Mark Reece's Blog - Posts Tagged "autism"

The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida

My rating: 3 of 5 stars


This is a difficult book to review. I understand that there are questions about the authenticity of the authorship, which I don't think need to addressed directly in a review, except to the extent that the translation is awkward in places, with the second person tense regularly used, and constant references to 'guys' and other language that it seems unlikely that a thirteen year old would use. This makes some of the passages cringe worthy.

The book is mostly written in sections that begin with a question about autism, followed by the author's answer. Subjective experience is almost invariably generalized, giving many section an odd quality, as it is obvious that the author's experiences or opinions cannot be universal amongst autistic people. For example, there are a number of bizarre flights of fantasy in which the author speculates that autistic people might be a throwback to earlier stages of human evolution, are outside civilization, or are somehow not complete people. Of course, the author is entitled to their view, but it is curious that on the one hand they are knowledgeable about autism, and on the other, seem to have no awareness of how critical many autistic self-advocates are about those kinds of ideas.

I found the book to be more informative when the author spoke about the physical disabilities that some autistic people experience. Those sections were mostly written in a less florid style and seemed more believable. Assuming the authorship to be genuine, this was an interesting account of a subject that is difficult to understand by those who do not experience it.

The book also contained a number of short works of fiction, which were of a similarly mixed quality. Some were fairy tales and were funny and interesting; the longer works were often tedious.

It is difficult to know whether to recommend this book; I think it would be misleading for anyone with no knowledge of autism. It should definitely be read with caution, but there are some interesting sections.



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Late Bloomer: How an Autism Diagnosis Changed My Life by Clem Bastow

My rating: 5 of 5 stars


In this memoir, Clem Bastow analyses various aspects of her life in light of the autism diagnosis she received at 36, from her romantic relationships, to her special interests, to her education. Many of these topics are very familiar to the accounts of autistic people who were diagnosed as adults; however, they are told here with skillful writing, meaning that at no point do they feel like tropes.

One of the ways Bastow reviews her life is examining her romantic relationships in light of her diagnosis. She identified a pattern whereby masking (extensively modifying her intuitive behaviour in light of perceived social norms) made her vulnerable to abusive relationships. In this way, she describes the diagnostic process as being very helpful to improving her standard of life.

Bastow's lifestyle was unorthodox, including working irregular hours and regularly moving. However, for me, the most pleasurable part of the book was the joy she takes in her special interests (subjects that she hyper focuses on and knows a lot of detail about). Topics such as the Ghostbuster films, different foodstuffs, music, and sparkly objects, are described with delightful aplomb. Despite the difficulties Bastow faced in her life, she gives every sense that it has been full and well lived. (As an aside, the book cover is fantastically designed, and is entirely suited to her love of colour).

I'm never quite sure what 'being who you really are' means; this is a theme that Bastow mentions several times without elucidating with much clarity. Nevertheless, on her account, her diagnosis clearly helped her, and this memoir explores the themes that dominated her life with passion and verve in a way that makes it a delight to read.



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Helping You to Identify and Understand Autism Masking: The Truth Behind the Mask by Emma Kendall

My rating: 3 of 5 stars


This is a good primer on the subject of autistic masking, in which the author gives an overview of the way in which autism is diagnosed and classified, followed by a summary of what masking looks like, and its psychological effects. The author then gives their own experiences by way of example.

The book would have been helped by some notes or a bibliography, as although the contents tally with what I've read elsewhere, it would have been useful to know whether the author was drawing on personal experience or more formal sources in places. Given her academic background in the area, it is curious that she didn't choose to write a more comprehensive study, although the book is useful as it is.



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The PDA Paradox by Thompson

My rating: 3 of 5 stars


This short memoir details the struggles of the author to find a place in the world after he was diagnosed with autism, ADHD, and PDA (pathological demand avoidance, although Thompson has elsewhere given it an alternative title of 'persistent demand for autonomy'). The book is structured roughly chronologically, although is written in a stream of consciousness style. The author doesn't describe PDA (or anything else) systematically, but instead gives illustrates of how he thinks with a series of instructive examples, largely based around his experiences in school, various workplaces, and during different types of relationships.

Thompson doesn't seem to mind portraying himself as dislikeable. He describes many instances where he puts other people in danger or is actively abusive, such as when he drives when drunk or on drugs, punches a boy in the face for asking why he went quiet during a period of anxiety, and pisses in the butter of a housemate. The author doesn't offer excuses for these episodes, but the way they are told- as engaging anecdotes, creates a sense that they should be seen as in some way praiseworthy- as expressions of freedom or as a refusal to follow rules. In this way, it isn't clear whether the author is emotionally honest, or alternatively, somewhat slippery in how they are presenting themselves (or perhaps both). For example, the anecdote of the boy who was punched in the face would have had a very different tone if it was told in a more straightforward fashion, and focused on how badly he was injured. It is noteworthy that Thompson comes from a wealthy background, which perhaps explains why the worst punishment described for any of his behaviour is to be expelled from a series of schools.

It would be wrong to criticism the book for being unsystematic, as it is not intended to be an analytic review of PDA, but it is a shame that Thompson's wider thoughts about autism and the school system are so shallow. At several points, he suggests that children should be allowed to 'find their own path', and criticises schools and workplaces for their authoritarianism. And these positions are entirely reasonable, of course. But disciplinary practices are not wholly unreasonable impositions. People need to be prevented from drink and drug driving, from punching other boys in the face, and so on. Maybe it is too much to expect from a memoir, but passages where the author gave his personal philosophy were too often just annoying.

The book is a success in describing a way of being autistic that is very rarely presented. In his description of himself, Thompson seems very charismatic and engaging, and chaotic in his lifestyle, although he seems to be pattern seeking in some respects. Furthermore, he acknowledges that he has a tendency to want to dominate conversations. There is little autistic representation of characters of this nature, making it an interesting example of representation, and a worthwhile read.



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NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman

My rating: 4 of 5 stars


This was a very interesting book in many ways, although I thought it was poorly structured in places. Much of the book is devoted to a history of diagnostic procedures and the definition of autism as constructed by psychology. However, there were also chapters on historic figures the author considers might have been autistic, such as the scientist Henry Cavendish. These were interesting as vignettes, but the length of them distracted from the coherence of the book's narrative. It isn't obvious what the reader should derive about the 'legacy of autism' from Cavendish's limited food preferences, or tendency to avoid company.

As regards the history of the diagnostic procedures of autism, there are two main points of interest that I derive. Firstly is the complete lack of intellectual credibility of the leading practitioners in the field. The doctrines of many of the people described lack empirical support, lack diagnostic validity, and are contrary to the basic tenant of medicine, in that they make no distinction between on the one hand, bodily states that reflect ill health, and on the other hand, behaviours that might be considered social unacceptable in some contexts, but are not intrinsically harmful. The likes of Lovaas and Rimland took the view that 'x child is conducting x behaviour that is considered unusual, meaning that they are degenerate'. I don't see how that thinking can be classified as anything other than pseudoscience. It is no different than pointing to someone wearing red trousers in a society where blue trousers are the custom and saying 'yuck'. Obviously, red trouser wearing in those circumstances might cause problems, but that seems more relevant to sociology, or the fashion of hosiery, rather than medical science.

For the sake of clarity, some of the neurodivergent children described in the book (and in general) are prone to behaviours that do properly fall under the province of medicine, such as self-harming or depression. However, psychology seems to have historically been much more interested in trying to force people to follow the social norms of their time, rather than restoring them to good phycological health. I think there is a genuine science in this area that is gradually emerging, but also a tendency to absolute drivel, including the view described in the book that children became autistic because of their 'cold-hearted' parents. It is hard to imagine any other science where speculation of this kind with no credible empirical support would form any part of theory.

The second point that I derive results from the first, which is the extent to which neurodivergent people are de-humanized in much of phycology. Lovaas is described as conducting an experiment with a child in which affection was withdrawn to encourage socially acceptable behaviour. He also conducted multiple physical torture techniques, such as electrical shocks. His victims were often children or people with intellectual abilities. With great irony, he had the temerity to suggest that autistic people lacked empathy. The book contains a passage in which he inveighs against criticism of electric shocks by accusing his critics of 'sentimentality'.

Usually, torturing people only happens after they have been de-humanized, and that is evident in the language used to describe neurodivergent people both historically and currently. Again, Lovaas in the best example of this, claiming that autistic people "are not people, in the phycological sense". This attitude is essential to justify torture, just as regimes that have sought to commit genocide against particular ethnic groups invariably describe them as inhuman animals. This language has been normalised to a disturbing degree, such that it is described in passages in the book without authorial comment. As a measure of how unusual this is, one might consider a hypothetical analogy. Suppose one was to posit that the behaviour of phycologists needs to improve, given the harms their views have often caused, and that the best way to achieve this is to progressively burn them until they abandon their anti-social views. Such a suggestion would almost certainly be considered the fantasy of a mad or evil person. The reason for this, of course, is that phycologists are not a dehumanised group, and as such, even if burning them could be demonstrated to have a socially beneficial impact, harming them wouldn't be socially acceptable. 'Sentimentality' would prevent such an outcome.

There are contemporary echoes of this type of thought, described in latter sections of the book, in a discussion of vaccine 'controversy'. Putting aside the obviously pseudo-scientific nature of the claim that vaccines cause autism, even if it was true, it is grotesque to claim that children should be put at risk of death from infectious disease rather than being turned autistic. The eliminationist nature of 'anti-vax' positions as regards neurodivergent people has been too little commented on.

Despite that I enjoyed much of the book, there were many sections where I thought the author was overly journalistic, in flatly describing the views and behaviours of noteworthy figures, without giving a wider analysis. For example, the book described Nazi beliefs about the burden that disabled people pose to society, often described in monetary terms. There was a distinct echo of these views in eugenicist programmes in the USA to sterilize disabled people, and in the justifications given to forcibly 'normalize' neurodivergent people. Although the book contained a lot of interesting information, the reader was often forced to conduct such analysis themselves. Nevertheless, it was a compelling book, and I learnt a number of interesting facts from it.



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