Hi all,
The Autistic Empire is now approaching its seventh birthday. Let me tell you a story about how it has gone.
In 2014, I designed the AE logo and stuck it on a wall in my room. I didn’t know what it would look like, I didn’t know what we would do, but having spent four years of my life pursuing a diagnosis to obtain university accommodations, I was seething about the way autistic people were seen and treated in our society and I was determined to do something about it. I abandoned my previous career plans and pivoted into healthcare. Three years later, I had finished my OT MSc and a year abroad, and had gathered enough autistic people who were interested in helping out to make the Autistic Empire a reality. We started with the podcast (now in its 37th episode) and after a year of mapping out our vision and structure, we launched publicly in September 2018. In my lifetime I had seen a lot of grassroots autistic groups go bust through over-optimism and/or infighting, and so we constructed the Empire specifically to avoid those pitfalls.
I have terrible ADHD and when we established the Empire, I knew that there was a time limit on how long I could bear the burden of doing most of the administration to keep it running. I wanted the Autistic Empire to last beyond my lifetime, and I am very aware of my own weaknesses. Being a well paid locum in my twenties in a dingy shared flat at the time, I resolved to pay other people to do the things that I couldn’t tolerate, and free myself up for the things I enjoyed and am good at.
This didn’t go great. I didn’t know anything about recruitment and hired a string of people who were not qualified to do what we asked them to, we didn’t support them properly, and after a series of people being removed from their roles or just plain dropping out of contact with us, we had to rethink. We then tried hiring professionals from online platforms, but in 2019 no-one could quite grasp our focus as an autistic-led neuroaffirming group and after our social media company managed to publish a resource guide from Autism Speaks (despite my lovingly written eight pages of guidelines to our tone and acceptable sources of content!), we fired all of them and just stopped trying to build a social media presence. I’d noticed from the engagement patterns that it actually didn’t seem to matter so much to update regularly because people looking at our Facebook page were obviously scrolling backwards for literally years and liking as they went, so we decided to keep it to important and occasional updates and trust people would find us.
I have long believed that with the majority of autistic people being undiagnosed, the need was so great, and the provision so scanty, we could not get it wrong and anything we did to help would be a net positive. The messages I get weekly as an openly autistic person in my personal and professional life from people who just don’t know what to do or who to talk to continues to validate that proposition.
In 2020 the pandemic hit and with all of our attempts to organise social events abruptly ended, we had space to sit down and think, and some of the more interesting content from our website dates from that period. The consistent feedback we had been getting from our citizens was that they wanted more social events. We were also acutely aware that we had a small group of people who were very involved whom I had recruited personally, and a much larger group of people who we had recruited to the Empire via various routes that needed orientation and engagement – and no-one in the middle of the doughnut who could take on smaller moderator roles to guide and manage the projects that are supposed to be what we exist to build. We spent a couple of years trying to square this circle of needing more people to get involved but not having capacity to organise the events that would get them involved.
In 2022, as the pandemic restrictions receded, as an experiment, I booked a room in a pub in King’s Cross on a Sunday afternoon for £150 and invited a load of autistic people I knew were in or around London to see what launching them all into an unstructured social situation would look like. It was a roaring success. People got on so well and talked so much that it nearly overloaded them. I had to push people out the door when our booking time was up and they were following me down the street still chatting. I got the Council to commit to funding a year’s worth of monthly open meetings and then spent a year of my life trying to find another centrally located private function room that we could book on a regular basis (because people were travelling in for it and I wanted a space without background noise that people could circulate in), and got precisely nowhere. Everywhere was booked up.
While all of this was going on, my career as a mental health OT continued to progress. I did agency work across a variety of mental health settings and saw autistic adults struggling everywhere I went. Community, hospitals, psychosis services, dementia services, they were there, it was a problem and often neither they nor their clinicians would believe me when I pointed out this or that person was obviously autistic and needed to be treated as such. Sometimes people I had those conversations with have tracked me down years later (current record is five years later!) to say that they’ve just got their diagnosis and I was right all along.
In December 2021, I had spent the previous year and a half working as the senior therapist in an autistic special school and I’d had enough of what had become, thanks to covid, a two hour commute. I landed a job as a deputy manager in a community mental health team twenty minutes from where I lived at the time, and, in a substantive role and senior enough for it not to matter anymore, finally disclosed at work for the first time that I am autistic. I was immediately asked to give training on working with autistic people. I started to get asked for advice on service users and as word spread that I “was good with autism”, I started to get more and more requests from across other teams to give the training and answer questions people had about their staff. I said yes to everything.
By 2023, I was in a position where my professional work as someone who “knew autism” was flourishing and the Autistic Empire had become an exercise in endurance. I told the Council that my dopamine had run out and I could no longer bring myself to even look at my email to reply to the queries and do all the dull admin stuff that we needed to do so people knew what we were doing. We missed some big opportunities through that, and I both felt bad about that and also like I’d rather die than design another Instagram post, which at the time was an utterly tedious and fiddly task that required bashing about with Canva and Loomly, none of which was integrated with each other properly. As I had been promoted to a full team manager with an increased salary, I decided I would hire a Virtual Assistant to manage the admin on my behalf while I could do the important stuff, like building personal relationships and creating new talks and resources. I contracted with a respectable agency, was assigned a VA and started onboarding them.
And this is how we ultimately went on to lose the last two years in me trying to get these VAs, people I was paying an hourly rate higher than I made at the time, to do literally anything I asked them to. I don’t want to say they were all terrible – but the competent ones would get hired by their clients to work for them full-time and resign their role from the agency in about the same time that I would take to conclude that the incompetent ones weren’t going to get better. I got stuck in a cycle of having a VA for three to four months before they got poached, or would do something so indescribably incompetent that I rang up the agency and asked for another one. Some of our odder output during this time is the result of my VA taking a task I had asked them to do and interpreting it in a fashion that I just don’t understand how they reached the conclusion that anyone would want them to do that. By the fifth one, I was ringing up the agency and saying, “am I being unreasonable? I’ve provided verbal instructions, a written document and texted to confirm my instructions and this task has still not been done the way I needed it to be done. How can I turn this around?” They insisted they didn’t know why this was happening either.
In November 2023, after five years of dedicated minute-taking and holding us all to account, our Secretariat resigned to pursue another life as a counsellor and the Council finally lost quorum and stopped meeting. I really needed to onboard new people and I was getting emails and having conversations with great autistic activists looking for an outlet but my sixth VA, tasked with contacting all of them and arranging an online meeting for me to outline the vision of the Empire and how it worked so other people could join in, managed to blow through three deadlines and contacted none of them (if you were one of them, I am so sorry). She also didn’t notice any of the emails asking us to promote the autistic pride events happening in 2024, and when I found them unread in my inbox after they had all happened, she was asked to move on as well.
After the last VA started blatantly using AI tools they kept denying they were using and then forwarded an AI summary of confidential legal information I had asked not to be shared to eight law firms including one I had explicitly blacklisted and told them not to contact, I fired the VA and then fired the agency for breach of client confidentiality. Reflecting on the experience, I realised I had gotten stuck in a classic autistic rigid thinking black hole where all these things that needed to be done and sorted would be fine if I could just get this VA onboarded and trained, if I could just get this one thing done, just one more VA bro, and everything would fall into place. Seven VAs and £6,000 later, I looked around and saw that the Autistic Empire just hadn’t updated our news section since 2022.
The world has turned upside down since 2017 and I was truly wondering this year whether the Autistic Empire even had a role anymore given all the other groups that now exist. Many of the autistic groups who started around the time that we did no longer exist, due to burnout, scandal, or whatever happened to them given they just shut everything down one day and disappeared. But there are so many others. Some of them have paid staff. Why spend two years trying to explain to a variety of volunteers what a factsheet looks like when there are autistic autism professionals creating entire websites that look better than anything we’ve ever made?
Over the past seven years, those involved with the Autistic Empire have often described me as relentlessly optimistic about our future, and for good reason. We are still here. That in itself is no small achievement. Organising people is hard; organising autistic adults, many of whom prefer solitude and are vulnerable to overwhelm, is harder still. And yet, we’ve endured. We’ve avoided the hidden hierarchies that often plague voluntary groups (I’m the final decision-maker, but that’s never been hidden). We’ve never had to invoke our disciplinary policy. People with experience in certain other autistic-led spaces have remarked on how unusual it is that we’ve had no bullying. We’ve built a ton of cool stuff that autistic people all over the world are using. We are financially self-sustaining. The Autistic Empire is incorporated as a company, not a charity, so we answer only to the autistic economy and not the Charity Commission. And remarkably, many of our citizens (in four countries) have continued to pay their modest citizenship fee year after year, even during the long silence while I tore my hair out over the VA situation.
This year, however, I found myself demoralised. Outside of the Empire, I’ve helped to start two neurodivergent groups – one in my local community, and an ND staff network at work. Both now run independently of me. It’s doable. I have done it. But while the Empire hasn’t been dormant (do check out our newly updated news section), something has clearly been stuck.
At this year’s Autism Show, I was starting to despair. But then, for the sixth year running, our regulars came by. They bounced up to our stall, asked what we’d been doing, and, crucially, started talking about what they wanted from an autistic organisation and how they were still looking for it despite all of the other groups that exist in the neurodivergent space. Their enthusiasm reminded me: the need hasn’t gone away. Our vision is still unique. And we still have so much to offer.
I began to think in 2025 terms. We have AI tools now. Social media is more streamlined. More people than ever know they’re autistic and are seeking answers to their problems. So I started to ask myself: how can I take what’s worked in the other groups I’ve built, and apply it here – despite the limits of community organising, a website that still won’t send emails to our citizens (and hasn’t for years), and my own paralysis about restarting?
Here’s the answer: beginning on Monday, 4th August, we’re launching a new online event series called Monday One – because it will take place on the first Monday of every month.
The first event will be recorded and will consist of a one-hour session where I’ll talk about the Autistic Empire: our ethos, our goals, what we’ve achieved so far, and where we’re headed. I’ll be inviting everyone who has contacted us in the last two years. The recording will be uploaded to YouTube for onboarding purposes, and from then on I’ll anchor a monthly, hourlong open space. I want to close it to citizens eventually, but in the absence of any technical means of doing that for now, I’ll just go direct to you all.
These meetings will give us a fixed date, a consistent structure, and a regular opportunity to meet beyond WhatsApp chats and scattered emails. Depending on who turns up and what people want, there will be discussions, games, and activities.The link will be posted both in the Citizens’ Forum (citizenship is £9 a year) and in our public Discord channel.
Admittedly, this won’t be ideal for people who dislike online events. But it gives us a working format to re-establish the Council and get momentum going again.
If you’re one of the people who reached out over the last couple of years and received a series of unhelpful solitary replies from different virtual assistants who then vanished – I’m deeply sorry. I won’t be hiring them again.
So that’s the plan. I’ve got leads to restart offline social events. A few people have offered to help with emails. We still need web developers – we’ve got a whole task list sitting on Jira. Our Basecamp’s full of ideas, half-built projects, and potential.
What we need now is people.
I invite you to join me.
Let’s build a community.
Sarah
July 2025
