Far from the Tree: Parents, Children, and the Search for Identity
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‘Laura, stop crying, because that’s not going to help David. It is not going to do anything for us. You have to take all your energy and do something constructive.’
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“The first year is the year of hope,”
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“I would say that your son is probably the most severely affected child I’ve ever seen.”
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They ask you to enter their world. I’d like to get them out of their world.”
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When Laura and Ilene founded the charter school, they assumed that their sons would go there, but the public school system required that students be admitted via lottery, and neither child was chosen.
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David’s twin sister reached the point at which she said, “I don’t want to come home from school; I don’t want to walk into that house; I can’t listen to it anymore.”
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“I make him breakfast and lunch every day,” she said. “And I make him that breakfast with love. I worry about that institutional setting. Nobody’s going to know that he loves his bacon crispy and that he likes his pasta with just a little butter, not a lot.”
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The modifier idiopathic, often used to describe autism, is essentially an indication that it is currently inexplicable.
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flow. One popular principle is mindblindness, an inability to recognize how another person’s thoughts differ from one’s own.
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He is then asked what
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another child will think when shown the closed package. Nonautistic children expect the other child to be duped just as they were. Autistic children expect the child to know the package has a pencil in it.
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fire in autistic subjects only when they themselves are doing something and remain mute when they are observing someone else. This fits with mind blindness.
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“The challenge for autistic individuals is that they are overwhelmed even by their own minds. Typically they notice more details than other people. I know someone who can sketch buildings in architectural detail, from memory—placing not just rooms but elevator shafts, corridors, stairwells—after walking around them only once.”
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“With this combination of high input and low output, inevitably a sort of logjam occurs. Consequently, autistic individuals try to focus on simple tasks that don’t involve other people.”
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I was struck by the Lehrs’ early decision to help Ben but not to “fix” him. “His sister said to me, ‘Do you ever wonder what it would be like if Ben were normal?’” Sue said. “And I said, ‘Well, I think he’s normal for himself.’ Have I wished that he didn’t have all of his behavior problems? Absolutely. Have I wished that he had better language? Absolutely.”
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About treating someone as a human being even when his thoughts and feelings are mixed up. How do we make you feel safe, loved, okay? I learned the way it works by having Ben. And so I had it ready when Bob needed it.”
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Autism is associated with underconnectivity between hemispheres and an overabundance of local connections; the neuronal pruning that helps the average brain avoid overload does not appear to occur in autism.
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The human brain consists of grey matter, where thought is generated, and white matter, which conveys that thought from one area to another.
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In autism, neurological losses have been observed also in the cerebellum, the cerebral cortex, and the limbic system. Autism genes may alter brain levels of neurotransmitters at crucial stages of development.
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It is not yet clear whether autism-related genes always or sometimes require environmental triggers to become active, nor, if so, what the triggers may be.
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assortative mating, suggesting that people with particular personality types find one another more readily in our mobile,
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If we knew what goes on in the brain during autism, it would help establish which genes are implicated. If we knew which genes were implicated, we might be able to figure out what is happening in the brain.
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In autism, some people with a shared genotype don’t share a phenotype, and some with a shared phenotype don’t share a
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genotype.
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Most genes associated with autism are pleiotropic, which means that they have multiple effects. Some of these effects are linked with conditions that often co-occur with autism, such as ADHD, epilepsy, and gastrointestinal disorders.
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Medicine has been too eager in many cases to
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dismiss parents’ insight.
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Many scientists have argued that regressive autism is not regressive at all—that children with a particular genotype simply begin to show symptoms at a stage in their development;
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that regression is caused by a specific environmental trigger.
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Because regression often occurs at around the same age that children are immunized, many parents have attributed their children’s autism to vaccines, particularly the measles-mumps-rubella
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vaccines containing the mercury-based preserva...
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Andrew Wakefield of the Royal Free Hospital published a paper in the Lancet positing an association between the MMR vaccine and gastrointestinal problems in autistic children.
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journalists seized upon the story, and many parents stopped vaccinating their children.
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Typically, parents of children who regress witness their child’s loss of language at about sixteen months.
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It was difficult to believe that he was the same child.
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Some researchers have questioned whether such regression results from loss of function, or whether apparent early sociability in infancy may rely on different brain regions than more mature sociability.
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National Vaccine Injury Compensation Program is currently in the process of dismissing over five thousand claims alleging that vaccines are responsible for making children autistic.
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through treatments that addressed the vaccine injury; she has urged her parents and the scientists they support to abandon “failed strategies” and embrace her perspective.
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Hannah Poling case that a chicken-pox vaccine had probably aggravated an underlying mitochondrial disorder to create autistic-type symptoms in one child.
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Epidemiological studies have demonstrated no correlation between vaccination and autism.
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white count of thirty-one thousand. He was in the hospital and they said it was sepsis. After he came out, he was less socially engaged. A lot less socially engaged. It was like I went into the hospital with one kid and I came out with another.”
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show that genetics determined only 38 percent of the cases they studied, while shared environmental factors appeared to be primarily responsible in 58 percent of cases.
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Their second, Michaela, seemed to develop normally for her first year, but before she turned two, Elise began to think something was wrong.
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Mark talked about a study he coauthored that showed reduced mercury levels in the first haircuts of autistic children, which he took as evidence that they are not able to excrete mercury as efficiently as other babies.
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medical care is a personal responsibility,
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Early intervention requires early detection.
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the typically developing infants focus on eyes, while the ones at risk for autism focus on objects or mouths.
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Desirable acts receive positive reinforcement: if the child speaks, for example, he may get what he wants. Negative acts do not receive reinforcement: temper tantrums are never rewarded.
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And if he grebed at you, that was his sign; you were in.”
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Bruce