‘the boy who felt too much’ by Lorenz Wenger (Arcade Publishing, New York, ISBN:9781948924788 hardback, 9781948924795 ebook) was a book I asked for as Christmas present – and I read it cover to cover yesterday. Admittedly it’s not a very long book (222 pages including acknowledgements), but I found it very, very interesting, honest and the scientific research that is within has confirmed many things that I suspected and that we are doing most things right.

It’s the story about renowned neuro-scientist Henry Markram’s research into Autism that was driven by his young son’s diagnosis. It also talks about the struggle to get a diagnosis for Kai, and also their journey with him – and it’was such a relief to see a world leader in neuroscience make the same mistakes the rest of us have.

Their research has shown that rather than being unable to feel or feeling less, autistic people feel more; the region of the brain that ‘feels’ be that joy, fear, worry feels more. Therefore the fear response is greater and the memory of that response will last for longer. Surprises are usually seen as a negative thing because something unexpected will trigger a chain reaction of feelings, and as these will be felt more, it isn’t a good thing. In addition: ‘Autistic people are neither oblivious to feelings, nor do they lack empathy. They just experience the world as so painful that they retreat.‘ and also ‘Individuals with autism spectrum disorder often report that looking in the eyes of others in uncomfortable for them, that it is terribly stressful, or that “it burns”. Traditional accounts have suggested that ASD is characterized by a fundemental lack of interpersonal interest; however, the results of out study align with other recent studies showing oversensitivity.‘

This definitely fits with my limited observations. I obviously live with a young person who is austistic, and so I have experienced the highs a lows first hand, but he is just one person with ASD. I have also taught autistic teens and young adults, and every person is different. However, they all have certain things in common. Most have been overwhelmed by different stimuli, the stimuli may be different, and ranged from crowds to smells to swearing to noise to heat, and so on, but it was when the stimuli got too much that they struggled where most neurotypicals would be fine – they were over stimulated, and so were oversensitive. The book also talks about the need to retreat into a bubble to get away from the real world – and again, this is something we see regularly!

Another excerpt from the book which really, really spoke to me was this:

‘It’s hard on parents when their parents are sick or disabled. Many doctors and psychologists have taken an interest in this burden writing books and essays about it. Bouma and Schweitzer, Hastings and Johnson, Sanders, Morgan, Weiss, all the usual suspects have weighed in. They all reached the same conclusion: no chronic illness, no disorder or disability causes parents more suffering than autism. Particularly if it’s a severe case of autism and the child withdraws from them entirely, offering them no recognizable love, no words, no smiles, their grief is as deep as humanly possible.

The parents cited in these studies all say variations on the same things: It costs you so much strength. You feel wired constantly. You’re always looking out for them. You stop doing things for yourself. You don’t go out anymore. You feel ashamed. Friends stop visiting you. You stop spending time with your partner because you’re both too tired.’

It’s the last sentence that got to me. We do so much as a partnership, but it is exhausting, and we often sit in the evenings absolutely shattered and barely talking. We spend lots of time together, but there isn’t much conversation as we are both empty from juggling work and family. To read that this is normal, that we’re not alone feeling like this has been such a relief – which is why I’ve shared it with you. I am going to make sure that we make an effort to do things together – even if it’s just a trip to the supermarket or walking the dog. If nights out are difficult, we’ll make the most of escapes in the day time.

The book itself is easy to read, there aren’t many parent-guilt parts (there is a bit about how things that happen in the womb can trigger ASD in susceptible foetuses, and another about how stimulation in early years can also have an effect on the severity of ASD, but that’s about it). They do test on rats to investigate brain activity (they breed rats with autism, and then they are killed and the brains investigated) which seems a little harsh as they talk about the problems with the experiments and the retests, but until there is an artificial brain, there isn’t a viable alternative for these kinds of experiments, and so there is the dilemma about whether animal testing is a necessary evil, or just an evil. To be honest, they found things out that I suspected, but without the lab evidence the rest of the scientific community would have viewed their hypotheses as either untested or anecdotally proven.

Animal testing aside, I would definitely recommend this to anyone who has a link with an autistic individual, be that through family, work or friendship. My next step is to find the scientific studies and data as they have published everything as open access, so Google Scholar should be able to find the published articles. When I have found them & read them I will report back!