In December 2023, Sarah gave an interview to Harrow Community Radio about the Autistic Empire and her professional work as a mental health occupational therapist. We have made it available as an episode of our podcast, Audible Autism. A full transcript is available below.
https://creators.spotify.com/pod/show/audible-autism/episodes/Radio-Harrow-with-Sarah-e2tsrrn
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Transcript for episode:
Odai: Hello, listeners! This is Odai here. I just thought I’d do an introduction for this episode, as it’s going to be something a little different. What we have here is an interview with the head of the Autistic Empire and one-time co-host of Audible Autism, who is interviewed by the host of the program. She talks about her life, her experiences of being diagnosed, and how she came to create and develop the Autistic Empire.
I think you’ll find this interesting, insightful, and all the other usual adjectives that I tend to bring up when it comes to these episodes.
Anjeli: My name is Anjeli, and I’m very excited today because I have a guest in the studio. I’m joined by Sarah McCulloch from Autistic Empire. I actually met Sarah at an event in the summer—Autistic Pride in Hyde Park—which is held every year to celebrate autistic people. It’s open to autistic people, their families, friends, and allies, so that was really exciting. Sarah is based in the south of the UK.
That’s a bit of biographical interest, but I think our listeners would be more interested in hearing from you, Sarah. So, can you tell us a bit about yourself and your journey towards receiving an autism diagnosis?
Sarah: Certainly. I wouldn’t say that the autistic identity journey culminates in diagnosis or starts there. I think it’s a parallel path—some people go down it, and some don’t.
I had a fairly standard autistic childhood: lots of temper tantrums as a toddler, being very disruptive in school, but also very bright, so I was largely able to work my way around things. I had a mother who always strongly stood up for me, but by the time I was a teenager, it was obvious that something made me different from other people.
I eventually had a lightbulb moment when I realized that other people see things differently from the way I do, and that I had indeed offended someone without realizing it. That was when it clicked: Oh, it’s autism. I’m autistic. Right. Okay. What do I do now?
And then I did probably the most autistic thing one could do in such a situation. I went to work the next morning—I was working in the student disability service at the time—and said, “I’ve realized that I’m autistic, and I am extremely sorry if I have been behaving in ways that have upset you without realizing.”
That was the beginning of my journey in understanding what it meant to be autistic—how it shaped my interactions with others, my strengths, my limitations, and my identity as a minority within society. Back in 2008, I hadn’t yet met all the autistic people I’ve met since, or done all the reading I have now, but I had the foundation.
The first thing I wanted to do was get a diagnosis to access certain student services. It took four years—going from GP to GP, talking to various services, applying for special funding that never materialized. Eventually, in my third year of university, I went to my mum and said, “We’re going to have to go private.” She gave me the funds to see a psychotherapist in Sheffield. After a 90-minute consultation, a month later, I got a two-page report confirming what I already knew.
Anjeli: That’s quite a journey. It’s shocking that it took four years, and ultimately, you had to go private to get a diagnosis quickly. Do you think that’s still happening to people today?
Sarah: It’s both better and worse. It’s better because autism services are now being rapidly commissioned. Back in 2012, when I sent FOI requests to Primary Care Trusts asking about their autism pathways, most of them wrote back saying they didn’t have one. That has now completely reversed—nearly every NHS trust has a pathway.
But the problem is the waiting lists. They’re now three to four years long. So, while the service exists, the wait is still a major barrier. Private diagnosis, by contrast, takes about nine months.
Anjeli: For our listeners, could you define autism and how it presents in people, acknowledging that no two autistic people are the same?
Sarah: Autism is a rewiring of your sensory system that changes how you process incoming information. That information can be what someone says to you, the light in the room, a thought you have, or an emotion you’re feeling. The way autistic brains process that information is different. Some autistic people are able to notice details and patterns that others don’t. But at the same time, many autistic people struggle to filter out irrelevant information—so lights are too bright, background noise is overwhelming, or clothing feels uncomfortable.
That’s probably the most universal autistic experience: sensory processing differences. But how that manifests in different people is highly individual.
Anjeli: You became an autistic occupational therapist. Could you tell us more about your training and what that role involves?
Sarah: Occupational therapy (OT) is a healthcare role focused on helping people improve their ability to perform meaningful daily activities—whether that’s a job, cooking, being a parent, or volunteering.
A doctor might prescribe medication to help with knee pain, but an OT would ask, “What do you need your knees to do?” If the person just needs to get around and is happy using a wheelchair, why go through months of painful rehab? OT is about finding practical solutions that allow people to achieve their goals efficiently.
I did an accelerated two-year master’s in OT. Since 2014, I’ve worked across NHS services, mostly in community mental health. Recently, I stepped up to become a manager of an 18-25 transition team, supporting young people moving from children’s to adult mental health services.
Anjeli: I met you at Autistic Pride, which is run by the Autistic Empire. Can you tell us more about the Autistic Empire and why you set it up?
Sarah: The Autistic Empire is an organization for autistic people who fully accept their autistic identity and want to support others. I designed the logo in 2014, but we launched in 2018. We have members in three countries, mostly online.
We sponsor Autistic Pride and created a customizable Autism Alert Card, as existing ones were too generic. We also run a peer clinic, where autistic people can support others navigating their diagnosis.
Unlike a charity, we’re a company supported by membership fees and service sales. This structure ensures accountability to autistic people rather than external funders.
Anjeli: Do you think language is important? Some people say “person with autism” instead of “autistic person.”
Sarah: Yes. “Person with autism” was promoted by professionals and parents who wanted to emphasize the person rather than the condition. But for me, autism defines how I think, dress, socialize, and process the world—so I prefer “autistic person.”
That said, some autistic people prefer “has autism” because that’s how they were diagnosed. I respect that. But I tell professionals that while it’s not wrong, it sounds outdated—like they stepped out of 2010.
Anjeli: How can society be more inclusive and supportive of autistic people?
Sarah: It would be nice if people could just chill and not constantly ask what accommodations we need to “fit in.” Let us exist as we are.
Accommodations are important, but if you only see someone in terms of their needs rather than as a whole person, that can be dehumanizing. It’s not about making us fit into a neurotypical mold—it’s about respecting that we exist in a different way, and that’s okay.
Anjeli: And finally, is there anything else you’d like to say to our listeners?
Sarah: Yes. If you think that you’re autistic, you probably are. Please visit us at autisticempire.com—you can contact us there, try our tests, or sign up to speak to someone if you need to.
Anjeli: Thank you very much.
This podcast was edited by Simon Marcus of Addictive Media. For more information about Simon’s video and audio services please visit <a href=”http://addictive.media/”>http://addictive.media/</a>