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December 10, 2019 - January 21, 2020
Beck writes of the transformations her son has wrought in her own life. “The immediacy and joy with which he lives his life make rapacious achievement, Harvard-style, look a lot like quiet desperation. Adam has slowed me down to the point where I notice what is in front of me, its mystery and beauty, instead of thrashing my way through a maze of difficult requirements toward labels and achievements that contain no joy in themselves.”
Karen shook her head. “I’m with Tom. If I could cure David, I would, for David. But I think that we’ve grown so much as a result of having to deal with this. We’ve had so much purpose. I’d never have believed twenty-three years ago when he was born that I could come to such a point, but I have. For David, I’d cure it in an instant; but for us, I wouldn’t exchange these experiences for anything. They’ve made us who we are, and who we are is so much better than who we would have been otherwise.”
“Having advocated and fought for these kids now for nineteen years,” she said, “my entire personality has changed. I’m quick to pick a fight; I’m argumentative. You don’t cross me. I have to do what I have to do, and I’m going to get what I want. I never was like this at all.”
“It is hard to be autistic because no one understands me. People assume I am dumb because I can’t talk or I act differently. I think people get scared with things that look or seem different than them.”
Bob described going to conferences and being surrounded by parents desperate for a cure—“It’s going to be all better next year, crap like that. We were avant-garde in saying, ‘No. It’s going to be better right now. Let’s make it as good as possible for him.’”
“A smart mother often makes a better diagnosis than a poor doctor.” The closeness with which a parent observes can be as powerful as the expertise with which a physician observes, and setting them up in opposition to each other is a disaster for everyone.
Icilda Brown seemed more at peace with her son’s condition than almost any other mother I met. A lifetime of nonchoices had given her a gift for acceptance.
The story of middle-class and affluent parenting of autistic children is an interminable saga of tilting at windmills;
in contrast, I admired both Icilda’s acquiescence and the happiness that was its corollary.
A good measure of a society is how well it takes care of its sick people. Our society is an outrage.”
“Our struggle was not to let ourselves experience our child’s condition as a narcissistic injury.” In other words, the autism is something that has happened to the child rather than to the parents.
It’s a point in favor of respecting and recognizing the legitimacy of human neurological diversity. But it would be a deep mistake to say that people should have their differences respected only if they can deliver some special talent.”
“The Internet,” Singer said, “is a prosthetic device for people who can’t socialize without it.” For anyone challenged by language and social rules, a communication system that does not operate in real time is a godsend.
“When people pity me for my daughter, I don’t understand the sentiment,” Roy Richard Grinker wrote. “Autism is less a disease to be hidden than a disability to be accommodated; it is less a stigma, reflecting badly on her family, than a variation of human existence.”
Looking at this jewel through different facets does not trivialize the challenges of people who have tremendous obstacles. I’m trying to look at the whole picture, including the beautiful part of it.
Temple Grandin once described herself as “an anthropologist on Mars,” a description that the neurologist Oliver Sacks appropriated as the title for one of his books. But Chris was like a Martian in a roomful of anthropologists. “In case he feels everything,” Bill said, “I talk to him about it all and I love him totally and completely. Just in case.” Is it neurotypical prejudice to posit that human nature entails an aspirational longing to be loved, applauded, accepted?
It is important not to get carried away by either the impulse only to treat or the impulse only to accept.
some studies suggest that if you were able to eliminate cannabis, you could reduce world rates of schizophrenia by at least ten percent.”
Parents would do well to know that to most schizophrenics, a penumbra of affection is reassuring, even if it does not seem to penetrate their isolation.
Any way that people can be knitted into the social fabric is precious.
the United States, 150,000 people with schizophrenia are homeless; one in five people with schizophrenia is homeless in any given year. Such people are soon off their meds and back at the hospital for acute care. This serves neither their medical advantage nor the state’s economic interest.
Senegal, when someone is taken on as an inpatient at a mental hospital, a member of his family usually accompanies him there and stays for as long as he does. Such habits reassure psychotic people that they are permanently knitted into the social fabric. In the West, conversely, families often disenfranchise schizophrenics.
one weighs the savings to the mental health system against the added burdens to the penal system, the penny-wise, pound-foolish nature of such budgeting becomes ludicrously obvious.
While accommodating people with physical disabilities must be undertaken out of moral conviction, adequately treating people with severe psychiatric illness is a win-win situation; if moral conviction fails, economic self-interest should prevail.
How not cry out against any and all attempts, when it comes to human beings with lives like Robert’s, to reduce their humanity to their biology?”
“Mental illness cannot be treated separately from the person; they are inextricably linked. I’ve answered the question ‘Where does mental illness end and where do I begin?’ In my case, we are one. I’ve made friends with the enemy. My treatment is successful precisely because it takes both me and my disorder into account and doesn’t delineate between the two of us.”
There are many practical advantages to classifying people, but clinical experience shows that isn’t how the mind works. You have to deal with many layers of continuous phenomena.”
The tension often has less to do with the severity of the child’s disabilities than with the parents’ coping skills, the dynamics among healthy members of the family, and the importance the parents place on how people outside the family perceive them.
“There is probably no mammal in which maternal commitment does not emerge piecemeal and chronically sensitive to external cues,” writes the evolutionary biologist Sarah Hrdy. “Nurturing has to be teased out, reinforced, maintained. Nurturing itself needs to be nurtured.”
An extreme but stable stress is easier to handle than a less extreme but erratic one.
“Language is as vital to the physician’s art as the stethoscope or the scalpel. Of all the words the doctor uses, the name he gives the illness has the greatest weight. The name of the illness becomes part of the identity of the sufferer.” The sadness of a poor prognosis is vastly easier than the chaos of no prognosis. Once the course is clear, most people can accept it. Since knowledge is power, syndromes associated with dire prospects are borne more nobly than those of which little can be understood. Identity is a function of certitude.
Empathy and compassion work best in concert with the belief that you are still capable of shaping a meaningful life for yourself and your family. The technical term for this is internal locus of control, wherein one determines one’s own trajectory, rather than external locus of control, wherein one feels entirely subject to outside circumstances and events.
The most important thing, often, is a belief in something bigger than one’s own experience. The most common source of coherence is religion, but it has many other mechanisms. You can believe in God, in the human capacity for good, in justice, or simply in love.
The interests of the nondisabled sibling are now more often held to require keeping the disabled sibling at home. This may be better for the disabled child as well, but it’s striking how the conversation continues to prioritize the interest of the nondisabled
sibling over that of the disabled one.
It is not true that “love is not love which alters when it alteration finds.” Love alters all the time; it is fluid, in perpetual flux, an evolving business across a lifetime. We commit to love our children without knowing them, and knowing them changes how we love them, if not that we love them.
Many human service professionals assume that, because they care for people, their actions are inevitably competent. As soon as you challenge the competence of their actions, you’re seen as questioning their caring for the person.”
“Genius is an abnormality, and abnormalities do not come one at a time. Many gifted kids have ADD or OCD or Asperger’s.
Musical performance is a sustained exercise in sensitivity, and sensitivity is the tinder of fragility.
But the sanctification of ten thousand hours as the basis for achievement has a Horatio Alger–like sentimentality to it.
earned pleasures supersede passive ones.
A meta-analysis that collated two hundred studies found that while the best rehabilitative programs—behavioral therapy, teaching family programs—achieved a 30 to 40 percent reduction in recidivism even for serious offenders, punitive therapies had null or negative effects. The National Institutes of Health advised, “Scare tactics don’t work and may make the problem worse.”
Retribution is a way of indulging the victims; they feel powerless, and seeing their adversaries jailed or executed sometimes makes them feel enfranchised. That has a limited merit; interviews with people who have fought to have others put to death reveal that execution did not afford them the satisfaction they had anticipated.
“The parental attachment factor explains delinquency better than any other factor.”
Aside from the common prejudice that therapeutic interventions are excessively soft on the criminal, the justification for withholding such treatments is often that they are ineffective and exorbitantly expensive. Neither justification has merit. The cost of jailing a minor ranges from about $20,000 to $65,000 per year. Prisons with more programs experience less violence, which reduces some expenses, but the major financial benefit lies in curtailed recidivism. A crime gives rise to enormous knock-on costs, including loss of property, trial expenses, health-care costs from injury, and
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“My gender is who I am; my sexuality is who I bounce it off of.” This
gender identity should not obscure underlying problems, and such problems should not interfere with addressing gender identity.
The law of identity is among the first precepts of philosophy; it states that everything is the same as itself.
Undermining anyone’s personal tautology by suggesting that he should not, in fact, be himself sabotages whatever he might become.
People whose lives have been bound by strong gender conventions, however, often believe that hewing to social norms will protect their children from abuse in the world. That very notion can constitute abuse inside the family.
