Here it is, the final of the 5 blogs I prepared for this year’s Pride month. And what a month it’s been!
Today, to give me some well-deserved rest, I’m sharing the video of me speaking recently at Autistic Pride online, which went out on the 19th of June. I hope you enjoy it. Below I’ve put the transcript. I will see you again next week, with a new blog. Hope you’re having a lovely end to Pride Month!
Have a good one!
Hi everyone, good to see you all here.
I’m Jorik, I’m a writer, a teacher and an autistic advocate for neurodiversity. I’m also queer, an immigrant and I have mental health issues. I live with my equally autistic partner and a large amount of cuddly toys with a variety of personalities and identities. This talk will be an exploration of autistic pride, as I try to place my work in context with the tenets of queer pride. Some of this will be adapted from previous work I did, so if you read or heard some of these words before, I apologise. I only have the one life to draw from, so I might repeat myself a little here and there. Also content warnings for discussions of mental distress, abuse, depression and medical abuse.
This talk doesn’t really have a title, because I had to cut all the stuff about the history of Pride for time’s sake. You can look that up somewhere else, though. To stick with the naming conventions I use on my blog, though, I’ll call it On Pride.
I don’t like the word ‘proud’. It feels weird to say, especially when talking about myself. I say it about other people all the time; I’m proud of you, I’m proud of you, I’m proud of you. It’s so important to hear, so I say it a lot. But about myself? I never grew up to be particularly confident or happy in my own skin. It’s more likely I would have associated pride with pridefulness, arrogance and evil in general during my occasional flirtations with catholicism scattered throughout my early childhood. .
I was diagnosed at the age of 8. My first words were ‘no, absolutely not.’ I was screaming through my tears. I tried pushing them back up with my fists, but there were too many to stop. The child psychiatrist tried to tell me, in kind words, that I was autistic. Because there were a few connections in my brain that didn’t quite link up right. It was October 1996, I was eight years old. My parents were surprised that I did, but I put up a fight. I was not going to be ‘one of those’ children. Instead, I internalised all the abuse and continued punishing myself for anything I did that showed I wasn’t like anybody else. In my head, I had two choices. One: I would shut up, take the pain and humiliation, not cry, not show anyone I was different, not be ‘difficult’, not be anxious, not be angry, not be depressed – but to be normal in every aspect of my life without complaints or backchat. Two: I would go into a home. I chose the first.
I grew up in Holland in the 1990s. In an interview I did a few months back, I referred to growing up queer and autistic in a place that did not welcome me. I never felt at home there. Not that I wasn’t told that I didn’t. I didn’t fit in, for several reasons, and people in Holland aren’t shy to let you know that, to your face. I received homophobic bullying on a daily basis, even from complete strangers in the street; as a child in 1993, I apparently cycled in a very gay way. I still do, probably, but being 6’4” in England means I get less shit for it.
I ended up fighting my autism tooth and nail for eighteen years. Why did I do that? Because of how I was made to feel not just different, but lesser-than. On the one hand, I was told I was, just, different, but on the other, I was told I had failed. I did not want to be a failure, I wanted to be good enough. My parents, my peers and my school didn’t stop punishing me when I had a meltdown or patronising me when I would cry so much I’d be sick, diagnosis or no diagnosis. My father personified this inconsistency. He would praise me one day, glorifying my memory, perfect pitch and talent for impressions. He would humiliate me the next for making him look terrible by being what I was: a literal-minded, very obviously queer nerdboy who was terrified of him and of most other people.
I fought, pretending that I wasn’t affected by what other people said. The bullying stopped after my father ended his own life, as I was now fat, queer, autistic, had a stupid voice, was anxious, weird, poor AND a semi-orphan. I was too easy a target, the bullies gave up. They had some self-respect, I suppose. Still, I was lucky. I was white, nominally middle class and my mother cared. I never took my own depression, anxiety and suicidal impulses seriously, as that would be ‘being like my father’, which I did not want to be. Instead, I punished myself even harder whenever thoughts of suicide entered my head.
The reason someone can get Complex PTSD is a series of traumatic events, which means that the person’s selfhood has been structurally eroded. Many autistics are highly vulnerable to this. By the time my father died, when I was 12, most of the damage had already been done. By now, I despised everything about me. My body, my brain, the fact I needed to stop myself from kissing boys in school despite how terrible some of them smelled. That’s true actually, children stink to high heavens.
I tried several times to make a go at being neurotypical. I ingratiated myself with different groups of friends, I got into drama school (where I was kicked out after two years for being autistic) I started university, I drank, partied and did stand-up comedy. I crashed, hard, several times and beat myself up for failing. I got myself into hospital when SSRIs weren’t ‘curing’ me of what I now know was exhaustion, sensory overload and anxiety. Instead, I was given even more drugs and got assaulted on the ward by another patient. It wasn’t until I was 26, living in London, being so unwell that I was given an interruption from university and on an amount of sedatives that would make an elephant groggy – that my life changed.
I met Harry. They fell in love with me and became my partner for three years and is still my best friend. They were an autistic person who were not ashamed of who they were. They were (and are) capable, bright, funny, beautiful and they liked me because I was autistic, not despite it. I was, apparently, eminently clockable. I learned about how to cope and keep moving without constantly punishing myself. They were the first autistic role model I’d ever met.
When I was a child, autistic people were not part of society. The Netherlands in the 1990s, saw no autistic people publish books, appear on TV or even simply be visible, having a job. I knew no other autistic people and when I went to school, I made friends with the few autistic students in order that I wasn’t ‘the autistic one’. Autistic was an epithet, ‘autist’ was harsher and my father’s repeated shouting of the Dutch equivalents to ‘retard’ and ‘mongol’ still rings in my ears now. Harry was different. They were proud of being autistic as well as proud of being gay. Unfortunately, it was us against the world for a very long time.
It wasn’t until we’d moved to Oxford, then broke up, in 2017, that I started to create my own autistic family. After getting off the sedatives, I finished my Master’s, trained as a teacher, whilst trying to stomach seven unfair dismissals in a year due to my being autistic. I crashed, again, with yet another firing. That led to my sectioning. I wanted to get sectioned as punishment for failing to keep my job, as that was what had happened to my father a year before he died. The next day, the psychiatrist was baffled at seeing my medical history and the medication I was on. He said I should have never been put on the cocktail of medication I’d been on since 2012. He immediately changed my SSRIs. Five days later I got the job I ended up doing for three full years, teaching English as a Foreign Language. I was headhunted by Oxford Health at a conference with Tony Attwood and was employed there as an autistic activist. The book I wrote was selected by Penguin for WriteNow 2018 and is now in the editing stages for resubmission. I’ve been invited to join an all-autistic theatre company and I’m sharing my life with another autistic man. I’ve become a freelance teacher, autistic mentor and educator on neurodiversity. I have made a life out of being exactly what I was told meant I would be less-than-human.
All I can say is, I was lucky. I am still alive. When I lived in London, 8 stone heavier and on benzos, I had a meltdown in the street when the therapy I was supposed to receive fell through (I had moved to a different borough). I was lucky, as people thought I was having a bad time. If I hadn’t been white, I could have ended up in prison, tasered, been forcibly sectioned and injected with what could have been an overdose of antipsychotics or, simply, shot. I have been lucky that I was able to have a student loan from Holland to allow me to extend my studies. To have a family that is starting to understand how hard I’ve fought for every crumb. That I am able to work and thrive. That I have a gym where I don’t get sensory overload. That I am part of a thriving autistic community both in my local area and across the country.
As I said, it took me ages to find my tribe. I wasn’t able to keep friendships for very long, as my way of making friendships was always on the terms of the other person, or I would be masking: actively pretending to be someone I wasn’t, or both. With Harry and I, it was different. For years, it was us against the world. We lost friends, on both sides, because I was clearly unwell for much of our relationship.
At the end of 2016, my grandmother died. She was 94, it wasn’t a tragedy. She had lived on the farm since she’d married my grandfather in 1953, he’d died 5 years before her. I’d expected to mourn her, since she was getting on. But what I hadn’t emotionally accounted for was that the farm would be sold. This was the place where I’d spent most of my life, either on visits or actually living there. Another thing about me, I’m the first person in my family to go to university and my grandmother was just so proud of me; especially since she’d been taken out of school as a child in the 30s, during the depression, to work as an indentured maid. She barely started secondary school. When I would show her what I was studying she was just, so, proud.
I started thinking about how I would have survived as a queer, autistic child in her stead. Not much later, the book started to drip out of my brain like candle wax. I wrote in my lunch breaks and between the swimming pool and the café shifts I did between firings. Harry and I broke up and I trained as a teacher. In July 2017, I visited the Oxford Writers’ Circle, where I met my partner Luke for the first time and several other friends who I’m still in touch with. After my final firing, I went to Swansea to stay with Luke and read Neurotribes there, Steve Silberman’s book. I felt a huge connection. I’d bought it on the day of my graduation from UCL. Just after that trip, I started a job as a teacher, at a school called EF. I stayed for three years, a personal record. I kind of became their neurodiversity and disability agony aunt. I could bring my personal experience into it, as well as my growing knowledge of what it’s actually like to be autistic for people who are very different to me.
In early 2018, I proposed I go to an Autism event that was held locally, in Oxford, as a form of professional development. This was agreed, though I’d have to self-fund. I did and made damn sure I wouldn’t miss out on any of it. I would do research, primarily for the book but also on teaching. This was, oddly, the first time I’d ever been to a place that was specifically aimed at making autistic people feel comfortable. I’d been to a school for autistics before, but it was NT-led and they were using conversion-therapy methods there.
That day, I was headhunted by Oxford Health. I don’t know how that happened, but I later heard that my later boss was taken by the way I was making notes about EVERYTHING and the questions I asked Tony Attwood. A month later, the book was selected for Penguin’s Write Now workshops. By now it was called Teeming, which is the title it’s still got. I went to Berlin to do research for Teeming, since part of it takes place there. I also went out on the gay scene there. I know that my father had been to Berlin shortly before he died. I don’t know what he did there, but I certainly had way more fun than he ever did, by being exactly what he hated me for being; both autistic and queer.
At Oxford Health, I first did research on the state of autistic people’s lives in the community. It was horrifying to see, but also kinda beneficial? I mean, it always is to see that one’s perceived failings are due to external circumstances. I have written before about autistics being a lonely community, due to the lack of knowledge about how to find those who are like you. Being a person of colour is usually shared with family. Being gay, there are some spaces to go to, although furtive looks are difficult to discern for even neurotypicals.
I then started an autistic experience group, for Oxford Health, where I ran an all-autistic safe space for autistics to give feedback on the NHS. It was a huge success, I can say that now. There were no neurotypicals allowed in the room. It was an amazing place. We all could, and did, relax 100%. For the first time, I felt I was a genuine advocate. I needed an NHS badge to feel that I was, but I, you know, did. The imposter syndrome was slowly ebbing away. My friend Jo did amazing work in her MA dissertation on the experience of autistic experts by experience and imposter syndrome was apparently present in every single one of the people she interviewed.
Those days, starting in January 2019, were exhausting, primarily the wrangling with neurotypical members of staff. Added to that, I was still teaching 24 hours a week. I started attending events, wearing my Oxford Health badge. I met Wenn Lawson and my friend Rose in Didcot in November 2018. I went to the Parliamentary Enquiry on the Autism Strategy. I went to The Future is Gold-event in Manchester where I actually met Steve Silberman. You can find a picture of myself and Steve alongside Alan Turing on my website too, did I mention that I have a website? I was nominated for – and lost – an award in June 2019, at one of the most patronising and unintentionally ableist events I ever had the misfortune to visit. Well, maybe not all that unintentionally.
I went to the Autistica conference in June 2019, with whom I now work as a member of the Autistica Insight Group. On the way back, in a boiling hot train carriage, rammed full of people, I saw a lady sunk into her seat as I stood in the aisle. Her mouth was hanging slightly ajar, like a torn curtain on a broken window. I knew what that was. I’d seen that before. She looked like my grandmother after she’d gone. I walked up to her and tried rousing her. Nothing. I touched her face. No response. I thought I felt some kind of pulse. I called out for a doctor. Luckily, there was a doctor and a few nurses on the train. Though, despite regulations, there was no defibrillator on the train. I was a bit flappy, but I knew that I needed to act, since there was a possibility that she could have been saved. She wasn’t. Her name was Anne, she was 78 and she’d been dead for a while by the time we got on at Reading. Would I have done the same had I not been wearing an NHS badge? Potentially, but my words would have had less power. I was the person who the police interviewed back at Oxford station. The tears came after they’d left.
In July 2019, I went to Autscape, or, home, as I like to call it. I met so many wonderful people there, including some who are speaking today. I continue to be involved with Autscape, because they’re heroes.
Now, some of you may remember that last year, I was here in a different format, with the Autistic League. In early 2020, the axe came down on all work Oxford Health was doing on the autism strategy and I was let go. Why did I engage with the League? Because I felt I had to. I didn’t want to let my community down. So I worked my arse off all the way through the first lockdown, until a meltdown at this very event meant that I was fired from the League. I was severely depressed for 6 weeks and wondered whether to continue doing activism work at all. Surely I was now 100% cancelled for being a scumbag and a diva and everything that was bad about me. I wasn’t, oddly enough. Even with the person who fired me, I have had wonderful contact with everyone in the autistic community since then. I didn’t have to pretend to be anything I’m not in order to be accepted here. I am allowed to fail. I’d never, ever, ever experienced that before. I slowly started blogging again, moved to Reading and started doing Autistic training work, including this week, for the American Association of University Presses at Duke University in the US. Over zoom, of course.
How do we express Pride? We need to be visible. How do we get visible? Well, fight. Get on the streets, write to MPs, start a neurodiversity alliance at work. Be openly, visibly, proudly autistic at work, in school and in public. But what if you can’t do that? One way I love and that’s brought me everything I am doing now, is by making beautiful art. Whenever other autistics ask me what they can do to fight a world that is disgusting and racist and increasingly fascist; I say that. We have to make art that’s beautiful precisely because it is made in an autistic way. Culture is powerful and it is one of the few ways in which individuals can make a difference, in a radical way.
Not just that, we have to aim to make art that’s so good that gatekeepers won’t be able to class it under ‘specific interest’ or ‘minority interest’ but to actually be visible across society. I mean they still might, but there will be less of an excuse. My friend Harry is a stand-up comedian, and their perspective is that you can’t be mediocre when you’re marginalised. You have an even greater responsibility to make art that stands out, in the best way possible. That doesn’t sound fair, you might say; why should we hold ourselves to a higher standard, but I agree. It isn’t fair, but if a neurotypical wants to make bad art, there’s nothing standing in their way and they’ll likely succeed. Their style and approach to other human brains is already common and has an audience. The reason mediocre art succeeds is because it rewards those who are already invested in the status quo.
Now, before I finish, I know I’m just ahead of Peter Tatchell. It’s important to note that the discourse surrounding trans issues has become a culture war recruitment tool. I am currently working with Stonewall to extend the ban on conversion therapy to autistics, too, as even under this ban, we could be victim to conversion therapy if the provider calls it ABA, PBS, or just states we cannot be queer, because we’re autistic. If anyone is interested in collaborating on this, please contact me I am cis, as far as I know, and I need to stand with my siblings in order to fight the continuing oppression they face for having the temerity to exist. As I’ve said before, there is ‘something’ about autistics that upsets people, which is very closely aligned to the ‘I don’t know, he’s just a bit weird’ that homophobes used for decades to discriminate against lesbians and gays.
I encourage Mr. Tatchell to come out stronger in support of trans issues. It is possible to de-platform racists and deplatform transphobes, all at the same time, since these are usually connected. Unlike what was written by Kathleen Stock, a philosophy professor at the University of Sussex – I went to university at Sussex for a year, that is my shame, not hers. No, Kathleen, gay liberation is not at an end with marriage equality. This is a rightwing trope used in the Netherlands for decades to blame any homophobia present in society on muslims. Don’t fall for it, guys. Neurodivergent people are mostly LGBTQIA+. Potentially, LGBTQIA+ people are majority neurodivergent, too! When it comes to race, despite the people speaking here being overwhelmingly white, myself included, neurodivergence, like sexuality, has no race either.
We should not let the far-right dictate what we should and shouldn’t fight for. No-one is owed a speaking engagement. Including myself.
When I was writing this, it came to light that St Peter’s Hospital in London is no longer performing bottom surgery for trans men in the UK. This was the last place that f2m trans people requiring bottom surgery (such as phalloplasty and metoidioplasty) were able to receive it on the NHS. This is due to funding cuts, ideological in nature, that will cause queer people – a large amount of whom will be neurodivergent – to lose invaluable and life-saving healthcare.
To “debate” with someone who doubts the existence of my friends allows them to spread their murderous views about. These views then become normalised and push the Overton window to the right. Now, we can’t even have life saving healthcare. Once again, if cis queers can get married and be on prep, then we should be able to give our trans friends the healthcare they deserve. I beg of you, please commit to the welfare of the trans community. They’ve fought for your existence and mine, let’s repay the favour.
In 2019, I was working at Oxford Health. I was asked to represent the autism experience group at Oxford Pride. We were able to get a stall and I was there all day, representing the NHS. There’s a photo of me on my website, you can look it up.
With me were members of the experience group. A few of us went into the big parade, with the NHS banner, walking through the streets of Oxford, on this boiling hot day. My make-up was melting across my face. I was at the centre of this group of 8 autistics, carrying the NHS banner. Next to me was a 15 year old autistic who’d just come out to me as bisexual that day. I was the first person he came out to. We were walking past a picket line, where evangelical Christians shouted that God loves us and that we need to return to Jesus. He shot me a look, fear in his eyes. I turned to the protesters and laughed. “Just smile and wave,” I said. “We love you!”
Does that solve hatred and bigotry? Absolutely not. But for fear of sounding like David Cameron, it’s the right thing to do. I knew that if we’d be rounded up tomorrow, I would go. I won’t hide who I am, because 18 years ago, a frightened queer autistic boy needed someone just like me. I aspire to be exactly the thing I was taught to hate about myself. That is really super-super-queer and autistic as balls.
Now, with that poetic ending, I’ll hand you back to your moderator. Find me on jorikmol.com, that’s J-O-R-I-K-M-O-L dot com. Thank you so much and see you around. Bye everyone!