"Everyone should have access to the kitchen"

A conversation about accessibility and cooking with Lydia Wilkins of The Autism-Friendly Cookbook

Eating and drinking are the most fundamental human needs, and yet when you live with a long-term health condition, getting these needs met can be…a challenge. 

From allergies and intolerances, to barely having the energy to get out of bed (let alone prepare food), simply feeding yourself can become a minefield. 

Over the years, I’ve had periods of time where my “safe foods'' could be counted on one hand and I couldn’t eat without experiencing severe and debilitating reactions. I’ve subluxed joints trying to lift pans. I’ve slipped and injured myself on wet patches on the floor. I’ve poured boiling water over myself. I’ve struggled to hold onto a potato (weirdly specific but this one still eludes me). I’ve smashed more things than I can count. And I have a rather inconvenient habit of forgetting that I’m cooking as soon as I move away from the kitchen.

Let’s just say watching Sebastian watch me clattering around the kitchen with fear in his eyes is amusing.

Having health that fluctuates means that there are times when I can’t even think about getting out of bed to get food, let alone cook. But there are also times when I can actually be in the kitchen and prepare a full meal.

I have a spectrum of ability that can change on any given day, and that has required a huge learning curve in terms of skills, adjustments, and techniques that I have developed over the years to help ensure that I eat, and can make the most of the time I spend in the kitchen.

And honestly, if I didn’t live with someone who loves to cook (and also happens to be bloody excellent at it) my food life would look entirely different.

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In today’s issue, I’m joined by journalist Lydia Wilkins, author of the upcoming book The Autism-Friendly Cookbook and the host of the Aut-Cuisine podcast, which will explore the intersection between disability and food.

I had the opportunity to read an advance copy of the book a few months ago, and what struck me the most was the rarity of seeing accessibility and adaptations front and centre when it comes to cooking. 

The book explores the idea that there is no one “right way” to do things, and that preparing food is something that could be more accessible to so many people, if only they had the tools and support to be able to feel confident in the kitchen. 

Whilst I am not Autistic, I know a lot of people living with chronic illnesses are, and with each recipe offering “a duration, so that you can plan how long a task will take – with extra time added on, just in case, an energy rating, and a skill level,” alongside ideas for sensory seekers and avoiders, clear instructions on pre-preparation and breakdowns of different tools and terminology in the kitchen, I hope this interview will be of interest to anyone who is passionate about exploring accessibility in cooking.

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Natasha Lipman: Hi Lydia! Thanks so much for joining us in The Rest Room! To start, I’d love to know why you decided to write a cookbook? 

Lydia Wilkins: Hi Natasha, thanks so much for having me; this is such an honour - I was a fan of your work prior to us meeting and working together 🙂

Funnily enough, the cookbook was something of an accident! I always joke that it’s my favourite lockdown project for this reason - it was the catalyst that afforded time to work on a manuscript. I always viewed books as the domain of ‘proper journalists’ - those that I’d read as a child and teenager - and not something I could actually do! 

In the weird hubris of restrictions and lockdowns, I became aware I was eligible for Personal Independence Payment (PIP). That ended in a degrading tribunal, because of, well, ingrained ableism! 

I was rejected because they said I could “just learn” the skills you are assessed on. The inaccuracies on the page described a person I did not recognise.

A lot of it was around “she can just learn to cook”. By that logic I must suddenly be able to become non-disabled, and therefore ‘normal’? 

The more I looked at it, the more it seemed a resource was needed around Autism and cooking/food preparation. The frustration I found from others on researching was almost tangible. 

I pitched it, forgot about it, got accepted - and here we are, two years (nearly) later!

Natasha: What were some of the things you specifically struggled with in the kitchen? And did this have any impact on the way you viewed yourself/how others viewed you?

Lydia: In a word? Lots! This is quite an interesting question Natasha - you’ve really read my mind on this, strangely, because this feels a bit like coming full circle. 

The kitchen is perhaps where I appeared my most disabled, where my Autistic hallmarks manifested themselves the most. I absolutely hated cookery lessons at both secondary schools I attended; there were no adaptations whatsoever. 

For a very long time - probably until as late as last year - it had a huge impact. I often viewed myself as stupid or a failure, unworthy, and just about every worse thing you could think. I had to put up with discrimination, too. I was viewed as a liability in some respects, as well as pitiful - such as not being allowed to cook with full autonomy. 

Be it the sensory exterior elements, such as too much noise (which is painful due to hypersensitivity and can impact my speech and skill competency), to struggling with my motor skills (like when unscrewing a lid), not understanding the Byzantine language of a recipe, and issues around my interoception, there were a huge range of issues. 

Interoception is a system in the body that allows us to interpret sensations, such as emotions, heat, thirst, etc; in Autistic individuals this can be impaired, prompting the need for adaptations such as visual reminders, like a bottle of water always being on hand.

This is sort of funny, in a way, to come full circle. There was a pejorative term I won’t repeat that followed me around for a long time in education - but it led me to meeting my former mentor Harold Evans. (I promise this is relevant.) 

We’d worked together, he kept my counsel - even trying to set me up with someone! The last phone call before he died, he’d expressed faith I could write a book in such great detail, it was a very surreal experience. The full circle is that this took me back to being at secondary school, ultimately.

That someone has faith is powerful, a privilege in a way. I'd not have dared to even attempt writing otherwise. 

This was stressful to pull together, but also quite cathartic in writing away my grief. I think I grew up a bit in writing this.

Natasha: When we talk about accessibility in cooking, what does this mean? What can make the kitchen such an inaccessible space?

Lydia: I can only really talk from my viewpoint and not for everyone else. A kitchen is not exactly disability-friendly. Even if you consider the way cooking/baking/food preparation is taught in mainstream schools, it is very exclusionary.

A lot of interviewees for the book spoke to the impact of bullying, discrimination, a poor relationship to food, being ill-equipped to deal with food as a whole. Everyone should have access to the kitchen. 

Sensory issues prevented me from engaging; the assumption I found as a child and teenager was that others would assume my challenges were 'put on'.

I may look very jerky in my movements, such as when it comes to stirring; that is just how I look, but I can still manage if left uninterrupted.

It's the noise hypersensitivity, the incomprehensible language of recipes, and other internal factors, too. Not having adaptations - such as a jar opener - make the space so much more inaccessible to me personally. 

Natasha: What makes a cookbook “Autism-Friendly”? 

Lydia: I'm hoping this is something of a first, in a way, as I have yet to find a cookbook for my own individual needs! 

I have adapted the language - it'll be more direct. The timestamps are more accurate in terms of how long the execution of a recipe takes. The first half of the book is a compilation of information for teachers/parents/guardians, especially when it comes to sensory issues; simply changing the format of a meal can be crucial, and yet so many non-Autistic parents I spoke to or interviewed had no idea about this. 

When it comes to the second half, which is 100 recipes, all have a sensory/diet key to indicate needs, along with an energy ranking (to save spoons!), adaptations about meal variations, and more. 

30 recipes are from other Autistic individuals. Almost everyone involved with this book is Disabled/Neurodivergent - and you will find a celebration of us, in that this has no 'junk science' on how to ostensibly 'cure' yourself. This is something joyful. 

Natasha: In the book, you say that being accessible often means rewriting the ‘rule book’ - how did you start going about rewriting the rule book when it came to your own cookbook? What were some of the rules you wanted to rewrite? 

Lydia: Ha ha - good point! So many rules we have around food and cooking are just arbitrary - and they have no real logic or meaning. 

I want most to see the death of the idea that we have to be perfect in the kitchen - instead we should be allowed to fail in order to learn, rather than being socially penalised and ostracised. If a parent or teacher does not understand, I want them to just ask us - rather than overruling on the matter of sensory issues, for example. 

Adaptations are so often pitied from a societal viewpoint - why? They help us. They are not shameful. Yet almost every interviewee who I engaged with - not all made it into the book - had no idea about how to adapt, which was just astounding. 

Natasha: How did you decide what aspects of accessibility to focus on? 

Lydia: This is not a book for every neurodiverse condition - it is just a book written for Autistic individuals. It's in the title - and representing all under the umbrella term would have been impossible. No one would also read a book that long. 

That limited the scope of what I can and can't do, from a journalistic perspective. I also planned a lot, specifically in terms of structure when it came to writing particular chapters. I also had a brief to work from. 

It's just so interesting that a lot of non-disabled individuals who I know have ordered a copy - and have told me that adaptations would also make their life easier. It's almost like accessibility benefits all! 

Other disabled individuals - a lot who are chronically ill - also ordered a copy, because of needing to manage their own energy limits. There is an unaddressed niche here. Someone chronically ill should write that cookbook! 

Natasha: So, you knew that you specifically wanted to focus on Autism - how did you narrow down the specific Autism-friendly aspects to include in the book?

Lydia: It sort of happened almost by default. I often find that saying ‘I have x issue’ needs to be backed up by the context - so the diagnostic explanation. This also builds into an old culture of having to justify ourselves constantly. Personally I find that a very limited number of people just accept I am on the spectrum, without the added extras! 

I started with explaining how a sensory profile works; we all have 8 senses (sight, smell, touch, taste, hearing, vestibular, interoception, proprioception), instead of the usual 5. Most people do not know this - and that is fundamental, especially if you are a parent.

In Autistic people, these senses can either be hyper or hypo sensitive - either too much or too little. That informs the need for input/output, if you are a sensory seeker or an avoider. We are all different - so access will look very different for some who can’t filter noise, like me, compared to an auditory sensory seeker who needs all the extra noise! 

In putting to paper, that needed to be spelt out. I also wanted Autistic individuals to say what they needed - so they were given a specific part of the book, just speak to that. 

When I write, I plan very heavily - any piece needs to meet a brief. If your work is lost in translation, if it goes on too long, or the thread is not clear, you have not done your job!

Natasha: Something that we often talk about here at The Rest Room is how one person’s experience of a chronic illness or disability is just that, their experience. Did you have any concerns writing a book for a specific community - and how did you go about representing voices and experiences that weren’t your own? 

Lydia: This is an issue I have thought about a lot as a journalist, and it was at the forefront throughout writing this book. I have written in the book that I am not representative of everyone, just because I am Autistic, it doesn’t mean I know everything about the spectrum! 

I believe in giving up space to others - so it would not be for me to create a cookbook for a disability demographic I am not a part of, but I would use my privilege as a journalist if I'd covered that group. Writing a book is different from what I do as part of my day job. 

Almost everyone involved are Autistic. That was important to me from the get-go; I believe very much in pulling people up and providing opportunities when you can.

My illustrator is Autistic and she expressed on Instagram she wanted to do book illustration. My brain basically said “now we make it happen!”

I interviewed 2 experts for the book, both who have extensive experience working with Autistic adults, and have allowed the lived experience of others to inform their work. I vetted both of them to ensure they were the right fit - and that this was not just a token gesture of any kind.

I also stuck to legal definitions for continuity, while allowing individuals the autonomy to use their own preferred language to describe themselves. Autism is legally a disability in the UK, according to The Equality Act. Without that, we'd not be entitled to extra help in education, financially, with housing, etc. 

That is a fact, but you can also choose the way you prefer to identify - I will not take that away from you. Autonomy to interviewees must always be given. Each interviewee was also given the chance to look over their final recipe before going into the book, too. The recipes also have the same formula, which minimised potential issues. 

Natasha: And even bringing in other voices, it is impossible to represent every need or experience that people have. How did you go about navigating this? 

Lydia: You cannot write or represent everyone; it is silly to assume that someone online has to caveat every little thing. So the front of the book has a disclaimer - that language is that of the individual, as well as to underline that this is of course not for everyone. 

Some Autistic individuals may have been lucky to have had help in education, or to work in the catering industry - they are the exception, because the overwhelming need is so inherently there for a resource of some kind. 

It is important to have that boundary in place, as well as to manage expectations. I'm a journalist who just happens to be Autistic - writing to be understood by a multitude of people is hard work! 

Whilst there was a lot of positive reaction on social media, people would say “I wish there was an Autism friendly cookbook” and other users would tag me to highlight what I was doing, there were also critiques. 

These ranged from not writing a broader ‘neurodiverse cookbook’, writing a cookbook for Autistic people at all, not using the right language, and for community not being included in the book. This was before anyone had even read it.

Natasha: How did you decide on the recipes for the book - and how you would present them?

Lydia: Honestly? Badly. There was no real process - some were collected while writing, for example. 

My great-grandmother died just as I was finishing it off; I miss her dearly, and it was through this that I wanted to put a memory of her onto paper. It was Malteasers - her absolute favourite treat - and the rich, papery smell of Lavender that had to be put together in some way. 

I met 2 wonderful friends of mine while writing - one wanted to create a vegan cooking show, the other was absolutely crazy for cake. Elements of the conversations gave way to each recipe. Autistic individuals responded via Twitter with their recipe suggestions - they were just filed into the relevant chapters of breakfast, lunch, dinner and dessert. 

I'd re-create meals with a twist, or from memories of student life - such as the lamb kofta recipe, as well as a particular style of wrap. In terms of presentation - you will have to wait to see :) 

Natasha: Are there any skills, tools, or ways of presenting the information that you wish you’d included in the book that you didn’t? 

Lydia: I wish I'd been clearer on language. I make the point again and again to not infantalise - but since finishing, it has occurred to me that so many people do not understand disability related language. 

The basics are not to use a child-appropriate tone for young adults and older individuals; talk to us, not through us. And don't use phrases like 'special needs', 'high functioning', or anything based around intelligence. I sort of thought this was kind of common sense! In essence, if you aren't sure, just ask us. And don't be a d***. 

Natasha: You mentioned that you struggled a lot with cooking throughout your life. How did you start learning the skills and adaptations to be able to write this book? Is this something you had support to do, or did you learn as you wrote the book?

Lydia: I haven’t really learnt! This is the most ironic thing. I am not a good cook. Autism is arguably a fluctuating condition, in that it varies daily - yet a good day would mean that there is so much surplus preparation anyway, which a non-Autistic individual would not have to do. I struggle a lot still, such as with my terrible interoception, I have a very limited diet, along with things such as safe foods and fixations. 

This is one of the most complex, most difficult parts to my existence. Simple dishes are what I rely on; there are a lot of pre-prepared elements, along with meal planning, and so much more. 

I also have visual reminders to not forget to eat and drink, along with regular phone calls and text messages from relatives. I feel embarrassed about this, as we have a lot of shame connected to food. I am perfectly healthy in this respect, but standards of another kind are so often forced on me - I really really dislike people commenting when I order the same thing when we eat together. 

It’s not funny, or a joke. My adaptations do not negate everything - and I am not suddenly ‘not disabled’ by them being in place. I have things like adaptive equipment - like a jar opener, a different shaped grater - as well as visual reminders. I always have a bottle of water in reach, too! 

I learnt some things thanks to a few classes for research purposes; Robin Van Creveld is a friend and mentor, the director of Community Chef in Lewes. He is an absolutely wonderful man, he has the heart of a poet, and the ability to empathise with anyone. We’d reconnected by coincidence over Zoom in lockdown - by accident - and I took a few classes until around November last year, just as Omicron happened. 

He was interviewed for the book and my podcast. He is extraordinarily patient, and talked me through the basics - i.e why to let your baking always cool down once out the oven - without ever telling me off for being annoying, which is what has happened a lot. 

He also taught me a few things that my spiky profile would not have let me otherwise - such as the right kind of knives for preparation, grip, etc. But I didn’t really pick up skills - this was more factual, which is also extremely helpful, too. So many book interviewees wanted to know the science of why a chemical reaction in baking creates the final product, for example.

Robin is one of the most fascinating people I have ever met; his travels to places like India inspired the business, as well as the philosophy. He was absolutely fundamental to the book; I treasure Robin. There was a moment in the class where my sensory issues came up - and rather than being confrontational, he turned this into a way for everyone to learn, and to do better. The other pupils were so lovely to me, and so supportive. That has never happened to me before. I treasure that. 

Asides from that, all I have really done is to adapt spoken words into a recipe format! I am a terrible cook!  

Natasha: In your introduction you say that the book is, first and foremost, for Autistic people. But you also say it is for others, too. Who else could benefit from the book? 

Lydia: So many parents would benefit from this. We have so many ideas about children being 'fussy' when eating. Yet sensory issues on the consumption of food, as well as the environment, are rarely taken into account. I saw this when working for an Autism affiliated organisation throughout lockdown; parents so often did not recognise their child was not being naughty. We punish this as insolence, yet this can have such utterly profound consequences. 

I personally want to give a copy of this book to teachers who work to teach cookery/baking skills, just because I feel strongly that everyone needs to have access to a food education - and this can be far more inclusive, if we just make tiny adjustments. A little support goes a long way - and recognising we are all different, and not just 'stupid' or not trying. 

This seems to have been picked up by chronically ill individuals, which I just absolutely love - largely because of the similar need to manage energy levels. I hope I have 'done right' in this sense. 

Most of all, this to me is something of a love letter to other individuals who were like me. I hated being in education, bitterly. I was coltish, shy a lot of the time, often very lonely, lost in my own universe facilitated by the libraries at my respective secondary schools. If there is anything that just one person gets from this, in the sense of there being a benefit, it is okay to be yourself and to have these sensory related issues. We're human. We're doing just fine.

I was really sorry to hear that you are still dealing with some symptoms after contracting Covid in March of this year. Has this experience changed your relationship to food and cooking? And did the process of writing this book help you in any way when you started becoming poorly?

Right now I am in a bit of a medical limbo. I had Covid 19 at the end of March - and the symptoms still persist. I have been bounced around everywhere, tested for just about everything. It hasn’t gone away fully; I now have a diagnosis of BPPV (Benign paroxysmal positional vertigo), which is being sorted out gradually now.

It did change my relationship with food for a very long time; it was horrible, and really upsetting. 

My smell and taste were fully intact, but it was like every possible sensory issue had magnified itself. Food felt 'wrong' in every possible way. It was not enjoyable - more just eating to try and, well, function as a human being! 

I loved food prior to infection; it took me a long time to fall back in love with this universe.

Added to this, no one talks about the horror of the fatigue - preparing any food was impossible for such a long time, meaning pre-prepared frozen food (including ice lollies) were my go-to staples for months.

My executive functioning was the worst it has ever been. I'm experiencing weird dizziness still, which impacts cooking in a huge way - I often sit, now, as standing is very hit and miss. 

The book was all finished prior to me becoming infected - and for a long time I did not want to look at recipes! I swore off ever writing a book again - and much to my parental amusement, a second seems to be on the way. 

Natasha: You’re also launching a podcast to accompany the book (I will be a guest!) which will take a broader look at accessibility and cooking. What are some of the topics you’ll be covering?

Lydia: The Aut-Cuisine Podcast will explore the intersection between disability and food - and how this impacts our respective relationships. There were so many tangents that could not go into the book, while needing their own space. 

Guests include people like Jameisha Prescod of You Look Okay To Me, Natalie Lee of Style Me Sunday, Robin Van Creveled of Community Chef, and others. 

We will be looking at ableism in food culture and how to unpick that, how to teach, the impact of Covid-19, and so much more. The first episode drops September 26th. 

Natasha: What are you hoping that people will get out of your book?

Lydia: It's a privilege for any work to be read; journalistically I think that even if one person reads your work, you have done your job, but any more than that and it is a privilege. 

I'd like anyone Autistic to know that they are entirely normal - and that simple strategies are available for particular issues, though not all. We have been let down by inaccessibility so very often. 

This is just a small gesture, really - if you're talking about this, then I have done what I intended to do. Stories do not belong to us, not really, in the end - this is a way of passing on the baton to others, I'd like to hope.

Natasha: And to end, what are your favourite recipes in the book?

Lydia: That's so hard! And I'm going to change my mind as soon as I answer this... 

There's a strawberry smoothie that I absolutely love. It takes little energy to create, and can do wonders in terms of if you are experiencing an interoception related issue, or if you need to just stop and sit if you're feeling overwhelmed. 

My illustrator for the book, Emily over at @21andsensory on Instagram, contributed a salad lunch recipe - and it is absolutely glorious. I am absolutely delighted that she came on board to add an extra visual dimension to this book; her work is brilliant, and she put up with my madness, too! 

I have a sentimental soft spot for a few of the 'dinner' related recipes. There is a fish and chips recipe, based on a memory of when I was a child; my grandfather created this from scratch, and it is exactly what feels like home to me. 

The Autism-Friendly Cookbook is out on the 21st November. You can find Lydia on Twitter.