Today is World Mental Health Day. It’s a day I always like to mark with a blog post, aka “Sharon’s yearly overshare”. This year I’d actually hoped that things would be a bit different, and I would be able to announce the publication of the report on our Mental Health and Wellbeing survey of the Digital Preservation Community. Alas, time and circumstances have not been on my side and the release date is still a TBC (probably December, *she says with her fingers crossed*).
This is partly because things at the DPC have been hectic (although when are they not?!?) But also, because it’s been a tough year for me on both the mental and physical health fronts. I’ll spare you the TMI details of the physical health issues other than to say it started with one problem, and while that was being investigated the doctors found another problem, then while investigating problem two they found a third, more serious problem. None of them are life-threatening, just resulting in new medications and lifestyle changes, but it has been emotionally exhausting and time consuming. On the mental health front, this has been a pivotal year for me, with some big ups and downs, and I’m going to share some of that story here for World Mental Health Day.
It all revolves around the fact that in June I was officially diagnosed with Autism Spectrum Disorder (ASD). This brought to an end a decade of wondering on my part about whether I might be autistic or not (turns out it was, indeed, “More Than a Feeling”...) The diagnosis brought with it a wealth of emotions that I’m still working through: happiness, grief, frustration, anger, and, most importantly, relief.
But why has it taken so long? Well, it might be because the first indicator that I could be autistic was the result I received from an online quiz. Not normally the most reliable of diagnostic tools! The quiz was a series of questions based on a commonly used ASD diagnostic tool, and if you scored 27 or above it was a good indicator you might be autistic. I scored 37.
It didn’t seem possible though, how could I be autistic and not realise? I wasn’t like any of the representations of autistic people in the media (they were pretty much all cis white males), I was (relatively) articulate, I had a reasonably successful career which involved lots of communication, I had plenty of friends, I loved to laugh, and I definitely experienced lots of emotions. Thanks to these doubts, I parked this result in the back of my brain, only getting it out from time to time to mull over when life seemed like a bit too much.
In the last couple of years, however, I’ve had cause to learn more about neurodiversity, and the more I read, the more I identified with the descriptions of autism. It helps that descriptions of autism are becoming more inclusive, looking beyond just the cis white males who had dominated the focus of research for decades. [Side note: the history of autism research is pretty traumatic, with actual Nazis and torturous “treatments” from the same man who developed the disgusting practice of gay conversion therapy. And some of these “treatments” are still widely in use today. Autism Behavioral Analysis/Therapy should be banned.]
A lot of the new, more inclusive research has, however, not yet permeated its way into the mainstream medical world, which can make getting a diagnosis anywhere from difficult to traumatic in itself. This is particularly the case for women, trans and non-binary people, and those from minority communities. People from these groups are still massively underdiagnosed, or often diagnosed later in life like me. I ended up pursuing my own diagnosis through a private service rather than the UK’s NHS as it allowed me to be more in control of the process, but I’m aware of my privilege in having that choice available.
I’m also still working my way through what the diagnosis means for me. It has caused me to reevaluate much of my life, and the experiences and difficulties I’ve had. There are so many problems and hardships I’ve faced that I just assumed were things that either everyone must deal with but didn’t talk about or were things that were just fundamentally wrong with me. There are a lot of negative thoughts I’ve had about myself, resulting in internal self-flagellation for my shortcomings, that I now realize are actually about issues that are the result of being a neurodiverse person living in a world designed for neurotypical people.
It's been a lot like going through a grieving process, not because I’m in any way sad to be autistic, I’m glad to have my diagnosis, but because you can’t help but wonder what your life would have been like if you’d had this additional bit of self-awareness. What accommodations could have been put in place to ease the difficulties a bit?
I’m not going to start listing details of all of the revelations I’ve had, nor address all of the misconceptions and incorrect stereotypes about autism that are out there, as this would become more of a book than a blog post. But part of the reason I’m sharing my diagnosis so openly is that I would guess, after all the reading I’ve been doing about autistic traits, that there are more undiagnosed neurodivergent people out there in the digital preservation community. It’s definitely a profession that suits the common neurodiverse characteristics of focus, creative thinking, and nerdiness!
If anyone reading this has wondered if they are neurodiverse, I’m happy to have a confidential chat. Or if you would like to read more about autism, I’d heartily recommend the book “Unmasking Autism: The Power of Embracing Our Hidden Neurodiversity” by Dr Devon Price. It’s my favorite book I’ve read so far, balancing well the science of autism research with real lived experiences of diverse autistic people.
Before finishing up I should really take a minute to address the theme for this year’s World Mental Health Day: “mental health is a universal right”. Obviously, this sentiment is something I wholeheartedly agree with, but it’s something most organizations don’t put enough time and resources into for their employees. Too often the needs of individuals are ignored in favor of the needs of the organization, leading to growing mental health issues in many workplaces. Organizations have to start thinking more about their duty of care to their employees and how to actively support good mental health for all. It should be a core part of organizational culture, and addressed, where appropriate, through ongoing career/development reviews. I’m hoping we can make some recommendations about this based on the results of our survey.
Finally, talking about how to accommodate my autism is on the agenda for my staff review this year, so we can begin to figure out how to lessen some of the issues that are having an negative impact on my mental health. And while I feel lucky to have a boss who is so engaged and proactive (props to William!), it also makes me feel sad that it is something that inspires feelings of luckiness. Having the support we need shouldn’t be a luxury, it should be available to everyone as a universal right.
My journey of autistic self-discovery is ongoing, as is my journey towards better mental health, and I’m sure I’ll be back again to overshare some more…
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