Natalie Joelle is a transdisciplinary researcher, creative practitioner, and activist at Birkbeck, University of London, funded by the Arts and Humanities Research Council and the Fund for Women Graduates. Her critical and creative publications can be found as part of Interdisciplinary Studies in Literature and Environment, the Routledge Environmental Humanities Series, Palgrave Studies in Animals and Literature, The Goose and Plumwood Mountain. Further information about her work is available at www.gleaning.info.
Natalie recited the following poems at the Autistic Pride Online Celebration on the 20th June, 2020, and has given permission for them to be shared below.
On May 25th, 2020, George Floyd was murdered by police officers in Minnesota, United States. His death has sparked demonstrations around the world, protesting against police brutality and institutional racism against black people. We have seen several counter-arguments made that we think have undermined that important message. The Autistic Empire therefore republished a Medium post, All Lives Matter?, in full across all of our social media to provide some context for people who genuinely believe All Lives Matter is a more inclusive term than Black Lives Matter.
This article was not written for autistic people per se, but we have seen a number of autistic people who have misunderstood the social context of Black Lives Matter and All Lives Matter and said things that have received angry, hurt responses and do not understand why. This article tries to explain the social context with step-by-step explanations, multiple analogies, statistics, and cartoons
You are invited to share this article in whatever format would be most useful. Full links are below.
The Autistic Empire is an international group of autistic people who come from all walks of life and ethnic backgrounds. We explicitly put diversity at the heart of all that we think about. Our founders were black, white and Jewish. When we were first discussing what we wanted the Empire to look like, it was not even a question that we would be anti-racist. We spent hours testing the skin tone of the hands in our logo so they could be read as the widest possible range of ethnicities (we hit on apricot). We wrote into our branding policy that the skin tone could be altered to something culturally appropriate for any regional or Black and Minority Ethnic events, even though we have never held one. We added Palestine to our drop-down menus even though PayPal does not recognise Palestine as a state and we will have to process payments manually if any autistic Palestinian does wish to join us. We do not wait for someone to feel excluded before we take action.
But we have very limited resources and we need the solidarity of others to make this work. In the two years that we have been in existence as an organisation, we have tried over and over again to reach out to black groups, black autistic people, and to talk to other autistic communities about black issues. We have been hindered by a lack of infrastructure and lack of understanding of autistic people, black narratives, and the specific needs of black autistic people. We have had black Citizens represent the Empire at events where they were made to feel uncomfortable as the only non-white person present. We have had black people working with us victimised by micro-aggressions at autistic events. It has been very frustrating.
The George Floyd protests and the racist reaction to them has been distressing for many of us to witness. The article below is part of our effort to express solidarity with people who will continue to experience racism and prejudice after the last protester goes home. The truly global phenomenon and sheer intensity of these protests have prompted many conversations within both autistic and non-autistic groups and communities about inclusion. We hope that these conversations will create a sustained effort to develop infrastructure that make it easier for us all to breathe. Black lives matter.
With thanks to Alex Mason for taking the time to write the original post and giving permission to share it.
Pablo is a television series for children about an autistic boy who uses magic crayons to create a world of imaginary friends who explain the world to him. Each character represents a different facet of autism. The cast and nearly all the writers are autistic, and topics include things like explaining zips, face blindness, and how annoying it is when your food mixes.
It’s really good.
In preparation for Season 2, which launches in September 2019, the Autistic Empire caught up with Grainne McGuiness, to ask some questions about the show and where it is going next.
Watching Pablo, the depiction of autism is spot on. How you did do that? I know all the writers are autistic, but they’re also all spread out. So how did you find them?
Grainne: I have an autistic nephew, and when he and my children were small, they all used to fight a lot. And one day I thought things would be a lot easier if everyone understood a bit more about what he was going through. I also noticed that while they completely accepted him for who he was as a human being, the other kids in preschool may have found his flapping a bit different.
And so I wondered could you create a television show for kids that would expose them to the traits of autism? And by doing that, could you create an understanding? And from understanding, empathy? And then maybe they would not fight so much. That has moved on to our ambition being empathy and acceptance. It started with some desk research, where I came up with an idea that Pablo was a very creative little boy, and that he created an art world of his imagination.
His friends in the art world were all built around fairly obvious traits. Wren is a flapper, Mouse is sensitive to smells and sounds because she has big ears and a big nose. Tang can’t control his limbs very well, and that works perfectly with an Orangutan. Noa doesn’t have a lot of control of his movement, he’s the dinosaur, and he knocks things over and walks through walls as his perception of space isn’t great. And he has a lot of anxiety and a lot of over-empathy. Draff loves facts, he’s a real fact boffin. He’s kind of black and white, and in season 2 he actually introduces a cousin of his who’s even more black and white. That’s his cousin Ze, who is a Zebra.
So the idea was to put the traits of autism on screen, in a fun and funny way that all children would enjoy. I got it commissioned by broadcasters, and then we needed to start the writing process. We found a really experienced children’s television writer called Andrew Brenner. He had written for lots of different shows, and he had a great interest in autism, and creating different stories in the kid’s space. You try to come up with original stories all the time, and new ways of looking at the world. It’s not just always about rainbows and birthday parties, although we do have rainbows and we do have birthday parties.
There’s 52 episodes in series one, and he had the challenge of where do you get the stories from? And so he started talking to people, networking with people on the internet. One person was Donna Williams (who’s now called Polly Samuels). She’s autistic herself and a consultant, so she knew a lot of people and had helped a lot of autistic people. And so Andrew built up relationships with them, asking about their personal experiences in life, and wondering if those personal experiences could be turned around into stories that would deliver on the aims of the show, and be interesting to the preschool audience.
And he just started to meet really fascinating and creative people, who had lots and lots of stories to tell. He nurtured them through the experience, which could be something as simple as being in a coffee shop and just being completely absorbed in the aroma of the coffee, and completely distracted from everything else by the aroma. Or it could be something like face blindness, where Pablo doesn’t recognise his mum anymore, because she’s wearing a fascinator-type hat for a wedding, and he thinks there’s a big purple bird in the house. He nurtured his new collaborators through the process of experience, and how can we turn that experience into a story for pre-schoolers. And then from that, a lot of them went on to write the scripts for the show themselves, and have become established writers for children’s television in their own right now.
That was a process that was absolutely full of joy, because everybody was so excited to be doing it, and everybody was so good at doing it. For the Kids TV space, it meant new writers, new ways of looking at the world, really quirky humour, and it was just amazing. We had the best time ever making this show.
Then when it came to recruiting voice actors, we knew we’d really like to work with autistic people. But how do we do that? We thought it may be hard, and we had a lot of production questions as there’s 52 scripts which is quite a lot. But we did our auditions, and we found our actors, and in all the years that I’ve worked in television, these were some of the most prepared. People who were delighted to be doing it, who wholeheartedly believed in the show, and who got into character and stayed in character.
By and large they over-delivered, and when we said thank you for coming and doing this, they said thank you for the opportunity. It just couldn’t have nice been a nicer journey really. And all that good energy begets good energy. Now the point we’re at in the journey is that we’re about to launch series 2. We’re going to have a 104 episodes of Pablo, and would like to do more. We’re developing a musical theatre show, which were hoping will come out Christmas 2020. Penguin are doing 4 Ladybird books, all based on the series. We’re also looking at other licensing and merchandising deals as well.
What’s the reaction been from the children who watch it?
Grainne: We’ve had so many lovely comments. The show has won loads of awards, it’s on all over the world, and it would only be that if kids wanted to watch it. Kids watch it because it’s funny, because they love the characters, because they find the stories fascinating. They don’t watch the show because Pablo’s autistic, they watch because Pablo’s a great character. Our hope is that by watching the show, they’re coming to love characters with autism. So then when they meet kids in school who think differently, in all sorts of way, then they won’t perceive that as being a barrier to making a friend.
How does your nephew you feel about it?
Grainne: He’s delighted. He’s a really lovely teenager now, he’s 13. He’s got a lot of changes going on.
The main actor is already 11, and he’s supposed to be playing a 5-year-old. How are you going to handle that going forward?
Grainne: We’ll have to see what happens. Right now, he’s great actor and he wants to continue. We would like to do series 3 where Pablo goes into school, because I think that’s the next natural step, and it’s so necessary. It’s important that teachers and classes and everybody in the school understands the perspective of autism. And I’m not convinced that there’s resources in schools. So really what we want to do is create season 3 where he’s in school, that challenging new world, and what his thought patterns are within that world. So that we can all understand what it would be like if you were five, on the autism spectrum, and going to school. I would love to do that. You know, life is full of change.
I really want to do the school one, because the bullying rates for kids on the spectrum is quite high. I think the statistic is 44 percent of kids on the autism spectrum say that they’re bullied in school. I would imagine that’s a very conservative estimate, because that’s maybe the kids that know they’re being bullied as well. We really need to tackle the early-years school space, because going to school if you have autism is probably hard enough without being bullied as well. So maybe we can fix the bullying bit.
I feel very strongly that there aren’t enough resources in school. There still isn’t enough awareness, and if we want acceptance then we need there to be proper inclusion. there needs to be more resources for special education needs in our system, and there needs to be more respect for all kinds of minds and skills. Schools are still very one-note. We need to celebrate all kinds of minds, and encourage adults and children to respect and get to know people who think differently because the world needs that right. The world needs people who think differently and aren’t afraid to say.
Finally: why the name Pablo?
Grainne: Because I thought it was a nice word to say. It’s an international name, so I thought it would travel, and also I thought because he’s an artist that it tied in nicely with Pablo Picasso. So there’s 3 reasons really.
PABLO IS ON AIR IN THE FOLLOWING COUNTRIES:
Viewers can watch on-demand on YouTube and through BBC Player and RTE Player. For more information visit @PabloTVShow on social media.
I first read about it on the internet in early 2007. It was on an internet forum discussing the phenomenon. It was also the first time I had heard of Aspies for Freedom.
I was immediately inspired by it and the tagline for the first year, which was “acceptance not cure”. Although I had accepted that I was different at that age (I was 23) I was more proud of things I had achieved in spite of my autism, not because of it.
I interpreted Autistic Pride as not only a demand for society to accept autistic people, but as a challenge to autistic people to accept themselves and each other.
Can you tell us about the history of autistic pride?
Autistic Pride day was created in 2005 on the internet forum aspies for freedom. The date of June 18th was chosen because it was the birthday of the youngest person on the forum at the time. The intention was to uplift and empower Autistic people, and enable us to assert ourselves in public, in the same way Black Pride, LGBT Pride and Mad Pride sought to do the same for their respective marginalised communities.
In 2006 Amy Nelson and a group of others in Aspies for Freedom had a picnic in Hyde Park, and in subsequent years many other people have organised picnics on that day, most notably Kabie Brook and ARGH in Inverness and Chen Gershuni in Israel. It was also celebrated online worldwide.
What made you choose to organise autistic pride events?
I first went to Autscape (www.autscape.org) in August 2014, and was immediately struck by sense of belonging I felt there amongst other Autistic people, and removal of the pervasive anxiety that I had felt amongst other people for most of my life.
I wanted to recreate this, at a lower cost, and something more public facing as well. as I felt Autistic people shouldn’t be hiding from the world.
I chose a small picnic in Hyde Park in June 2015 because it’s been a venue for radical political movements for centuries. People attending had the option of having a quiet picnic, or speaking in speakers corner.
What have been the highlights of autistic pride events?
There have been many. In the ones I have organised in Hyde Park alone, the highlights include:
-Having people gain the confidence to speak in speakers corner, and in front of an audience
-Having passers by who are autistic notice us and join in.
-The sense of belonging and community in these events
Watching Autistic people openly engaging with the world with confidence, and not being met with a hostile response, or if there is hostility from the public, having the confidence to face it down.
-Allowing people who are newly diagnosed, or see other conditions such as downs syndrome or mental illness as defining them explore the autistic side of themselves.
It’s also been great helping and inspiring other people to organise other Autistic Pride events, there have been many in the U.K. over the past two years (see the Autistic Pride alliance Facebook page for details).
What recommendations can you make for anyone else holding autistic pride events?
Start small and simple, in the first year, with no more than 10-20 people. Select a spot in an area in a park that’s central, easy to get to, and people have the option, to be extroverted and public facing, or quietly having a picnic in a secluded area. Make sure toilets and other amenities are nearby, and shelter in case the weather turns bad. With small events, ensure that people who attend do so at their own risk, and people who have trouble taking care of themselves should bring carers.
Advertise it on social media, or local media. Use the first year for experience, to determine what works best, and how much you can handle, then build upon it in future years.
As you gain confidence, you can approach local authorities and get the event registered, and invest in public liability insurance, and set up speakers, gazebos, tents and more. The largest Autistic pride events are in Reading, Chester and Brighton, and can accommodate up to hundreds of people.
Getting donations from nearby supermarkets are very easy, so feel free to do that.
While it’s best to have a small team organising Autistic pride events, in practice, it’s only one or two people who do so. So make sure you are aware of your limits and what you can manage by yourself.
Try and put in a detailed schedule of your event, as this reassures people who attend, but understand that it almost certainly won’t go to plan, so be flexible.
Join Autistic Pride Alliance, a Facebook group that functions as an unofficial hub for Autistic Pride organisers, who will be happy to give encouragement and advice.
There is no central authority that directs Autistic Pride, and each event has it’s own character and conception of what Autistic Pride is. The only real ground rules are: It must be led by Autistic people, No promotion of quack cures or normalising therapies such as ABA and no racism, sexism, homophobia, ‘high-functioning’ supremacy, or any other forms of punching down.
Be careful when getting involved with major charities. There have been many cases where autistic individuals have collaborated with charities on projects and had charities forcibly take them over.
How do you see Autistic Pride developing in the future?
I think over time Autistic Pride events will be get bigger and more organised. Autistic Pride Reading has now become a registered charity and many more may follow suit.
While some pride events may become major, involving hundreds of people, I’d like to see many small events up and down country, in small towns and villages, with a few dozen people each. This way it will reach more people and be more Autistic friendly.
I am very excited to see people doing more overtly public events for Autistic Pride, there was a march in Galway, and live performances in the town centres in Spalding and Chester. I would like to see this develop.
While people with high support needs and severe sensory issues attend autistic pride events, we can always do better at being inclusive and this will be an ongoing debate.
NT-led charities, both good and bad will try to co-opt Autistic Pride for themselves. They need to be constantly reminded that it’s an event led by and for the autistic community. In previous years we have successfully fought off attempts by the NAS and Autistica to co-opt Autistic Pride.
I hope that Autistic pride events will be a catalyst for building a local autistic community. In Tunbridge Wells I intend to found a support group on the back of Autistic Pride.
Text of a speech given by Joseph Redford, organiser of London Autistic Pride, on the 16th July, 2019.
Pride, as concept applied to marginalised groups, originated from the black power and black pride movement that sprung up in the wake of the civil rights movement in early 1960s America. After the Stonewall riots in 1969, gay pride became a concept. Both movements were reactions to the dominant cultures at the time, which saw black and LGBT people as subalterns rather than full citizens and human beings, whose role in life was to either hide, keep their heads down or assimilate. Both movements asserted the right to be conscious of your own dignity Rather than look to wider society and the majority culture to base their identity on, both movements looked to other sources of validation, African culture in the case of black pride, and other liberation movements in the case of LGBT pride, but they also looked to other black and LGBT people to base their identities on, and looked upon each other in order to uplift themselves. Instead of assimilating and keeping your head down, both movements publicly asserted the right to be different, and emphasised this difference through dress, actions and many other ways.
Over the decades other marginalised groups applied the concept of pride to themselves. Disability Pride came about in 1990, and Psychiatric Survivors Pride, which later evolved into Mad Pride, originated in Canada in 1993, which aimed, like the previous movements, to increase visibility and challenge the dominant narrative. Mad Pride is probably the most direct precursor to Autistic Pride, as the initial aims of the movement were to reclaim the identity of being mad from a negative onto a positive one, and also to reclaim terms such as ‘mad’, ‘nutter’ or ‘psycho’ from pejoratives to positive words words. While Mad Pride Day was officially on September 18th, events have been held around all the summer months worldwide.
In 2005, a decision was taken on the internet forum Aspies for Freedom, run by Gwen and Amy Nelson to bring the concept of Autistic Pride Day to the masses. The date of June 18th was picked because it was the birthday of the youngest member of the group at that time. Initially it was celebrated online, but in 2006, Amy Nelson led a group of people into Hyde Park on Autistic Pride Day and had a picnic there. This was quite a symbolic gesture and provided a template for public celebrations of Autistic Pride. Hyde Park has been a centre of public life for hundreds of years, and many radical movements originated there. Also, because it was in a park, people celebrating Autistic Pride were not cut off from the rest of society, autistic people were out there, in society, publicly and openly asserting ourselves, not hiding away either physically, or our hiding ourselves from society or each other.
I first came across the concept of Autistic Pride in 2007 when browsing on the internet, and was immediately inspired by this concept, and the strapline “Acceptance, Not Cure”. I was diagnosed with Aspergers at 11, and in my early 20s I had partially accepted my autistic nature, while I had embraced some aspects of my autism – for example I was proud of my ability to memorise, my attention to detail, my strong and focused work ethic, my strong system of personal ethics, my ability to think for myself and not get swayed by groupthink.
If someone had asked if I was proud to be Autistic then, I’d have said yes, but in reality I was more proud of doing things that people said I couldn’t do. There were still parts of myself I was ashamed of and wanted to hide and suppress. I was ashamed that I wasn’t as verbally fluent as others, that I struggled with speech and handwriting, and that I could be very emotionally sensitive, at times, both about people and inanimate objects, that I would have unusual facial expressions or body postures, that I could get overwhelmed by complex social interaction and could easily be taken advantage of, and various other things that weren’t glamorous or exciting. I tried to hide from the fact that these were also part of what I am and that they shape me just as much as my strengths. I was trying to succeed and get ahead in life in spite of my autism and I was still trying to force myself to live up to a mainstream conception of the ‘rebellious eccentric’ that wasn’t necessarily who I was. This is why coming across Autistic Pride meant a lot to me on various levels. Autistic Pride unashamedly demands acceptance from wider society, but on another level calls upon Autistic People to accept ourselves and everything about us.
The biggest factor that pushed me from supporting Autistic Pride to organising an event myself, was when I first went to Autscape in 2014. This was nothing less than a life-changing experience. For the first time in my life, I was in a physical space where Autistic people were in the majority, and weren’t supervised by non-autistic people. It was great being amongst a group of people with mannerisms, reactions and life experiences that were similar to my own. I went away from it feeling a sense of belonging and relaxation that I had very rarely felt before, and I wanted to replicate this experience as much as possible.
In 2015 I eventually got around to organising an Autistic Pride event myself, and have done so every year since then. Thanks to the efforts of Rachel Cotton in Reading, Kabie Brook in Inverness and many others, Autistic Pride has been brought to the attention of many more people. Although the first event I ran in 2015 was hastily organised, it was a massive success. About 20 people turned up. While most people just relaxed and enjoyed themselves in this newly created Autistic Space, some others spoke at Speakers Corner and others entertained the group with speeches or songs. Being there, I got the same feeling that I did in Autscape in 2014.
Although it’s incredibly stressful to organise, there have been many highlights for me during these events:
I have watched autistic people go to Speakers Corner – a loud, intimidating environment – and still speak about Autistic Pride, also having passers-by who are autistic themselves notice us and become aware of a wider autistic community, often these people have never spoken to another autistic before, having people who aren’t autistic approach us, but acknowledge that it is our space and are deferential and respectful to our ways of being, which is a big difference from how things normally are, often hostility is expected from members of the public but never materialises and the events themselves tend to be very peaceful, self-regulating and naturally inclusive of all.
Over the four years I’ve organised Autistic Pride events I’ve seen people gain the confidence to open up, and seen people visibly relax and settle into this new-created Autistic Space.
Autistic Pride has grown gradually over the years, but has expanded rapidly since last year: in 2017 there were 5 autistic pride picnics all over the country, but in 2018 there were 16, and I suspect there will be more this year. These were from Inverness to Exeter, from Cardiff to Cambridge, ranging from large festivals such as this one, to small picnics involving a dozen people. Autism Rights group Highland managed to fly their Autistic Pride Flag outside the Scottish government house on Autistic Pride Day last year. After the NAS and Ambitious about Autism tried to co-opt Autistic Pride in June, a group of organisers clubbed together to form the Autistic Pride Alliance, in order to ensure that Autistic pride events remain something that is run and organised by autistic people, and to swap information and help each other organise events.
Every pride movement is different, and every Autistic Pride event is different and what works for Autistic people will be different to what works for other groups. It’s a fundamental trait of many autistic people not to conform socially, so any movement that accurately reflects the autistic community needs to reflect the individuality of each autistic person. Many of us struggle to travel long distances, many of struggle with socialising, with crowds, with sounds and noises. And for these reasons watching the movement grow over the last year, I think it’s great how every single Autistic Pride event:
is different in character, has a different flag
has a different conception of what Autistic Pride is
while most events are clustered around June 18th, some, like this one, can be as early as April, while others can be as late as September, while some organisers have clubbed together, there is no centralised authority that directs Autistic Pride, and any attempts at gate-keeping are resisted.
For individuals, Autistic Pride doesn’t necessarily need to take the form of public events. The organiser of Inverness Autistic Pride, Kabie Brook, told me that she celebrated Autistic Pride day by taking a walk in the park with her family. And enjoying herself.
Openly stimming, or vocalising or expressing yourself in your own body language is an example of Autistic Pride in Action.
Standing up and passionately defending your own truth, regardless of convention or tone, or social dynamics even if it goes completely against the grain, or others consider it minor or pedantic, is Autistic Pride in Action.
Seeking knowledge according to your own logic is Autistic Pride in Action.
Completely breaking social rules, if it doesn’t cause harm, is Autistic Pride in Action.
Demanding to be treated with the same respect and dignity as others is Autistic Pride in Action.
Walking away from something if you can’t handle it is Autistic Pride in Action.
In a world that in many ways encourages Autistic people to be ashamed of ourselves and in a world where we suffer greatly in many ways, then being happy and content with who you are, even if it is fleeting, is the most radical thing you can do, and the most challenging to the status quo.
Another thing I like about the Autistic Pride movement is everyone can get involved in it. Not only does it try to be accessible to those who attend it, if done right it is also accessible to those who organise it. And this is why I prefer that there are many events up and down the country, rather than a few large, centralised events.
We need an Autistic Pride in every small town and village, as that way it will reach far more people, both autistic and non-autistic, and everyone who attends these events will play a role in shaping the character of the event.
Out of all the points I have made in this talk, the one I’d like to emphasise the most from this is that each and every one of you here makes Autistic Pride what it is. A successful event will empower everyone present, and give everyone present the platform and space in order to uplift themselves. A failed event or movement will just reduce people to passive spectators of another person’s vision of what Autistic Pride should be. If Autistic Pride carries on the way it started, as diverse, decentralised and fundamentally respectful to the autistic individuals, then I think it has a great future ahead of it.
If you are interested in attending or organising an Autistic Pride event, you can visit our page here.
How Autism and Queerness teach us how to find the rainbow in a black and white world.
Author – Ted Rogers
I am Queer and Autistic.
I was diagnosed Aspergers during a stay in an institution aged 17. Although, at the time, it gave reason to a lot of my struggles, it seemed a fairly useless thing to pay attention to. I didn’t really understand what it meant socially, politically or even personally. It was simply another thing to add to the list of things that made me sick.
I have never been diagnosed queer and fortunately was born in the UK in a time where queerness is no longer considered a disorder. But I do happily identify as Queer now. Because thanks to my experience and journey I certainly have a greater understanding as to what this means socially, politically and personally.
For me, autism has taught me huge amounts about my queerness and I have been able to use models of queerness to free my autism. Give it space to feel ecstatic, comfortable, valued and productive.
Autism is SO queer! – the interconnectedness of thought patterns, the fluid logic that doesn’t understand seemingly illogical rules of gender, sexuality, blue and pink, authority without question, lying, unnecessary tradition, ceremony and complication, avoidance of problems and brushing stuff under the rug that the rest of society seems to follow without question.
We have the ability to open ourselves to completely radical, new ways of thinking provided they look to a solution.
Typically a solution to a problem that exists in an oppressive way, a problem that doesn’t really need to exist, but does because that route works for neurotypicals or people who see themselves as the majority and the other routes have been brushed off the table.
I have found that frequently, in life, you are offered one or two ways of doing something. You either succeed or you don’t, you are right or wrong, gay or straight, boy or girl, employed or unemployed. It’s a case of yes or no with no room for maybe.
This is taken into extremes in things like the education system, the mental health system, relationships, marriage and employment. If you are not sane, you are insane and your thoughts don’t matter, if you don’t conform at school you will become a terrible drug addict with no qualifications or direction, and if you don’t have a job – which you definitely won’t get if you perform poorly at school – then you are a failure.
And if you aren’t married with a kid, a house and a mortgage by 30, what was the point?
I am queer and I am autistic. And often because of how these are viewed and treated by majority society I have been unemployed, institutionalised, a drug addict, lacking direction, without love, homeless, scared, poor and completely insane.
I have struggled with the education system, been kicked off my philosophy A-level for asking too many questions, been bullied daily into submission resulting in poor attendance and disruptive meltdowns. I have been systematically abused by low-key homophobic staff and teachers, denied ears to listen to what I was struggling with because they thought they had it nailed and that I was just kicking up a fuss.
I have struggled in employment because I wasn’t “the right look”, too “extreme” or my needs didn’t matter, because sales targets, image, budgets, rota’s or customers are more important.
I have struggled to find purpose in life because I sleep with people who I don’t wish to reproduce with, and growing up I had no narratives or idols to look to who weren’t insanely famous or dying of aids or both. And I didn’t want to get married and have kids because I hated the idea of being tied down by anything until I had pursued my dreams.
My dreams of becoming a famous dancer and spreading energy and joy which were considered unrealistic and selfish and worthy only of failure by mainstream society and parents of other kids.
And then when I finally cracked, I struggled in the mental health system because therapists are an 8 month wait away, and even when you finally get to see one they are shocked by what you have to say. I found no-one paid attention to why you are struggling because according to them if you don’t function like everyone else then you, yourself are subjectively THE problem; and solutions are so expensive, mysterious and time consuming that it’s much easier to say that you are impossible to understand and that you are sick. So you get miserable and hopeless and end up in hospital.
This was my experience for a long time. Until I found Queerness. And Recovery (or 12 step programs as they are more popularly identified as), which I actually find pretty queer in principle too.
I was lucky to move to London clean, sober and working on myself. I met some peers, and then some friends and even some idols who were all a whole lot more relatable and realistic than anything I had come across before.
These people didn’t mind that I had a very loud mind and that I had loads of thoughts, and wanted to share them and understood that if I didn’t they might eat me up. They also understood if I got overwhelmed by big noises or distractions. And that I had an unconventional way of expressing myself.
They went so far as to encourage it. And to grow it. And even to listen so well to what I had to say that they could interact with my thoughts and offer up some truly engaged debate.
I met Larry Tee and Sink the Pink, both queer Idols whom took me under their wings and taught me that it’s completely wonderful to do things how I saw fit. Providing it was done with love and caused no actual harm to anyone knowingly. And that often, “the majority”, doesn’t know the best way.
They only know this way and that way. But between this way and that way there are an infinite number of paths with potential outcomes.
They taught me to love myself in all my forms and to explore those forms and try something new. To experiment with my gender, to bend it, to dance in my style, to be sexy in my way, to listen to music, to draw pictures, to put on events, to not see things as big and scary, but completely possible and available to me. They taught me that mistakes are not failure, and that perfection can be limiting, and instead of self-loathing to learn from all my experiences. They taught me to not fear the cracks but to find all the good juice in there that everyone else was missing. They taught me that although there may be healthy boundaries and respect, there is no black and white, and so often there are rainbows that majority society is completely blind to.
I find it utterly infuriating when as autistic people we are told we are black and white. My experience is that I have a whole lot of time for the maybes, the grey areas, the endless fields of dark matter and the potential paths, as long as there is strong potential for a solution or a nugget of truth the be unveiled.
And the more this has been encouraged by my queer peers, the more grounded and relaxed I feel in my autistic soul.
These principles of queerness; the openness, the willingness to explore, the ability to mess up, get up and keep going, the freedom to share and express my emotions, my body and my mind as well as the time and patience to allow me to figure out what these expressions are, have freed me. This queer menu offers me a suitably unconventional way to function in the world.
Around its systems, its boundaries, its policies and blind truths. It helps me to seek help, to open conversation and to commune with like minds to see what can be done between the “yes” and the “no”.
I am Queer and Autistic, and because of queer guidance, I am no longer sick! I don’t need to be employed, I am not a drug addict, I have love and can share love, I have options and possibilities, I have lived out dreams, I don’t need a mortgage and a kid to feel happy, but if I decide I do want those things I can also make them work. I am in movies, and music videos and magazines. I am an activist, writer, performer, bar-top stripper, family person, genderqueer human, nature lover and charity worker.
I enjoy solitude and specificity without shame, I enjoy my logic and know it has value.
I am certainly not a problem, a disorder or an illness. I could in fact be a mirror to some of society’s problems and a potential vessel towards solutions and options. And although the path may be rocky and struggles still appear. At least I have the map of Queerness as a very open-minded guide.
The Autistic Empire had a presence at the Autism Show in London this year, where we had the opportunity to speak to hundreds of people about our work and our plans.
Alex and Sarah also had a speaking slot at all three shows in London, Birmingham and Manchester on “Sense and Sensibility: findings from our Grand Sensory Survey”. It was a long month!
You can read more about the details about the Survey here (please note the survey is now closed).
Below are a transcript of Sarah’s introductory remarks.
“Hi there, my name is Sarah McCulloch and I am the founder of the Autistic Empire, which is an autistic social organisation built by and for autistic adults to form community based on autism as a civic identity and to provide practical tools and services for all autistic people.
I became an occupational therapist after a horrible experience seeking a autism diagnosis for four years. It took forever, I didn’t need it to know that I was autistic, but I still had that moment of terror of ‘but what if he tells me I’m not?’ I wanted to try and find a way to deal with a system that keeps us waiting around for years and then only validates us in our neurology if we are traumatised enough that we can’t teach ourselves how to function in society or mask things we want to hide. We founded the Empire on the basis that the number one problem all autistic people have, that we’ve found, is low self-esteem. We removed all medical terminology, all critical disability terminology, and even trying to portray autistic as a difference, because ultimately, difference from what?
The terminology of difference still centres neurotypical experience as the norm. I do not want my mind to be defined against someone else’s. We should be sufficient in ourselves.
So with the Autistic Empire, what we are trying to create is a autistic-majority society where autistic perspectives of the world are assumed. Autistic culture exists, as you’ve heard from many other speakers on this stage. The problems we may have as treated in the Empire as matter-of-factly as the visual impairment that means I am speaking to you wearing glasses. In a society, where nearly half of all adults wear glasses, no-one even thinks about the fact that technically, half of all adults are disabled and require visual aids to navigate their way through life. In the Autistic Empire, we are creating a community where the norms and expectations are set to those of autistic people the same way that signage in this society is set to the expectations of certain ranges of vision. In our vision, autistic people are free to be autistic, to develop themselves and work on whatever sensory, emotional or social issues they have, without feeling like they’re doing it wrong.
The unique advantage of this approach is that we are recruiting people who did not previously see themselves as disabled, or in need of help, or access to services. Based on both my personal experience after a decade knowing I am an autistic adult, and also in my professional career as a mental health OT, it is my belief that the number of autistic people is hugely underestimated, and that perhaps the majority of autistic people have no idea that they are autistic. But they don’t know because our current methods of identifying someone as autistic is based almost entirely on what you can’t do, rather than what you are.
We cannot liberate ourselves as a people until those of us who are managing in the world, who maybe feel like there’s something odd about them, like they don’t really understand other people, but they’ve still got partners, and friends, and jobs, maybe they keep losing jobs, but maybe they invented Facebook, see themselves in us and take their place in their community where they belong. We cannot function when our most successful citizens, and our wealthiest, do not contribute to our community because they have no idea what we have to offer them. Autistic people built the infrastructure of this society, we discovered the maths, we designed the systems, and we spent thousands of years taking things apart over and over again until we thought of something better. In return, I think we deserve to be happy.
We’re at the very beginnings of this process, and most of the people that we’ve met so far have been haphazardly found through our social networks and ironically, because they work with autistic people and loved the idea of what we were doing without considering that it might be for them as well. The people that we have met who we’ve informed that they are likely autistic have said that more than anything, they feel relieved. They have an explanation for why life wasn’t working for them. The world makes more sense than before they spoke to us.
The thing about finding autistic people who have no idea that they’re autistic is that they don’t google “am I autistic?” They don’t go to their GP and ask for a referral to a service that might not exist. The Autistic Empire is therefore trying to find what commonalities we have with each other that allows us to identify whether a person is autistic or not that’s more concrete than aspiedar and which doesn’t involve having to spend two hours with a psychiatrist and a letter from your mum. Given that variant sensory experiences is nearly universal, we started there, and ran a survey which focused almost entirely on the senses. And I am now going to hand over to Alex to talk about what we found.”
The Autistic Empire is a new institution that aims to provide services for autistic adults. There are currently many autistic-led organisations that act as liaisons between the autistic community and the neurotypical world, seeking to change public policy-making in our favour. There are also many medical, social and campaigning organisations that are run by neurotypical people who may or may not consult with autistic people to determine who they are and what they should want, and allocate resources and strategic priorities accordingly. Both of these strategies assume a power hierarchy with neurotypical people at the top and ourselves either asking to be let in or negotiating the terms on which we are accepted.
The Autistic Empire aims to create autistic-majority spaces where much of the stress and feelings of marginalisation that come from our door-knocking for acceptance can be alleviated and our people can concentrate on self-development and fulfilment, the development of our people and community and mutual support networks that are meaningful and conceptually based in the way that we see and interact with the world. There are a number of autistic advocacy organisations that exist doing good work to protect all of us, but they are primarily advocating for publicly funded interventions. It is our belief that the autistic people is made up of a hugely diverse crowd of people, some with disabilities, some who do not lead independant lives, and many who do have financial and social independence and have no need of publicly funded interventions. We all have problems that we face in our day to day lives, like everyone who is human, but the way we approach and solve them is often different to neurotypical people.
The Autistic Empire is a place for autistic people to get together and share what they have found works for them, to allow other autistic people to benefit from people who have been in the same position, and to develop tools and services that facilitates people to be happy and content.
Much of the work of the Autistic Empire as it currently stands has been informed by our interactions with autistic people who have been creating homemade coping strategies that we want to provide on scale. Our Q+A, for example, was built when we realised that people were posting questions asking for autistic people’s perspectives on social scenarios, or how to do something, to their personal social media feeds. We want good answers to be accessible by the world. Our Grand Sensory Survey was built while we were trying to figure out whether you could use autistic people’s sensory experiences as a more effective form of identifying autistic people who might never think it necessary to spend two hours explaining their childhood habits to a clinical psychiatrist, and couldn’t find any research on just what people experience and how that is different from neurotypical people. This article was written after a conversation with a friend who said they weren’t interested in being around other autistic people and why should they join?
Other ideas that people have input to us that we are planning to investigate:
How autistic parents manage being hypersensitive to sound and the sound of children screaming – we’re going to create a podcast episode with an autistic parent to advise on this and other aspects of parenting from an autistic perspective.
Living with other people when you don’t like other people but you can’t afford to live on your own – we want to put together a guide on common solutions people have found to managing your relationships with flatmates and potential sources of conflict such as sharing bills, cleaning, and mental health problems.
Travelling while autistic – we want to publish an article on how people have found solutions to standing in enclosed spaces, managing artificial lighting and loud noises, and the ever-present reality of constantly getting lost.
A speaking tour employing autistic adults to explain autism and answer questions to parents of autistic children.
A customisable autistic alert card that people who need them can select the information that is specific to their experience of autism instead of generalisations of what autism is.
A weekly course giving autistic people in geographical proximity who grew up without certain life experiences to visit common social spaces such as bars or swimming pools in a supported environment, and to develop social skills and friendship networks with other people on the course that they can stay in touch with when they graduate.
Non-verbal autistic adults – up to a third of autistic people do not speak. These numbers are likely to be much lower due to the unknown but huge numbers of undiagnosed autistic people, but non-verbal people still make up a huge and neglected segment of the autistic community. We have been unable to find any support groups or representatives of non-verbal autistic people other than some small localised groups or exceptional individuals who have been published. The reports of these individuals is that it is assumed by nearly all professionals and those who interact with them that because they cannot speak, they have severe mental disabilities, and therefore it is not useful to try to help them to communicate in other ways. This is completely unacceptable. The position of the Autistic Empire is that you do not have to talk to communicate, and we plan on reaching out to non-verbal autistic people to offer them citizenship, consult them on their needs and integrate them fully into our autistic-majority spaces.
There are many, many conversations taking places all over the world on these kinds of issues, as autistic people problem-solve with ingenuity, inventive thinking and panache. We are not here to reinvent the wheel. We want to gather together what people have learned, share tools that already exist and apply our own knowledge to build tools that everyone can benefit from. We want to create infrastructure that autistic people can use to make their lives better, so they can get on with the business of being happy and do what they want with less stress, less anxiety, and less depression.
Maybe none of this applies to you and you have no need of these services. Brilliant, how did you do it? Enrol now and help others to be where you are. We’re planning on starting a peer mentoring service for autistic people with more life experience to support autistic people with less. We’d love you to take part. We are one people and we need to take care of each other.
Why the name Autistic Empire?
We have spoken to a huge number of autistic people at all levels of society, ability and need. We found that across the spectrum (ahem), people feel bad about being autistic. They have low self-esteem and low mood. Some of this is just the result of minority stress. We want to go in the other direction, to say that you as an autistic person have skills and talents that non-autistic people don’t have, and we think that’s great. You are great. The use of the term empire was to invert the general power dynamic of autistic groups seeking acceptance from a neurotypical society, to an empowered community, moving forward, in command of its own destiny.
Doesn’t the organised autistic community already exist?
It does. But there are also an unknown number of autistic people who live without diagnosis or knowledge of who they are but because they may be employed, in relationships, or otherwise moving through neurotypical society without the “impairment” necessary to be picked up by social or psychiatric services, who have no autistic identity or contact with other autistic people. It is our experience that there are significant numbers of autistic people who are integrated into neurotypical society, who do not consider themslves disabled, but who nonetheless have a feeling that something is “different” about them. Like the LGBT community, many of these people have, on finding out they are autistic, expressed relief to have finally received a conceptual framework and vocabulary for these feelings of difference and to initiate some kind of relationship to the organised community.
We want to identify, reach out to, welcome and integrate these people into our tribe and to create autistic-majority spaces into which they can feel like they belong and from which they can derive benefit. Policy-making for our community, and its financial sustenance, will be impossible as long as a significant segment of our people remain unknown to us. As far as we are aware, the autistic community relies on people who have already been told they are autistic finding them. We want to go find everyone else.
This was originally published for another autistic website, now defunct, circa 2013.
Probably one of the greatest banes of my life as an autistic person on the Internet is watching the arguments go round and round over whether you should give your child the MMR vaccine. Maybe you agree with some of those who claim that you shouldn’t because it “might cause autism”. Here at the Autistic Empire, we’d like to share five facts with you that we hope will allow you to make up your mind.
1. The man who came up with the “MMR causes autism” theory has been struck off as a doctor.
Andrew Wakefield, or to give him his full medical title, Andrew Wakefield, published a paper in 1998, claiming they had identified a new syndrome which they called “autistic enterocolitis”, raising the possibility of a link between a novel form of bowel disease, autism, and the MMR vaccine. The authors noted that the parents of eight of the twelve children linked what were described as “behavioural symptoms” with MMR, and reported that the onset of these symptoms began within two weeks of MMR vaccination.
2. The journal that published his research retracted it and apologised for not checking its numerous errors.
After a decade of scientists attempting to replicate the original study and failing miserably, The Lancet finally admitted in 2010, conveniently just as the GMC ended Mr Wakefield’s career permanently, that they were retracting the paper completely and admitted that it should never have been published because of the numerous errors in the methodology and results. Basically, it was rubbish, but apparently no-one noticed until we’d had numerous measles scares and at least one thirteen year old boy died.
3. Andrew Wakefield stood to make $43 million a year from scaring parents away from the MMR vaccine.
An interesting argument from some anti-vaccine advocates is that Andrew Wakefield, in doing his research, was taking a stand against Big Pharma and highlighting the damage that their quest for profit was wreaking on our nation’s children.
The reality of the situation is that Andrew Wakefield filed a patent without his employer’s knowledge claiming he was working on a single vaccine that would have made £4 million a year if he had succeeded in proving the MMR vaccine was unsafe. He also planned to sell diagnostic kits that he estimated would make him $43 million a year trying to diagnose “autistic enterocolitis”, an illness that doesn’t exist.
The reality is that Andrew Wakefield wasn’t taking a stand against Big Pharma – he is Big Pharma, who used his status as a scientist to prey on the anxiety of parents to put their own children at risk of an infectious and deadly disease so he could make millions of dollars.
4. Measles kills 158,000 people a year – mainly in areas that don’t have universal vaccinations.
The government does not generally like to just hand out free stuff – they do it when there is a compelling reason that that free stuff stands to have an immediate, measurable and dramatic impact on the public well-being. In Ireland, vaccination was introduced in 1985. There were 99,903 cases of measles that year. Within two years, the number of cases had fallen to 201. That is a serious public health benefit.
However, some people cannot be vaccinated – because they are allergic, because they are too sick, and other reasons. Those people are reliant on the “herd immunity” of the rest of us to ensure they stay safe; about 95% of the population needs to be vaccinated to prevent outbreaks of disease. After the MMR vaccine controversy, that level dropped to just 78% in some age groups – who are most at risk of contracting measles now. In 2013, there was an outbreak of measles in Swansea, Wales: 1,000 people, mainly under 18s, caught measles, 100 were hospitalised and one 25 year old died. Of those who have become sick, the vast majority have been unvaccinated.
If you choose to refuse to have your children vaccinated, you are not only putting them at risk of a disease that stills kills 430 people a day worldwide, you are putting other people’s children at risk who have no choice over whether they can be vaccinated or not.
5. The MMR VACCINE DOES NOT CAUSE AUTISM AND EVEN IF IT DID THAT WOULD BE BETTER FOR YOUR CHILD THAN DYING FROM MEASLES, MUMPS OR RUBELLA.
…just to be really clear about that. There’s nothing wrong with being autistic. It’s a lot more fun than being dead, I’m guessing.