How To Be Autistic

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‘A passionate, hugely articulate argument for the acceptance of difference. Every teacher, every parent, every person should read this book.'—Meg Rosoff

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An urgent, funny, shocking, and impassioned memoir by the winner of the Spectrum Art Prize 2018, How To Be Autistic by Charlotte Amelia Poe presents the rarely shown point of view of someone living with autism.

Poe’s voice is confident, moving and often funny, as they reveal to us a very personal account of autism, mental illness, gender and sexual identity.

As we follow Charlotte’s journey through school and college, we become as awestruck by their extraordinary passion for life as by the enormous privations that they must undergo to live it. From food and fandom, to body modification and comic conventions, Charlotte’s experiences through the torments of schooldays and young adulthood leave us with a riot of conflicting emotions: horror, empathy, despair, laugh-out-loud amusement and, most of all, respect.

For Charlotte, autism is a fundamental aspect of their identity and art. They address the reader in a voice that is direct, sharply clever and ironic.  They witness their own behaviour with a wry humour as they sympathises with those who care for them, yet all the while challenging the neurotypical narratives of autism as something to be ‘fixed’.

‘I wanted to show the side of autism that you don’t find in books and on Facebook. My story is about survival, fear and, finally, hope. There will be parts that make you want to cover your eyes, but I beg you to read on, because if I can change just one person’s perceptions, if I can help one person with autism feel like they’re less alone, then this will all be worth it.’

This is an exuberant, inspiring, life-changing insight into autism from a viewpoint almost entirely missing from public discussion.

Charlotte uses they/them pronouns.

Bookswithamb, Bookstagrammer

9 April 2020
First and foremost, How to be Autistic is a memoir about the childhood and further experiences of somebody with autism, but it’s also a breathtakingly honest exploration of sexuality, gender, identity and mental health. It is hard hitting stories from school, interlaced with thought provoking poetry. ⁣
As a neurotypical person seeking out an own-voices perspective, I really appreciated the metaphors Charlotte used to describe the differences in the way we perceive the world, and correct common misconceptions exacerbated by tv and other forms of media. I also loved their sense of humour that offered some relief and the ending was uplifting whilst remaining real. ⁣

This is such an important book for anyone to read; for neurotypical people to gain a better understanding of how we can do better in the future, and for other people on the autism spectrum to gain comfort in the knowledge that there are other people out there experiencing similar things. This is the sort of book that leaves you just that bit kinder than when you started.
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Yasminerosereads, Bookstagrammer

9 April 2020

Charlotte Amelia Poe’s fantastic debut, HOW TO BE AUTISTIC, stemmed from a video they made, of the same name, which won the Spectrum Art Prize in 2018. A beautifully honest account of growing up autistic, despite not getting a diagnosis until their twenties, Poe counters the dominant narrative that there is one way of being autistic or that there are certain characteristics that you have to abide by in order to be diagnosed as autistic.

In a truly enraging, at times, and emotional account of their experience going undiagnosed throughout the whole of their childhood and teenage years, Poe documents the times they were failed again and again by systems that overlooked them as just a melodramatic troublemaker. These personal essays can be difficult to read at times, and Poe doesn’t hide the fact that they are also difficult to recount in writing. They explore topics of mental health, bullying, relationships and sexuality. But Poe’s determination shines through - a determination to provide an own-voice account of autism by and for autistic people, a determination to help neurotypical people understand and do better for autistic people and a determination to create beautiful art.

I loved the personal poetry Poe includes between certain essays - hopefully there will be more of their creative writing to follow this debut - and I loved reading the essays on tattooing and fan fiction as Poe’s passions really enforced how powerful art and creating can be in thinking beyond how others define you. A really stunning collection of personal essays.

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Whitbread_Reads, Bookstagrammer

9 April 2020

So I have had this book on my shelves for a while and kept meaning to pick it up, thank you so much Myriad Editions for doing a readalong to raise much needed awareness for Autism Awareness Month. ⁣

I do think this is an important read for everyone, in understanding how difficult daily tasks can be for people who aren't neurotypical. ⁣

For those of you who didn't see/read my last post, the reason for wanting to read this is obviously because I wanted to be more educated in the matter but also because my 3 year old is currently going through the diagnosis process...Charlotte put points across from views I wouldn't of necessarily thought of and I found it a really interesting and insightful read.

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Francesca Happe, Times Literary Supplement

31 March 2020

You will be told you are a troublemaker, that the thing you can’t put into words yet that divorces you from everyone else is responsible for the way the other kids pick on you and you really must try harder to fit in.” In the memoir How To Be Autistic, Charlotte Amelia Poe describes how hard life is for many autistic children and adults. The primary reason is often not their autism but the demands of, and sometimes mistreatment by, the people around them. There are shocking descriptions here of bullying not only by peers but also by teachers. Even when trying to help autistic people, researchers, clinicians and other professionals are often inadvertently giving the clear message that they need to change because, as Poe puts it, “you are wrong, and what you do and say is wrong”.

That is not to suggest that autism does not present its own challenges, or is not disabling in a neurotypical world. How To Be Autistic powerfully evokes the sensory and motor challenges that Poe, like many autistic people, experiences. As a child they (Poe identifies as non-binary) stopped brushing their teeth. That led to perhaps their first trauma, from dental work; their panic during treatment was so severe that they were prescribed diazepam. Eating is a challenge, too, when anything new is resisted; “Rest in peace, Tesco’s Vegetarian lasagne, you were a god among foods and your replacement will never compare”. Motor difficulties include not only coordination problems – making school requirements for neat handwriting and ball skills a nightmare – but also problems initiating even desired actions.

These difficulties, however, are nothing compared to the mental health difficulties that dog Poe from their early school years. Crushing anxiety and panic attacks, accompanied by vomiting, are an almost constant companion throughout childhood and adolescence; Poe also loses a decade to agoraphobia. The descriptions of depression are visceral: “you become a husk of a person, utterly devoid of anything … Being depressed doesn’t necessarily mean you want to die, it just seems like the easiest option”. Only recently has research uncovered the worryingly high rates of suicide among those on the autism spectrum, especially among autistic women. Symptoms of post-traumatic stress disorder, including flashbacks, must have made this memoir particularly hard to write. The acknowledgement of PTSD in autism is a new development; autistic people may be traumatized by experiences (bullying, for example) not recognized as traumas in some diagnostic systems.

Given that Poe was in contact with a variety of health professionals from the age of eight, it is extraordinary that it took until they were twenty-one for autism to be considered as a diagnosis – and then only because their mother by chance saw autistic adults on the television programme Employable Me. Why would it take so long? Diagnostic overshadowing – the failure by a clinician to look beyond the first presenting problem (depression, in Poe’s case) – is common. Eating difficulties in autism, for example, which are often to do with sensory dislikes (of certain textures and so on) or a need for control (such as maintaining an exact weight) rather than body- image issues, may lead to a diagnosis of anorexia nervosa, with autism overlooked; recent research suggests that around 20 per cent of women referred for anorexia nervosa have undiagnosed autism.

In addition, Poe did not conform to a narrow stereotype of autism. They had friends, and their intense special interests – in writing, fandom, body modification and tattoos – were not so unusual in their focus as to raise a red flag. Indeed, they provided a means for Poe to find their tribe – including the online community, with all its benefits (and risks) for marginalized groups. Camouflaging autistic traits, often by putting on a neurotypical “mask”, is one way in which many autistic people cope with social demands, try to escape bullying and stigma, and negotiate school or the workplace. Poe describes their face and body tattoos as “a sheet of armour … a distraction from the way I can’t quite make eye contact … it’s just nice to be thought of as ‘the girl with all the tattoos’ before ‘the girl with autism’”. Camouflaging and masking, however, can have severe costs in terms of burn-out and the loss of an authentic self; and they can compound vulnerability. Poe describes an intense online friendship that was exploitative and wounding, as well as college “friends” who took advantage of their being “a chronic over-sharer” to bully and betray them.

By the end of the book, Poe has successfully tackled many challenges and gained recognition and greater knowledge of their own worth through their rawly honest short film, How To Be Autistic, which won the inaugural Spectrum Art Prize. Poe describes this book of the same title as flowing out of them, “this burst of words, anger, sadness, hope, joy, trauma”, as they search for identity, struggling “to be the person I knew I was supposed to be”. This book will help many readers going through similar experiences, as well as their families; one has to feel for Poe’s mother, who – as Poe makes clear – fought so long and shouted so loud for her child, with so little help forthcoming. “By continuing to fight,” writes Poe, “every damn day, in a world that is not ours and is not shaped to handle us, we show how strong we are, and every second we’re breathing is in utter defiance of everyone who ever told us we were wrong.”

Francesca Happé is the co-author of Autism: A new introduction to psychological theory and debate2019, and the co-editor of Autism and Girls, 2019

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Ambitious about Autism

13 November 2019

The book is about Charlotte’s life growing up in a village town in Suffolk, going through school life thinking there was something wrong - but with teachers, parents and even the health service not being able to pinpoint what it was. Finally, at age 21, Charlotte was diagnosed with autism and it felt that all the pieces fit together. With this, they made a raw video about living with the condition and submitted it to the Spectrum Prize. The latter half of the book details the journey of submitting the video and then winning the prize.

The book overall is a fantastic, sometimes harrowing read which does not talk down to you and really feels like Charlotte is there with you, telling you these things. If you are looking for a great, no-nonsense memoir which does not gloss over anything, this is the book for you.

Before we set off to the book launch, we sent Charlotte some questions about the book and autism. Here are their responses:

How did you find the writing process for the book?

I started writing the book as soon as I got home from winning the Spectrum Art Award, it felt like a natural extension of the video and it just flowed out of me, I didn't eat, didn't sleep, just wrote and wrote until it started to resemble what it is today. There were moments when I could barely look at what I'd written because it was so triggering, even now, and there were moments of catharsis too. And I realised how lucky I am to have such a supportive family throughout it all, and what a privilege that is.

What is the one thing that you wish neurotypicals knew about autism?

I just wish they understood that we're people, not stereotypes. I worry neurotypicals will read my book and think 'ah, this is what an autistic person is like', when in fact we are all so unique and individual - that's what makes diagnosing autism so difficult, if we were all the same, people wouldn't slip through the net so often! So, to summarise, I wish neurotypicals know about our individuality, and also our ability to, in the right circumstances, thrive and create great and exciting things.

Do you think fandom is a welcoming space for people with autism?

Definitely. I think it's the one place where you can be truly unironically enthusiastic about something without being called cringy or worse. We live in a world where you have to act a certain way, have a certain disinterestedness about yourself at all times and about the things you like, whereas with fandom you can pour your heart and soul into something and find other people who want to engage and find the same characters and stories as intriguing as you do. Online spaces like that are great at combating isolation, and at bringing people together who wouldn't have found each other otherwise.

Do you think the representation of autistic people in the media has gotten better or worse?

I worry, with the anti-vax movement ramping up lately, that we are still seen as an unfortunate side effect, and I still don't see autistic characters that I can relate to personally. I was lucky enough to help out as script consultant on a short film which has just been entered into the BFI film festival called 'Our Sister', which features an autistic character, but her autism is not the overlying theme of the film, rather, she is autistic, and she is in the film. And the character is played by an actually autistic actress, which I think is brilliant. So, I think it's a mixed bag. We need to break away from the stereotypical 'all autistic people are young white boys' narrative and start including people from all walks of life, because that's what autism is, it doesn't discriminate, and it can be anybody. And I'd really like to see that more often.

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Turnaround 2019 Nonfiction Staff Picks

We hear autism being talked about a lot, but nine times out of ten it will be by neurotypical people who can only ever be outsiders looking in, and often in way that can impersonal and degrading. Written by autistic artist and writer Charlotte Amelia Poe, How To Be Autistic flips the perspective completely, retelling Charlotte’s experience growing up autistic from harrowing middle school days to the life-changing moment when they won the inaugural Spectrum Art Prize. I blew through this thing in under a week. It’s an incredibly candid, impassioned account that’s as difficult to put down as it was sometimes to read. But it was also funny, hopeful and most of all human. I was able to interview Charlotte for the blog and you can check out their responses here.

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