Weekly Meander #24: A long-awaited diagnosis + adventures in AI
On authenticity and normal zebras
Hi! Thanks for joining me on this weekly meander through my week just gone as I navigate a time of personal and professional reimagining. If you’re new here, do check out this post for a bit more about me. TLDR: I'm a documentary filmmaker coming to the end of distributing my debut feature doc - about the history of nuclear power - and currently moving onto new working adventures, alongside parenting & perimenopause. Some balls may be dropped!
You'll also find recommendations of great reads I've seen on Substack in the past week. If you enjoy it, do feel free to leave a comment. And of course I'd love it if you would consider subscribing to get all my posts delivered straight to your inbox.
Hello friends,
Do you ever have times when it feels like everything has concertinaed, when events that surely ought to be spread out over a much longer period just seem to bunch up all together, one hard upon the next, with nary a moment to reflect in between?
Well, that's definitely how this past week has felt. It's been intense but also heart-opening and mind-expanding for me, as a parent and as a filmmaker, in a way that wasn’t planned, yet also feels strangely aligned.
My brain is still fizzing and I don't know if I'll be able to coherently capture all my thoughts and feelings but I'm pleased to have this space to at least try to record and explore where my mind is at in this moment.
And before I go any further, I should say this post discusses some more than usually personal stuff for me and my family, but that I've sought permission to talk about it here, not least from my son, whom it involves the most directly. I think I can safely say both he and I are pleased to fling open the windows and let the sunlight pour in1.
So just what exactly has been going on?
Well, the big headline is that 20 months after our first appointment with the NHS, over 2 years since his school made the referral for an assessment and over 4 years since I first spoke to the school SENDco2 about the struggles he was having, my brilliant boy was finally diagnosed as autistic.
That was on Wednesday. But before that - when we were still 'on the pathway' for an autism diagnosis - on Monday I attended a meeting at school about the forthcoming Year 6 residential trip and on Tuesday I attended an online workshop with my local council's inclusion service about what parents of autistic children need to consider when applying for a secondary school place.
Then on Thursday – now with diagnosis confirmed - we went to our first (very crowded, very noisy and for us, not terribly successful) secondary school open evening. And then on Friday, it was the PTA AGM. Nothing to do with autism, this one, but for my sins, I'm the treasurer (they were desperate!) so I had a financial report to prepare and deliver.
So all this was quite a lot. On top of the 4 year old still settling in at reception and excitedly coming home every day with new phonics sounds and actions to demonstrate to us with delight in her eyes. And work.
Ah yes, work.
In a triumph of not stopping to actually look at the calendar, last week I decided on the spur of the moment to sign up for a 4 week course on 'Boosting your Documentary Productions with AI'.
What can I say, it's a hot topic in my industry - and probably in yours too, whatever job you're doing. It seemed a good idea to get ahead of the curve and learn about its possibilities (and its limitations). And heck, there was a big early bird discount.
Put all of this together and I've found myself spending a lot of my time this week thinking about some proper deep & meaningfuls – about truth and reality and about what it it is to be honestly, authentically, oneself.
We've known for ages that we were probably going to have an autism diagnosis confirmed. But it's only now it's actually happened, that I fully realise just how mentally and emotionally exhausting it's been living in this limbo state of uncertainty for such a long time. I felt almost demob happy straight after the appointment on Wednesday as we celebrated by going to the garden centre for a big slice of cake.
And I know my son feels something similar. A couple of nights later, when he was angling to stay up just a teensy bit longer – that familiar dance we do pretty much very evening [me: you've got school tomorrow; him: but I'm not tired] – he told me was still processing the news.
In a good way, or a bad way? I asked.
Oh, definitely in a good way! he said.
Hearing this made me exhale just a little more and smile a small smile to myself. We're really now at the beginning of a whole new journey as we come to know much more fully the exact flavour of his neurodivergence and the best adjustments and accommodations we can put in place to support him. But just knowing that he feels happier, more seen, is a great place to start.
Another mum friend of mine who's been on a big journey with autism in her own family, shared this quote/meme with me a while back3:
“Why do you need a label?” Because there is comfort in knowing that you are a normal zebra, not a strange horse… It is near impossible to be happy and mentally healthy if you’re spending all your life thinking you’re a failed horse, having others tell you you are a failed horse, when all along you could be thriving and understood if everyone, including you, just knew you were a zebra.
This quote really seems to have resonated with my son. When we came out of the clinic, he said 'I'm a normal zebra! 'A f***ing brilliant zebra!’ I replied, beaming (and failing to keep my default sweariness under control in the relief and clarity of the moment).
Here's a representation of the zebra analogy my son and I eventually managed to coax out of an AI text-to-image generator.
It took us a surprising amount of attempts with a few different AI tools to create this (getting a different image in the mirror from the object in front of it seemed to be particularly challenging).
This probably reflects our lack of skill and experience in writing effective prompts. Yet I can't help but wonder whether it also says something about how difference from 'the norm' – whether that's neurodivergence or any other form of difference - is still not readily understood and accepted in mainstream culture.
The large language models these tools use are of course reflective of the society and culture that builds them and there are enormous inherent biases in the algorithms that we need to be acutely aware of when interacting with them.
But I must say that after only the first week of my course, I already feel far better informed about how these tools can be used to serve us in our creativity. For documentarians they are saving huge amounts of time already in areas like creating and reviewing transcripts and for repetitive tasks in pre- and post-production and I can see how, if viewed as assistants or collaborators, they could be really useful for brainstorming different ways of approaching making our films.
What they are not - ie living, feeling humans in all their complexity - is surely key to their successful deployment going forward. But with this always in mind, I'm looking forward to seeing what more there is for me to learn over the next few weeks.
And really that's a good summation of where I am right now – ready with open eyes and a whole-hearted eagerness to learn more, about autism, about AI and about whatever else I need to understand more, so as to best equip myself for the new paths life is preparing for me.
So how about you?
What are you learning right now? Or what do you need/want to learn more about?
I'd love to know in the comments – the best way to learn is together after all 😊
WORK WINS THIS WEEK
Well, I feel a little fraudulent even including this section this week, but I'm the boss in these parts and it's my rules 😅! So here's what I'm putting in the win column for work this week:
1. Week 1 of ''Boosting your Documentary Productions with AI'
As discussed above. Week 1 was an introductory overview, focusing on how AI tools like ChatGPT, Claude and Perplexity can help with generating ideas, structuring scripts and generally organising projects. A promising start.
2. Gave myself permission to forget about trying to do any other work
Yes, my pretty colour-coded To Do list in my weekly planner is sitting on my desk with not one of my work tasks crossed off (sorry if you’re reading this and are waiting on an email response from me: I will get there, I promise). But adapting to present circumstances is a valuable work skill too so I'm not gonna lose too much sleep over this and will just draw some nice arrows sending those tasks onto next week's list.
Sometimes it's just really important to know how much you can fill up your own bucket before it overflows into a big messy puddle. This is a lesson I'm learning in relation to autism spectrum condition but it absolutely applies more broadly too I think. This was a week when I really needed to focus on being a mum before anything else and to give my son, especially, as much of my focus and attention as he needed. Work will still be there next week.
WHAT I'M LOVING ON SUBSTACK THIS WEEK
I’d actually already devoured this elegant, rallying and somewhat terrifying speech on AI which
re-published on Substack last week when I made the impromptu decision to sign up for my AI course (a subconscious influence perhaps). It is a long read but, as you’d expect, an excellent and genuinely thought-provoking one. It’s well worth your time. And it also inspired me to share a couple of other AI-related pieces here too.The first, which I read when it was originally published a few months back, is an examination of an honestly pretty freaky, AI-generated advert from my go-to post-production Substack expert
. And the other is a piece I came across whilst doing some reading around/prep for my course.It’s from around 18 months ago, which in AI terms is an epoch; but it’s a conversation between two creative practitioners doing some really interesting stuff with AI and is definitely still worth reading today I’d say.
is the director of the new, generative documentary Eno, which has been created using AI tools so that every time an audience watches it they will be experiencing a different version. It’s a really exciting and stimulating concept (and about a very stimulating subject in Brian Eno) and I’m hoping to get to see it on a big screen myself if I can.
Lastly I just wanted to share this lovely piece from one of my favourite kids’ authors & illustrators (and greetings card designers)
. I had no idea it was Thinking of You Week this week, but I *love* sending (and receiving) cards in the post and do in fact have one on my desk ready to write and send to a college friend I didn’t manage to meet up with over the summer.This is just the encouragement I need to actually pick up my pen, stick on the stamp and head to the post box. Whose day could you brighten with a card this week?
And there I shall leave you. Thanks as always for reading - I wasn’t sure to start with whether I ought to write about the diagnosis but it’s a big thing in my life and it does feel good to share so I’m glad to have the chance to do so here.
Sending all my love and good wishes your way till next week 😊
Vicki x
Proudly taking part in the Sparkle on Substack 24 essays club – this is post number 21.
Watch my film on Netflix (in Europe) or Vimeo (everywhere else) - or see trailer, reviews & bonus content HERE
Life stories website – coming soon...
This is of course a metaphor. He wants me to make clear he doesn't much care for metaphors. But he's willing to let this one stand 😁
Special Educational Needs & Disability co-ordinator – in case you're not familiar with the acronym
She saw it on the @omgimautisticaf instagram account but it seems the quote had been circulating online for some time before that post, so its exact attribution is uncertain. I'm using a slightly expanded version here.
Thank you for distilling your very raw and emotional journey with us in suck a beautifully written way.
Loved the horse-zebra comment. I sent it, together with the picture, to my daughter-in-law to show to her son, age 14, who was diagnosed borderline autistic three or so years ago. (I would have sent it directly but he doesn't look regularly at his emails and this way he will see it.) He is also super bright. He identifies hugely with the diagnosis, to the point that he gave a 'presentation' to his class at one school (during a year abroad) about autism and what it was like for him – and it went down very well and changed how the kids treated him. He has been discouraged from doing so at his current school (what might be called a 'bog-standard comprehensive'), possibly correctly. The best of luck to your son – and you.