ARTICLE Understanding Parents and Pediatricians in Historical Perspective

Chloe Silverman, PhD; Jeffrey P. Brosco, MD, PhD

oth primary care providers and subspecialists in pediatrics encounter families who are actively involved in the diagnosis and treatment of their children. Parents of children with an disorder in particular are often aware of scientific issues, and their expertise and desire for a medical cure for autism sometimes put them at odds Bwith the medical team. We investigated the role of parents and advocates in autism research and treatment over the last 50 years. Our review of scientific publications and archival sources docu- ments how parents and advocacy groups have done the following: (1) organized research funding; (2) constructed clinical research networks; (3) suggested new avenues for research; (4) popular- ized empirically based therapies; and (5) anticipated paradigmatic shifts in the understanding of autism. We believe that this historical account will help pediatricians and researchers recognize that families can contribute to expert understanding of complex medical conditions such as au- tism and that the existence of partnerships with families of children with autism is a critical com- ponent of future research and treatment programs. Arch Pediatr Adolesc Med. 2007;161:392-398

Clay’s parents brought their 4-year old son rate analyses on the subset of children with to the developmental assessment team with gastrointestinal symptoms? Did the stud- hopes of helping their child with autism; ies have enough statistical power to rule they left disappointed and divided. Clay out the possibility of benefit from secre- had received a variety of medical treat- tin, and what outcome measures were ments, including hyperbaric oxygen, oral used? Although she had no formal medi- fluconazole, and chelation, prior to the cal or scientific training, Clay’s mother team’s evaluation. He was also on a diet lodged several other criticisms of the stud- that eliminated gluten- and casein- ies and became increasingly frustrated that containing foods and was receiving a va- the team did not seem to want to help her riety of nutritional supplements, includ- son. For their part, the team felt that their inghighdosesofvitaminB6 andmagnesium. professional competence was being chal- Clay’s mother believed that he had im- lenged, and several team members wor- proved at least temporarily with each of ried that in pursuit of alternative treat- these interventions; his father was more ments, Clay’s family was failing to focus skeptical. Both parents hoped that the on educational interventions that could im- medical team would recommend treat- prove Clay’s social and academic func- ment with secretin. When the develop- tioning. After a 2-day team evaluation and mental assessment team described the re- a 90-minute family conference, no one was sults of recent randomized controlled trials happy. Clay’s mother found no support for demonstrating no benefit from secretin her quest to help her son, Clay’s father had compared with placebo, Clay’s mother renewed doubts about the wisdom of ex- pressed the team. Did the authors run sepa- pensive and intrusive treatments, and the Author Affiliations: Department of Science, Technology, and Society, Penn State team wondered why their expertise and University, University Park, Pa (Dr Silverman); and Department of Pediatrics, hard work brought only frustration to ev- Miller School of Medicine, University of Miami, Miami, Fla (Dr Brosco). eryone involved.

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©2007 American Medical Association. All rights reserved. Downloaded From: https://jamanetwork.com/ on 09/27/2021 This case scenario is a composite drawn from the ex- that families have played in advancing both the clinical periences of a university clinical service, but such con- and scientific understanding of autism as well as treat- flict is not unique to developmental assessment teams. ment options. Throughout the history of autism in the Both primary care providers and subspecialists in pedi- United States, parental observations and priorities have atrics frequently encounter families who are well in- come into periodic conflict with professional opinions, formed and actively involved in the diagnosis and treat- whether those opinions concerned the adequacy of par- ment of their children. In general, pediatricians have led ents’ childrearing abilities or their belief that there is an the medical profession in learning to respect patient and epidemic of new cases of autism. Perhaps because of this family autonomy; indeed, family-centered pediatric prac- conflict, parents have often been at the vanguard of criti- tice is endorsed explicitly by the American Academy of cal changes in expert understanding of autism. Pediatrics.1 Nearly all pediatricians have sometimes felt angry or bewildered, however, by families and patients LEARNING FROM PARENTS who challenge their authority as the professional medi- cal provider. Clay’s case stands out because of the de- From the first description of autism, parents have been gree to which Clay’s parents had mastered the scientific essential to advancing research. In his case reports, for process and how their expertise and desire for a medical example, Kanner credited the meticulous notes pro- cure for autism put them at odds with the medical team. vided by parents as the primary source for his research. Such conflicts arise in many areas of medicine, espe- Foreshadowing decades of conflict to come, however, his cially in the case of childhood disorders, but autism is a acknowledgment also contained an accusation: “[t]he ob- particularly salient example because of the condition’s sessiveness of the parents of the autistic children was a past history and current notoriety. Autism has become veritable boon to me with regard to the case histories. one of the most difficult and controversial child health Few children have ever been observed by their parents issues because of the remarkable increase in observed with such minute precision.”17 In public settings, Kan- prevalence, controversies over etiology, and the search ner went on to describe the parents of children with au- for specific medical interventions. Although there is evi- tism as “just happening to defrost long enough to pro- dence for the effectiveness of a variety of behavioral and duce a child.”18 Building on Kanner’s observations, educational interventions, alternative therapies for au- Bettelheim and his colleagues believed that providing psy- tism spectrum disorders are particularly diverse and widely chotherapy for parents as well as their children was a logi- applied as families seek medical treatments for an oth- cal step in treating autism.19 Parents suffered as a result. erwise chronic condition.2,3 Pediatricians, meanwhile, are In a 1967 memoir read by generations of parents, Clara faced with the problem of continuing to provide under- Claiborne Park20 observed that the “depersonalization” standing support for families who may want to investi- of the clinical setting might easily have caused other- gate treatments that are unfamiliar or insufficiently sup- wise warm and engaged parents to appear aloof. She won- ported by evidence and controlled trials.4 dered whether “refrigerator professionals create refrig- Classic autism was first described in the medical litera- erator parents.”20 ture by Leo Kanner5 in 1943, and through the 1950s the Some parents responded by challenging conven- condition remained in the domain of psychiatry. Bruno tional medical wisdom. Rimland,7 for example, pub- Bettelheim6 and many of his colleagues in psychology in- lished in 1964 one of the first surveys of evidence that terpreted autistic behavior in classic Freudian terms as a autism is a neurological disorder with a genetic compo- syndrome of ego damage resulting from unconscious pa- nent. Like many parents, the Rimlands had diagnosed their rental rejection. By the 1960s, medical professionals be- child themselves at a time when professionals were of- gan to seriously consider nonpsychological frameworks for ten unfamiliar with the disorder. Perhaps because of Rim- understanding autism, and in 1964, Bernard Rimland7 de- land’s training as an experimental psychologist, neither scribed infantile autism as a neurological disorder with a he nor his wife had much patience with the psycho- strong genetic component. The first study showing a high genic theory of autism. Rimland argued that the atypi- degree of concordance in a series of monozygotic twins was cal social tendencies and intellectualism of the parents published in 1977,8 and by the mid 1990s, most research- of children with autism might be evidence of mild au- ers agreed that autism was a highly heritable genetic neu- tistic tendencies in parents—what researchers now re- rological disorder. The recent apparent rise in the number fer to as the broader autism phenotype.21 Other parents of cases of autism suggests an environmental component helped educational professionals understand autism as of the etiology to many parents,9 although epidemiolo- a developmental disorder. For example, autism was cat- gists10 and psychologists11 have generally viewed these shifts egorized by the US Office of Special Education under the as a result of improved ascertainment and as a conse- term severely emotionally disturbed through the 1970s. In quence of greater physician and public awareness. They also changing the terminology in 1980, government officials observe that growing prevalence12-14 reflects an increas- credited “voluminous” evidence provided by parent ingly broad definition of autistic disorder over the last 20 groups on the devastating effects of categorizing autism years as well as the inclusion of (1994)15 as an emotional disorder.22 and pervasive developmental disorder not otherwise speci- In 1974, the editors of the Journal of Autism and Child- fied (1987)16 in the current concept of autism as a spec- hood Schizophrenia (later renamed the Journal of Autism trum of disorders. and Developmental Disorders) also recognized the value Although many medical professionals are aware of this of families’ perspectives in a section called “Parents Speak.” basic history of autism, few know about the critical role The articles are a telling record of parents’ genuine in-

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©2007 American Medical Association. All rights reserved. Downloaded From: https://jamanetwork.com/ on 09/27/2021 terest in research findings and provide examples of how Combating Autism Act, which authorizes significant parents anticipated scholars. Three early articles in the amounts of future appropriations, was signed into law series, for example, commented on topics that have re- after energetic lobbying by parent groups. cently caught the attention of medical scholars: autism Although it is difficult to say just how important the in adolescence,23 possible biological factors in autism,24 role of parent advocacy has been in securing this fund- and parental stress and resilience.25 ing, parent groups have clearly been a guiding force in Parental observations about the onset and natural his- autism research. Grants for pilot studies from the Na- tory of autism have also been vindicated by recently pub- tional Alliance for Autism Research, for example, re- lished studies. At least since the 1970s, a subset of par- sulted in multimillion-dollar National Institutes of Health ents has described how their children had a period of grants for a number of researchers.34 More importantly, normal development before the onset of autism.26-28 In both CAN and the National Alliance for Autism Re- this regressive form of autism, parents reported that their search maintain grant review policies that distinguish them children acquired words, maintained eye contact, and as parent organizations focused on treatment and cure demonstrated joint attention only to lose these skills at in addition to basic research. Parents are guaranteed a some point in the second year of life. Only recently have say in the review process: CAN maintains a scientific re- researchers begun to focus on children with autism who view committee comprising scientific degree–holding par- regress.29 Indeed, a 2005 analysis of birthday videotapes ents of children with autism; this review committee ranks confirmed parental claims, finding that some children did projects after an initial review by a scientific advisory lose social and communication abilities between their first group (written communication, Alycia Halladay, PhD, De- and second birthdays.30 cember 27, 2005). The National Alliance for Autism Re- Parents also helped move research on the genetics of search maintains a similar 2-tiered system (written com- autism forward in the 1990s. The founders of the Cure munication, Therese Finazzo, January 6, 2006). The Autism Now Foundation (CAN), Jon Shestack and Por- critical roles of these organizations in autism research— tia Iverson, understood that if autism were a complex and setting goals as well as distributing funds—seem only etiologically heterogeneous genetic disorder, a large likely to grow. In 2005 following the diagnosis of their sample of genetic material was necessary to understand grandson, General Electric and NBC Universal execu- the disorder. Because researchers did not seem to be shar- tive Bob Wright and his wife Suzanne founded Autism ing genetic samples, these parents contacted families and Speaks with starting funds of $30 million. The Cure Au- enrolled them in a new gene bank organized through tism Now Foundation and the National Alliance for Au- CAN, the Autism Genetic Resource Exchange.31 To pre- tism Research have both merged their operations with vent needless reproduction of results, CAN made the pub- this larger organization. Meanwhile, the foundation of lication and sharing of data conditions of use. The Cure the “hedge fund titan” James Simons, who has an af- Autism Now Foundation was able to amass data and fected daughter, has begun to focus on targeted funding samples from more than 400 families at an initial cost of for genetics research.35 more than $6 million in private donations.32 Fewer than 10 years later, the Autism Genetic Resource Exchange PARENTS AS PROPONENTS has become part of a larger consortium called the Au- OF INTERVENTIONS tism Genome Project that itself was initially sponsored by the National Alliance for Autism Research. Samples Parents have often promoted research in the course of from the Autism Genome Project are maintained at a re- investigating promising interventions for their own pository sponsored by the National Institute of Mental children. Although some popular treatments may Health, and all qualified investigators are granted equal appear to be the result of a frantic search for solutions access. by desperate parents, it is important to remember that More generally, parent groups have pushed for treatment-oriented approaches have also yielded reli- increases in federal funding for autism research. In able knowledge about autism. For example, the 1997, the National Institute of Child Health and National Society for Autistic Children (later the Human Development began a 5-year, $45 million pro- Autism Society of America) was founded by Rimland gram to establish an international network on the neu- and other parents in part to promote a then-new treat- robiology and genetics of autism, the Collaborative Pro- ment possibility, applied behavior analysis, or the grams of Excellence in Autism. When the program was Lovaas technique. Although Ivar Lovaas36 and his col- renewed in 2002, the member institutes committed leagues began their work in the late 1960s, the wide- another $60 million over 5 years.33 Parents also lobbied spread adoption of their techniques came in part for Congress to pass the Children’s Health Act of 2000, because of the activism of parents who sought to which resulted in funding from the National Institutes obtain the best treatments for their children, often in of Health for individual researcher grants, the National opposition to those who argued that their children Institutes of Health–funded Studies to Advance Autism were untreatable. Rimland, for example, promoted Research and Treatment Centers Program, and provi- applied behavior analysis in talks to parents around sions for epidemiological studies through the Centers the country based on his observation of sessions at the for Disease Control and Prevention. The National Insti- University of California, Los Angeles.37 By 1987, tutes of Health recently announced a new program of Lovaas published the results of a controlled trial that, Autism Centers of Excellence involving up to $24 mil- despite criticisms of his methods, remains one of the lion in annual funding, and in December 2006, the primary references for the efficacy of behavioral thera-

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Downloaded From: https://jamanetwork.com/ on 09/27/2021 pies.38 Variations on these interventions remain the consider the possibility of connections between physi- most widely used treatments for autism, although no ological and behavioral symptoms.49 direct comparisons of the efficacy of these methods are In addition to voicing questions about the relative im- available.39,40 Significantly, the authors of almost all of portance of autistic symptoms and what are seen as co- the existing behavioral programs for children with morbid conditions, parents of children with autism have autism have emphasized the centrality of parental par- long argued that there are clinically distinct subsets of ticipation, even when they disagreed with the discrete children within the category of classic autistic disorder. trial methods of Lovaas.41 Indeed, it was parents’ insistence that their children had While some parent-run autism organizations have a variety of physical symptoms that led Andrew focused on genetics research and behavioral therapy, Wakefield,50 a gastroenterologist then at the Royal Free the Autism Research Institute and its Defeat Autism Hospital in London, England, to investigate a group of Now! (DAN!) conferences have pursued medical treat- children with significant intestinal pathological abnor- ment. The Autism Research Institute was also founded malities in addition to . Wake- by Rimland, who was initially interested in the use of field’s contention that children with regressive autism and high-dose vitamin B6 and magnesium as a treatment bowel symptoms reflected a “unique disease process” for autism; Defeat Autism Now! conferences are built linked to the measles-mumps-rubella vaccine drew enor- around the premise that each child with autism will mous attention from parents and the media.50 Wake- respond to an individualized regimen of nutritional field’s work has been criticized for its study design, lead- supplementation, elimination diets, and detoxification 42 ing to the highly unusual “retraction of an interpretation” therapies including chelation. These complementary by nearly all of his coauthors.51 An expert panel of the and alternative treatments often concern medical pro- Institute of Medicine recently confirmed that there is no fessionals because there are few if any controlled stud- 43 link between the measles-mumps-rubella vaccine and au- ies of safety and efficacy. Proponents of alternative tism.52 However, Wakefield’s description of a subset of medicine respond that most studies are complicated children with a history of regression and a higher inci- by the variety of symptoms and severity in children dence of gastrointestinal symptoms has found some sup- with autism and by the possibility that improvement port in recent research,53 and a recent poster presenta- in some children is obscured by a lack of efficacy in tion54 by one group of researchers maintained that an others. Theodore Page44 has provided some theoretical association between the measles virus and bowel dis- support for this explanation in his review of the meta- ease exists in some children with autism. bolic aspects of autism; he concludes that it is likely Parents have also expressed concerns about a rela- that “different metabolic, transport, signaling, and tionship between the increasing number of vaccines in developmental defects cause a common defect in neu- ral circuitry which is responsible for autism.”44 infancy and the increasing rates of autism diagnoses, par- In the absence of simple medical interventions for au- ticularly the potential of the ethylmercury-containing pre- tism, it is not surprising that families would turn to al- servative thimerosal to act as a developmental neuro- toxin. Physicians initially responded by postponing certain ternative medicine to help their children, learning of new 55 treatments from an informal network of families as well vaccines until thimerosal was removed ; further re- search has not revealed any link to developmental dis- as from listservs, the Internet, and searches of the medi- 56 cal literature. One mother of a child with autism, Karyn abilities, and a recent study found that the removal of Seroussi,28 described how she treated her son with an thimerosal from vaccines has not been associated with elimination diet after hearing from her mother-in-law that any changes in autism prevalence. The same Institute of her husband had begun talking as a child only after milk Medicine review committee that examined the evidence was removed from his diet. Such anecdotal reports can linking the measles-mumps-rubella vaccine to autism also 57 be powerful evidence for families considering new thera- confirmed the conclusion of a 2001 committee that al- pies, especially when the risks seem relatively small. though the hypothesis of an association between neu- Parents also turn to alternative medicine to address rodevelopmental disorders and the use of thimerosal- their children’s medical problems, ranging from aller- containing vaccines was biologically plausible, it was not gies and immune problems to sleep disturbances, supported by epidemiological evidence.53 Parents counter hyperactivity, and gastrointestinal difficulties, as much by citing a number of suggestive laboratory studies, in- as the core symptoms of autism. A published compila- cluding one study58 finding that mice with autoimmune tion of testimonials from parents using biomedical tendencies showed an increased susceptibility to thi- treatments is filled with similar accounts: “Brian also merosal and another study59 suggesting that thimerosal suffered from multiple ear infections, acid reflux, and may affect immune responses by altering the function- food intolerances”45; “Matthew had always been very ing of dendritic cells. Concerned parents have formed ad- small for his age and had constant diarrhea”46; “We vocacy groups devoted to the autism-mercury hypoth- battled not only thrush, but also constant, chronic esis, while public health officials voice concerns about congestion, eczema, and food sensitivities.”47 Parents declining vaccination rates. This particularly conten- often complain that pediatricians do not recognize tious issue, as well as the unproven use of chelation thera- common medical problems in their children because pies to treat possible “mercury toxicity” in children, may expressions of pain and discomfort are seen as merely act to divert attention from the important observations part of the underlying neurological condition of of parents and obscure their potential contribution to un- autism,48 although some researchers have begun to derstanding autism.

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©2007 American Medical Association. All rights reserved. Downloaded From: https://jamanetwork.com/ on 09/27/2021 ANTAGONISM, PARTNERSHIP, understanding disorders in ways that are difficult to OR COLLABORATION? envision within the confines of clinical work. Patients and their caregivers have daily experiences with ill- In the first half of the 20th century, parents of children ness; they witness its alterations over periods of weeks with developmental disabilities gathered in small local and months and are often in a privileged position groups to compare notes and wonder about their chil- when it comes to detailed reporting on the efficacy of dren’s future. In the 1930s and 1940s, these parent or- treatments. In the case of a behaviorally diagnosed dis- ganizations began working together and started to change order such as autism, this daily intimacy provides society’s views toward children with disabilities. They ar- important resources: parental reports can enable sub- gued that there was no shame in disability and that local typing across medical groups, such as children with schools and governments had an obligation to support regressive autism or gastrointestinal disturbances. families who cared for their children at home. By 1952, Indeed, the recent interest of the National Institutes of the largest parent group, the National Association for Re- Health and other national research organizations in tarded Children, had 119 local chapters. A variety of pro- community-based, participatory research acknowl- fessionals such as teachers in schools with special edu- edges the value of including patients and advocates in cation programs also provided a voice for children with all aspects of medical research.66 disabilities.60 Together, these grassroots organizations helped build the disability rights movement that dra- CONCLUSIONS matically transformed American laws, culture, and or- ganizations.61 The Individuals With Disabilities Educa- Parents of children with disorders on the autism spec- tion Act, the Americans with Disabilities Act, and a variety trum often suspect that they are regarded as “problem par- of court decisions have worked to ensure that persons ents” because of their insistence on alternative disease mod- with disabilities have full access to work, schools, and els for autism. Many, like Clara Claiborne Park20 and Karyn recreational activities. Seroussi,28 express the sense that their status as parents in- During the last 2 decades, advocacy groups have de- validates their observations about their children in the opin- veloped new relationships with researchers and medical ions of medical practitioners. Meanwhile, pediatricians are practitioners. The wide availability of information on the concerned about the willingness of parents to fully dis- Internet, combined with an increasing skepticism to- close the range of interventions that they are using with ward medical authority, has led to the formation of ad- their children, and many have voiced concerns that un- vocacy groups with an unprecedented interest in taking proven treatments might be used in favor of behavioral and part in research on particular disorders and to very spe- educational interventions. While case scenarios such as the cific ideas about both the disorder and the ways that re- one at the beginning of this article are not uncommon, it search should be carried out. Patients and their care- is critical to understand that parents of children with au- givers also have acquired a historical perspective: scholars tism generally share the values of medical professionals. in disability studies have demonstrated the ways that sys- Both parents and pediatricians are seeking amelioration of tematic exclusion from economic opportunities has been symptoms and the best possible quality of life for chil- as important as medical factors in creating perceptions dren, and nearly all agree on the potential value of medi- of persons with disabilities.62 Similarly, parents of chil- cal and behavioral interventions. dren with autism are acutely aware of the history of psy- In this article, we have attempted to note the many chogenic theories and are legitimately concerned about instances when parents have contributed to the expert the ability of pediatricians and developmental special- understanding of autism: as acute observers of their ists to dismiss parental claims in favor of an interpreta- children, noting nuances of behavior and treatment tion based on prevailing theories. response that might be invisible to pediatricians; as Beginning with human immunodeficiency virus and researchers, identifying new avenues of clinical and AIDS treatment activists in the last 2 decades, patient basic science; and as advocates, disseminating knowl- groups have gone beyond supporting research through edge and generating resources for further research. It funding to actively question the ways that clinical trials, is important that physicians be clear with parents for instance, are designed.63 This new generation of ad- about the strengths and weaknesses of both standard vocates often brings a formidable mastery of the vocabu- medical knowledge and alternative treatments. The lary and methods of research to bear on their critiques. history of parental involvement with research also Medical anthropologists have called the emerging forms suggests that each parent of a child with autism is a of patient activism devoted to specific disorders “bioso- valuable source of information and localized expertise, ciality”64 or “biological citizenship.”65 They emphasize not only about their own child but about the disorder the idea that now as never before, social groups are or- of autism in general. ganized around shared experiences of illness and dis- Most importantly, parents and caregivers will be cru- ability62 and these organizations act as interest groups that cial in making any treatment effective on the level of the bring pressures to bear on legislators, courts, and the medi- individual child. It is unlikely that autism will respond cal research community by virtue of the fact that re- to a single decisive intervention; it is far more likely that searchers depend on patient populations for access to re- both pediatricians and parents will be operating in the search subjects and materials.65 realm of partial and incremental improvements for quite Patient advocacy groups are not always easy part- some time. We hope that this article helps professionals ners with researchers, but they offer opportunities for to understand the historical contributions of families of

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©2007 American Medical Association. All rights reserved. Downloaded From: https://jamanetwork.com/ on 09/27/2021 children with autism and to thus foster the collabora- 19. Kaufman I, Rosenblum E, Meims L, Willer L. Childhood psychosis, I: childhood tive relationship that is critical to improving the care of schizophrenia: treatment of children and parents. Am J Orthopsychiatry. 1957; 27:683-690. persons with autism. 20. Claiborne Park C. The Siege: A Family’s Journey Into the World of an Autistic Child. Boston, Mass: Little Brown & Co Inc; 1967:143-144. 21. Lord C, Leventhal BL, Cook EH Jr. Quantifying the phenotype in autism spec- Accepted for Publication: November 16, 2006. trum disorders. Am J Med Genet. 2001;105:36-38. Correspondence: Chloe Silverman, PhD, Department of 22. Warren F. “Destructive effects” of SED mislabeling are cited: OSE official sug- Science, Technology, and Society, Penn State Univer- gests need for trained teachers; category change nears. Advocate. 1980;12. sity, 102 Old Botany, University Park, PA 16802 (cbs14 23. Dewey MA, Everard MP. The near-normal autistic adolescent. J Autism Child @psu.edu). Schizophr. 1974;4:348-356. 24. Sullivan RC. Hunches on some biological factors in autism. J Autism Child Author Contributions: Study concept and design: Silverman Schizophr. 1975;5:177-184. and Brosco. Acquisition of data: Silverman. Analysis and 25. Akerley MS. The invulnerable parent. J Autism Child Schizophr. 1975;5:275-282. interpretation of data: Silverman and Brosco. Drafting of 26. Kaufman BN. Son-Rise. New York, NY: Warner Books; 1976. the manuscript: Silverman. Critical revision of the manu- 27. Maurice C. Let Me Hear Your Voice: A Family’s Triumph Over Autism. New York, NY: Ballantine Books; 1994. script for important intellectual content: Silverman and 28. Seroussi K. Unraveling the Mystery of Autism and Pervasive Developmental Dis- Brosco. Obtained funding: Silverman. Administrative, tech- order: A Mother’s Story of Research and Recovery. New York, NY: Simon & Schu- nical, and material support: Silverman. ster; 2002. Financial Disclosure: None reported. 29. Davidovitch M, Glick L, Holtzman G, Tirosh E, Safir MP. Developmental Funding/Support: This work was supported by a Jacob regression in autism: maternal perception. J Autism Dev Disord. 2000;30: 113-119. K. Javits Fellowship from the US Department of Educa- 30. Werner E, Dawson G. Validation of the phenomenon of autistic regression using tion (Dr Silverman), a Mellon Postdoctoral Fellowship home videotapes. Arch Gen Psychiatry. 2005;62:889-895. (Dr Silverman), and grant 033954 from the Robert Wood 31. Zitner A. The nation; column one; whose DNA is it, anyway?; many people, Johnson Foundation General Scholar Program (Dr hoping for medical advances, give genetic material, but some researchers’ Brosco). refusal to share samples has donors up in arms. LA Times (Home Ed).July 18, 2003;§A:1. 32. 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Correction

Error in Text. In the article titled “Understanding Autism: Parents and Pediatricians in Historical Perspec- tive” by Silverman and Brosco published in the April issue of the Archives (2007;161[4]:392-398), an error oc- curred on page 394. In the first paragraph of the second column, the fourth and fifth sentences should have read as follows: “Parents are guaranteed a say in the review process: CAN maintains a scientific review committee comprising scientific degree–holding parents of chil- dren with autism; this review committee ranks projects after an initial review by a scientific advisory group (writ- ten communication, Therese Finazzo, January 5, 2006). The National Alliance for Autism Research maintains a similar 2-tiered system (written communication, Alycia Halladay, PhD, December 27, 2005).”

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