Lorenz Wagner's The Boy Who Felt Too Much
Updated: Jan 10, 2022
For Neuroscientist Henry Markram, understanding autism became both a professional goal and a personal quest.
Inspired by his son Kai, Markram set about researching the way autistic brains work in the hope of finding insights that could help Kai to better navigate the world. After years of trying, he did just that, developing – in conjunction with his partner Kamila Markram – the Intense World Theory of autism. The theory posits that autism:
“is hyper-functioning of local neural microcircuits, best characterized by hyper-reactivity and hyper-plasticity. Such hyper-functional microcircuits are speculated to become autonomous and memory trapped leading to the core cognitive consequences of hyper-perception, hyper-attention, hyper-memory and hyper-emotionality.”
Or in other words, that autism is not (as traditional explanations assumed) a deficit of emotions, but a surplus. Autistic people have ‘hyper’ brains - processing more information, and recording stronger emotional responses to stimuli, than the brains of non-autistic people.
THE EUREKA MOMENT
Lorenz Wagner’s book The Boy Who Felt Too Much reads like an extended magazine ‘soft’ profile piece on Henry Markram. It is no surprise, then, to find out that Lorenz Wagner’s day job is in writing profile pieces for magazines. Half-way in, however, the book finally hits its stride when it delves into the science of the Markrams’ Intense World Theory of Autism. Wagner draws a vivid picture of the ‘eureka moment’ when the Markrams realised the implications of a discovery they had made in the laboratory (by experimenting on the brains of autistic rats):
“Henry and Kamila couldn’t contain their excitement. If, contrary to expectations, the cerebral cortex was disproportionately active, the impressions were amplified, and the autistic world was faster, louder, more colourful, how did it look in Kamila’s area of expertise, the amygdala, where memory and feelings are located? Would those be amplified too? ‘Imagine that, Kamila said. Then everything in the books would be wrong.”
Indeed, behavioural experiments supported their theory, with the autistic rats showing more profound and longer-lasting responses to external shocks. The result defied existing orthodoxy, but seemed to ring true when they applied it to their own experiences with Kai.
“Suddenly everything made sense. Kai had no deficit whatsoever. He didn’t feel too little. He felt too much. His withdrawal was not the disorder – it was a reaction to it, his personal 9/11 reoccuring [sic] on a daily basis … The sensitivity of autistic people was well-known. However it was consistently treated as a marginal aspect, a moving parenthetical, like the high-functioning savantism popularised by the film Rain Man. But this sensitivity was not trivial: it was the key.”
Most of the action of the book took place in the early 2000s, and the Markram’s paper first outlining Intense World Theory was published in 2007 While the Markram’s insights were controversial at the time, they are now widely accepted – although some of their therapeutic recommendations are subject to debate. As a parent of a child with autism, Intense World Theory also seems to ring true to me as well. It sounds like an eminently feasible explanation for the meltdowns, and for the over-sized reactions to seemingly innocuous situations.
The descriptions of Kai and of many of his behaviours sound eerily similar to situations I’ve experienced with my 8-year old son. He gets distracted easily, because he notices everything around him. His brain is restless and constantly moving from one task to the next - often before the first task is finished. A simple process like getting ready for school can go off the rails a dozen times, and gentle reminders are needed to bring him back to the task at hand (Have you finished your breakfast? You don’t seem to have put your clothes on yet. Have you brushed your teeth? etc ). It’s little wonder that sometimes things just become too much for him, and he needs to switch off and 'reboot'.
My son now has a suite of strategies at his disposal, and he’s getting better at knowing how to use them. For example, at school he has access to a quiet space in a little tent, laid out with cushions, where he goes to calm down when he is feeling overwhelmed or angry. He also has a pair of snazzy noise-cancelling headphones for when the hubbub of the classroom gets too much. At home we have a set night-time routine to help his brain slow down and settle into sleep: bath time, a few drops of melatonin, reading in bed and then a 20-minute “bedtime meditation” from one of the excellent mediation apps you can download onto a smartphone.
But it’s not just about helping him to manage his own emotions. As the book says (somewhat clumsily, and repetitively), people with autism don’t lack empathy, the rest of us lack empathy for them. More to the point, a greater general understanding of autism would mean that behaviours which often are seen as disruptive or strange (or naughty) can be put into context and seen through a more sympathetic lens.
Mind you, I guess we all could use a sympathetic lens once in a while.
MAN AT WORK
I’d just finished reading Annabel Crabb’s thought-provoking 2019 quarterly essay, Men at Work: Australia's Parenting Trap, when I started reading The Boy Who Felt Too Much. Men at Work lays bare our societal attitudes toward gender roles in parenting, and the contrasting expectations placed on mothers and fathers.
These expectations aren’t just cultural – they’re baked into our workplace laws through access to parental leave. To access the national Parental Leave Scheme you need to be the child’s ‘Primary Carer’. In other words, only one parent is allowed to stay home and look after junior, and overwhelmingly that means mum. The idea of both parents sharing parental responsibilities doesn’t even get a look in.
It seems completely anachronistic that we take gender equality seriously in so many aspects of life, yet attitudes to parenting remain so rigid. As Annabel Crabb asks:
“why do we assume that when there are two parents, one needs to be the primary, and one the secondary?”
PRIMARY CARE / SECONDARY GLORY
Which brings me back to Henry and Kai. It’s clear who’s the ‘primary’ and who’s the ‘secondary’ – especially given that Kai lived with Anat in Israel while Henry lived in Lausanne, Switzerland, running his research institute.
One thing that struck me was the sympathetic lens that Wagner’s book takes to Henry Markram’s long-distance parenting. The relationship between Henry and Kai takes centre stage, and the narrative is essentially about Henry’s heroic quest to understand the neuroscience of autism so that he can help his son. If Henry’s lack of one-on-one time with his son is mentioned at all, it’s in the context of the sacrifices he has had to endure for the greater good. Meanwhile the female characters, including Kamila and mother Anat, are all relegated to supporting roles. The key discovery that underpins the Intense World Theory, for example, was not uncovered by Henry, but by one of his research students, Tania (we don’t even get to find out her surname).
For sure, the world needs ambitious and talented people. Their success can benefit all of us, especially if they are finding cures for diseases (or vaccines for COVID-19) or broadening our understanding of conditions like autism. But such success in fields like science (or politics or sport) requires single-minded dedication, and comes at the expense of other things.
For people who are parents, dedication to a calling often comes at the expense of time with children. For men this is considered normal – no-one blinks if a man chooses to put career before family duties. But what of Anat’s sacrifice, effectively having to bring up Kai on her own?
Parenting is hard work. Single parenting is doubly hard. Single parenting a child with autism is exhausting. But the Anats of this world don’t get fawning biographies written about them. It’s the Henries who still get all the glory.