Reviewed by Patricia Simms-Reeve
This is a scientific work which is far from being burdened by complicated data and convoluted explanation. It tells the story of a remarkable family whose son Kai is autistic which was formally diagnosed when he was five.
His family is extraordinary. Not only are his parents exceptionally devoted and patient, they are also both gifted scientists. His father, Henry Markram, is a renowned neuroscientist, one of the finest in the world.
His family knew Kai was no ordinary child. This was dramatically obvious when he stroked a cobra which was ‘dancing’ to a flute in Nepal. Instead of watching with cautious fear as everyone else was, he went up and stroked its head. Life became unpredictable and fraught as he grew older and his parents and older sisters learned to care for him in the best way they could.
First, there was finding the school best suited to Kai. Israel had a reputation for accepting disability better than any other country. When their Olympians won nine medals, in the same period, their Paralympians won 380. Most schools tried to recognise the importance of ritual for autistic children, which in Henry’s view, was insufficient. Henry Markram realised that this was a field that must be investigated in order to help parents with autistic children.
By studying autistic rats bred with the genes, he began a four-year journey focusing on inhibitor cells. As recalled with the cobra incident, autism can mean lack of inhibition usually inspired by the fear response. Although he had a world-best laboratory with researchers of the highest calibre, no conclusive results were found in that time.
Over time, however, Henry and his team developed his theory of Intense World Syndrome. This means that Kai and people like him cannot forget overwhelming experiences. The autistic brain is hyperactive – above and beyond the norm. There follows, in this fascinating book, an account by Wagner, just how difficult life can be for the autistic person. When stimuli or experience comes flooding into their brains, they shut down or retreat. Their sensitivity is a burden which has to be managed.
For decades, autism was regarded by experts in the field as a disability in varying forms. Instead, the extraordinary activity of the brain was, in fact, an explanation for this but this was not widely accepted. Even though Kai’s father and the team showed data that demonstrated this after long exploratory work with neural cells, it was rejected by many in the field. As Kamila, his second wife, an eminent philosopher as well as psychologist said, “Nothing is objective. Expectations guide results”.
The autistic person’s need for reliable structure in their lives is clearly shown in an incident at an airport in Africa. The family loved to holiday there, in a simple environment free from excessive stimuli. Ideal for Kai. On one occasion he was to fly back to Switzerland, where the family now lived and worked. As a teenager, he had often flown unaccompanied. This time, disaster struck. There were too many changes. The flight was delayed and then changed to KLM instead of El Al. This meant his meal would be different. On top, of it all, he wasn’t assigned a window seat, which he always had. A meltdown ensued. His behaviour resulted in a lifetime ban from the airline.
Parents should be sensitive to all their children but particularly to the autistic child. Should they become distressed, often the best reaction is to hug, hug, hug!
It is now known there are 200 genes linked to autism. Manganese, mercury and alcohol can act as triggers. The search continues to identify others. One glass of alcohol in pregnancy, when the neural tube is closing, gives a 1/50 chance of autism.
Lack of stimulation is calming. This explains that in previous generations, prior to the evolution of our mega cities, autism was rare. Now, one in fifty-nine babies is likely to develop it. With this hyper-exciting environment most live in, autistic people suffer as though they are experiencing 9/11 constantly. Add to this their prodigious memory, life becomes very difficult. Surprises are a constant burden too.
Because it is now estimated that 2 billion people on the planet have a form of mental illness, our knowledge of the human brain is urgently needed to be extended. The EU has contributed 1.2 billion euros to the Human Brain Project, which aims to build a simulation of the brain, hopefully within the next ten years. It took the evolving universe 11 billion years to build the brain, and the neocortex is still evolving. What thrilling possibilities lie ahead!
There is a very interesting side-road. The research into the brain hopes to find the connections that autism may have with other conditions like epilepsy. Meantime, a link between child prodigy and autism has been established as chromosome 1, which signifies incredible memory, eye for details, insatiable passions.
The boy who felt too much is now in his twenties and very happy. He has a job he loves, which involves people, and a devoted girlfriend. As this book so wonderfully shows, autism makes a person different but they too can contribute in many and surprising ways, especially if their father is an eminent scientist as well as a loving and determined human being……
This book would be welcome to all who are interested in this, sadly, too common condition. It is written so well that those with no scientific background will find it a voyage of discovery. It is full of many propositions that are ground breaking. It is a revelation to learn that autism can be an asset, a gift. Ultimately, knowledge is the key, and understanding autism can help to devise the best strategy to guide us.
The Boy Who Felt Too Much
by Lorenz Wagner
Allen & Unwin