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Interview with Rachel Worsley about Neurodiversity, ADHD and Autism in Women

Sept. 17, 2022

Interview with Rachel Worsley about Neurodiversity, ADHD and Autism in Women

Interview with Rachel Worsley about Neurodiversity, ADHD and Autism in Women

Interview with Rachel Worsley about Neurodiversity, ADHD and Autism in Women

Rachel Worsley is the founder and CEO at Neurodiversity Media— a media company that promotes accessible storytelling augmented by technology.

She is autistic, ADHD and has dyspraxia. Rachel worked as a neurodivergent employee in libraries, news outlets and law firms, before becoming a neurodivergent business owner that employs neurodivergent staff. 

Rachel edits the NeuroWork newsletter, which translates original research about neurodiversity in the workplace into stories and resources that empower the neurodivergent community, their supporters and business.

With a background in medical journalism and legal marketing, she started Neurodiversity Media to produce accessible information resources to equip neurodivergent people, their support network, and employers with the knowledge to unleash potential at work.

JOEL: How did this all come about?
RACHEL: I have autism and ADHD, I was diagnosed officially in 2018, at the age of 25. 

After a career in medical journalism, and then I was getting a law degree at a time I worked in marketing and law firms by just realize I struggled to pay attention, little simple things were difficult deals, always very emotional.

I was always struggling with jealous stuff that I just thought was hard, easy for some people. And so, it is all added up when I did my research and went “okay, maybe it is ADHD, autism”—got the diagnosis. 

I tried looking for information, to help me at work and to explain to my boss what I could do, what they can do to help me and I found basically, a lot of misinformation, a lot of jargon and nothing was helpful. 

And so, I felt that as part of that journey in trying to understand myself, my ADHD, my autism, I realized we need to get this information out there to everybody. 

So, I started Neurodiversity Media to help organizations who were trying to indicate a message but then I just decided to do the journalism myself put out a newsletter, and I eventually turned it into a platform called the resource library to ensure that people have this ongoing source of information in a one stop shop sort of platform.

Why are you late for ADHD and Autism diagnosis?
It's got a lot to do with the stereotypes and prejudice and stigma around autism, ADHD, especially in women.

A lot of people believe that autism, ADHD only happens in boys and not in girls or women. And so, lots of people like me, especially for us, we can mask our symptoms or was able to compensate better through, high IQ or simply just having to conform as part of being a woman in society. 

So, a lot of that gets flown under the radar. There's a lot of miseducation of doctors around, you know what ADHD, autism is in women.

It's this compounding cycle of a lack of evidence, a lack of information education, a lack and just as widespread stigma and prejudice that's often reinforced by mainstream media. 

And I guess that was the one of the biggest challenges for me—being from a media background. 

Journalism had given me a good in the working professional world, but just realizing that people also basically erased people like me from being represented and identify as people were supporting.

What was the interesting data and findings regarding Autism and ADHD?

Some of the statistics are the neurodiversity employment statistics. I suppose is simply just knowing that. 

For example, in 2018, this 205,000 Australians have autism, which was a 25% increase back in 2015. So even knowing that the prevalence is increasing, but also putting context around it by saying that it's actually because of better diagnosis. 

Just the fact that, 34.1% of sticking to AWS isn't taught, isn't right, that's a high unemployment rate, 34.1. That's three times the rate of people with disability, general disability, and that's huge for autism alone. 

This is just stats drawn from an article that we've put together on 22 stats in neurodiversity. Those kinds of stats when you say it out loud and show people that this is a huge problem. And just for this one condition very disproportionately compared to our little ones. 

For me, I just find that's kind of really concerning. But the problem is that you don't hear about those stats. It's in the research papers, just spend all these papers and just pull it all out.

What’s the barrier to getting an ADHD/autism diagnosis?

The cost itself, the reason why it was exorbitant, there was an unfair disparity of when you were diagnosed with ADHD. 

So, you were diagnosed below 18, your medication was new medication options were subsidized was pretty, because any people at least believe that ADHD is in kids.

If you are lucky enough to be diagnosed after the age of 18, as I was, until recently, with Vyvanse, for example, you had to pay $120 out of pocket, just because you're unlucky enough not to have a doctor who understood you the load, he gave you that diagnosis. It was ridiculous. 

There was no scientific evidence base to justify that there were submissions that were rejected in the past—which I read. There’s no evidence that it's good in an adult population. 
What's the difference between ADHD kid and coming as an adult? It’s because it's that cost benefit analysis. 

And obviously, because at the time, that's a bit of a slippery slope, maybe to subsidize hundreds more people as an adult. But it was really based on this really misguided notion that you grow out of ADHD when you're an adult, but you don't. 

ADHD is a lifelong neurodevelopmental condition.

What is ADHD to you?

ADHD really stands for Attention Deficit Hyperactivity Disorder, which innocence lots of people say it's a bit of a misnomer, because it's not really a deficit of attention that we struggle with—it’s the regulation of that attention span. 

So, what that just basically means is that for someone like me, it was just very hard to pay attention, things that do not interest me. It's kind of based on the idea that the ADHD brain is interest wired. 

ADHD is an extreme, it's like, either you're super interested in one thing, or you're just not super interested in most people are of at least nicely in the middle. That is what characterizes a diagnosis of ADHD. 

For me, it's like, I can be very hyper focus on things like English and writing and spend hours and hours and hours, but even doing simple thing, like, how did I put the bins out? Or it's like, just losing all my, like, travel cards in local cars in New South Wales. 

I still have a pulse on them that I just dug out the other time. If I can do focus 12 hours and remember everything in this project, and that extreme sort of nature for me, it always kept offsetting itself, but it just causes mental health breakdown half the time

I know how to optimize my interest brain to work on things a lot but have guidelines or guardrails to make sure I still do the other important things in my life. 

The moment you understand that's how your brain works. And there's nothing wrong with it, you just learn how to optimize your life, to focus on things, you enjoy it, and then make sure you get support and help from other people or put in strategies to manage things that you're not good at. And so that's been the difference for me getting the diagnosis.

What’s the prevalence of ADHD in Australia?

In Australia, it was a very significant report that was put out by Deloitte, economics 2019, it said that, based on their very thorough analysis, about at least 800,000, Australians have ADHD. And this was based on scientific research. 

I still strongly believe that's an underestimate. I think it's at least 500,000 Plus, we're over the age of 18. It’s the first proper economic, statistical analysis of ADHD in Australia, which is remarkable. 

But most Global Studies have put the prevalence in percentage terms between 2 to 4%. Right off the population basically, again, it's still underestimate properly. 

What is your definition of Autism?
Unlike ADHD, there's no medication per se, which is probably good because there's a lot of terrible anti vaxxers and people out there, and all these crazy cures like “no do not”. There's a reason why would we consider this autism has existed for hundreds of thousands of years.

How did you turn your passion into business?

I just believe that the stet stories of lived experiences is what will help people, gain strategies, and understand, how to relate to people, and how to help them.

You feel compelled to act after a really good story. But it's important to know how to produce those types of stories. And the journalism background I have is what I had helps me with that understanding. 

So, in the marketing aspect of me working in law firms—where it's about translating difficult to understand information for the average person and how to distribute it in different channels is also important part of it—because you can't produce something if you just focus on producing stuff that you have no strategy to distribute the content. 

I feel like I was a journalist, and I never thought about that, I'll be fired from it. So that's that contradict that combination of my lived experience, my passion in solving a problem that was I thought needed to be solved—I've solved for myself, I solve it for lots of people. 

And knowing how to get that out to a mass audience, often through organic methods—because word of mouth is always the best way to spread the word about the business and get people through. 

Everyone keeps saying to me, “We all came to this resource library to learn about neurodiversity to learn from stories to learn from resources”. 

Then I go, “Okay, so maybe the next step up is providing education type products, learning products for specific groups—so corporates or schools or hold that through talking and consulting”. 

That's how I'm trying to join the dots, at least right now on monetizing the business, because it’s challenging to monetize just on the journalism alone. 

Education, people are usually willing to pay for certain groups. And I think that's why focus on professionals that missing middle group that I like to talk about us, because we usually do have that disposable income to afford these upgrades—we will pay for education, we will pay for continuing development.

For me, that is crucial, hopefully the biggest social mission of the business, which is to get information out to anybody, regardless of the income level, if there's a core group of people who are going to help to support it for their own needs. So, that's how I've thought about the development, the business and to be honest, it's still ongoing, it's always an iterative process.

Where is a push going to come from regarding awareness?

In terms of neurodiversity, like in Australia, like Hannah Gadsby—do comedian—has spoken a lot about autism and shining that light on that neurodiversity perspective.

She doesn't think it's a problem. It's just part of I think she has autism, ADHD, but that's her last show talked a lot about putting that square in front of cycle, but also, thanks to social media and TikTok and stuff. 

There are people like Chloe Hayden, young autistic woman who really finds an entertaining way to educate people, huge audiences about autism. 

I think kind of consistent with the world that we're in today of the media, well, there's no one person or one thing that could represent all it's all these different figures that step in, contravene their own way to lead the neurodiversity movement. In a way, it just depends on how prominent they are, I suppose many probably can't get any more prominent Elon Musk in this case.