There’s a brief but reflective detour in this hugely ambitious, perhaps definitive, telling of the autism story, some hundred or so pages in. Steering from the text’s omnipresent objectivity and exhaustively researched facts, the authors make a personal observation that, I believe, has universal resonance. Whilst discussing a depressingly common occurrence, where parents were battling for inclusion and rights for their child (this time in the 1970s, but it could be any time before or after then), they muse:
“It almost never occurs to people raising kids of “normal” health and abilities to ask where all of the other children are.”I’m not sure the authors totally meant it, but there’s a subtext here that distils the entire purpose of the book for me. Only when people question where the people with autism are can we live in a society that fully embraces the condition. And only a book like this can help to achieve that world; a book that doesn’t cease in tackling a history as complicated as it can be thanks to an ever changing diagnosis, heroes and villains, trends, science, supposed science, misplaced research, the list mounts.
At times it reads like a human rights tome with sensitivity stamped on every page. It becomes heartrendingly personal; an ode to the generations of pioneering parents who fought for people like me. I’d always had more than a hunch that a semblance of fortune was dispensed on my family that my son was born in the 21st century. Trawling through the at times barbaric environment (from Kanner’s refrigerator mothers to vaccine and mercury controversies) my hunch took hold and became a conviction.
The story is bookended with the account of Donald, the first person to be diagnosed in the 1930s and who’s still alive now. It means there’s an emphasis on humanity that offsets the often harsh truths of the book. Indeed a human filter covers most of the rigorously backed up prose. Turns of phrase - from the off - nicely fatten facts that could be starved of comprehension. For example, we are told that the very thing that rattles Donald most, is the ‘raucous rush of unpredictability’, something that chimes with my son, some 75 years and a world of discovery later.
Taking a linear approach must have been the only option open to telling the authentic autism history. And the sense of a comprehension of this complex condition mutating and morphing over time is clear.
We discover the cruel and psychoanalytical interpretations of the 1950s and 60s that were so damaging and devastating for parents. Reading about Bruno Bettelheim, whose book The Empty Fortress likened children with autism to the prisoners’ gaze he’d seen in concentration camps, thus likening mothers to vessels of neglect, is particularly upsetting. It makes my awe at the fortitude shown by people like Ruth Sullivan whose determination to better the world (and succeed in doing so) even greater.
The book forensically dismantles these and later pernicious theories and falsified treatments that lacked any science. And we move deliberately and diligently to the modern world of autism advocates, adults as part of the debate and a true understanding of the condition as organically distinctive. The positive positioning as the book ends is in many ways thanks to the generations of parents and professionals who fought the battle.The one troublesome theme is as a result of that linear approach. Yes, there’s a loose curve which strengthens the story. But by not being able to land on Lorna Wing’s inspired ‘triad of impairments’ and first articulation of ‘autistic spectrum disorder’ till two thirds of the way through, it’s difficult to grasp autism’s symptoms ‘infinite shades of intensity’. It’s a journey of discovery I guess, and the reader can make no conclusions till the end. Perhaps not a problem.
Revisiting Donald as he reaches his 80th birthday is the most poignant and beautiful end to this important book. Learning that he’s grown up in a town that seeks him out, celebrates him and honours him, is life affirming stuff. A microcosm of a perfect world where it does occur to people to ask where the other children and adults are.
(I always try to reply)