Review: The Story of Autism

In A Different Key: The Story of Autism. By Caren Zucker and John Donovan. Crown; 552 pages; $30.00

The countless struggles of autism through the ages

 

IVAN the Terrible earned his epithet; he even beat his son to death after a fleeting argument. Yet one man dared speak against him: a shoemaker named Basil, prone to wandering naked mid-winter, freely proclaiming his thoughts. The Tsar allowed Basil—now St Basil—to scold him without reprisal, believing that the nomad could read his thoughts and was exhibiting “extreme holiness”. Yet Basil could have been displaying one of the earliest recorded examples of the lack of social restraint associated with autism. Our understanding of autism has improved since Ivan’s time, yet the puzzle remains unfinished. A new book attempts to piece together the condition’s convoluted history. 

In a Different Key” charts the tortuous evolution of social, scientific and moral attitudes towards autism from obscurity to its current status. Caren Zucker and John Donovan—two journalists from ABC—have both experienced autism within their respective families. Perhaps as a result, this isn’t a compendium of impressive savant abilities. Rather, the history is explored with empathy, through those who have experienced autism at a similarly intimate level, or are autistic themselves. Messrs Zucker and Donovan have tackled the subject with a broad brush, yet the anecdotes are painstakingly researched, and intricately painted.

The book is awash with woeful tales. Some of the most harrowing reading describes the institutions mentally challenged children were banished to for much of the last century in America. Guilt-ridden parents were advised by medical establishments to forget about their “malfunctioning” offspring and get on with their lives. Children—many of whom were very aware of their situation—lived “with no toys, and with little or no clothing, covered in their own filth.” This took place “behind the world’s indifference” for far too long into recent history.

Life outside was equally grim: the book chronicles the innumerable struggles of parents against educational and medical institutions, which either refused to or chose not to recognise and support autistic children. One father, in despair over his teenage son’s prospects once he could no longer protect him, shot him as he slept. It is telling that this tragedy was met with a resigned understanding by some other parents of autistic children, who also feared the worst for their children, born into such an unforgiving world.

Over the years, treatments ranged from beating, to experimentation with LSD to the use of cattle prods and electrified floors to shock autistic children. Thankfully, such controversial ideas led to vehement backlashes from those who argued that disabled children should have rights, too. 

Conflict is undoubtedly a recurring motif. Bitter rifts divide families, scientists and organisations, even though the common goal was to “save” those with autism. Yet as recent developments suggest—characterised in the “neurodiversity” movement—the search for a cure is perhaps misguided. It was society’s unrelenting search for a “culprit” to a supposed autism epidemic that led to one of the worst cases of scientific misconduct in recent history. The MMR vaccine scandal—the fallout from which still lingers perniciously in science and society—is divulged fully and with appropriate contempt.

Told with such breadth and depth, this is an exhaustive historical overview, written in clear—albeit rather melodramatic—prose. It is not especially informative as to the current scientific understanding of autism, yet it does provide a fascinating insight into the personalities and rivalries behind scientific developments that often pass unnoticed to a public that receives simplified, attention-grabbing headlines and little else.

Many of the individual stories end well: autistic children eventually living fulfilled lives; parents seeing them do so after fighting for so long. Yet the story of autism is of course barely beginning. This chapter ends on an optimistic note, touching on positive developments in the assimilation of autistic people into society. But this transition is happening at too slow a pace. It is easy to judge past societies from the safety of future moral hindsight—as reading this book reaffirms. Rest assured, those who follow will judge us on how we act today.