One of the most valuable pieces of advice I have ever been given is this; stand for something. Pick a cause, hug it close to your chest, and don’t let it go, whatever the consequences.
The act of sitting to write a book is not something I ever really envisioned myself doing; that was something I viewed as the domain of ‘proper journalists’, the heavyweight investigative names I’d read religiously as a teenager. I lack the descriptive powers needed for fiction; having graduated only 4 years ago, I haven’t exactly got a lot to say or to document on paper, either – making this perhaps one of the most ironic projects I’ve ever undertaken.
Between lockdowns in the UK, I was made aware that I was eligible for Personal Independence Payment (PIP); the prospect of some essential support, which had been very lacking since I was diagnosed as Autistic almost a decade ago, was all too alluring. I remember thinking, ‘now the fun begins, knowing full well that this was going to be something of an uphill battle until the bitter end, only to be repeated once more regarding a review.
As an Autistic female who speaks, I am all too aware of my privilege, though it is a tightrope walked daily. Autism has no specific look, meaning I can fly under the radar often. However, how do you choose to disclose it; do you run the risk of infantilisation and discrimination to try to obtain reasonable basic adjustments, or do you keep quiet and struggle away? Can you afford to be honest and ‘to be yourself in a culture that penalises difference as something ostensibly wrong while opening yourself up in pursuit of extra support? My abilities fluctuate daily as well. My ‘spiky profile’ – meaning I am only good at one thing, instead of having an equal skill set standard across a range of abilities – has a profound impact a lot of the time. I also have a limited diet due to myriad sensory issues; I struggle with food, preparation, and executive functioning. You may see a ‘functional’ human being – but you will not know the amount of effort and exertion to meet an impossible societal standard on any given day. It has a cost.
The stages of the PIP assessment meant inevitably having to go to a tribunal in the end, despite my assessor describing themselves as an expert in Autism in women/girls. But one line, in particular, got me sparking a fuse for the next 2 years. Skills, when it came to cooking, could just be learnt, said the assessment. By that same logic, I need to go back to college and get a qualification in what it means to be ‘normal’ to be seen as something ‘acceptable’!
I spoke to multiple Autistic people – either in a personal or journalistic capacity – over the next few days about this. All of them described an inherent frustration in the kitchen, or even when it came to just know what to do with food; cookbooks and other resources hadn’t taken them into account, and education had not been set up to be accessible. So how can you win the independence game if you have not been appropriately equipped? Research also suggests that Food bank usage is more likely if you have a disability, which Autism is defined as in law. This is inherently problematic if you also don’t know how to work with food, such as if you have an interception or sensory issue.
A tribunal is stressful, humiliating, and above all, degrading – but I am lucky to have a support network and one hell of a fearsome mother to back me all the way. But not everyone can wait out a system flawed enough to keep you waiting for over a year.
In September 2021, events kind of spectacularly collided almost fatefully. Before he’d died, the last conversation with my mentor had been about book writing. He’d been instructing me how to ghostwrite the memoir of a disability campaigner I knew who’d wanted to commit his story to paper – enough that he excitedly mapped out chapters, instructing me how to interview and coax out the shyness of my subject to expose the glittery gems of stories up to the light. That tome will never happen – but the edict of ‘if you ever sign a contract, send it to me stayed with me. To have faith in another human being is a powerful act; it echoes down the years when you least expect it. So I had to find a way to channel the immense feelings of grief and of loss.
An Autism friendly cookbook was needed, it seemed to me – and one where we’d be doing it for ourselves, by ourselves! So rather than plugging the junk science of ‘eat this food to cure yourself, a philosophy that espouses the poisonous idea that particular food is somehow ‘brain poison’, we could adapt and learn with a resource. 100 recipes, with an energy ranking, a duration, a hierarchy of skills for those who wish to learn a little bit more, as well as information for parents and teachers in dealing with sensory issues (rather than creating the assumption individuals are ‘picky’, ugh) – it all began as a 4:00am scribble at the back of a scruffy notebook. This is something I want to stand for – I have a privilege, and it should be used for the greater good.
The writing began in February 2021, finishing in December, with edits following in January 2022. 30 of the 100 recipes are from other individuals who are also Autistic; almost every individual involved is disabled/neurodivergent, down to the photographer of the picture of me on the back cover. As a journalist, I have often found newsrooms to be unwelcoming, even discriminatory sometimes – so making space for others was essential and was insisted upon from the beginning. It’s not a book for everyone – it’s not a neurodiverse cookbook as it would be impossible to write to be inclusive and accessible to all – but it’s an attempt to undo the damage done or at least start a conversation on this issue.
The Autism Friendly Cookbook is a love letter constructed out of necessity; it’s a resource infused with tiny moments taken from my lifetime. An ironic accident. Everyone needs a pandemic project – I just hope this is the start of a conversation we need to have.
The Autism Friendly Cookbook is out via Jessica Kingsley Publishers on November 21st this year. Click here for a list of all available retailers to pre-order your copy.
You can listen back to Lydia’s episode here:
https://pod.link/1545433620/episode/0b1245c64cef331b5db2ce1049c02cce
labledpodcast.co.uk 