Book Review of Unmasking Autism - An Essay

Introduction

Anthropology and ethnography place autistic people’s experiences at the heart of this approach to studying autism (Solomon, 2010). Oliver Sacks, was the first person to link anthropology to autism and he noticed in the medical context that there was a push for autistic people to appear normal rather than to live happy full lives on their own terms (Solomon, 2010).

The World Health Organization defines health as follows, “health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity,” (WHO, 2022). Autistic people are particularly predisposed to being unhealthy, especially when considering the mass amounts of stress that the autistic population has to face.

Autism can be understood as a series of sensorimotor differences (Boldsen, 2018). When autistic people experience the world in such a fundamentally different way from non-autistic people which can cause misunderstandings. The self-defined most pervasive trait of autism is sensory differences, this often ranks above social differences (Belek, 2018). Autism is most famously categorized as being a disorder of withdrawal, starting with the discovery of the disorder by Leo Kanner (Solomon, 2010).

Sensory Differences

Sensory issues or differences are often noted by autistic people as being the most noticeable difference that they have from neurotypical peers (Belek, 2018). Sensory sensitivities were noted by many autistic people as being vital to their self-discovery as autistic (Belek, 2018). Another aspect of sensory differences would be the autistic connection to stimming. Stimming is repetitive self-stimulatory behaviour that is used for self-regulation (Malcolm, 2021). According to Malcolm (2021) stimming can aid in getting “unstuck” from overwhelm and provide the physical stimulation to do so, horseback riding can be used as a focused tool for the same benefits. Autistic people have two differently defined stages of being overstimulated, the first is overload (also known as sensory overload) and the second, more severe stage, is shutdown (Belek, 2018). Autistic horse therapy was developed with the biological process of raised cortisol levels in mind (Malcolm, 2021). Autistic people are especially susceptible to having elevated cortisol for prolonged periods and horse therapy includes the repetitive feeling associated with horse riding in the process of reducing stress (Malcolm, 2021). Without stims, autistic people can end up feeling detached from their body and this is a distressing feeling (Boldsen, 2018).

Social Aspects

Observations of autistic people’s behaviours can be misinterpreted as social impairment (Boldsen, 2018). Autistic people are often better at recognizing fixed patterns and this can cause difficulty when socializing with neurotypical peers (Fein, 2015). Neurotypical people often have a “bottom-up” approach to socialization structure and autistic people are often approaching socialization from a “top-down” perspective, leading to more difficulties with socialization (Fein, 2015). Autistic people often have emotional regulation difficulties when compared with same-aged peers (Fein, 2015). Autistic people have higher instances of having mental health issues than the general population (King, 2010). Autistic people have many risk factors that are associated with vulnerability to abuse (King, 2010). An autism diagnosis in late life can be used as a starting point for research and self-acceptance (Leedham et al., 2019). Women in the study performed by Leedham et al. (2019) found power in being diagnosed with autism.

In cultures where independence is valued, such as North American cultures, it may be harder to ask for social support because this kind of support is seen as a negative thing (Jacobson, 1987). Support is often associated with reciprocity and those who feel that they cannot offer something of equal value in return may choose to not ask for help (Jacobson, 1987). Support can also be a thing that restricts freedom because it needs to be repaid in the future (Jacobson, 1987). Social support often plays a role in resilience when living through traumatic events but, autistic people are less likely to have strong social support networks (King, 2010).

The Book

Unmasking Autism by Devon Price quickly became my favourite thing that I’ve read all year. I cried multiple times from feeling understood and I’ve recommended it to anyone who even mutters the word autism. What makes this book so good though?

This book is a self-help book aimed at people questioning if they are autistic. It is full of the mixed experiences of being autistic, including positives and negatives, sometimes of the very same symptom. I find Dr. Price’s book Unmasking Autism to be an excellent guide to autism and it connects well with anthropological perspectives. He cites the psychiatric anthropologist Roy Richard Grinker in his chapter about making the world more welcoming to autistic people. Though this book is intended for recently realized autistic people it is also useful in the academic context. I find that Unmasking Autism points out areas in the study of autism that are lacking research. This book combines ethnography with other styles of research for a more balanced approach.

Chapter 1 covers characteristics of autism, that it often co-occurs with other disorders, and terminology. Chapter 2 has a focus on who would be missed by the medical system or “masked” autistics. Chapter 3 informs what masking is. Chapter 4 explains the toll that masking has on the autistic self. Chapter 5 takes time to reevaluate stereotypes. Chapter 6 is about embracing autism. Chapter 7 stresses finding relationships that embrace the autistic self. Chapter 8 societal changes that would make the world more welcoming for autistic people.

From that quick summary of the chapters, you may see that the topics build off of each other in a logical way. Chapter 4, titled “The Cost of Masking” is particularly salient to the conversation of the differing needs that autistic people can have and the harms associated with hiding them. Some of the harms include eating disorders, dissociation, substance abuse, becoming part of high-control groups, and compulsive people-pleasing (Price 2022).

Upon examining the index for terms involving “sensory” I found sensory adaptation, sensory avoiders, sensory-friendly public spaces, sensory overload, and sensory seekers. Sensory adaptation is the only term in the index that is correlated to only one page in the book. The other four sensory terms correspond to multiple pages throughout the book. Mentions of sensory overload throughout the book take into account personal experiences. An example on page 97 of how someone may hide sensory issues, “a person might camouflage their auditory sensitivities by gritting their teeth through the pain and never complaining about it, or they might compensate for it by wearing subtle noise-cancelling earbuds that don’t stand out as unusual” (Price, 2022).

Just thumbing through the book I found multiple instances of autistic people being emotionally expressive. A worry for a former ABA provider “she worries she conditioned her patients to be easy to manipulate and abuse” (Price, 2022, p. 101). Within the same page the worry of autistic people being taught to “look normal” echoes Oliver Sacks from 50 years earlier. In chapter 3 there are many examples of social situations that may lead a person to mask, so they don’t face intense bullying or abuse.

Unmaking Autism is especially useful for the wide variety of sources that Dr. Price includes. His book focuses on health in the context of self acceptance leads to better health outcomes for autistic people. The reduction of stress is a particular focus of health impacts and autism. There are other books that are self-help books for autistic people but, Unmasking Autism is particularly good at considering differing genders and sexualities. The majority of research on autism excludes those who are genderqueer and Dr. Price’s perspective shows that gender is relevant to the study of autism. This book can be used as a starting point for many research questions and that in itself is valuable but, it is also a great wealth of sources for a research paper.

- Kaeli-Rae McCormack, 2022

References

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