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.

Second paragraph of third chapter:

A variety of brain areas implicated in ASD were considered in Chapters 1 and 2, but no focus in the brain emerged as commonly causing ASD. There is no autism producing lesion. The lesion approach to communication disorders had already been challenged by Geschwind² who resurrected the connectionist approaches of the nineteenth century. He argued that symptoms occurred not because of an area of brain damage, but because brain areas were disconnected. A connectionist, or network, approach to ASD is now widely accepted, as is the brain’s interaction with the environment. This new network model, and the evidence for it, is considered in the second part of this chapter.
² Geschwind, 1970

This is a hefty volume on autism spectrum disorders, meant for a more expert and knowledgeable audience than me, but which I’m glad we have as a convenient reference point.

(Incidentally, I was stunned and appalled a couple of years ago when I received an email from a person who had put as part of their signature that they knew the cause of autism: “aged sperm”. My daughters were born when I was 30 and 35; my sperm was not all that aged, I think. This person was just casually putting out offensive misinformation in their email signature, to friends and strangers alike! Mind-blowingly inappropriate!)

The book is pretty comprehensive, looking at the rather slim information we have on physical neurological changes in autistic people – this research is very much a work in progress – and in much more detail at the developmental phenomena and educational and health support that are needed; biased of course towards the US system, but with due note being taken of experiences from elsewhere.

The one topic I would have liked to se a bit more on is autistic regression. Our oldest was developing normally until about 2 years old, then lost much of her ability including her speech. One can speculate that in such a case, the brain is somehow overwhelmed – and permanently damaged – by the need to process all the stimuli that a developing child becomes aware of. But it is mere speculation.

On the other hand, I felt very comfortable with the description of the vast amount of research activity that is going on. As consumers, if I can put it that way, we see only the outputs and the occasional tests that we are invited to participate in ourselves. It’s helpful to know that there is a big academic infrastructure behind it all.

One interesting point that I will have to ponder: do we talk to ourselves mentally when we think? And what does this mean for the cognitive abilities of people who don’t have language?

Anyway, you can get it here.

This was the very last book acquired in 2016 that I got around to reading, and I actually finished it last month, nine months after I finished the last book that I acquired in 2015, so I am speeding up.

Last book acquired in 2016, read in August 2023 (Autism Spectrum Disorders Through the Lifespan)
Last book acquired in 2015, read in November 2022 (Rauf Denktaş, a Private Portrait)
Last books acquired in 2014, read in October 2021 (The Empire of Time and Crashland)
Last book acquired in 2013, read in October 2020 (Helen Waddell)
Last book acquired in 2012, read in May 2020 (A Sacred Cause: The Inter-Congolese dialogue 2000-2003)
Last book acquired in 2011, read in October 2019 (Luck and the Irish)
Last book acquired in 2010, read in January 2019 (Heartspell)
Last book acquired in 2009, read in December 2016 (Last Exit to Babylon)

The unread pile from 2017 is a lot smaller than the 2016 unread pile was last November, so I’ll hope to be expanding the above list again before too long.

That opens up the 2017 books:

• Shortest unread book acquired in 2017: A Rumor of Angels, by Dale Bailey
• Non-genre longest on the unread shelf: The Various Lives of Keats and Chapman: Including the Brother, by Flann O’Brien
• Non-fiction longest on the unread shelf: Will We Ever Speak Dolphin?, ed. Mick O’Hare
• SF longest on the unread shelf: Major Matt Mason: Moon Mission, by George S. Elrick
• Top unread book acquired in 2017: Dawn of the New Everything: A Journey Through Virtual Reality, by Jaron Lanier