Meltdowns and Shutdowns – Autistic Experiences

When autistic people are extremely distressed – either due to sensory overload, stressful social situations or something else – it can sometimes present as either a meltdown or a shutdown. These are two intense responses to distressing situations that are common among autistic people and often misunderstood by the general public. Without knowledge of how these work, well-meaning bystanders can often make things worse.

Meltdowns

An autistic meltdown is an outburst caused by overload or stress, resulting in a loss of control of the person experiencing it. This often resembles a child’s tantrum, with two major differences: a meltdown will continue regardless of whether others are present, whereas a tantrum is designed to get attention; and meltdowns can happen in adults as well as children, which can be dangerous.

Someone experiencing a meltdown may: become violent against others or themselves, yell and scream, throw things, run away from the situation without assessing potential dangers (i.e. may run into a road); or be unable to talk or communicate. This can be dangerous for autistic people of all ages, but particularly adults who may attract unwanted attention from passers-by or the authorities.

Meltdowns among children are often misconstrued as tantrums, and thus adults frequently do not bother to tackle the cause of meltdowns or understand the distress the autistic child is in. This means that potential solutions aren’t found, as the cause of distress remains such as an unsuitable sensory environment or bullying. Autistic children are often punished for meltdowns – despite these being uncontrollable.

Adult meltdowns can be even more dangerous. Police and other authorities will often view an autistic adult having a meltdown as a danger, and will react accordingly – often in ways which increase the person’s distress and escalate the situation. This can be especially dangerous in countries like the US where police regularly shoot people they view as threats. Even if nobody is hurt, meltdowns can be intensely embarrassing one the person has calmed down and recalls what happened.

Shutdowns

Shutdowns appear as the opposite of meltdowns, however are often caused by the same things. Different autistic people will experience shutdowns or meltdowns more often; some will almost always react with one while others may react either way. In a shutdown, the person becomes silent, non-communicative and will often block out the world entirely.

An autistic person who can normally speak may become non-speaking during a shutdown; or may be unable to type, point, communicate or acknowledge the presence of other people. It may present as an unwillingness to answer or look at other people, however the person often is unable to do these things, or connect with the world at all while in the process of a shutdown.

Shutdowns are the ‘freeze’ reaction, while meltdowns are fight-or-flight. An autistic person experiencing a shutdown may come across as rude, as if they’re deliberately ignoring you. Inside the person’s mind, there may be a calm after the storm, shutting out the bad things in the world that hurt them and existing in a state of bliss separate from reality. This may seem better than meltdowns, but it makes functioning in society hard – most bosses wouldn’t want employees to become non-responsive periodically.

My Experiences

When I am having a meltdown, the safest thing to do is leave me to calm down on my own. When people put pressure on me to explain myself, or try to touch me, I react by becoming increasingly distressed and unable to communicate, which increases the danger that I may become violent or run somewhere dangerous. Interfering with an autistic person mid-meltdown has a high chance of escalating the situation rather than helping.

I experience meltdowns far more often than shutdowns, but thankfully far less often than I did when I was younger. In school, when I was being constantly bullied and tormented, they were excessively frequent which presented as severe anger-management issues resulting in violence and loss of friendships. Now, they are much tamer, and less frequent, due partly to avoidance of overwhelming situations, and partly to sheer terror of the consequences.

If I feel I’m getting overloaded, and about to have a meltdown, the safest thing for me to do by far is leave the situation immediately, regardless of what it is. If that is impossible for whatever reason, I should put on noise cancelling headphones, shut my eyes and go somewhere I can be alone where nobody is able to burst in and interrupt me – such as a locked toilet cubicle.

Things other people could do to help me if they’re present when I feel overload coming is to help me leave the situation, to never encourage me to stay a little longer, and to leave me alone to work through it and calm down. It is much better to leave me alone than to stay in that situation, as I’ll find arbitrary things annoying and staying only increases the risk of a negative outcome for all present.

Unlearning Embarrassment

[Image description: a yellow flower in front of some stones with some white flowers to the side.]

Autistic children are taught to suppress their natural behaviours. There may be autistic children raised in a way contrary to this, but they are the exception rather than the rule. We are taught to suppress our natural instincts and behave in a manner seen as more acceptable in our society. One of the tools used to coerce autistic people into making this change is embarrassment.

I can speak only for myself when I say that I had no concept of embarrassment before I started school. I was aware that adults considered such a thing to exist, but I did not view it as a feeling I could personally experience. There is ample evidence in terms of videos of conversations with my parents to back this up, should my memory of those early days prove insufficient. But it changed once I started school.

I was actively encouraged to feel embarrassment by those adults around me. Whenever I behaved in a manner (and this was before I was diagnosed, mind you) that was deemed not socially acceptable, I was asked “aren’t you embarrassed?” For a long time, my answer was no, because I didn’t understand the concept. But I started to. There’s only so long that people can say “you’re so embarrassing” before you start to – at the very least – associate the concept of embarrassment with certain behaviours.

And in this way, I was trained to be ashamed of myself, and my nature. I was taught there was something wrong with me, that unless I changed who I was, people would not want to be associated with me and would laugh at me. Which, in our society is unfortunately partly true. But constantly feeling embarrassment about one’s own nature leads to serious problems with self-esteem in the long term, problems I still struggle with today.

I have a lot more confidence than I did in 2014 when I left school… but far less than I did in 2002 when I started. Six-year-old me was a happy, confident child, excited to start school and make new friends. Only a year or two later, I’d completely changed, and it was the attitudes at school which did it. Now, my lack of self-esteem still affects my life on a daily basis as a result of how I was treated then.

This link between embarrassment and low self-esteem seems fairly clear – if you believe that you behave in a way which is shameful, you will not hold yourself very highly and will not expect others to do so, either. Teaching autistic children to be embarrassed is teaching autistic children to dislike themselves. This is something that will stay with us for the rest of our lives, and affect our prospects.

Changing autistic behaviours is seen by many in the neurodiversity movement as fundamentally wrong, and I agree. But it is not only the act of changing the behaviours that is wrong, but also the way they go about it. Some methods used, such as ABA, have been known to cause trauma, but even the less extreme methods, such as encouraging shame, can have long-lasting impacts on the lives of autistic people.

We need to recognise that embarrassment is used as a tool to control the behaviour of autistic children and adults alike, and recognise this as a form of coercion and harm. Autistic people continue to be hurt every day because of internalised shame due to this form of control, and if people are serious about changing the outcomes for autistic people, we need help to unlearn the embarrassment that has been trained into us from childhood.

Thoughts on coronavirus lockdown

TW: covid-19, suicidal ideation, violence, alcohol abuse

This is my worst nightmare. I find everything both sides of the lockdown debate say infuriating. I can’t oppose it, and I can’t support it. I’m stuck in some kind of angry limbo in which all I can do is try and pretend reality doesn’t exist and deny my own emotions or they’ll overwhelm me. This doesn’t feel quite real, but more like the middle of an apocalypse movie where all one has to do is wait for the heroes to come along and magically save the day.

Around ten years ago, I remember comparing possible crises and rating them on a scale of whether or not I’d be able to cope with them. Pandemic scored the lowest on my coping scale. I was right in my analysis of my own abilities, even as a young teenager, because this is my idea of hell. In fact, it is worse than I anticipated, because there’s a duality to my current situation that I couldn’t have predicted.

On the one hand is what I saw back then: I’m terrified of germs and getting sick. I don’t cope well with even a common cold, I can barely function, I don’t want to speak or move or eat or sleep or exist. I had a bad flu over Christmas 2019 and I was making dark half-jokes about how all I wanted for Christmas was death. Even before all this, I didn’t like people touching me and I’ve been looking for an excuse to wear a face mask since I discovered that it’s socially acceptable in some other countries.

So naturally, given this, I want it stamped out as quickly as possible. I don’t want to take any risks, and I am furious at everyone breaking lockdown – a sentiment common among the disability community online. It follows on from this that I should support a particularly strict lockdown for a particularly lengthy period of time, and oppose all efforts to lift it within the UK, and I should be thanking any deities that may exist that I am not living in the United States where there hasn’t been a proper lockdown at all in many places.

Yet there’s another side to my situation that makes this rather more complex. I do not feel entirely comfortable going into explicit detail on all of this, but there is something that is worse for me than the fear of sickness – and that is being constantly bombarded with loud, disruptive noises I cannot escape from. Probably most of my friends that I speak to regularly have heard me wish destruction on my local area.

First, my neighbours. I live in a suburb where everyone is incredibly competitive to have the newest amenities, the nicest gardens, etc. This means that they have viewed lockdown as the perfect time to bring out ALL THE POWERTOOLS. It’s near constant whenever it’s not raining heavily. Lawnmowers, electric hedge trimmers, hammering, drilling, sawing, grinding metal… it’s a cacophony of loud noises. It doesn’t help that something in my past means that construction sounds are a trigger for me.

Next door has, on several occasions, been using something so loud that I can hear it through my expensive high-quality noise-cancelling headphones. I’m having a meltdown a day, which I haven’t had since before puberty. It sometimes feels like they’re conspiring to psychologically torture me and I’ve just had to go out because otherwise I would end up hurting myself – or someone else.

Then I’m extremely sleep deprived as well because a member of my household is continually purchasing alcoholic beverages which he then consumes which cause him to make rather loud screaming noises in his sleep. So, neighbours all day, screaming all night. If lockdown lasts much longer, I will not survive it. I am hoping to move out but money could be an issue, and I’d really need to live alone because of my sensory sensitivities.

So, despite my terror of getting covid-19, I’ve still ended up going out, sometimes doing things that are technically against the rules. Protests for one thing, going indoors to a friend’s house, and I have travelled more than five miles before they stopped that. And I know I should feel guilty about this, but I would be in an even worse situation than I am mentally if I hadn’t done that.

It’s a careful balance. And what is awful and tragic is that no matter what we do, we won’t be able to save everyone. If we lift lockdown, the virus will kill people. If we keep strict lockdown, people with poor mental health will deteriorate and the suicide rate will jump up more than it likely already has. This is an awful no-win situation, and I pity everyone with the misfortune to currently be in government and needing to make these decisions.

What Being Autistic Means For Me

This week is World Autism Awareness Week, and though I’ve been exceptionally busy organising demonstrations in support of Clara Ponsatí, working on my dissertation and just generally doing more than I can cope with, I’ve decided to write about what I want people to be aware of about my autism.

I will begin with repeating what autistic people keep saying every year – awareness is not enough to make autistic people’s lives better. We need acceptance. Acceptance of who we are, of how we are different, and of our natural behaviour. We need a shift of priorities away from trying to change our behaviour to finding ways to change society so that we are accepted. It should not be our job to act unnaturally to fit into a neurotypical world.

For me, social interaction in the way deemed appropriate by society is unnatural and difficult, but I can do it. Partly because it’s easier for me to fit in with the norms than to constantly challenge them, partly because I’ve only begun to accept myself recently, and it’s hard to break the habit. And while I can appear perfectly comfortable in many situations, this is often an act.

I am heavily involved in political activism. In the past seven days alone, I have attended the SNP National Council, where I gave a speech on supporting the UCU strikes; organised a demonstration in support of Professor Clara Ponsatí, who is facing extradition to Spain on politically motivated charges; and spoken to a number of journalists about Prof Ponsatí’s situation.

Not only that, but this was my first speech at a party council or conference and my first time taking part in actually organising a demonstration. At the start of the week, I had very bad telephone anxiety. In this week alone, I’ve been on so many calls, from journalists and for job interviews that my fear of phone calls has almost completely gone. This is a very unexpected success but imagine how terrified I was before I made the calls!

While I probably appeared perfectly comfortable in all these situations, I am now completely burnt out and exhausted. There’s still more to do; next week is expected to be just as busy, if not busier. I will probably get through it all; but the minute I get time to rest I’ll probably sleep for over 12 hours trying to get over all this stress.

The part of being autistic I still don’t like at all is the sensory processing disorder. Bright lights can be physically painful, smells like cigarette smoke feel like they are burning my lungs, and I hear all the sounds. I mean all the sounds. I can’t sleep when in a room with anyone else because their breathing is too loud. Thankfully, I have little interest in relationships.

In terms of light, I don’t particularly like sunny days. I am a fan of light cloud cover. The sun can be so incredibly bright, and with all the cars and metal objects in our world, the sunlight is reflected from every which way. In an ideal world, I would wear sunglasses all the time – but I do not have enough self-confidence to do so. Fluorescent lights are also absolutely awful. I wish they would be banned. They give me migraines where my vision goes blurry, which in turn causes a panic attack to go with the meltdown caused by the sensory overload – a double whammy which I cannot control at all. I’ve ended up screaming in public as an adult over this.

Smells can be bad too, particularly cigarette smoke. I hold my breath when passing smokers on the street, and I refuse to host guests at my house that smoke as I can still smell it on them. I was in Dundee a few weeks ago for an event, and when walking to a pub after, one of the people I was with started smoking and I almost ran away. Please, please don’t smoke around me, especially without warning!

The worst sense for me is hearing. I can hear everything. I am wearing noise cancelling headphones as I write. I am in the university library, and I can still hear every time someone takes a sip of water, drops a book they were trying to get from the top shelf, or types frantically on their keyboard. Construction work is the worst for me, the mere sound of a hammer can send me into a bad rage.

This is my father’s fault. He had an extension built over the summer between my first and second years of university and I still half hate him for doing it while I was home. At the moment, both my neighbours and my parents’ neighbours are building extensions and frankly I want to flee the country. I want to live somewhere with no immediate neighbours in the future to minimise the risk of this noise.

In terms of taste and touch, my taste is as sensitive as my hearing, but it is easier to avoid bad tastes than it is bad sounds. For example, I cannot eat spicy food. At all. It makes me scream and drink about four pints of milk straight from the bottle(s) to calm down my taste buds. Do not tell me to just try it. Just don’t. Ever. Touch is actually not that bad for me, although it may play into my desire to never have sex.

Since I’ve had depression, my executive function has been particularly bad. I can counter this somewhat by writing daily schedules. What I need to do changes too often to set up a repeating schedule, so I need to write the next day’s out before bed. I used to be averse to change as well, but like with the phone calls this week, overexposure has helped somewhat. I would not recommend this though, I wouldn’t have done it on purpose. It was very painful at first.

I don’t want people to read this, and be aware of how autism affects me, just to turn around and suggest techniques to ‘fix’ this. The sensory stuff cannot be fixed at my end. Avoiding triggers is the only solution that will work. This would be so much easier if people were willing to make accommodations to lessen the impact. Accept how I am and accommodate it. You cannot cure it.

In terms of social interaction, I would like to see a societal shift away from eye contact and small talk. At the moment, continuing to mask uses up less energy than constantly educating people. Once university, and all the associated stresses, is over I hope to be able to educate more and mask less as it is a better long-term solution. At the moment, that is not possible for me.

So, this is me, an autistic university student with depression, who masks because it’s less stressful than having people stare at me when I act autistic. Who hears all the little sounds people make and often wants to run away and find some silence. Who can’t eat spicy food or sit in a room with fluorescent lights for longer than fifteen minutes or walk past a smoker without wanting to vomit.

Be aware of who I am but acknowledge that is not enough. Accept me, accept other autistic people, accept all neurodivergent people. Know that being autistic will mean different things for every autistic person. Know that we will all present differently, from each other and from other points in our own lives. Don’t just campaign for autism awareness; campaign for autism acceptance too.

Autism on TV

Autism awareness campaigns operate under the premise that few people in the world have accurate information about what autism really is. And while acceptance campaigns are fundamentally a better idea, there is a distinct lack of awareness among certain sectors of the population over what autistic people are really like and the different ways autistic people can appear. These awareness campaigns, however, rarely present an accurate picture of the diversity of autistic people and our behaviour.

In 2017, there were a fair few TV shows focusing on an autistic person, all of which had their positives and negatives, although some more one than the other. I’d like to focus on four: Netflix’s Atypical, the BBC’s The A Word, the bio-documentary about Chris Packham Aspergers & Me, and the 10-minute clip from Sesame Street, Meet Julia. I want to talk about what parts of these I identified with and what I thought was good, but also what harmful stereotypes they continued to push, and all the negatives that come with that.

Atypical

Netflix’s Atypical was met with a negative response from the autistic community right from the trailer. It seemed to depict a horrifically stereotypical white male obsessed with having sex. This analysis was sadly quite accurate. The main plot of the show is the main character Sam’s quest to find a girlfriend.

Sam’s mother is the stereotypical Autism Mom, complete with parent groups, Autism Speaks fundraising, and autism being a “huge part” of her identity. I study mathematics and my mum doesn’t go around talking about how being a maths student is a huge part of her identity – because she’s not a maths student. Autism is a part of the autistic individual, NOT their parent.

The parent group shown in Atypical is exactly what you would expect – they lecture the dad on person-first language, frequently use functioning labels and there is one scene where they are icing cupcakes in the Autism Speaks colours. One of the parents also wears a puzzle piece necklace. The mother arranges “Autism Walks” for fundraising every year, presumably for Autism Speaks due to the colours but never explicitly stated. And as I said on twitter, the only person who seems to need reminding that autistic people are people is the mother herself.

The mother is not the only thing wrong with this show. During the show, Sam acquires a girlfriend, Paige. Paige seems ok with being locked in a cupboard by Sam, and also has a “card system” whereby Sam has three cards and when he mentions his special interest – Antarctica – has to give her one and can only mention it three times a day. That’s not a sign of a healthy relationship. Also, his best friend at work takes him to a strip club which again is wholly inappropriate.

Aside from all the autism stereotypes, this show is also terrible when it comes to gender stereotyping and heteronormativity. The mother at one point judges Sam’s sister Casey’s sweatshirt, telling her she should “flaunt [her] cute figure”. Sam also behaves in an abusive manner to women throughout which is never dealt with and seems to be accepted.

The show was not wholly without it’s relatable moments however. At one point, Sam paces around his bed because he’s stressed, which is very similar to the way I pace around the dining room table in my parents’ house, or the coffee table in my own living room. The actual meltdown was also quite similar to how some of mine were a few years ago, and the show does admit that autistic people can feel empathy. Sam also wears noise cancelling headphones, which is very relatable.

While there are of course a few relatable aspects to Atypical, overall it is not a good depiction of autism and not something I would recommend watching, especially if you’re not heterosexual.

Atypical – 3/10

The A Word

The second season of The A Word was broadcast on the BBC in Nov/Dec. I would say this particular autism-themed show is somewhat false advertising – most of the show focuses on the relationships of adults who happen to be related to an autistic child. I wouldn’t say autism is the main theme of this at all. The show focuses on the family of Joe, a five-year-old autistic boy.

This show is not about autism – it is a family drama which seems to use Joe’s autism as a catalyst for people having family arguments and separations. The most harmful aspect of this show is its continuation of the autistic kid causes parents to split up stereotype. Autism as the cause of separation is all too prevalent in fiction and we don’t need more of this. Parents don’t split up because of their kid – they split up because they are having problems with each other. Not all relationships last, that’s fine – but to blame it on their kid? No, that’s so harmful when the child grows up and faces that.

Joe’s special interest is music, and he frequently listens to it. When he’s asked a question, he will name a song and unless someone names the artist and year he won’t answer the question. He’s also depicted stimming and making repetitive movements. This all seems fine to me, it’s accurate enough as a depiction of autism.

It’s the attitudes of adults in this that is problematic. The parents seem to despise the word “autism” and use any euphemisms they can find. They frequently use phrases like “something wrong with him” to talk about Joe, and they seem visibly ashamed of having an autistic child. The sister also talks about how she has to stay at home because she is Joe’s sister and how she’ll be the only one there for Joe when he’s older – like autistic people can’t develop relationships outwith blood relatives.

Overall the show isn’t that great but it does have many more positives than Atypical, and provides a decent depiction of autism, albeit surrounded by unhelpful stereotypes from the adults in the show.

The A Word – 6/10

Aspergers And Me

As a documentary, this of course is spared the invented stereotypes that often plague fiction. I really loved this. I thought it was a fantastic documentary, really relatable in a lot of places and showed ABA to be the horrific thing it is.

I’m relatively unfamiliar with Chris Packham’s work, animals are not one of my special interests though clearly are his. He’s so knowledgeable about it and shows how autistic people can make a career out of their special interests that they actually enjoy which made me very happy. He also lives way out in the woods away from other people which I often wish I could.

In it, Chris Packham, visits the US to view what is considered autism “therapy” there. There’s some electromagnetic radiation “cure” therapy that seems like a potentially harmful scam, and then he visits an ABA school. It looks so bright and noisy like it’s designed to be as painful to autistic people as possible. The documentary also talks about the origins of ABA and deals with it in a way that shows that ABA is in fact harmful. I was so pleased to see this viewpoint broadcast.

It’s not perfect, he’s described as like an “alien” by his partner which we could really do without and there is an awful lot of talk about a hypothetical cure but overall this is a fantastic documentary and I would recommend.

Aspergers And Me – 9/10

Sesame Street

Even as a kid, I’ve never been a big muppet fan, so all I’ve seen of the much-discussed Julia is a 10-minute clip I watched on YouTube a few days ago. But it’s good. It presents autism in a positive way that’s accessible to kids, showing Julia to be just a bit different, and also acknowledging that every individual is different regardless of neurology.

The episode also demonstrates the sensitivity to noise many autistic people have by showing Julia being upset by sirens that she finds too loud – a common occurrence in my own life. It shows a meltdown in a considerate way and demonstrates that giving her time and space to calm down is the best approach.

Julia also stims happily in the episode, which is very validating to see, as stimming is often seen as negative in the neurotypical community, so to see positive happy stimming represented on TV is brilliant. The others also accept her the way she is which is refreshing to see (although sadly probably unlikely in real life).

Overall, it’s a wonderful episode and a fantastic depiction of autism in the media that I hope will change the attitudes children of an age to be watching it have to their autistic peers. It also shows an autistic girl which is fantastic as autistic women are often very underrepresented due to years of underdiagnosis.

Sesame Street’s Meet Julia – 10/10

Of course, what is being presented on screen is only one side of autism representation – there is a behind-the-scenes question of how many autistic people are involved in making these things. However, that is a question for another day.

The representation of autism on television in 2017 ranged from the terrible to the brilliant, but I am optimistic that we are making progress and the on-screen depiction of autism in 2018 will show more Julias and less Autism Moms.

Political Campaigning While Autistic

I developed a reputation in 2014 for being a dedicated and hard working political campaigner. On four separate occasions I heard people tell someone else that I was good at it and ‘enjoyed’ it. I have no idea where they got their information, but the notion of my enjoyment is fundamentally false. As people who have read any of my autism stuff will know, I frequently put on a mask and try to pass as neurotypical. It’s a false personality, created not of lies but merely omissions of fact, a neglect for the truth of who I am.

The mask I wore to canvass completely covered my truth. I was not me on those days, I was a good little activist, campaigning for Yes and later the SNP, saying exactly what I was meant to say. The politics of it was the only truth, after all if I didn’t believe it why would I campaign? But how I said it and when I chose to speak was an act designed to stop people from being put off by my true autistic self.

The first time I went canvassing was in March 2014 in the long run up to the September 2014 Scottish independence referendum. I was in my last few months of secondary school, at a time when I had few friends and an almost nonexistent social life. I would see people posting pictures on Facebook of all the things they’d done at the weekend while I sat alone reading. I had made my decision on how to vote in the referendum back in 2013, and I had become somewhat obsessed with reading about the referendum.

It was doing this that I found out about the Generation Yes campaign launch in Glasgow, seeing it as an opportunity to get involved with the campaign for independence, actually do something with my weekend, and possibly make some friends. And so I attended. Thus began my involvement in the independence campaign.

Over the course of the following few months I would campaign on a Tuesday night in East Kilbride, a town near where I lived, so as to avoid the houses of my school bullies in my own area. Once exams were over and I’d left school, the frequency increased massively. That summer I did two things with my life – volunteered at the Glasgow 2014 commonwealth games and campaigned for independence. Given the short length of the commonwealth games, you can conclude how much time I spent campaigning.

Given my lack of friendship and struggles with finding autism-friendly employment, in my desperation for something worthwhile to do and a way to pass the time I pushed myself to my limits with the campaigning. In such a polarising high-profile campaign, there were naturally a considerable number of people on both sides who felt incredibly strongly about it. Some of these people were prone to harassing campaigners from the other side on the street. I still had issues with confrontation stemming from my childhood experiences, and as such this was incredibly damaging and hurtful to me.

On days when such a confrontation had occurred, be it on the street or on the doorstep, I had to take the following two days to calm down, often shaking and crying and doubting myself and everything I believed in for several hours after I returned home. I entered a rapid cycle of campaigning until burnout then repeat. It was unhealthy, but I didn’t tell anyone because at the time I kept my autism a closely guarded secret.

After the referendum, I joined the SNP and became involved with SNP Students, joining their National Executive Committee in my second year of university. As part of SNP Students I again attended campaign days where we would canvass in the run up to the myriad of elections there has been since then. It was expected of me, and I didn’t want to let down all those who by that point believed I was an avid campaigner.

As the months passed, I gained new friends from university, who were not involved in political campaigning, and many of whom disagreed with my politics. Campaigning was no longer the only social life I had. And with this new comparison of activities, I discovered that I did not enjoy campaigning nearly half as much as I thought I had. The stress of having to make eye contact and small talk with a hundred people in a few hours may have seemed enjoyable compared to the loneliness of the nothing I’d had before, but now it seemed only to be stress.

This revelation showed me that canvassing is something that is inherently harmful to my mental health, increasing stress and anxiety and making burnout worse and more frequent. I began canvassing to distract myself from the emptiness I’d felt in my life for all my secondary school years, but at that point I’d have taken almost anything over being alone. Though physically capable of canvassing, it was harming me mentally.

Since those days, I’ve discovered the autistic community on twitter (I briefly joined some FB groups but there was so much confrontation and discord in them that it made the twitter arguments look like friendly banter) and begun to accept myself for who I am. I have made friends, lost a few, and made more. I actually have a social life that doesn’t involve campaigning or any kind of organised activity. And I know the truth of why I went canvassing – to fill a void.

There is a stigma around refraining from an activity for mental health reasons. Many people seem to believe that if you can do something physically then any mental reasons are excuses for laziness. This is something I’ve seen in political circles. Since I’ve done it before, I must therefore be able to do it now. This is based on the false premise that nothing has changed.

I am exhausted. All that life I said I have now is draining me. Academic struggles, the pressures of socialisation, and all that has happened since 2014 has exhausted me. In school I found academic work easily, and I had nothing else happening. That’s a lot more time for recharging. These days, during term time, I’m busy nearly every minute of every day and there is no time for a break. As such, my ability to cope with stressful situations is lessened.

Canvassing is the most stressful campaigning activity to me because it involves going to people’s doors and disrupting them in their houses. While I, a politics geek, get excited if a political canvasser arrives, others react in the way I do when it is someone selling something – irritation and resentment for the presence of a disturbance. Partly due to my experiences in school, I can’t stand it when people are irritated with me or resentful of my presence. On a street stall, people approach me, which makes it easier as they want to talk (and if they start yelling there will be someone else to argue with them).

To go canvassing now would be dangerous to me – if I was yelled at or personally insulted I doubt I could wait until I got home to burst into tears, and frankly that is not behaviour you want from one of your party campaigners. In my attempts to help, it’s likely that I would end up doing more harm than good if I try and canvass in the state I’m in these days. I can still post leaflets through doors or stand at a street stall, but I don’t want to canvass any more.

The line between ‘can’t’ and ‘don’t want to’ in this is blurred, to me it is both at the same time, but to some others they deny my inability and insist it is solely lack of desire. Right now I would like to make one thing clear: it is perfectly possible that I could go canvassing tomorrow and not burst into tears while I’m out. But if I did so, I would go home that night exhausted, climb into bed and sleep for about 14 hours while shaking in fear and stress. That would not be me being able to do it – that would be me hurting myself.

I need to make one thing abundantly clear – ability changes. What an individual can do today, they may not be able to do tomorrow. What I could do three years ago, I cannot do in 2017. Life interferes and changes things. It can hurt or it can help, but it never allows anything to stay the same.

Things may change again, and in the future I might find myself doing what I did in 2014, to the detriment of my own health for a cause I believe in. But don’t hold out any hope. I am not in control of the factors which affect my disability. As for right now, I’m not going canvassing and if anyone gets annoyed at me, I’ll just send them the link to this.

The Intersection Between Pride and Shame

There is a growing movement online around the concept of autistic pride. Many, though not all, of the autistic people I have become acquainted with online over the past six months or so are proclaiming their pride to be autistic, and talking about how autism acceptance is needed, not just autism awareness as so many organisations prefer.

Personally, I am proud of my unique way of thinking, so different from the neurotypical (NT) mind, and the way it enables me to be aware of things that NTs would not notice. I am proud of my ability to focus intently on special interests, which can be incredibly useful (if you pick the right special interest!). I’m even proud of some aspects of sensory stuff, like my ability to hear very quiet sounds or taste if there’s a slight change in a recipe.

But then I have a meltdown. I am greatly ashamed of my behaviour during meltdowns. It’s embarrassing and inappropriate, and it hurts those around me. It ruins friendships, and nine times out of ten it is completely out of proportion to the thing that triggered it. The behaviour is not justifiable in this world and meltdowns generally turn any argument I have into one which the bulk of the blame lies with me. This particular autistic trait has been the cause of the majority of destroyed relationships and opportunities I have behind me.

So how do I reconcile these conflicting feelings of pride and shame? In describing being proud of being autistic to a NT, that NT then will likely believe that I am also proud of my inappropriate behaviour during meltdowns. In admitting my shame around meltdowns, it becomes very difficult to discuss pride, as it is often taken as an admission of shame around autism altogether.

Recently, I had my first major meltdown since joining the autistic twitter community I now find myself a part of. And it made me rethink my eagerness to proclaim autistic pride, a concept I have only recently heard of. I used to be ashamed of my Aspergers, back in high school. Perhaps I was too quick to write off all my feelings from then, too quick to accept the whole without examining individual traits as things in their own right.

To me, autistic pride implies pride of the whole, not of a subset of autistic traits, even if that subset is a majority. So perhaps I should say I am proud of some aspects of being autistic. I find no pride in meltdown behaviour, no pride in the way my bluntness can often upset NT friends. I found no pride in the anger I felt because the other person in question did not accept “I’m autistic” as justification, following that meltdown.

In truth, it was NOT sufficient justification. My behaviour was unacceptable, but in the anger of the moment and with the influence of the twitter community I believed I could justify myself using something that was not entirely relevant to the picture. We cannot control meltdowns, but we can control whether or not we apologise for our actions during them after they are over.

Some may wholeheartedly disagree with this piece, and I accept that not everyone will share my views on this subject. But I personally cannot take any ounce of pride in a behaviour which hurts both myself and those around me.

Talking about pride around something with so many aspects as autism/Aspergers is a difficult thing to do. Any individual will surely have traits they are proud of, traits they are ashamed of, and traits they feel neutral about. It is not like pride over sexuality; being autistic has much more dimensions to it that my sexuality (grey-asexual lesbian), and each dimension is very different. It is more akin to being proud of yourself in general. The majority of people have aspects of their personality they are some level of ashamed of.

I do believe that autism acceptance is badly needed, but I don’t believe in personally proclaiming pride over a whole which contains aspects I feel ashamed of. I cannot separate the meltdowns from my autistic identity, and I will not be proud of that behaviour.