This is an enormous book, 962 pages long, 702 of that text (with the remainder consisting of encyclopedic notes, a lengthy bibliography, and an index).
The book is about how parents deal with exceptional children, covering ten categories of exceptionality, in the titles their chapters: Deaf, Dwarfs, Down syndrome, Autism, Schizophrenia, Disability, Prodigies, Rape, Crime, and Transgender.
Two bookend chapters — “Son” and “Father” — touch on the author’s own relationships to his father, as a son; and then his late-in-life decision to become a father himself, which, as a gay man, he did via surrogacy.
I haven’t read the whole book, just the bookend chapters and the chapters about autism and prodigies. I knew of Andrew Solomon, best known before this book for one on depression (The Noonday Demon), and had heard his TED talk several months ago discussing the themes of this book and his journey to becoming a father himself, Love, No Matter What. Then a couple months ago there was an essay in Slate, For Gay Parents, Deciding Between Adoption and Surrogacy Raises Tough Moral Questions, that mentioned Solomon’s book and waggled a finger at him for not taking the option of adoption more seriously. (Well, everyone in such a situation considers these things, and reaches their own decision; who is John Culhane to judge? Was my reaction.) So I ordered the book and over the past few weeks have read significant chunks of it.
Solomon is a mesmerizing writer, and he spent 10 years researching this book, interviewing 300 families (including on many topics not included in the final cut of the 10 categories listed above). His narrative alternates been journalistic accounts of the conditions themselves, their histories, and how society deals with them, with anecdotal accounts of the families or individuals he meets. Those case studies range from excruciating to revelatory. Solomon’s narrative is a blend of cogent summarizing of exhaustive research, with matter-of-fact reflection that displays striking insights.
A few highlights and quotes from the chapters I read. (If I had more time today, I would have condensed it.) In the middle two chapters, I’m mostly omitting the many case studies he relates.
Chapter I, “Son” (pp 1-47)
- This chapter is both an introduction and conclusion to the book — the remaining chapters can be read in any sequence — with some details about the author’s childhood, as a son.
- There’s no such thing as reproduction; children are at best blends. People pride themselves on being different from their parents, yet are sad at how different their children are from them.
- ‘Vertical’ identities are those we share with our parents– skin color, language, usually religion.
- ‘Horizontal’ identities are those we acquire otherwise – being gay, disabled, genius; in these cases we find identities from peer groups.
- Thus the distinction between ‘defects’ or illnesses and ‘identities’ can blur.
- Author is dyslexic, and also gay. Often asked when he knew he was gay. Gradually. He recalls awkward parties with classmates; being teased on a schoolbus; living in Manhattan and easily finding sex but then being ashamed about it, ready to die if anyone found out.
- In 1963 homosexuality was an illness (e.g. Time Magazine quote, p15.7); yet everyone had friends they knew to be gay.
- Today being gay is still regarded by many as a crime, illness, or sin, p16, with debate on whether it’s chosen or not. If so, can it be unchosen — thus the religious right and its deprogramming efforts. If not, then is it a kind of debilitation? [[ The correct answer is: it doesn’t matter; let people live the lives they want to, whatever the reason. ]] Many parents would abort a gay child if they could. Author would regret the disappearance of this identity.
- But eventually the author accepts himself. “Keeping homosexuality locked away within me nearly destroyed me, and bringing it forth has nearly saved me.”
- Other conditions might be subject to ‘selective abortion’ or ‘commercial eugenics’, thus eliminating variety. At the same time, the internet allows groups of like-interested people to contact one another. p20.9 “Social progress is making disabling conditions easier to live with just as medical progress is eliminating them.”
- Parents blame themselves differently depending on conditions regarded as hereditary v environmental, 21-22. Difficulties in caring for disabled kids their entire lives. Out-of-home placement used to be common, until a 1972 revelation of the horrible conditions inside a home for the mentally retarded led to the closure of most such institutions. This book is about families who accept their exceptional children.
- Social movements have debuted in sequence; p27 for trends; the disability movement aims to find accommodation of differences, rather than erasure. p28m Multiculturalism [[ which the right rejects ]] “rejects the 1950s vision of a world in which everyone is subsumed by uniform Americanness, and chooses one in which we all inhabit our own treasured particularities.”
- Is ability to avoid certain disabilities a kind of eugenics? p29m. A collision between these ideas and the right of legal abortions. Some argue against the entire Human Genome Project, as implying there is some perfect genome.
- And so on, discussing ethical qualms, reactions of different kinds of parents, and how insurance companies decline to treat some conditions as ‘cosmetic’.
- People interviewed for this book, the author found, were uncomfortable about being grouped with those suffering other conditions. (See list above.)
- Writing this book has largely cured author of a sadness, a lingering resentment of how his parents treated him for being gay. We come to accept even our hardships; how the concept of nirvana means accepting every part of life, 47t. “This book’s conundrum is that most of the families described here have ended up grateful for experiences they would have done anything to avoid.”
Chapter V, Autism (pp 221-294)
- “The hallmark of progress is the retrenchment of diseases. Countless infectious illnesses are now prevented by vaccines or cured with antibiotics; HIV can be controlled for many people with antiretroviral therapy; deadly cancers can be forced into permanent remission.” But some conditions are not diseases. “Genius and criminality continue to appear at a constant rate. But, mysteriously, autism seems to be on the rise.”
- It’s a syndrome, not an illness. The rate has gone up from 1 in 2500 births in 1960 to 1 in 88 today. It seems rooted in the disruption of social function, 222.4 – see list of symptoms 222.5; include difficulty understanding metaphor, humor, irony, and sarcasm .6; arranging things by size; food rituals; sensory overload .8
- The cliché is that the syndrome impeded the ability to love. It can be difficult for parents to love a child who apparently does not love them back; or are they just unable to express it? It’s Pascalian, 223.9
- But another perspective is that of neurodiversity, p224. It’s not just a disability, but another kind of identity.
- The word was first used in 1912. Asperger in 1944 described a similar condition, but his work didn’t become known until 1981; to him subject were often highly competent in certain ways, dubbed ‘little professors’, often hype-engaged, talking incessantly or standing too close, and yet have to learn what facial expressions mean.
- Author gives example of friend who played the same Philip Glass CD all weekend, p233. And who liked to drive around the city for 10 hours a day, getting to know it. [[ I like Philip Glass, but I never play the same CD all day or all weekend. ]]
- Some autistics are completely nonverbal. Some may abruptly begin speaking later; or type but not speak, 242t.
- There is no one condition, or core deficit. One notion is ‘mindblindness’, the inability to understand that other people have independent minds. Other suggestions 246t.
- 249m or an inability to avoid brain overload.
- There’s correlation to older fathers. The rise in cases might be an effect, in this era of online connectivity, of ‘associatative mating’, or prospective parents with limited social skills nevertheless finding each other and have children, p250m.
- There’s a 60-90% correlation among identical twins; 20-30% about fraternal.
- Progress has been made to ameliorate various specific behaviors, 253 – and then they become non-autistic behaviors (!). So some behaviors can be treated.
- More males are autistic; perhaps if women are empathizers and males are systemizers, males are more prone to extremes of the latter behaviors.
- Bruno Bettelheim, working with inmates and Dachau, mistakenly concluded that autism was linked to parental abuse; some today condemn him for that mistake.
- P260 are the numbers increasing? Apparently; factors why. Possibly some combination of environmental factors.
- But likely not vaccines – p261, the notion of ‘regression’, how children seem normal up to a point, then ‘regress’, rather than displaying symptoms from birth. Since vaccines are given early on, the link was suspected. Wakefield was soundly discredited, but the two sides continue to debate, each accusing the other side of spreading false information. Example of passionate parent, p264b; author notes 265.7 “except that much of the science he cites has been soundly refuted, and much of the science he disparages appears to have a strong empirical basis”. [[ I.e., it’s easy to see why anti-vaxxers often have strong emotional reasons for their beliefs; they are not dispassionate observers. ]]
- P266 how autistic look at mouths, not eyes.
- Treatments have been largely behavioral, 266.5 – ABA, applied behavior analysis. There are also many quack therapies, e.g. chelation, 269f.
- Public less aware that autistics sometimes have major abilities – certain tests etc. savants. Prime example: Temple Grandin.
- And now there’s the neurodiversity movement, which celebrates some aspects of autism. “Conservatives complain that asking the larger society to accept autistic people’s atypical social logic undermines the very principles that make it a society…” 275.9
- Author discusses terminology – deaf person, or person who’s deaf? Similar for autistic v person with autism. 276m [[ Since autism is not an infectious condition, the former term seems appropriate; you wouldn’t say person with smartness or person with bilingual talent. ]]
- How the internet is a prosthetic device for people who can’t socialize without it, 278.6
- If there were a genetic test to detect autism, would selective abortions lead to a ‘genocide’? 279. [same logic for gayness]
- The irony of expanded research is that as specific traits are identified and treated, they become non-autistic… 279.
- 283, Grandin: “If you got rid of all the autism genetics, you’d get rid of scientists, musicians, mathematicians, and all you’d have left is dried-up bureaucrats… Social people don’t make technology.”
- Retrospective diagnosis suggests Mozart, Einstein, Jefferson, Newton, et al, 284b, would now be diagnosed on the spectrum.
- Chapter ends with examples of how some parents give up and kill their autistic children, or try.
Chapter VIII, Prodigies (pp 405-476)
- A prodigy is a child who who’s able to function at an advanced adult level in some domain before the age of 12; as opposed to genius, an extraordinary adult.
- Typically appear in four areas: athletics, math, chess, and music. Author confines cases here to music.
- Narrative recounts many famous examples: Evgeny Kissin, Leon Fleisher, Drew Petersen, Jay Greenberg, Ken Noda, Lang Lang, Marc Yu, Kit Armstrong, Joshua Bell, Conrad Tao, Nico Muhly, Gabriel Kahane among them. Note how a couple never married, and lived with their mothers. How a couple others are gay. Some speak awkwardly or are misanthropic (but nicer on their blogs). And cases are sometimes linked to dyslexia, autism, etc., 425b.
- IQ tests not necessarily indicators, 413. Communist v fascist perspectives 413.7 about geniuses and society.
- Some parents financially exploit prodigies. Others hold their kids back, in order to be more ‘normal’. Some prodigies seem affected by having suffered the loss of a parent, 445m.
- The 10,000 hour rule isn’t really true; without the core talent, you’re unlikely to succeed. More like 10% v 90%, 450b.
- Classical music is a meritocracy, these days dominated by Asians.
- Public education offers little to support prodigies, and even discourages them, 458t; a product of American anti-elitism, a bias similar to general notions of assimilation, like efforts to make gay kids straight.
- P462.7, How sound recordings have made live performances less special… “Although the causal relationship is more oblique, new science is clouding the future prospects of musical prodigies as surely as it is threatening Deaf and gay cultures and the neurodiversity perspective on the autism spectrum. The arguments about adaptation and extinction are as relevant here as to many so-called disabilities.”
- 472.3, Lucretius defined the sublime as the art of exchanging easier for more difficult pleasures.
- 475.3, Nice paragraph: “In the grand scheme, however, genius is only marginally more astonishing than development itself. Small children go from nonverbal to verbal in two years, and to literate in five more. They can master several languages at the same time. They learn how the shapes of letters relate to both sound and meaning. They grasp the abstract idea of numbers and the means by which numbers characterize everything around us. They ace all this while they are learning to walk, chew, perhaps throws a ball, perhaps develop a sense of humor. Parents of prodigies are intimidated and awestruck at what their children can do—but so, fittingly, are parents of children who are not prodigies. Remembering that is the surest way to remain sane when parenting a child whose skills dramatically differ from or radically exceed one’s own.”
Chapter XII, Father (pp 677-702)
- “I started this book to forgive my parents and ended it by becoming a parent.”
- “For a long time, children used to make me sad. The origin of my sadness was somewhat obscure to me, but I think it came most from how the absence of children in the lives of gay people had repeatedly been held up to me as my tragedy.”
- And he sensed it somehow wrong to create a child who would have a gay father, even if he could, an attitude that changed as other gay people start having children, p678.
- Considers how people with disabilities have children and pass on those disabilities – e.g. Bree Walker; A lesbian deaf couple who find a deaf sperm donor and have two deaf children. William Saleton on ‘deformer babies’. 683. The many judgments about who should or should not have kids.
- P688, the author’s complicated personal story. He met John as he began working on this book; they later married. Author had thought about children in an abstract way. John already had a biological son, via sperm donation to a lesbian coworker and her partner, and their arrangement entailed no legal responsibility for the child, though everyone remained friends and they occasionally saw each other. The couple asked John again, and had a daughter. These children were Oliver and Lucy.
- Meanwhile the author, in 1999, had met an old college friend, Blaine, who’d floated the idea of having a child, and took author’s lighthearted offer to be the father seriously. In 2003 they followed through, making plans for the author to become the legal father of a child with his last name though living in Texas with Blaine, over John’s initial objections. In 2007 author and John got married, and several months after that Blaine’s child by the author was born, in Fort Worth.
- Even after all that, the author wanted to have and raise a child with John. John resists, but gives in: “If it’s a boy, can we call him George, after my grandpa?”
- They go through IVF, get pregnant on the second protocol, and George is born in 2009. There is a panic when a CAT scan is needed, but everything turns out OK.
- Author describes the power of love for a child. How the common view used to be that nurture decided almost everything, and how that view has changed. He reflects on Roger Penrose and the idea of the anthropic principle makes our existence inevitable, that somehow resonates with parenting.
- The various relationships among different parental groups arrange themselves, as they necessarily have to invent their roles, as if sailing uncharted waters. They send out birth announcements and a cousin of John’s cuts off contact: “Your lifestyle is against our Christian values.” P699.
- Author ends on reflective notes, echoing the theme of the entire book. (p700, 702)
One resolves cognitive dissonance by assimilating what it is too late to change, and in that spirit I wonder whether I would have found as much joy in marriage and children if they had come easily—if I had been straight or had grown up thirty years later in a somewhat more welcoming society. Perhaps I would; perhaps all the complex imagining I’ve had to do could have been applied to broader endeavors. I believe, however, that the struggle has given me a vision as a parent that I would not have had without it. So much of me had been consecrated to loneliness, and now I am not lonely anymore. Now, children make me happy. A generation ago, this love would have stayed dormant and unrealized. But so, too, would much of the love described in this book, the love of all these parents for children who would once have died young or been put away or lived unacknowledged as fully human. My family is radical for a different reason from most of the others I have chronicled, but all of us are exponents of revolutionary love against the odds.
Given how unimaginable my family would have been fifty years ago, I have no choice but to champion progress; change has been good to me, and I am indebted to it. I hope these stories will contribute to the cataract that is honing the rough surface of the world. Until the planet grows smooth, however, love will continue to toughen under siege; the very threats to love strengthen it even as they suffuse it with pain.