empathy is a skill not a natural trait. It requires learning to be aware of our own emotions and detaching from them. When we can’t do that our minds create ’emotional static’, whereby an opportunity for understanding is lost. The effects can be anywhere between short-term falling outs to the fracturing of relationships.

An Atypical Perspective…

Showing empathy goes beyond reading facial expressions: Its easy to see why we primarily associate empathy with being able to read and understand body language. It defines probably a larger proportion of our interaction with others than speaking does. However, by doing this we are ignoring the empathy that comes with being able to feel another persons pain or joy, when your emotions mirror theres, or wanting to help someone. By gaining greater understanding of these we could learn to develop them and vastly improve our interaction, and attitudes to other people.

Your emotional state is important too: We tend to see empathy as primarily concerned with other peoples mental states. However, how you manage your emotions will determine how you show empathy to another person. With cognitive empathy you need to be emotionally present and being in that state all the time can be difficult, and has to be practiced. Same with emotional empathy. You want to be able to ‘feel with’ others but looking after your own mental health and taking time to recuperate from burnout can be just as important. The quicker we realise empathy as difficult, with multiple challenges, the better we can look to support people with expressing and receiving that kind of kindness.

Empathy is nurtured and developed: My intention with this blog has been to show how empathy can be challenging – the truth is that autisitc people are incredibly emotional most of the time and want to help people wherever possible, although we may not always know how. However, with the sensory environments we interact in, mixed with the fact that many of us more easily piece together detail over a period of time, rather than instantly identifying a category, we find empathisng at least on a shallow, every day level, quite hard to broach. I suggest that those who view empathy as an easy character trait which comes naturally, although well intentioned, overlook its complexities as a skill…

A Return to A New Normal

The following is another piece of prose, which I do occasionally on this blog to break the admittedly demanding writing of in-depth research pieces. It describes my experiences commuting to work for the first time in about six months, and learning to adjust to the new environment surrounding me.

Just as the clock ticks as a wave sacrifices itself against a shore, so too must the drudgery of my day to day desolation eventually end. A loneliness which consumed our lives loosens its grasp, as the world wearily resumes. The months spent collapsing my memories into the mercurial qualities of a ill-remembered existence feels alien. I counted the days yet lost track, I measured the months yet they felt meaningless.

Before returning to a relieving routine, I remember reading about relativity. The theory that remarks upon the interpretation of time relative to your own frame of refrerance. So to did my perception of each day become malleable during those unmoving months- its seemingly motioning march traduced to the pernicious pang of never needing to know the time.

So, as a forgotten amount of days passed and the second hand tempted the minute hand, the world changed. I – and no doubt many more – emerged into the daunting familiarity of a ‘new normal’. Everything’s reassuringly remembered, yet behind the traversing trains and the once more sprawling streets, theres an unusual undertow. Just as a mask obscures the expressions which portray vivid emotion, so the world presents a facade of normalcy. Still, even commuting you feel the twinge of foreboding, and the rush of beauty – both wrought from an aftermath of isolation, which deals in both fear and wonderment.

Even the arcane mundanity of the train platform feels illusionary, when laid against the listless static of the last few months. A mask envelops my mouth and acts as a relentless reminder: the world you’ve stepped into is not the same. We’re still in transition and other side remains uncertain. Even so I can’t help smile at this newfound narrative, that I’m travelling to a world at work, even if the fundamentals which we once welcomed are altered, definitely for toady, likely for a while.

Naturally, my mind flickers to everything that hasn’t changed. Regardless of the directional dictations lacing thier way through the scrambled streets, its easy to simply observe the routines of commuters, the chatter of colleagues and acquaintances as they themselves become cradled in a the arms of a new course. One that they recognize as uprooted, even if thier relationships and memories feel fundamentally familiar.

So you see, each sight and sensation is a scattered fragment, or fossil of a system which likes to give the impression of sanity, even when circumstances prove severe and sordid. The sound of capracious activity which spills from the traders saluting a new day of business, the pacing of shoes upon a stone ground each in different succession to the other, even the whistling rush of wind through the trees. All these create a censorious atmosphere which gives the impression of normality, irrespective of reality.

Coincidentally, I seem to blend into that impression. Remember everything I’ve written about masking? The stimming, the supposed strangeness which can show through my movements and emotions. That’s shrouded, if you will behind a mask of normality. Irrespective of the strain that exerts, I welcome the reliability of the routine, the contemplation of the commute, and the cathartic nature of communication. Simplicity, it appears, is not for me or these times. Just as I occasionally desire the secrecy of seclusion, so I need the frenzy of the city streets and the immersion of a sensory environment. Call that confusing, the contradiction is akin to perfectly holding a pendulum in perpetual motion – requiring great skill, and somehow still never being truly satisfied.

I transcribe these thoughts alone in an empty office. The once thriving lifeblood of society exists outside, and is one I can hear from the streets yet has slowed to a smoldering inside, like a machine moving once more after an undisturbed slumber. Its a curious question. Am I wrongly expecting a return to routine? Is my championing of company too much too expect in a chaos where calls for community were crumbling long before the malignant illness lashed us into lock and key. I know thats the anxiousness talking though – the snake that bites at you in sinister uncertainty, surrendering you to the darkest side of your thoughts. Silently and steadily, we resolve to step forward.

There are flickers of positivity, as there are of fear. On the Saturday before I write this, I saw friends for the first time in months. And, in those moments the mechanics of our morose mundanity seemed to cease – like the first time I saw more of my family, we were seizing a fleeting freedom from a fall into an abyss that many would have formerly thought fictional.

‘We’ll be looking back in ten years saying ‘remember the pandemic’ one of my friends contemplated, creating an air of optimism by placating this stage in life with another. Poignantly, as I pointed out in my first piece of prose, realising the temporarily of our situation seeks to satiate a desire to see past the disease. Past the silence and into a new light that transcends a ‘return to normality’ in favour of ‘reinvention’….

Or rethinking, I thought, realising how much I’ve had to do that in the time elapsed. Reminding me of the value of my relationships. Tinkering with the remnants of a routine and seeking to shape them into something substantial, and finally recognising everything I regretfully take for granted

Patiently, this era will end and we’ll remodel and rethink. Even so, that will still be temporary – a blip if you will on an incomparable past and indefinable future. We will all learn to survive to reshape as I myself must continue to do, embracing my autism, with both my failings and ablilites, letting myself become influenced yet never impeded.

On A Cliff Edge: An autistic transition to adulthood

I’ve noted before how I’m quite lucky for an autistic adult.

I’ve gained a degree, I’m in employment and enjoy my work. Despite the fact that I still struggle with socializing, I have a degree of upward mobility that makes that possible, if not easy. Its true that I’ve needed lots of help with each of these and without the support I received theres a fairly good chance I wouldn’t have got anywhere near where I am now. That said though, I recognize the privileges I’ve been granted, and especially since doing voluntary support work, I’ve come to appreciate them more.

I appreciate them as its quite shocking how many autistic individuals are not given the chance to become independent, not to mention those who are diagnosed later in life and end up wishing they could get those years of thier life when they went un-diagnosed back.

Whats been happening lately though is autistic people diagnosed as children in the 90s and early 2000s have been making the transition to adulthood, and the gaps in the support system are starting to show. Just 16% of autistic adults are in full time work. 79% of them say that with more help they would feel less isolated. This is leading at least one in three adults on the autism spectrum to suffer with mental health difficulties.

This is incredibly difficult to discuss, when most of the information about autism focuses purely on children. Theres some good research about the problems autistic adults face, but very little on what can be done to support them. This has lead some to describe the process of finishing high school as being comparable to a ‘cliff edge’.

In My Experience…

After the original course I was going to study at university was cancelled, I was able to find a route into uni which aided me in learning lots of the practical preparations which I would have definitely struggled even more with, had I not ended up doing a foundation year at Caerleon campus.

While the ‘specialist’ focus of uni means some autistic individuals get a lot from the experience, many end up dropping out – a problem compounded by a mental health crises where almost 9 in 10 students say they worry about isolation. In my first year in Cardiff, the support network I’d built up at Caerleon disappeared. This difference was highlighted through the kind of support I received. In Caerleon I had note-takers who acted as ‘buddies’, who would help and talk to me. When I bumped into one of them at Cardiff they explained how a change of rules meant that any extra support provided by said note-takers was now regarded as inappropriate, yet sympathized when I pointed out the obvious flaws. Throughout that year I spoke to barely anyone and barely left campus. I’d often use a form of ‘stimming’, that involved wandering the corridors, allowing me to get to grips with my emotions and the environment.

A lot of the problem here, is the obsession with independence leading universities to take a strict non-intervention approach. When I was at uni there were arguments between the student union and management about the funding of societies and communal spaces – something the uni were rather stringent on as ‘no student could possibly have any problems satisfying all thier needs in a capital city, right?’. Support exists for disabled students in the form of DSA, but only two in five know that the grant exists before starting thier course. Even those who do, often don’t apply either because doing so is hard or they don’t feel that they are ‘disabled enough’ to warrant support. Another form of help I received was mentoring, provided by the National Autistic Society. This gave me a sense of security in that I could confidently talk to my outreach worker about how I was feeling. Problem being, universities tend to treat these two elements as a placenta to remedying all the problems autistic students face.

I don’t want to make my university time out as terrible. In my second year I joined a rock music society through which I made friends, and developed confidence. That’s the same year I became involved in student radio, hosting shows on music and politics and started writing for outlets like Buzz mag, all of which allowed me to put my ‘special interests’ to good use, and start enjoying my time at uni again.

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My next plunge into the abyss as it were came with everyone’s favourite life event of looking for a job. I don’t need to bore you with what a laborious process that can be. Just to say that my first interview was at HMV, and did not go at all well. I turned up wearing a suit, and froze after the question ‘give me an example of someone who you think provides good customer service’, realizing that I wasn’t at all prepared.

Even though I didn’t deserve that job, unconscious bias can happen in these process’. The ‘16% of autistics in full time work’ figure has remained static since 2007. Navigating the oftentimes awkward social encounter of the interview is difficult for a lot of autisitc people, and even getting to interview stage often features the challenge of networking. During my first interview, I remember struggling to make eye contact and making long pauses, which may have affected my chances, despite the fact that these signals were unintentional.

I discovered the Change 100 programme almost through a stroke of luck. Through that I was able to secure a placement in an organisation where I still work. In my first blog, I discuss how my answer to the interview question ‘what are you passionate about?’ focussed on combining my passion for truth in journalism, with my trait for being honest.

Despite encountering difficulties I realise my privileged position in comparison to some people on the autism spectrum. This next section casts doubt on the idea that people become ‘less autisitc’ as they get older, and seeks to explore how we can help autistic adults on the cliff edge…

Leaving Autism Behind?

You’d be surprised how common the narrative about ‘leaving autism’ is. I’ve even had it said to me by my elderly relatives that they ‘were’ autistic. The New York Times have a long read piece titled ‘the kids who beat autism’. As you’d imagine, I’m skeptical…

A lot of the ‘evidence’ for people losing thier autism is based off of case studies. One study by psychologist Deborah Fein , published in the Journal of Child Psychology identified 34 young people who had achieved a so-called ‘optimal outcome’ whereby they no longer met the criteria for being autisitc. So for example, they developed thier communication, facial recognition and language abilities to a neurotypical ‘standard’, as well as improving thier executive function – thier ability to process multiple stimuli at once.

Another study tracked progress in a group of 85 children they had monitored from the age of 2 through to 19. Of these, 8 no longer met the criteria for diagnoses by the end of the study, and required no extra support.

May I suggest however that considering both these studies were focussed on children, the results may be slightly clouded. That’s not to say the studies are entirely inaccurate. I’m willing to accept that among a minority, autistic traits may become less notable overtime. However, my reservation is that what looks like recovery might be learning to adapt to a neurotypical-majority world.

I don’t remember much of my childhood except feeling sensory overload. I’d frequently have panic attacks when I was on my own, loud environments like cinemas and events were often far too much for me to handle, and my communication with others was severely limited to the point where I just didn’t talk a lot of the time. You could look at me then and mistakenly say that I was ‘more autistic’.

However, as highlighted earlier, I still struggle with all those elements. I still flounder to interact on a person to person level, in a social environment, often resorting to repeating a series of leaned attributes which I know help to move a conversation forward. In loud, busy environments I can and do become overwhelmed. Still, I cope with them more often than not as I’m used to those situations, and can regulate my emotions. Whatsmore, I do not like being on my own, or being surrounded for periods of time, often switching between the two. So you understand, my emotional and sensory response to most stimulus is still heightened, yet I am helped through a series of coping and ‘masking’ abilities.

While theories about a literal ‘recovery’ from autism may not be widely believed, the idea that autistic people need less help as they mature, seems to be. The interacting which takes place in higher education, in public spaces or through work can take a serious toll on an autistic persons mental and even physical energy. Spending time alone acts as a means recuperate from that burnout. For that reason, I need the security of knowing that other people will understand when I’m quiet or uncooperative, because of an experience which has sapped my mental energy. Likewise, I do often need the comfort of having people to talk to and being around people who respect my differences, showing why education about autism is so important.

Even if, theoretically, autism were something that you could recover from, would you necessarily want to? To some autisitc people the answer to this question may be yes, but I’m not sure what a non-autistic version of myself would look like. By stripping me of my autism wouldn’t you also be taking away my special interests, and my unique view on the world?

A lot of the ‘evidence’ for losing autism is flimsy at best. Many of the people whose autism symptoms appear to subside still require extra support. A children’s evaluation centre in New York, found that 38 children diagnosed with autism over a 10 year period no longer met the diagnostic criteria, but still struggled with attention deficit issues, struggling to control thier mood and social anxiety. These showed up especially as they left childhood and began the difficult transition to adulthood.

Some parents interviewed in the New York Times article cited earlier called these “lingering” difficulties. And again, I’m not a scientist but may I suggest that while these people may have developed cognitively in such a way that dosent meet standard assessments of autism, should we really be saying that these people are not autistic anymore, if still display autistic traits? Indeed, the definition has widened in recent years to encompass ADD and to tie more of these traits under the ASD banner. If that means we can provide support to those who need help, I regard that as a positive.

“Autism colors every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person — and if it were possible, the person you’d have left would not be the same person you started with”

Jim Sinclair, An Open Letter to parents of autistic children

An Atypical Perspective…

Support can be a pathway to independence: I don’t want to speak in absolutes. It might be the case that some people learn independence from a lack of support. However, things like mentoring, support networks, understandable language, and ‘buddies’ to accompany me in crowded and social environments have all been cornerstones in developing my independence. I’ve often lapsed into old routines of dependence when I didn’t have any support. Obviously support can and should be altered at different stages in a stages in a persons development but treating it as a form of ‘hand holding’ thats antithetical to achieving independence is neither accurate or useful.

Talk of ‘recovery’ from autism is unhelpful: We can talk about learning to live with or better understanding autism but the evidence of a literal recovery is not supported by brain scans, and the behavioral studies only show a diminishing in some of the traits necessary for a full diagnoses. I feel at least until we understand more about how autistic people often ‘camouflage’ thier autism to fit in, and about all the different symptoms, talk of recovery may serve to deny autisitc adults the help that they need, doing more harm than good. Instead, we should be seeking to broaden our understanding of autistic traits so that we can better support autistic individuals, both through childhood and into adulthood.

We don’t need to ‘recover’: The coping strategies and emotional growth that occurs within autistic people is largely positive, just as development is to be welcomed in any person. Of course, theres also the activity of camouflaging your autism, which expends a significant amount of mental energy – part of the answer to that is to build supportive societies and systems. Even if we knew that recovery from autism were possible I ask this…why is not being autistic more of an ‘optimal outcome’ than being an autistic person with a career, friends and a level of independence? Why would struggling with social cues and needing to retreat occasionally be more important than the fact that they can interpret complex data, create mesmerizing art, or tell you about nature? Shouldn’t we be striving to make autistic people happy and successful, seeing autism as an asset rather than an Achilles heel?

React Responsibly: Normalcy and ‘Cancel Culture’

Earlier this year videos circulated on TikTok of people doing the ‘Autism Challenge’ which, consists of making fun of autism by speaking and moving “In a way an autistic person would”. The challenge was rightly met with uproar from charities, while groups like Reclaim the Net who argued that to shut those videos down would be an example of “cancel culture”.

An example that might hit closer to home for a UK audience is Ricky Gervais’ show Derek. After the show aired, objectors criticised it on the basis that they saw the show as mocking people with learning difficulties. Gervais denied that he’d ever intended the character as having a disability.

That said, this throws up some interesting questions about how we talk about the interpretation of the artist vs. the role of the author. Does it really matter what Gervais intended? If we object to the mocking of disabled people on Tiktok, should we also object when a popular comedian does exactly the same thing? and is the outrage justified?

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A group of 152 academics and celebrities recently signed a letter condemning cancel culture. Interestingly, they started by praising the work of Black Lives Matter and saying that Trump represents a threat to democracy. This wasn’t an immature denunciation of ‘canceling’. Rather, the letter alleged that:

“While we have come to expect this on the radical right, censoriousness is also spreading more widely in our culture: an intolerance of opposing views, a vogue for public shaming and ostracism, and the tendency to dissolve complex policy issues in a blinding moral certainty”

Harpers magazine, A letter on Justice and open debate.

Here’s where the issue becomes muddled. The letter has been criticised for being too vague. No one would deny that Weinstein deserved ‘cancellation’. If we’re referring to people with opposing views, what sorts of opinions? Do Info-Wars count? an outlet who’s conspiracy-babbling has led to literal acts of terrorism. Or are we referring to figures like JK rowling and Graham Linhen who have made uneducated comments about Trans people, leading to some debate as to if the backlash really counts. No one, it seems can agree on a definition or on what cancelling is justified or unjustified.

Heroes vs. Villains?

I’ve been tempted to refer to what has happened to some creators as ‘cancel culture’ in the past, yet the term frustrates me. Its like ‘fake news’, which describes ideologically motivated untruths circulated on social media, but does nothing to describe how misinformation is so prevalent:

During my dissertion I interviewed Nick davies who famously investigated the second phase of the phone hacking scandal. He pointed out that:

“The internet has allowed non-journalists not only to consume the news that fits thier prejudices but also to generate it, thus creating self-reffering whirlpools of misleading information in which falsehoods are exchanged within groups with the effect of reinforcing prejudice. If you see those two process’ interacting you see that we are entering an era of information chaos”

Nick Davies

I think we can also apply this logic to ‘cancelling’. On much of the internet, debates lack nuance. Through a process known as abstraction controversies are reduced to generic statements. So – and I say this as someone who really does not like Gervais’ comedy – the statement ‘Gervais presented an offensive and ill-informed portrayal of autisitc people’ becomes ‘Gervais is an abelist’. Using this process we go from criticisng a persons work to insulting and smearing the creator.

Like being in a busy room, reading about ‘cancelling’ results in sensory overload. With my autism, its easy for me to see the world in stark terms, and to react as if I’m in a play of heroes and villains.

Jon Ronson excellently explores this concept:

“I favour humans over ideology, but right now the ideologues are winning, and they’re creating a stage for constant artificial high dramas, where everyone is either a magnificent hero or a sickening villain. We can lead good, ethical lives, but some bad phraseology in a Tweet can overwhelm it all – even though we know that’s not how we should define our fellow humans. What’s true about our fellow humans is that we are clever and stupid. We are grey areas”

Jon Ronson, So You’ve been publicly shamed

An example where I think this can be applied is with the play ‘all in a row’ where the autistic character, is portrayed by a puppet. Upon debuting, more than 12,000 people signed a petition arguing for the shows cancellation saying that the decision not to cast a real life actor “dehumanizes autistic children”. Do I think that the decision to cast a puppet was misguided? yes. Do I think that the intentions of the writer were bad? of course not.

For clarity, I’m not saying that you can never judge a persons personal attributes by thier actions. You can, especially when that person has a large degree of power – e.g Trump – or they consistently refuse to learn – e.g JK. Rowling. However, with our pervasive thinking we often end up shaming well intentioned people when all that’s required is criticism and a willingness to engage in a conversation.

Audiences and artists

“I am the son and the heir of a shyness that is criminally vulgar. I am the son and heir of nothing in paticular. You shut your mouth, how can you say I go about things the wrong way. I am human and I need to be loved, just like everybody else does”

The Smiths, How Soon is Now?

The Smiths acted as a champion of the outsider. That was why I was baffled when thier frontman, declared his support for the far right ‘For Britain’ party and started repeatedly posting white supremacist videos to his social media. Its easy to see how this might do damage to the Smiths original point, and leave people who were fans feeling betrayed. Make no mistake, Morrisey is a racist and we can make a judgement about him based off that.

That’s quite a pertinent point. We’re talking about stigma attached to certain points of view, right? But what about stigma attached to identities. Can you be ‘cancelled’ just for being yourself? Because a lot of people in minorities would liken the experience of discrimination to that of being isolated and shut out. Autistic people can definitely feel that, especially those who haven’t been diagnosed, and struggle to make sense of themselves. As the Interactive autism network says, a lot of the stigma attached to autism can invite “a loss of a feeling of normalcy”.

In response to the kind of ‘transgressions’ we hear from Morrisey, its quite common to hear calls to ‘separate the art from the artist’.

This demand links to the theory ‘death of the author’. In his essay, Roland Barthes argued that a piece of work and the creator are unrelated and that authorial intent dosen’t matter. That “Literature is the trap where identity is lost, beginning with the very identity of the body that writes”

However, just as the Smiths are rooted in a counterculture of being welcoming and open minded, so is every text informed by the context in which the author writes. Separating art from the artist dosent work in that a representation of autism from the 1970s is likely to be different to a representation today:

“Literature can impact on society, either effecting or reflecting change in views. The way humanity thinks has not stayed uniform, and literature is constantly evolving. To say that there is nothing ”original” in the often rebellious ways people write to enact change or voice opinions that have been suppressed doesn’t seem right”

Idid’ntwantanyflowers blog

Sometimes the anti censorship movement deserves lambasting, especially when people like Morrisey defend thier bigotry. Still I’m aware that those views do not represent everybody who resents public shaming. The same nuance applies to social justice crowd. The culture of mob justice can be dangerous in the wrong context. However, empowering minorities to speak out against harmful representation or certain figures in the public eye, can do as much good as harm.

To overcome the negatives, we should embrace the new wave of entertainment that seeks to learn from its own flaws. We can see this approach in two things I’ve been enjoying: the musical Hamilton, and the Netflix show Atypical. Both of these have faced ridiculous calls for cancellation. Despite that, the creators have often tried to engage with critics, to understand and even act on the limitations of their work.

What about those who have refused to apologise for thier mistakes or are bad people? I think a good way to approach this is not to be judgmental of other fans. Different people will draw the line in different places. As a music fan, I no longer to listen to the music of Kasabian or Morriseys solo work. I do still listen to The Smiths and Brand New, largely because the music means enough to me to still find comfort in. I’m sure there will be many who still are still inspired the Harry Potter books, which goes to show that even without crow-baring the artist away from the art, there are ways we can reclaim that which we love.

An Atypical Perspective…

Debates too often lack nuance: I often feel like I’m in a constant battle between two sides of myself: the side that’s idealistic and wants to frame everything as a war between good and evil, and the side that has an eye for detail. This is why I’m frustrated when debates – particularly online ones – take a surface level approach to criticism using attacks and misrepresentations in order to insult an opponent. I’m well aware that its rarely worth debating toe to toe with bigots or ignorant people. However, I still consider criticizing their ideas in a detailed way useful and necessary.

You can’t (entirely) separate art from the artist: Personally, when I find an album or a book I like, I want to know everything about the creator and where they got thier ideas from. An artist always puts thier experience into thier work. Its why ‘rain man’ – a film that was made early in our understanding of autism, differs from ‘the good doctor’ – a show which, while flawed, paints a detailed picture of autism. The demands to ‘separate art from the artist’ ignore the social significance texts have to thier time period, and stops audiences from engaging with creators in a way which might be educational.

There should be more communication between authors and audiences: This will help us identify artists who care about thier representation, and audience members who have legitimate criticism. Take Atypical: after the first season the show received criticism for portraying Sam’s character as sort of an archetype of every autistic trait. In response, the writers listened, engaged with autistic critics of the show and corrected thier mistakes. Manuel Miranda despite not making any major changes to Hamilton, has been very welcoming of criticism. This approach may help to create a less noisy media environment whereby creators seek to learn from audiences, and criticism is handled constructively.

Contrasting Fascinations: On Obsessions and Special Interests

If you were to ask me what my main ‘special interests’ are I will quickly say music and politics –

I first became engaged in politics around 2011 when the second phase of the phone hacking scandal was wrapping up. Having watched the events transpire and done research to fill in the gaps, I was shocked that a countrys press could have engaged in illegal activity and inspired by the fact that a small number of good journalists could face up to a media conglomerate. The conceit that news corp had bribed and gagged the victims, that everybody at news of the world knew what was going on and that the met had sat on evidence of thousands of phones being hacked into was befuddling to my naive mind. All the way to the revelations about Milly Dowler and the 7/7 attack victims, I felt caught up in the intrigue, having a compulsion to know about every tiny detail.

At the same time I was first coming to develop friendships, mainly through an explorer scout group that I was part of. While I still found socializing incredibly difficult, music gave me a subject I could talk with other people about, as I’d been collecting records, taking my lead off of the music my parents liked: Queen, Pink Floyd, Black Sabbath. When I get into an artist I become intrigued to know the precise musical movement they form a part of, and where they fit within the tapestry of music as a whole. Through that realization, I eventually joined communities of writers, and music journalists who were just as enthused about the subject as I am.

In a world that’s increasingly difficult to make sense of either through the anxiety brought on by societal events, changes to my routine or the heightened sensory environment I’m living in, music and politics act as a constant – elements that are always there but are constantly evolving in different directions, which can be charted and analysed, lending a sense of order and intrigue to my life.

This blog will look at thier uses, thier pitfalls, and more importantly the way we discuss autism with regard to special interests and obsessions.

Understanding Special Interests

Despite being branded a mainly autistic trait, obsessive and repetitive behaviours is something most neurotypical people do as well. Research from 2010 published in the Journal of medical humanities, found that despite struggling with communication many autistic people find a natural home in online communities where they can carve out identities.

More that this, the study found that the standard perception of neurotypicals within these groups is that they have communication problems, relying on generic means of body language that don’t actually convey emotion all that well. Some online groups for autistic people pointed to the neurotypical obsession with sports and sport operas, while one even came up with the name of a condition which they called ‘neurotypical syndrome’ which they defined as:

“ a neurological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.”

This might appear subtly mocking, but altering the way we think about the so called ‘normality’ of neurotypical mind, might provide a clue with how we think about the occasional obsessiveness of autistic people. We’re living through a time of climate change, pandemics, political upheaval and mental health crises. More people have been diagnosed as we’ve learned more about autism. More than ever, autistic people want a voice.

Responding to ‘Obsession’

In 2017 the student Damon Smith planted a smoke bomb on a tube train carriage. The device thankfully did not go off, though Smith was sentenced to 15 years in prison. As soon as it was revealed that Smith was autistic, information about his special interest in weaponry and mechanics flooded the news articles. Even the judge at the time stated that “I am influenced by your history of preoccupation with weapons and bombs, as well as by your condition, which makes it difficult for you to empathize”

While Smith was motivated by his special interest, the problem in the Judge’s comment is that it presents special interests as a symptom of a condition. Tory minister Oliver Letwin did the same thing earlier this year, commenting that national security is at threat by “some autistic person or some strange youth sitting in some place in the world who’s connected to our network by the Internet”. This shows an example of autistic people being defined by a stereotyped obsession as being ‘tech geniuses’, and that being presented as a threat.

Occasionally, Autistic people attract attention for the wrong reasons. In 2015, an autistic teenager Peyton Pruitt was arrested for sending bomb making instructions to someone he believed to be in IS.

Although rare, autistic people may be at risk of being radicalized. To explore this idea we need to explore the role ideology plays in terrorism and the idea of ‘lone wolf’ terrorists, who operate without significant contact with others. These people don’t need to spend years in militant groups. They just need to win themselves over on an idea.

Research by Clare Alley from 2017 points to numerous risk factors which may lead an autistic person to become radicalized. Obsessiveness and repetitive behaviours are given as one example, but this is in conjunction with”searching for a need to matter” or social connection. This demonstrates how special interests are important factors in the need to feel part of something: an urge that extremists exploit in thier targets for recruitment. Sensations of sensory overload caused by trauma can also lead to violent behaviour.

I’m using terrorism here as an extreme example – its easy to see how becoming too obsessed with any one lifestyle is negative. However, its frequently the way we choose to respond to these that makes the difference, both between how autism people express themselves, and – crucially – the consequences for autistic people who develop a passion.

Journalist Ian Birrel has done research into autism and more specifically the institutionalisng of autistic adults, sometimes after they become caught up on ‘special interests’. Its notable how they don’t necessarily need to be inherently harmful ones like terrorism or drugs, for this to happen:

“One mother told me of how her daughter also became impassioned over injustice, focusing on human rights issues with a moral clarity and vigour that drove away friends and freaked out their parents. As her anxieties intensified in adolescence there was inadequate support. She ended up in both NHS- and privately run hellholes, learning self-harm from other patients, secluded and restrained”

Ian Birrel. on the ‘cruel and destructive’ conditions children with learning disabilities have been kept in around Britain

Obsession can lead to dangerous outcomes but analysis of dangerous, obsessive acts committed by autistic people needs to go beyond pointing to the offenders autism as a reason. The point is not to shut people with special interests away or to treat them as a symptom but to have those discussions with support networks, with parents, with teachers, ans crucially with autistic people themselves so that they can learn to express thier interests in a safe way.

Harnessing Fascination

On a different note, it goes without saying that autistic people can also be inspired to do good in the world and throw themselves behind worthy causes. Case in point: climate activist, Greta Thunberg.

Her work teaches us as much about autism as it does about climate change.

Thunberg has expressed how she became depressed at a very young age when she realised the insurmountable challenges the human race is facing from environmental collapse. That’s what its like to be autistic for some. You see things through a wide angle lens, which inspires a mix of inspiration and exhaustion. Sometimes, the inherently political, societal lens some of us see matters through ends up causing us great inspiration and a desire to make the world a better place. It can also inspire distress and meltdown, as we grow attached to a passion, a cause a movement, and thus feel crushingly dejected to see matters take a turn for the worst.

However, its also through her autism and her activism that she shows people how it can be possible to think differently. She herself has admitted that her passion is partly down to seeing the world differently, and thus is able to rest her arguments in simplistic, difficult to refute language: ‘Politicians aren’t doing anything to safeguard our literal future on the planet, so whats the point of going to school?’ For this reason, her position as a public figure is important.

“It makes me see things from outside the box. I don’t easily fall for lies, I can see through things. If I would’ve been like everyone else, I wouldn’t have started this school strike for instance.”

Greta Thunberg

Its not just Thunberg. Plenty of autistic people have harnessed thier ‘special interests’ in inspiring ways. Los Angeles firm Auticon employs exclusively autistic people to work on and and tech innovation. Environmentalist Chris Packham, has a great documentary in which he explores how his autism has helped him, using that as a jumping off point to explore some of the autistic individuals making pioneering strides in tech and innovation. Indeed, some of the greatest inventors and scientists including Alan Turing and Albert Einstein have been rumored to have been autistic.

Really speaking, autistic people shouldn’t need to prove themselves in great ways to have thier special interests accepted. Don’t get me wrong, the voices of people like Thunberg can be important when autistic people are still being treated as a threat, and even shut away in dehumanizing ways.

Before I discovered my special interests in music and politics, I often felt quite cut off and isolated from my neurotypical peers. I still get that occasionally, but through my degree, my work, my music journalism, I’ve got plenty of opportunities to network and interact with people within those spheres. Whatsmore, my autism gives me a unique perspective, allowing me to bring something new to the table. It took a while for me to harness my autistic traits into something useful, and I’m still trying to work out how I can put them to use. Different autistics are at different stages in that progression. Its important that they have the opportunity to discover what they are good at and develop it in a healthy and liberating way.

An Atypical Perspective…

Neurotypical obsessions aren’t necessarily understandable: Something I’ve noticed from atypical traits is that they’re very expressive. This is due to the fact that we react in a hyper sensory way to stimuli, which also explains why we grow so attached to a song we like, or a hobby we enjoy. Contrast this with neurotypical traits, whereby that obsession with conformity often causes neurotypical people to communicate in a set of socially accepted gestures and tones which often make them hard to read, for autistic people anyway. I’m not sure what to suggest for this point, beyond the notion that neurotypes should perhaps be accepting when misinterpreted or not understood by an autistic.

Negative obsessions go beyond autism: This should perhaps read ‘all obsessions go beyond autism’ as its never the only reason we become fixated on a subject. However, its autistics who do bad with thier interests, that get a significant amount of media attention. Any interest properly focussed and understood can be used in positive ways, just as any interest which overtakes your life and which you receive no help with comprehending can be destructive. To begin to help autistic people develop thier interests as something positive we must stop discussing them as negative symptoms harmful to individual and societal wellbeing, and instead start talking about the massive opportunists that ‘special interests’ open up when properly nurtured.

‘Special interests’ have lasting positives: An interest in politics properly understood can open up pathways into campaigning. An interest in science can open roads into data or inventing. An interest in performance can help someone make inroads into art, music or theatre. We’ve seen how autistic people can achieve a lot with thier passion, and the unique insight they have gives them a new perspective on thier work. Sometimes an interest takes 15, 20, 25 years to properly find. My one piece of advise is to make sure you find opportunities where your passions can be properly expressed, but be prepared for that to be in places other than where you expect. I started off wanting to do creative writing. It wasn’t until later that I realised how much I enjoy journalism and being overly opinionated. That road of self discovery is one I’m still on, and one I will likely remain on for a long while!

Navigating the Unexpected: On dealing with change

Caerleon Campus

In applying for University, I took a different approach to most: I only had one choice. I get quite sentimentally attached when making a decision, to the extent that all other options end up being disregarded, and thinking about my future had already caused me a great deal of anxiety.

I’d applied for English and Creative Writing to study at a University in Caerleon. A few months after I’d got the grades, I received an email: ‘We regret to tell you that the course you applied for is no longer available’

Here’s an example of where I’d set up an expectation in my head, with a ‘what could go wrong attitude’ and felt it crashing down painfully.

They did offer me courses that weren’t too far detached from the one I’d applied for. However, my confidence then was extremely lower than it is today, and for better or worse I did not think myself able to stay in or even commute to Treforest. I do find myself questioning what would have happened if I had taken that route. Through these circumstances you end up developing a glib belief in fate by which you don’t actually believe in pre-determined pathways, but force yourself to see events in your life as predetermined by virtue of thier significance.

I ended up studying a foundation course for a year in Caerleon. During that time I grew my confidence massively, and developed an interest in media and journalism – which I studied in Cardiff for my degree. This decision continues to resound in my life today, and while I do not want to go further than that at this point, I am happy with where I stand right now.

I go back to this story as an example of navigating the unexpected. Its an example of where a massive change in circumstances, forced me to completely recalibrate my plans, and set me on a positive footing for the future – arguably more so than if that had never happened. And although the event caused me great anxiety at the time, it very much determined the path my life would take in numerous ways. This blog post is about navigating those unexpected events, and learning to deal with them mentally and emotionally.

‘Magical Worlds’

The science behind autistic people dealing with change is far from simple

There are theories to suggest that autistic people can learn about the changeability better than neurotypical people due to thier ability to think from the bottom up, rather than the top down. I’ve been through this before, but the basic premise behind this idea is that most people make judgements based on quickly computing past experiences, while a bottom up approach utilities detail first. This goes some way to explaining why some autistic people excel in the arts or data, yet are less adept at making quick, fast decisions based off of incomplete information about the precise subject matter. So the theory goes, the lack of expectation about how things ‘should’ work out, alters the way autistic people think about changes in thier circumstances.

Indeed ‘magical world’ theory, as its been titled proposes that autism’s most notable traits are manifestations of a lack of ability to predict ‘what happens next’. The name of the theory refers to the slight of hand which allows for the element of surprise to take place. Its also quite appropriate in that as a child, I’d often imagine magic in every element of the world, again owing to how my creative side allowed me to see the world differently.

However, heres the issue. The theory argues that the bottom-up approach to thinking is of great benefit to autistic people, in that it allows them to soak in and understand detail, going on to say that the same way of thinking underpins the way autistic people communicate, the hyper sensory way we physically and emotionally perceive the world, and – if you’ll bear with me while this blog gets confusing – our difficulty in accepting changes.

So, I bet at this point you’re probably thinking ‘hang on, so are autistic people good at adapting to changes or aren’t they’. I guess the first answer would be that no two autistic people alike. More than that though, there are lots of different types of change, and where different autistic people draw the line will depend on them. My dad who I see most weekends has a dog that’s by no means quiet. One weekend, Samuel Peeps for that is what we decided to call him (yes, most of my family is like this), was staying at the house of another relative. It took me about a day to notice, reason being that I was paying attention to my immediate environment, not what I expected that environment to look like. That said, I find large scale changes in my routine very difficult to adapt to.

While something like a change in our immediate environment may go unnoticed, a forced change in the way an autistic person lives thier lives might be incredibly anxiety inducing for them – a routine, we can predict and understand and without that sense of control its possible to feel overwhelming loss and powerlessness. On another note, normal communication requires a degree of predictive behaviour as it involves gauging traits like body language, tone of voice, mannerisms and reacting accordingly – a deficiency in prediction presents a different way of looking at why autistic people may struggle to understand conversational traits. Even the emotional and sensory ‘stimming’ we go through by rocking back and forth, flapping hands, fiddling objects could be interpreted as a way to manage and comprehend the unpredictable sensations and feelings which the world throws at us.

“Our predictive skills are what allow us to fruitfully interact with our environment and interpret observations in the context of what has transpired before. Without these skills, the world is likely to appear chaotic. This seemingly capricious environment induces anxiety, the feeling of a loss of control and, overall, a sense of being overwhelmed. Attempts to interact with the world, or to interpret it, will be devoid of the modulatory effects of prior context”

Kjelgaard, Autism as a disorder of prediction in a ‘magical’ world

There’s no guarantee that ‘magical world’ theory is correct as its based more on testimony and observation that on any kind of in depth psychological study. Regardless of that though, it presents an interesting way of looking at the traits in autism, our difficulty in habituating different sensations and traits, and – for the purposes of this blog – adapting to the unexpected.

Autistic Burnout

I started this blog by remarking on my tendency to get fixated on what I’m used to, and making clear the impact that a massive personal change in my circumstance had on me. Part of the reason I was so upset when this happened, is I’d bound so much of my hopes for the future and my expectations up in this one pathway. I didn’t really know how to think of anything outside of that, and didn’t want to. Quite appropriately, considering the course I’d applied for, I had a sort of picture in my head as to what my future would look like and was then asked to completely reevaluate that. There have been numerous cases of that process taking place in my life in different scenarios.

The weeks that followed focussed on talking to careers advisors, support workers, getting pushed this way and that by teachers and lecturers alike. The entire ordeal was incredibly emotionally draining and uncertain. It wasn’t until I spoke to someone I was friendly with who happened to work on applications for the foundation course, that any sense of optimism for the future was restored. During this process I was experiencing something, that I later realised as ‘autistic burnout’.

“Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate support. It is characterized by pervasive, long-term exhaustion, loss of function, and reduced tolerance to stimulus”

Raymaker et al. Defining Autistic Burnout

The discontent between expectation and ability is what I want to focus on here – I’ve already mentioned how sometimes preconcieved expectations can cloud my judgement, and how a disruption in that facade of order and peace can make my world seem chaotic. In a way, part of the reason I was so happy with the foundation course I ended up studying is due to the fact that it was in the location I had originally set my sights on and contained similar elements. The point though is this process involved cycling through options and making quick decisions and not having the ability to comprehend them. The signs of exhaustion were obvious and I found myself actively seeking solitude in order to just find some time to myself, and to escape from a world which seemed extra noisy and more disconcerting as a result.

This is something that can occur when an autistic person loses touch with a friend, loses thier job, is disappointed by a cancellation of plans, or suffers a major blow to thier routine. Look at the hashtag #Autisticburnout and you will find hundreds of people grappling with cases where circumstances have thrown a spanner into the works of thier expectations, leaving a void of confusion and anxiety. The term has developed its own culture despite the lack of a concrete definition or academic study surrounding the phrase. One thing I will add is that you get major burnouts like the one I’ve described which last a few months and then pockets of burnout which last a few hours to a day and which I experience quite regularly.

Dealing with autistic burnout is another issue, and one I’m still trying to work out for myself. The first piece of advice I’d give is not to overwhelm yourself in response to burnout. Don’t let yourself become further exhausted by trying to find a solution as fast as possible. Allow yourself a degree of retreat by engaging in hobbies and letting yourself temporarily forget about the disruption. Also importantly though, surround yourself in a support network of people who will not try and throw answers at you, but will listen to what you’ve been going through, while letting you express yourself. I personally find something that helps me is learning about myself, why I’m feeling the way I’m feeling and reminding myself that I’m not the only one to experience my emotions. When my thoughts won’t control themselves, I write things down in neat little paragraphs, sketching out routines for myself – making space to consider the solutions if that’s the nature of the problem, otherwise setting out my routine in a way which will allow me to best move on, or keep my mind elsewhere.

An Atypical Perspective…

Autistic people adapt to unexpected changes differently: The common example of this that gets mentioned is a car horn. Personally, one car horn might take me by surprise and make me jump. Others might be more sensitive to noises like that. Overall, while I don’t frequently notice small changes which affect what I’m seeing or hearing, changes to my routine or my environment make me feel a sense of uncertainty and fear. Understanding your personal threshold of dealing with change or the unexpected – or if your part of a support network, understanding another persons – is important as it grants that self awareness of knowing whats causing those feelings which arise from changes to our environment, which then allows us to regulate how we react to them.

Autistic Burnout is real (and distinct from other types of burnout): Burnout is a sensation everyone experiences, usually describing sensations of exhaustion, depression and doubt. This is not to trivialize anyone’s experiences. Burnout in any scenario is a horrible feeling to have. Here I’m specifically referring to the form autistic people experience whereby circumstances contradict or ruin our original expectations, past the threshold we can tolerate, thus leading to feelings of insecurity. These have the potential to ‘disable’ us or send us into spirals of retreat or anxiety, sometimes until a sense of order is resolved. Dealing with autistic burnout will first require more acknowledgement of its existence so more research can be directed towards the concept. More than that though, its important to have those support networks and coping mechanisms in place, especially for when burnout occurs.

Overwhelming environments require a societal and individual response: For those of you that read my last blog post, I noted how current circumstances have made our world less noisy and hectic, exposing how ‘sensory’ the world can be. For individuals its obviously beneficial for us to sometimes switch off when we are experiencing sensory overload, preferably before reaching any sort of burnout. For communities creating those support networks and buddy systems can be really beneficial. On a societal level, it might be worth questioning which elements of our world can we strip back, in order to detract from that sense of sensory bombardment. Roads rearranged to make for a more accessible city centre, less glaring lights and music in every shop, more accessible application forms – these are small changes which can make all the difference, and may help autistic people – and perhaps all of us – live less stressful lives, which will help us cope when we encounter changes in them.

A Remedy for Loneliness: Mutual Aid and Autism

I enjoy being around people,

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

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

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

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

Loneliness

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

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

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

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

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

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

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

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

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

Mutual Aid

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

Peter Kropotkin. Mutual Aid: A Factor In Evolution

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

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

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

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

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

Communities vs. Coronavirus, the rise of mutual aid

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

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

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

An Atypical Perspective…

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

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

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