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 debate, 2019, and the co-editor of Autism and Girls, 2019