In a different key
Autism has always been around me. It seemed like this mysterious condition that blocks the gears spinning in someone’s head. Even from the outside, it is clearly a life changing condition, both for the individuals and their families. It’s a condition that I’ve been interested in, but never took the time to learn about. Fortunately, Caren Zucker and John Donvan, both parents to Autistic children, did all the leg work for me in their account of Autism, In a different key.
The blue puzzle piece, a logo often used by autism charities
What is Autism? This is a surprisingly complex question. Indeed, the definition of autism has changed significantly over the years. The main challenge is that autistic traits are not binary, but rather a spectrum of behavioural characteristics. Autistic individuals can include any combination (both incidence and severity) of traits such as aversion to making eye contact, bouts of tantrums, tendency to hurt oneself, limited capacity for verbal / auditory communication, lack of a theory of mind, etc. Some autistic individuals lack the capability to form a complete sentence, while some can be extremely articulate, and even become masters of particular subjects (e.g., Temple Grandin, a cattle expert usually associated with having Asperger’s’ syndrome, in one end of the autism spectrum). In a different key does a great job explaining how the medical profession and the public navigated this messy landscape of traits, progressing from calling everyone mentally feeble or “retarded” to the more nuanced definitions used today.
What surprised me, however, was our lack of understanding of the underlying causes for Autism. I don’t mean to say that all autism treatments are voodoo medicine. Psychologists and Psychiatrists have developed a whole host of interventions like the Applied Behavioral Analysis (ABA, basically conditioning autistic individuals to stop certain behaviour such as hitting oneself) that worked wonders on many, and certainly improved from the defeatist approach of just institutionalising autistic children for life. However, today we still don't understand the genetic or biological basis of the condition. We know the symptoms but not the cause. In some forms of cancer, we understand which exact genes can become “stuck” and cause abnormal tumor growth. This allowed doctors to move from just aggressively hacking away tumors (only for more to grow back) to more targeted therapy on specific cells and genetic pathways. In Autism, given our limited understanding of its mechanics, there are many things that remain unexplained, e.g., why infants tend to develop seemingly normally until they reach age 1-2 then suddenly regress and why autistic individuals seem to lack a theory of mind1. As a result, some of the treatments used in the past, while no doubt backed by theories (often with little supporting evidence), have not withstood the test of time. For example, it was common in the 60s and 70s to blame autism on “refrigerator mums”, who supposedly didn’t show enough affection for their children and caused autism. Other even more ridiculous treatments like facilitated communication (helping autistic children type out messages instead of speaking, which proved to be bogus) and embrace therapy (literally hugging your kid more) also became popular only because we don’t understand autism's causes. More than anything, In a different key shows that medicine today is still a work in progress.
Flipping through the book, it also struck me that medicine is as much of a scientific endeavour as it is a social movement. While many of the doctors and psychologists deserve credit, their work wouldn’t have been possible if without motivated activists promoting their causes. The real heroes in the autism battle are the concerned parents who first started clamoring for more research into the condition and relentlessly sought public attention, all while taking care of autistic children. This is not unique to autism. Again looking at cancer, one could also clearly see the impact of activism. However, what’s clear from the book is that activism still takes a long time – in the case of autism, the fight for more research and treatment has been raging for 70+ years. Nor is the path towards “cure” or more successful interventions a straight one. Reading through the stories of autism organisations coming and going and NGOs fighting each other, I got the sense that we are on a journey that is progressing in the right direction, but only over a long time. What’s also interesting is that Autism research has largely been done in the US and the UK. I do wonder how the process would have played out in countries where the lobbying / research grant system is not as developed.
In a different key is a very interesting book on autism in layman’s terms. Well worth a read.
1. Apparently, some autistic individuals lack a theory of mind. This means that some autistic individuals cannot think from other’s perspective. See the Sally-Anne test for how this is tested – super interesting. https://en.wikipedia.org/wiki/Sally%E2%80%93Anne_test












