Second paragraph of third chapter:
That wasn’t the first time that had happened, Gottfried’s grandmother told her. People often misjudged her grandson as slow and stupid. His cruel classmates christened him with a nickname that made her flush with rage: Gottfried the Fool. She knew that they were wrong about him, because he was so clever and earnest when his teachers called on him in class. But she had to admit that she, too, was often confused by his behavior.
A big thick prize-winning book by the late Steve Silberman, looking in detail at the history and practice of autism and neurodiversity, and how American society (and by extension, Western society) is coming to terms with making accommodations for people who, as he puts it, ʎlʇuǝɹǝɟɟᴉp ʞuᴉɥʇ.
There were a couple of chapters that really grabbed my attention. One was a section about Hugo Gernsback, who set up science fiction fandom as a safe space for people to be geeks and nerds, and whose own behaviour is recognisably on the spectrum now – for instance, his invention, the Isolator, allows you to concentrate on the text you are reading without sensory distraction and even has its own air supply.
The other striking chapter is very much less fun, looking at the early twentieth-century eugenics movement and at the Nazi policy of killing neurodiverse children. The psychiatrists responsible for these murders survived into successful post-war careers in Austria. It is pretty stomach-churning.
The story of the struggle for autism is generally pretty tough, though it has a hopeful end. I can see both sides; in the initial grief and confusion after B’s diagnosis back in 2000, I too was desperate to find a way that she could be ‘cured’, and I know of other parents in a similar situation who spent vast amounts of time, money and emotional labour on snake oil solutions for their children.
I fairly quickly came around to acceptance that our family was following our own path, and that society needs to adapt to our children’s needs more than the other way round. It’s a tough path all the same, and I felt many moments of solidarity with the people whose lives are discussed in Neurotribes; though the book doesn’t include much on those who are as cognitively disabled as our daughters.
The book also concentrates very much on the US policy landscape with only brief looks at what is going on in other counties (and nothing at all about Belgium). But I found it helpful in understanding my own thinking in any case. You can get it here.
This was my top unread non-fiction book. Next on that pile is The Light We Carry, by Michelle Obama.
For convenience, here is a reading list of other books I have read about autism:
Academic
Autism Spectrum Disorders Through the Lifespan, by Digby Tantam – covers the state of academic research at present; get it here.
How to Make School Make Sense, by Clare Lawrence – helpful advice for parents of autistic children in mainstream education; get it here.
Explaining Humans: What Science Can Teach Us about Life, Love and Relationships, by Camilla Pang – A short book by a biochemist who proudly flies the flag of her own autism diagnosis, explaining how people work from her point of view; get it here.
Representing Autism: Culture, Narrative, Fascination, by Stuart Murray – looks at cultural depictions of autism; get it here.
MMR: Science & Fiction: Exploring the Vaccine Crisis, by Richard Horton – explains the Wakefield hoax; get it here
Personal experience
George and Sam, by Charlotte Moore – bringing up two autistic sons; get it here.
The Strangest Man, by Graham Farmelo – biography of Paul Dirac; get it here.
Literary treatments:
The Curious Incident of the Dog in the Night-time, by Mark Haddon – classic novel; get it here.
Speed of Dark, by Elizabeth Moon – Nebula winning near-future SF novel with autistic protagonist; get it here.
Daystar and Shadow, by James B. Johnson – autistic kids after the apocalypse; get it here.
With the Light…, by Keiko Tobe – manga series about bringing up an autistic son in today’s Japan, sadly ended with the author’s early death. Eight volumes in English translation, the last much shorter. Vol 1 review; get it here. Vol 2 review; get it here. Vol 3 review; get it here. Vol 4 review; get it here. Vol 5 review; get it here. Vol 6 review; get it here. Vol 7 review; get it here. Vol 8 review; get it here.
