Understanding Autism, by Chloe Silverman, talks about the role parent’s play in shaping autistic individuals. It also debunks commonly held theories about Autism, such as Andrew Wakefield’s MMR vaccine research.
“A growing number of adults with autism have joined a self-advocacy movement modeled on gay rights and Deaf advocacy, arguing for the validity of autistic experience and autistic culture” (Silverman 7).
“As Evelyn Fox Keller has argued, the definition of autism as a pathology rather than a normal difference rests on the conviction that the ability to relate to other people is not only developmentally necessary but morally necessary as well” (Silverman 7).
Ch. 1: Research Programs
“Disorders are useful ways for doctors to think about medical categories, but just what symptoms–or type of person–a disorder refers to may change a great deal over time, whether through a bureaucratic fiat of through the activism of groups who adopt or reject a medical definition” (Silverman 29).
“Autism is also a very modern disorder, with all of the implications of that term” (Silverman 30).
“The possibility that the rising reported incidence of autism represents an epidemic has been the subject of fervent editorials, irate hallway confrontations at otherwise sedate conferences, and several full-length books” (Silverman 31).
“By framing autism as a behavioral syndrome, researchers have elaborated on the nature of many of the deficits but few of the underlying causes” (Silverman 31).
“It is hard to fault Kanner’s descriptions, which were models of careful observation, but the category and the range of interpretations that ‘autism’ could encompass quickly slipped beyond his control” (Silverman 32).
“When psychologists studied parents to identify the sources of psychogenic influences, they instead found that the parents of autistic children were not particularly different from the parents of other children with developmental problems” (Silverman 41).
“Specialists insisted that they did not ‘blame’ parents for pathogenic attitudes toward their children” (Silverman 41).
“He [Rimland] observed that psychotherapy rarely helped children with autistic symptoms and he reinterpreted psychoanalysts’ observations about the parents of autistic children” (Silverman 42).
“Early estimates of autism prevalence put the figure at approximately 4 children with autism in 10,000, and possibly lower” (Silverman 47).
“Asperger believed that he had described a distinct syndrome, while Wing thought that Asperger syndrome represented the high-functioning end of the autism spectrum” (Silverman 50).
“The DSM-III criteria for autism were fairly stringent. They were oriented toward identifying severe cases in young children” (Silverman 51).
“In contrast to the more reserved statements of epidemiologists and psychological professionals, parents have become forceful advocates of the idea that increases in autism rates represent an epidemic” (Silverman 53).
“Parents connect their arguments about an increase to claims about causation, but the diagnostic category itself says nothing about the cause of autism” (Silverman 53).
“Despite the precision with which researchers can characterize cognitive and developmental abnormalities, very few techniques exist for measuring the outcome of treatments for autism because autism is understood to be a relatively static and lifelong disorder, with symptoms that are stable over time” (Silverman 57).
“Theories that explain autism in terms of poor executive function, weak central coherence, po problems with attention all describe the syndrome in terms of properties that are more basic to cognitive function than complex activities like communication, behavior, and sociability” (Silverman 59).
“Researchers, however, have only recently begun to connect these processing dysfunctions to actual changes in brain structure, changes that may be distributed rather than localized” (Silverman 59).
Ch. 3: Expert Amateurs
“During the 1950s, parents of children diagnosed with mental retardation had successfully lobbied for special education classrooms and other forms of support in their efforts to keep their children at home and out of institutions, often against the recommendations of psychologists” (Silverman 94).
“Lettick said that she and other parents were compelled to become ‘para-professionals.’ This idea lies at the center of the practice of what is now called applied behavior analysis (ABA) and related behavioral therapies derived from operant conditioning, as well as other developmental education programs” (Silverman 95).
“For many parents of children given diagnoses of autism or ‘autistic tendencies’ during the 1960s and 1970s, ‘brain damage’ might have seemed the most adequate description of the difficulties that their children experienced, including developmental regressions and unusual combinations of strengths and deficits in cognitive abilities” (Silverman 103).
“Although applied behavior analysis was becoming established as a method for addressing problem behaviors in educational settings, it met with significant opprobrium from within the educational and medical communities devoted to autism. Bruno Bettleheim described operant conditioning disparagingly as ‘a method where small (or even severe) punishments, and rewards, are used to induce the subject to do what the experimenter wants him to do, and this without any consideration of why the subject chose to do what he did, or not to do what he does not do’” (Silverman 108).
“ABA used ‘discrete trial training,’ which required a child to perform a simple task in return for positive reinforcement in the form of applause, food, or a favorite toy” (Silverman 109).
“ABA primarily focused on language, drawing on B.F Skinner’s idea of language as a ‘stimulus function’” (Silverman 109).
“Daily life with a child with autism does not often assume a stable pattern. It is more frequently a matter of finding tentative workable arrangements in the context of chronic difficulties. Problem behaviors are brought under control with one approach just as new ones emerge, demanding alternative strategies” (Silverman 122).
“Promoters of behavioral therapies have framed them as a means of transitioning children into educational settings, but that fact does not negate the intensity of demands on parents for the duration of their use” (Silverman 123).
“An increasingly standardized diagnosis and growing empirical support for treatment gave parents better guidance in their decisions about a child” (Silverman 124).
Ch. 4: Brains, Pedigrees, and Promises
“For parents to raise millions to fund genetic research, and donate blood and tissue samples from themselves and their children to fuel that research, autism first had to become a genetic disorder” (Silverman 142).
“Organizational spokespersons, self-advocates, and relatives of people with autism work in a landscape shaped by the history of autism genetics” (Silverman 142).
“Parent groups and researchers reframed autism as a neurological and genetic condition during the 1960s as an alternative to psychogenic theories of autism” (Silverman 143).
“The change reflects an increasing focus on psychiatric genetics in general and a deepening conviction that autism treatment is necessary, that it will involve the use of pharmaceuticals, and that developing these techniques depends on locating autism genes” (Silverman 144).
“During the 1980s, geneticists began conducting twin studies using broadened concepts of an ‘autism spectrum’, including participants who tested within the typical range for IQ” (Silverman 147).
“Studies of the brain in autism consistently failed to locate any specific impaired structures, even on a microscopic level” (Silverman 153).
“Nevertheless, researchers still imagined that impairments in autism would eventually correlate to damaged brain structures” (Silverman 153).
“Although autism researchers have tended to present brains as the site of pathology, they have not presented them as likely points of direct intervention, and that may also have made the stakes in brain-based research seem less high” (Silverman 155).
“Opponents of treatment see pervasive brain differences as evidence of fundamental differences in autistic brains that should be treated as a form of ‘neurodiversity’ ” (Silverman 155).
“Meanwhile, genetics researchers adapted their language to reflect the unpromising results of the multiple genome scans that they had conducted on the newly abundant genetic material. They recognized that the time had come to ‘give up’ on finding a single gene for autism” (Silverman 159).
“Autism self-advocacy as a visible social force emerged as a result of at least three factors. A resurgence of professional interest in the Asperger syndrome diagnosis and the broader autism spectrum in the 1990s led more adults and people with ‘higher functioning’ forms of autism to be diagnosed” (Silverman 161).
“In 2005, when the Autism Society of America, which called itself ‘The Voice of Autism,’ launched a new campaign for early diagnosis and treatment, complete with a Web site, ‘Getting the Word Out,’ self-advocates with autism responded indignantly” (Silverman 161).
“Both parent organizations and self-advocates are eminently pragmatic in their efforts to promote their interests. Their allegiances, in the end, are to specific goals of representation, accommodation, or treatment, not to broadly conceived research programs in generics or psychology” (Silverman 164).
“The idea of autism genetics has been used to claim that the disorder is an untreatable constant in human populations that ought to be accepted and not treated” (Silverman 165).
Ch. 5: Desperate and Rational
“The Food and Drug Administration has currently approved only one medication as a treatment for autism…the medication is not considered to treat the ‘core’ behavioral symptoms of autism, but rather the ‘irritability’ associated with the condition in children” (Silverman 169).
“To speak of treating autism, let alone curing the disorder, is to invite accusations of desperation on the part of parents and charlatanism on the parts of practitioners” (Silverman 169).
“Experimenting with alternative treatments made it difficult to ascertain the benefits of more established forms of behavioral therapy” (Silverman 169).
“Parents talk about desperation too, but they portray themselves as emphatically reasonable, at once skeptical and willing to experiment” (Silverman 170).
“Practitioners who offer the treatment are opportunists and parents who focus on their children’s medical symptoms harm the cause of autism acceptance by using ‘metaphors of toxicity and disease’ to describe their child” (Silverman 171).
“Most parents who seek biomedical treatments for autism learn about the techniques from the Autism Research Institute’s publications and Defeat Autism Now! (or DAN!) conferences” (Silverman 171).
“While the rationales for biomedical interventions are often as complex as those for conventional treatments, the modes of interaction between practitioners and parents is decidedly different” (Silverman 186).
“In 1998, Andrew Wakefield, a gastroenterologist at the Royal Free Hospital in London, published a paper with colleagues describing a novel intestinal pathology in children with autism and developmental regression” (Silverman 189).
Ch. 6: Pandora’s Box
“Parents and public health officials routinely talk about the relative risks associated with vaccines in children. One side in the debate connects the risk of developing autism with vaccines. The other side stresses the higher risk associated with the diseases that vaccines are designed to prevent and the risk to the public health and confidence in immunization programs that could result from sustained public discussions about autism and vaccines” (Silverman 197).
“Like many debates over the appropriate use of technologies, arguments about vaccination have never been about the technique alone. They have also reflected anxieties about entrusting the health of one’s family to authorities” (Silverman 200).
“Public health officials worry that parental concerns about immunizations are a type of mass hysteria, where yellow journalism and opportunistic medical professionals fuel the fears of vulnerable and impressionable parents” (Silverman 202).
“The idea that the MMR vaccine might be associated with autism emerged prior to concerns about mercury as a preservative” (Silverman 203).
Conclusion: What the World Needs Now
“Many researchers now agree with parents that although autism is a useful term for describing a common behavioral syndrome, it is one that offers few insights into the particular biology of individual children” (Silverman 229).
“Parents can accept the value and importance of their child’s obsessions and the beauty of their different ways of experiencing the world around them, even as they work to free them from restrictions that their impairments impose on them” (Silverman 235-236).
Silverman, Chloe. Understanding Autism: Parents, Doctors, and the History of a Disorder. Princeton UP, 2013.