I’m 56 and in January 2022 I was diagnosed with autism.
I’m going to try to explain that to you - the impact of what undiagnosed autism has had on me and what diagnosis at this age means. Stay with me. I promise this is all going to make sense.
There’s an app called Letterboxd which is a database of films, actors and crew and it allows you to rate films, review them and keep a record of what you’ve seen. You click on a film and it brings up user reviews and a full cast and crew list. You can click on any person and it brings up their filmography, and each of those films has a cast and crew list and so on. On the home screen are the posters of popular, high-scoring films which change as film ratings and popularity do, and you can see about 14 of them before scrolling for more. I absolutely love it. For a film fanatic, which I am, it’s a rabbit hole of pleasure.
The other night I pulled up the app on the TV and my husband casually asked what rating the 2014 Swedish film Force Majeure has. (I know what you’re thinking - we sound like such a fun household). At this point, most people would have headed for the search function. But I never do that. Instead, when looking for any film or person on Letterboxd, I take what I can see on the screen and start to make connections until I arrive at the film or person I want to find.
So, in this case…
One of the 14 films on the home screen was Her which stars Joaquin Phoenix who starred in The Master which was directed by Paul Thomas Anderson who also directed Magnolia which starred John C Reily who starred in Step Brothers with Will Ferrell who starred in Downhill which has a writing credit for Ruben Östlund because it is an American remake of a Swedish film written and directed by Östlund, Force Majeure.
In my head, I got from one film to the other via these connections in about the same amount of time it would have taken me to type the film’s title into the search bar. I then clicked through that journey to confirm it all.
It’s like the dullest party trick ever.
But, this is a good illustration of how my mind works. Not always, but often. It instantly searches for connections, links, commonalities, reference points and patterns. It takes a start point and an end point and connects the dots. I guess we all do that. I just hadn’t really been aware that the way and extent to which I do it is unusual.
My need to connect things was the reason behind seeking a diagnosis in the first place. In a work context the year before, during a communications exercise, I explained to colleagues the ways that I need to receive information in order to do my best work, and the processes that need to be in place before I can make sense of a task or project. I pointed out that the end point is always the thing I need first in order to make sense of what will follow. I talked about structure, procedures, rules. The need for logic, to make connections.
Later, it was gently pointed out to me that the traits I was describing can be signs of autism. I shrugged it off but then, intrigued and looking further, other indicators were there, like my overly emotional affinity with animals, my inability to accept other points of view, my need to be in control, my requirement for things to be logical, my early childhood defined by trauma and loss. When I asked people close to me if they thought I could be on the spectrum, they had clearly thought so for some time. But it was a surprise to me.
Jump forward half a year and yes, I am officially autistic. I’ve been assessed, I’ve done the tests. I think it means I’m allowed to skip ahead in queues but I don't get free parking. Damn.
Like many people relatively low down on this spectrum, I’m outwardly fine, chatty, sociable you might say. Inside, there’s a lot going on. The nightmare of eye contact awareness (too much? too little? both are rude), the effort of listening whilst trying to come up with something connected to say, the self-checking required to make sure someone hasn’t nodded off because I’ve been going on about the same subject for too long or, perhaps worst of all, the lack of a filter that stops me from saying something that I shouldn’t say, especially if I think someone has broken a rule. Oh, the trouble that’s got me into…
It’s been a few months since I gained this self-awareness. But what now can I do with the knowledge that, this late in life, I find that there’s a reason why I’ve always wondered what’s wrong with me?
And anyway, what is wrong with me? Autism comes with a lot of baggage and, whilst it’s different for different people, here’s some of what’s been going around for years on the conveyor belt of my internal baggage claim…
“You’ve been very good at masking for your entire life. You’ve done amazingly well to get this far in work and in your life without the support that you’ve needed.”
Wow. That’s quite impactful, actually, hearing that at 56. Those words make a difference. They help. It’s taking a while for them to fully sink in, but they are.
So, what am I doing with the knowledge that I’m autistic? Here’s what.
Partly, I’ve been dealing with a lot of that baggage. Some of it is pretty heavy and has been hanging around for a long time, revolving on that belt, going away for a bit but always coming back. Well, it’s of no use to me anymore, so I’ve been claiming it, rummaging around and sorting it out. Unpacking it feels good, like a weight is lifting because now there’s an underlying explanation behind some of it, a connection to it that makes sense to me. And whilst it won’t all go away - a diagnosis only explains part of me, not all of me - at least it feels like I’m travelling lighter.
That urge to connect things, to find or create a pattern, to make sense of something by understanding what you’re aiming towards, it informs almost everything about me. To connect things, I need to know the start and the end points so that the journey of everything in between makes sense. It’s how I think, how I work, how I live.
For my entire life, I’ve struggled because I don't know where or what or how the end point is. I can’t define it, I can’t control it and it doesn’t make sense. So, for me, the journey never has, either. I wonder if that’s a pretty common experience.
That mysterious, uncertain, unknown journey IS the point, but not for my brain that seeks logic and patterns and a purpose. Consequently, I spent years lying awake in bed at night terrified of uncertainty, of what might happen, who might leave me, how that might occur, searching for reason, for a point. And I don't mean in a religious sense at all, far from it. I mean in a logical one. Who knew that autism could contribute so much towards existential anxiety?
One of the most profoundly interesting sessions I was asked to talk through during my assessments is summed up by this:
“How do you know when you’re happy?”
“I don’t feel unhappy.”
“What’s something that makes you happy?”
“Being with close friends and family.”
“What does friendship feel like?”
“Because my inner monologue switches off and stops getting in the way. It means I can forget myself for a while.”
Since my diagnosis, that over-analysing intrusive inner monologue is getting in the way less and less, which suggests that I’m happier. And whilst my existential worries will never fully go away, lately, I’ve been sleeping like a baby. I’m more in control. I’m more accepting of myself. That feels both liberating and powerful
If that’s what being diagnosed as autistic means to me at 56, then that’s a very, very good thing.
And that’s because, ironically, one of the benefits of finding out what’s wrong with you is the realisation that there’s been nothing wrong with you.
In fact, I feel a bit like Bruce Willis in the film Unbreakable which is about someone who doesn’t know they’re a superhero and who starts discovering their latent powers in middle age. At first, it's strange, then frightening, then amazing. And it only makes sense when the character connects all the dots from what went before to where he is now. Yes, I feel like that, except that he was invincible to harm and all I can do is connect two films faster than a search engine can…
Still, I loved that film. It was directed by M Night Shyamalan who also directed Signs and The Village both of which starred Joaquin Phoenix who was also the star of Her…
As part of their work with Manchester Health and Care Commissioning, my client Result CIC asked if I would support their programme by creating a short documentary which MHCC could use as a learning tool in the roll out of their new Equality Impact Assessment procedures.
The MHCC brief was challenging. There was a lengthy requirement in terms of ensuring that key messages and people were included, plus a desire to bring it all in in under 5 minutes...
At the same time, I wanted the film to convey a narrative, to tell the story of this process, to fully convey why diversity and equality matter so much to MHCC.
The 35 minute first draft has been cut back, but to 12 minutes rather than 5. And that's because, fortunately, the commissioning managers at MHCC saw the benefit of that narrative, really supporting something which , according to them, is a fresh and more engaging take on the kinds of training films normally associated with such projects.
And that's reminded me that, no matter what field I'm working in, be it arts marketing, consultancy, film and photography, the need to tell a story seems to underpin so much of my work.
So if you or your organisation have a story to tell, and you need help to tell it, get in touch. I'm all ears!
I was very pleased to be contacted by Time Out in London back in November about editing a special one off edition of the magazine for Manchester.
Back in 2014 and 2015 I was the editor and content producer for both Time Out Manchester and Time Out Leeds so it was lovely to reconnect with the brand and some former colleagues.
And so, Time Out Manchester: March 19 is out now, freely available throughout Manchester.
You'll find the best things to do in the city, a guide to vegan eating, an interview with Andrew Garfield, a look at Manchester's street art, plus loads more.
Hope you enjoy it.
Do you ever wonder about the impact that your work has on the world? Three new opportunities have made me think about just that.
I've been working with Result CIC for a few years now and one of the best contributions I've made for them was to encourage the collection of information towards creating a Social Impact Report. That report is now published - you can see it above.
It outlines the contribution to society, the economy and the environment of Result CIC. It charts the numbers of people positively affected by what they do, details the company ethos and presents outcomes which are about something other than profit and loss. The infographics provide easy to take in facts and stats, whilst quotes from people who have benefitted from their coaching and training sit amongst the more detailed outcomes.
Thanks to designer Astrid Johnson, it's a lovely piece of work about a brilliant organisation who have had a positive impact on so many people.
Me included. Because I've now been employed in an associate capacity to work with an extraordinary organisation called The Connectives, based in Liverpool, to produce similar reports for some of their clients. At the moment I'm working on one, again with trusted designer Astrid, for a legal company also concerned with their positive impact on society.
Also, since my last blog, I'm happy to be working once again with Chester Zoo, this time as Project Manager for the delivery of a major online development for the organisation. This will place their amazing world-impactful conservation work centre stage. And if protecting our planet and the creatures inhabiting it isn't about social impact, what is?
Access more what?
Visits? Page views? Transactions? Well, yes.
But how about access to a more diverse user base?
I’m on the Board of DaDaFest, a disability and Deaf arts organisation based in Liverpool that was established in 1984. It has a vision; to inspire, develop and celebrate talent and excellence in disability and deaf arts. DaDaFest uses the arts to educate, challenge attitudes and remove the barriers that restrict life choices for disabled people to live independently and equally in society.
It runs events, nurtures talent amongst disabled young people and has a fantastic biennial Festival.
One of the things I was asked to look at was an overhaul of the organisation’s communications and marketing and an area which leapt out for development was the website, a cluttered, clumsy and unattractive one which hadn’t changed much for several years. Crucially, it had a difficult to use back-end which left staff at DaDaFest baffled and incurred ongoing costs to get anything done.
For any organisation, accessibility must be a paramount concern when developing a new website. For DaDaFest, it’s its lifeblood - it’s what the organisation is all about. The existing website, in placing access it its core, somehow forgot to reflect the joy, vibrancy and excitement of the organisation, presenting a rather dull experience.
Is it possible, I wondered, to create something lively and appealing to all users whilst improving upon an already high standard of accessibility?
When I was Digital Marketing Manager at The Lowry, I worked with an amazing company called Web to create one of the very first arts based websites with an integrated sign-up process which allowed users to segment themselves based on their areas of interest. Sounds so old hat now but then, it caused a fuss big enough to be spoken about glowingly by the Arts Council and held up as an example of future best practice. Now, everybody does it, or can if they choose. Later, as Digital Marketing Manager for Manchester International Festival, I worked with Web again, creating a site to incorporate what was then the emerging importance of social media and to ensure that audiences were brought back to the site outside the period of the festival itself.
So, having worked successfully before with Web, I approached Andy Adamson, Web's founder and Director, and asked how he felt about developing a website which placed accessible usability as the very highest priority but which didn’t compromise on the other stuff.
About a year later, mission accomplished!
The new DaDaFest website launched in May 2018. As you’d expect, its creation involved a thorough examination of how a new website could best support the organisation’s business plan. It also involved lots of research into what best practice accessibility is, and that was vitally important, but so was considering the different needs of a huge variety of users and their specific requirements.
This included people who are d/Deaf, people who have a visual impairment, people with dyslexia, learning impairments, motor issues… We wanted to go beyond the tried and tested (but still underused) likes of a signed video (got that), of classifying searchable content via the type of access it provides (got that) and so we delved deeper.
We took into account things like the use of colour to support people with dyslexia, (the site contains ‘dyslexia friendly’ pages), having access keys to assist users moving around the website, building a frame work conforming to the ‘AAA’ standard of Web Content Accessibility Guidelines (WCAG) 2.0. For screen reader software, we’ve avoided generic links such as ‘click here’ or ‘more’. Instead, the text of the link describes the destination. We avoid using language which is complex for some users, the text is large, contrasts with the background, and the interface is easy to use. The list goes on.
But here’s the thing. If you don’t have specific access requirements when using the site, do you notice all of that or do you just see an exciting and easy to use website? We hope it's the latter because, as well as taking all of the accessibility requirements into account, we never forgot to include the enthusiastic feedback from the team at DaDaFest and the wonderful Young Leaders there who wanted something which reflected the diversity, quality, originality and excitement of what DaDaFest is and does.
It may only be 2 months old at the time of writing, and there are lots of reasons why a website’s stats change (not least of which is the ability of staff to actually use a CMS with ease), but the fact is that page views of www.dadafest.co.uk have increased for that 2 month period year on year by 665%.
No, that’s not a typo. 665%.
Some of those visitors to the site show a marked increase in the national and international reach of the site too, supporting a key element of the business plan’s objectives.
It’s not a finished thing. The site has the scope, flexibility and ambition to continue developing.
To access more.
Because it seems that when you place genuine access at the heart of what you do, things improve for everyone.
If you’re interested in working with Web to improve your levels of accessibility online, contact them here.
This week, two separate but connected things were announced.
1: The Office for National Statistics revealed suicide rates for the UK student population. They are alarming, as are the findings that mental health conditions being declared amongst students has risen five fold over the past decade.
2: The nominations were announced for the National Lottery Good Causes Award which is a public vote. Amongst the deserving finalists is The HOAX Project.
The HOAX Project was a world-first: a cross-media narrative, health research study. Sounds complicated. Game changers sometimes do take a while to get your head around. And make no mistake, The HOAX Project is a game changer.
It was created by the award-winning writer, Ravi Thornton, a response to the suicide of her younger brother, Rob, who, having been diagnosed with schizophrenia, found expression for his mental health issues in his poetry.
After Rob took his own life, Ravi turned his poems into a trilogy combining a stage musical, performed at Manchester’s Royal Exchange and Salford's The Lowry, a take-home copy of a graphic novel and access to an app. The app invited users to take part in research aimed at helping people with psychosis in the future.
A musical, a graphic novel, an app.
Ravi’s own company, Ziggy’s Wish, had developed a system called Applied Narrative Technology, a system which encourages more robust quantitative insights by using the power of storytelling to provide data. The story provides choices. The choices provide data. She worked with the Psychosis Research Unit to frame those choices and created a narrative with Rob’s life as the plot.
So, the app studied the impact of HOAX on audiences, including those with lived experience of psychosis-related difficulty, and whether this impact was long-lasting.
The answer was a resounding yes.
Because of the power of storytelling and the compelling, authentic narrative, data capture was significantly higher than through more traditional research methods, engagement being key to providing the outcomes. It was found that the project significantly reduced stigmatised attitudes around mental health amongst participants. What’s more, it increased mental-health disclosure and help seeking for individuals who experience psychosis.
But it’s not over. The HOAX Project, a unique combination of the arts, storytelling, psychology, health, research (and funded from the likes of the Arts Council and the NHS), has some fierce competition from the other finalists in the National Lottery Good Causes Award, not least of which is Hull City of Culture, attracting Goliath size audiences to HOAX’s more modest reach.
But if it wins, there’s a financial prize, plus a guest spot on the BBC’s One Show, offering a real opportunity to take HOAX further.
It’s important because this is the first time in the 15-year history of the National Lottery Awards that a comics/graphic novel project has made it to the finals. More-so, because of those statistics about suicide in the UK amongst young people.
We all know that the arts can enrich lives.
The HOAX Project might actually save some.
1) Vote on the National Lottery HOAX Project webpage.
2) Vote by calling the National Lottery HOAX Project phone line: 0844 836 9673
3) Vote on Twitter by tweeting or retweeting the hashtag: #NLAHoax
What inspires you? Where do you find it? Is it music? Books? Films? Sport? People?
This month I've had plenty to inspire me, putting me in a good frame of mind with the world.
I don’t read enough. I used to read a lot more and now I spend time on social media instead. So I’ve been buying books in an effort to reverse the situation. I do love The Folio Society so their new editions of 1984 and Wuthering Heights arrived last week and I can’t wait to get started - two of my all time favourites. I read both at school and they remain amongst the most vivid books I’ve ever read. These luxurious editions are somewhat indulgent but they’ll get me back into the habit so it’s money well spent.
But first I’m reading the late Hans Rosling’s book, Factfulness. If you’re not familiar with this wonderful man’s work or the Gapminder programme, I urge you to watch some of his TED talks or TV interviews where he reveals how a fact-based approach to thinking can change the way our often stressful view of the world impacts on our lives. The book is a joy to read, it really does turn around our conceptions about the state of things by a) describing the world factually and showing how much better things are than we believe and b) examining why our world view is so skewed towards negativity. I love this approach. For all of the great benefits of a mindfulness way of living, I find factfullness much more in tune with me.
Feeling better about the world is something music can also enhance and this month both the BBC Philharmonic at Bridgewater Hall and Joan As Police Woman at Stoller Hall have done just that. The BBC Phil’s programme of Strauss, Mark Simpson and Shostakovich was stirring and beautifully performed - they’re such a great orchestra. The Simpson piece was a world premiere too so that was pretty exciting. At the other end of the musical scale, I think this was the fifth time I’ve seen Joan As Police Woman live and, once again, she didn’t disappoint. I’ve rarely seen a performer with such stage presence and command of her material. Her voice is astounding and her songs are beautiful, strong and moving. I love this one of the latest album, Damned Devotion. As one of the best live performers around, she's a talent I wish everyone knew about, so it was great to see Stoller Hall's glorious room sold out.
I also need to catch up with some recent films although I did manage to see Isle of Dogs at HOME this month. Being a massive dog lover and a Wes Anderson fan (sometimes), this was the perfect film for me. It had me grinning from ear to ear throughout and made me want to get home and cuddle my girl Dusty. It was also really nice to have lunch at HOME this week with Tony Elliot, founder of Time Out and, therefore, my former boss from when I worked on the Manchester version. He's a throughly nice chap and started Time Out on his own with just £70. That's pretty inspiring.
Finally, I work with a great company called Result CIC. They’re great because of what they do and they’re great because my husband started it with his business partner Jane and former co-director Andy. Every time I think the world of arts marketing is stressful, I consider the people Result CIC works to support, offering as they do coaching and training to marginalised people. You hear their stories, get a glimpse into their lives, and my worries seem trivial. Here’s one of them, in a short and very quickly made video.
After having loved the TV series last year, and in anticipation of the forthcoming Season 2, I decided to re-read The Handmaid's Tale. I finished it the other night. It was a surprise in more ways than one.
One surprise was in seeing how cleverly the TV makers have adapted this incredible novel. They've carefully retained the very best of it whilst developing major strands which are merely hinted at in the book. I think it might be one of the best TV adaptations of a great novel ever.
But my second surprise was the realisation that, actually, I don't think I have ever read it, despite my certainty before starting it that I had, back when it first came out. I think it was in a pile of 'must read' books when I started student life. I definitely haven't read The Exorcist but this creepily illustrated Folio Society edition has just arrived so that's next.
Getting back into reading great fiction has re-ignited my own creative writing juices so I'm re-visiting a book I started some time ago. Thanks to a chance meeting over dinner at our friend Ben's (aka the superb Minute Taker), I've been working with an amazing company called Ziggy's Wish for the last few months and, not only do I find what they do incredible, their Founder and MD Ravi Thornton has become a good friend. As an award-winning writer herself, Ravi uses her considerable skills to create narrative which supports scientific research projects. It's brilliant, inspiring, astonishing stuff. Rav and I are currently supporting each other in our new writing projects, sending through drafts for feedback. It's a great way of making sure we actually get on with it and her wisdom is invaluable.
Not sure she should count on mine though when I can't even remember if I've read a book or not...
There have been a couple of trips to the theatre in March. The Royal Exchange are currently doing Frankenstein so we nipped along to see that. I've read it a couple of times and the play followed the novel closely, which was great, and which provided a much better understanding of what Mary Shelley had originally written about for those who had only films of the story to go on. Despite an issue I had with the casting of Victor (I couldn't hear him for some of the time) it was nicely staged.
I’ve also been back to my old haunt The Lowry a couple times this month. Once was because I was working on an event held there, the Manchester Theatre Awards, and once to see Ballet British Columbia. Much like my time there as Digital Marketing Manager, it was a combination of work and fun.
I try never to do this but at the awards I met Janet Suzman and told her how much I wanted her to win for her extraordinary performance in and as ROSE which was at HOME last year. She was charming and gracious and, as it happens, she did win. Well deserved - such a moving play and a heart-breaking piece of acting. And whilst the performers in the three pieces performed by Ballet British Columbia were astonishing, the dance as a whole left me unmoved. I’m in a minority there - it’s had plenty of 5 star reviews.
It’s funny walking into a place as a customer that you once invested so much time, energy and passion into. There are some familiar faces still there and it’s always lovely to get a warm welcome from them. Even so it does feel like I was never really there.
This week I saw You Were Never Really Here and it is one of the best films I’ve seen for a long time. Lynne Ramsay is hardly prolific but when she does get behind the camera it’s always an interesting experience. I wasn’t fond of her last film, We Need To Talk About Kevin, it just didn’t work for me, but this one grabbed me from the start and didn’t let go. It had the grip of a vice and hurtled along like a train that couldn’t stop.
Which leads me to the latest incarnation of Agatha Christie on screen, Murder On The Orient Express, the blu-ray of which I was sent to review this week for Starburst magazine. I was dreading it but I’m happy to say that it was nowhere near as bad as most of the reviews made it out to be. Not great by any means but some nice performances and sumptuous to look at.
But last night we watched Babette’s Feast, one of our favourite films. If you want sumptuous, look no further. We watched it with friends who had never seen it and because its star, Stéphane Audran, died this week. We’d bought some very good French wine to have with the film and to toast this great actress. We all cried.