Nothing About Us Without Us. Book Collection

A curated collection to accompany the “V/Meste” programme, dedicated to Autism Awareness Month.

Photo: Vadim Shtein

“Nothing about us without us” is one of the key demands of the autistic community regarding inclusive projects and the representation of neurodivergence in the media. With this demand in mind, the latest addition to the GES-2 Library is a selection of books about autism and autistic experience written by autistic authors.

Compiled by
Beth, with the active support of other members of the “Neuroset” community.

The first part of this collection comprises memoirs and autobiographies. One example is Opening Doors of Hope (Russian edition) by Temple Grandin. In these memoirs, Grandin describes her life and the challenges of growing up as an autistic person. The book was published in 1992, so some of the author’s statements now seem questionable//read as dated. For example, autism cannot be “overcome,” as Grandin presents it, nor can it be cured; it is inseparable from the person. All the same, Grandin’s book is a useful tool both for neurodivergent people looking for ways to make everyday life easier and for neurotypical readers who want to learn more about autism.

Many of the authors featured in this selection describe the difficulties they faced in obtaining a diagnosis, as Fern Brady does in Strong Female Character. For several years, Brady tried to understand “what was wrong with her.” After realising she was autistic, Brady spent years seeking an official diagnosis. Melissa Perron, author of the novel Beautiful as a River (Russian edition), found herself in a similar situation. At first, Perron did not even suspect she might be autistic because she did not fit stereotypes of autism portrayed in the media. Perron’s book reflects on the experience of recognising and accepting her diagnosis.

The story of the graphic novel Maria and Me (Russian edition) by Maria and Miguel Gallardo centres not only on Maria, an autistic girl, but also on her neurotypical father, Miguel. Drawing on their experiences of a summer vacation, Maria and Miguel speak candidly about the difficulties they encounter in communication and shared activities. Their family holiday is full of challenges, such as Maria’s sensory overload and Miguel’s uncertainty, but also full of joyful moments and mutual support.

The second part of this collection comprises fiction inspired by authors’ personal experiences and emotions.

In the novel Nedobraya, Ivliss Hausman develops the theory that legends about changelings — fairy children left in cradles in place of human infants — are actually about autistic people. The book’s protagonist is a changeling girl who tries to protect her human sister but encounters hostility from the human world, the schemes of the fae, and her own sensory difficulties.

The protagonist of Alena Aleksina’s novel Sut’ veshi [The Heart of the Matter] is an autistic young woman named Liza. Though she is a brilliant mathematician, her difficulties with communication mean she has no university degree and works as a cleaner. One day, she notices something suspicious in her employer’s apartment, and decides to find an explanation on her own.