703 For recent studies on autism prevalence, see Gillian Baird et al., “Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: The Special Needs and Autism Project (SNAP),” Lancet 368, no. 9531 (July 15, 2006); Michael D. Kogan et al., “Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007,” Pediatrics 124, no. 5 (2009); and Catherine Rice et al., “Changes in autism spectrum disorder prevalence in four areas of the United States,” Disability and Health Journal 3, no. 3 (July 2010).
704 Diagnostic substitution in California is the subject of Lisa A. Croen et al., “The changing prevalence of autism in California,” Journal of Autism and Developmental Disorders 32, no. 3 (June 2002); see also Marissa King and Peter Bearman, “Diagnostic change and the increased prevalence of autism,” International Journal of Epidemiology 38, no. 5 (October 2009).
705 Estimates of the lifetime cost of supporting individuals with autism come from Laura Ellen Schreibman, The Science and Fiction of Autism (2005), page 71; see also Michael Ganz, “The lifetime distribution of the incremental societal costs of autism,” Archives of Pediatric & Adolescent Medicine 161, no. 4 (April 2007).
706 The quotation from Steven Hyman comes from a personal communication in 2008.
707 See Marissa King and Peter Bearman, “Diagnostic change and the increased prevalence of autism,” International Journal of Epidemiology 38, no. 5 (October 2009); and Dorothy V. Bishop et al., “Autism and diagnostic substitution: Evidence from a study of adults with a history of developmental language disorder,” Developmental Medicine & Child Neurology 50, no. 5 (May 2008).
708 For information on regression in autism, see Sally J. Rogers, “Developmental regression in autism spectrum disorders,” Mental Retardation & Developmental Disabilities Research Reviews 10, no. 2 (2004); Janet Lainhart et al., “Autism, regression, and the broader autism phenotype,” American Journal of Medical Genetics 113, no. 3 (December 2002); and Jeremy R. Parr et al., “Early developmental regression in autism spectrum disorder: Evidence from an international multiplex sample,” Journal of Autism & Developmental Disorders 41, no. 3 (March 2011). For the idea that regression in autism may be the expression of an unfolding genetic process, see Gerry A. Stefanatos, “Regression in autistic spectrum disorders,” Neuropsychology Review 18 (December 2008).
709 Eric Fombonne presented this in a talk at UCLA in 2012. It represents work by Judith Miller that reclassified old files using modern diagnostic criteria. Miller showed that prevalence was previously underestimated (i.e., at that time, many children were excluded from studies—as not meeting diagnostic criteria—who would now be included). She will be the first author on a paper that summarizes this work, which is not yet published.
710 Andrew Wakefield first proposed an association between the MMR vaccine and autism in “Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children,” Lancet 351 (1998).
711 Official figures on measles incidence and deaths in the UK following increasing rejection of the MMR vaccine can be found in the UK Health Protection Agency report “Measles notifications and deaths in England and Wales, 1940–2008” (2010).
712 Thomas Verstraeten et al., “Safety of thimerosal-containing vaccines: A two-phased study of computerized health maintenance organization databases,” Pediatrics 112, no. 5 (November 2003).
713 The Lancet’s apology for the 1998 paper by Andrew Wakefield was announced by editor in chief Richard Horton in “A statement by the editors of The Lancet,” Lancet 363, no. 9411 (March 2004). The final retraction occurred six years later, after the UK General Medical Council announced the results of its investigation; see Editors of the Lancet, “Retraction—Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children,” Lancet 375, no. 9713 (February 2010). The story was reported by David Derbyshire, “Lancet was wrong to publish MMR paper, says editor,” Telegraph, February 21, 2004; Cassandra Jardine, “GMC brands Dr Andrew Wakefield ‘dishonest, irresponsible and callous,’” Telegraph, January 29, 2010; and David Rose, “Lancet journal retracts Andrew Wakefield MMR scare paper,” Times, February 3, 2010.
714 For a brief overview of the history of vaccine causation theories of autism, see Stanley Plotkin, Jeffrey S. Gerber, and Paul A. Offit, “Vaccines and autism: A tale of shifting hypotheses,” Clinical Infectious Diseases 48, no. 4 (February 15, 2009).
715 The 20–50 percent regression estimate comes from Emily Werner and Geraldine Dawson, “Validation of the phenomenon of autistic regression using home videotapes,” Archives of General Psychiatry 62, no. 8 (August 2005).
716 David Kirby, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy (2005).
717 The Wright family conflict was reported in Jane Gross and Stephanie Strom, “Autism debate strains a family and its charity,” New York Times, June 18, 2007.
718 Jenny McCarthy’s books include Louder Than Words: A Mother’s Journey in Healing Autism (2007) and Mother Warriors: A Nation of Parents Healing Autism Against All Odds (2008).
719 The Hannah Poling case is discussed in Paul A. Offit, “Vaccines and autism revisited: The Hannah Poling case,” New England Journal of Medicine 358, no. 20 (May 15, 2008).
720 The quotation from Lenny Schafer comes from a telephone interview with him in 2008.
721 For an example of papers promoting the hypothesis that autism is associated with environmental metals, see Mary Catherine DeSoto and Robert T. Hitlan, “Sorting out the spinning of autism: Heavy metals and the question of incidence,” Acta Neurobiologiae Experimentalis 70, no. 2 (2010). In contrast, recent research demonstrates the absence of any association of autism with genes that regulate heavy metals in the body: Sarah E. Owens et al., “Lack of association between autism and four heavy metal regulatory genes,” NeuroToxicology 32, no. 6 (December 2011).
722 See Yumiko Ikezuki et al., “Determination of bisphenol A concentrations in human biological fluids reveals significant early prenatal exposure,” Human Reproduction 17, no. 11 (November 2002).
723 The study of twins and environmental factors is Joachim Hallmayer et al., “Genetic heritability and shared environmental factors among twin pairs with autism,” Archives of General Psychiatry (July 4, 2011).
724 The quotation from Neil Risch comes from Erin Allday, “UCSF, Stanford autism study shows surprises,” San Francisco Chronicle, July 5, 2011.
725 The quotation from Joseph Coyle comes from Laurie Tarkan, “New study implicates environmental factors in autism,” New York Times, July 4, 2011.
726 The study finding an increased incidence of autism in children of mothers who used SSRIs during pregnancy is Lisa A. Croen et al., “Antidepressant use during pregnancy and childhood autism spectrum disorders,” Archives of General Psychiatry 68, no. 11 (November 2011).
727 These results rely on complex models and specific assumptions that may not be met. Joachim Hallmayer’s data show a 22 percent rate of concordance among dizygotic twins, and slightly more than 60 percent for monozygotic twins; see Joachim Hallmayer et al., “Genetic heritability and shared environmental factors among twin pairs with autism,” Archives of General Psychiatry 68, no. 11 (November 2011). A simple and standard means of ascertaining heritability is Falconer’s formula, which is hb2 = 2(rmz–rdz), in which hb2 represents general heritability, rmz is monozygotic twin correlation, and rdz is dizygotic twin correlation. This would lead to a heritability estimate of about 70 percent, consistent with previous results. A recent very large study comparing siblings and half siblings supports a ratio of 60 percent or higher; see John N. Constantino et al., “Autism recurrence in half siblings: Strong support for genetic mechanisms of transmission in ASD,” Molecular Psychiatry, epub ahead of print (February 28, 2012).
728 This passage is based on my interview with Mark Blaxill in 2008.
729 Blaxill is coauthor of Amy S. Holmes, Mark F. Blaxill, and Bo
yd E. Haley, “Reduced levels of mercury in first baby haircuts of autistic children,” International Journal of Toxicology 22, no. 4 (July–August 2003); and Martha R. Herbert et al., “Autism and environmental genomics,” NeuroToxicology 27, no. 5 (September 2006).
730 The reports of the Yale study of the responses of autistic subjects to Who’s Afraid of Virginia Woolf? are in Ami Klin et al., “Visual fixation patterns during viewing of naturalistic social situations as predictors of social competence in individuals with autism,” Archives of General Psychiatry 59, no. 9 (September 2002); and Ami Klin et al., “Defining and quantifying the social phenotype in autism,” American Journal of Psychiatry 159 (June 2002). For extensions of that work to young children, see Katarzyna Chawarska et al., “Automatic attention cueing through eye movement in 2-year-old children with autism,” Child Development 74, no. 4 (July–August 2003); and Katarzyna Chawarska et al., “Limited attentional bias for faces in toddlers with autism spectrum disorders,” Archives of General Psychiatry 67, no. 2 (February 2010).
731 See page 5 of Catherine Lord and James McGee, Educating Children with Autism (2005), in which she explains, “A large body of research has demonstrated substantial progress in response to specific intervention techniques in relatively short periods of time (e.g., several months) in many specific areas, including social skills, language acquisition, nonverbal communication, and reductions in challenging behaviors. Longitudinal studies over longer periods of time have documented changes in IQ scores and in core deficits (e.g., joint attention), in some cases related to treatment, that are predictive of longer term outcomes. However, children’s outcomes are variable, with some children making substantial progress and others showing very slow gains. Although there is evidence that interventions lead to improvements, there does not appear to be a clear, direct relationship between any particular intervention and children’s progress. Thus, while substantial evidence exists that treatments can reach short-term goals in many areas, gaps remain in addressing larger questions of the relationships between particular techniques and specific changes.”
732 The quotation from Bryna Siegel occurs on page 3 of Helping Children with Autism Learn: Treatment Approaches for Parents and Professionals (2003).
733 Early reports by Charles B. Ferster on his work in behavioral conditioning include “Positive reinforcement and behavioral deficits of autistic children,” Child Development 32 (1961); and “The development of performances in autistic children in an automatically controlled environment,” Journal of Chronic Diseases 13, no. 4 (April 1961). A notable quote from the first paper: “Mothers of autistic children often appear to have strong repertoires prepotent over the child. This may be at least a partial reason why mothers of autistic children are so often well-educated, verbal, and at least superficially adequate people.”
734 ABA is discussed at length in Laura Schreibman, The Science and Fiction of Autism (2005); and Michelle R. Sherer and Laura Schreibman, “Individual behavioral profiles and predictors of treatment effectiveness for children with autism,” Journal of Consulting & Clinical Psychology 73, no. 3 (June 2005).
735 For a recent, comprehensive literature review on behavioral interventions for autism spectrum conditions, see Maria B. Ospina et al., “Behavioural and developmental interventions for autism spectrum disorder: A clinical systematic review,” PLoS One 3, no. 11 (November 2008).
736 For more on Floortime, see Stanley I. Greenspan and Serena Weider, Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think (2006).
737 The AAP has concluded that the efficacy of AIT has not been established; see American Academy of Pediatrics Policy Committee on Children with Disabilities, “Auditory integration training and facilitated communication for autism,” AAP Policy Committee on Children with Disabilities 102, no. 2 (1998).
738 The Rapid Prompting Method is described in Portia Iversen, Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism (2006); and Tito Rajarshi Mukhopadhyay, The Mind Tree: A Miraculous Child Breaks the Silence of Autism (2003).
739 Scholarly papers on service animals include Olga Solomon, “What a dog can do: Children with autism and therapy dogs in social interaction,” Ethos 38, no. 1 (March 2010); and François Martin and Jennifer Farnum, “Animal-assisted therapy for children with pervasive developmental disorders,” Western Journal of Nursing Research 24, no. 6 (October 2002).
740 The first quote about Kaleb and Chewey comes from Amanda Robert, “School bars autistic child and his service dog, “Illinois Times, July 23, 2009; the second is taken from the decision in Nichelle v. Villa Grove Community Unit School District No. 302, Board of Education 302 (Appellate Court of Illinois, Fourth District, decided August 4, 2010; full text at http://caselaw.findlaw.com/il-court-of-appeals/1537428.html). For more on the outcome of the lawsuit filed by the parents against the school district, see Patrick Yeagle, “Dog fight ends with hall pass,” Illinois Times, September 9, 2010.
741 For a popular work on the gluten- and casein-free diet, see Karyn Seroussi, Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery (2000).
742 A recent Cochrane Review paper concluded, “There is no evidence of effect of SSRIs in children and emerging evidence of harm. There is limited evidence of the effectiveness of SSRIs in adults from small studies in which risk of bias is unclear”; see Katrina Williams et al., “Selective serotonin reuptake inhibitors (SSRIs) for autism spectrum disorders (ASD),” Evidence-Based Child Health: A Cochrane Review Journal 6, no. 4 (July 2011).
743 Statistics on the prevalence of seizure disorders in people with autism come from the National Institute of Neurological Disorders & Stroke’s “Autism Fact Sheet” (2011), at http://www.ninds.nih.gov/disorders/autism/detail_autism.htm.
744 Psychopharmacological treatments are discussed in Melissa L. McPheeters et al., “A systematic review of medical treatments for children with autism spectrum disorders,” Pediatrics 127, no. 5 (May 2011).
745 The passage from Kamran Nazeer occurs on page 28 of Send in the Idiots (2006).
746 This passage is based on my interview with Bruce Spade in 2007. All names in this passage are pseudonyms.
747 Hesley Village and College is described in Anjana Ahuja’s article “Care in the community,” Times, February 4, 2008.
748 The quotation from Anton Chekhov comes from page 30 of David Mamet’s translation of The Cherry Orchard (1987). From the original Russian: “ , , .” http://ilibrary.ru/text/472/p.1/index.html.
749 Barry Kaufman’s books include Son-Rise (1976) and Son-Rise: The Miracle Continues (1995). Although the Option Institute’s promotional materials cite anecdotal evidence of the Son-Rise Program’s effectiveness, and refer to research soon to be featured in peer-reviewed journals, rigorous evaluations of the program have yet to be published; see Jeremy Parr, “Clinical evidence: Autism,” Clinical Evidence Online 322 (January 2010). A 2003 survey conducted in the UK found that “involvement led to more drawbacks than benefits for the families over time.” A 2006 follow-up concluded that “the programme is not always implemented as it is typically described in the literature,” which significantly complicates the task of evaluation; see Katie R. Williams and J. G. Wishart, “The Son-Rise Program intervention for autism: An investigation into family experiences,” Journal of Intellectual Disability Research 47, nos. 4–5 (May–June 2003); and Katie R. Williams, “The Son-Rise Program intervention for autism: Prerequisites for evaluation,” Autism 10, no. 1 (January 2006). In March 2010, the UK Advertising Standards Authority ruled that an advertisement for an Option Institute lecture was misleading in that it implied that the Son-Rise Program could cure autism when, in fact, this has never been established; see “ASA adjudication on the Option Institute and Fellowship,” issued March 3, 2010, http://www.asa.org.uk/Asa-Action/Adjudications/2010/3/The-Option-Institute-and-Fellowship/TF_ADJ_48181.aspx. For the allegation that the child was never
autistic at all, see Bryna Siegel, The World of the Autistic Child (1996), pages 330–31. Siegel writes, “I’ve run across a couple of the professionals who were among those alleged to have diagnosed the boy as autistic, and both remain uncertain that the boy actually was autistic before treatment.”
750 For more on Holding Therapy, see Jean Mercer, “Coercive restraint therapies: A dangerous alternative mental health intervention,” Medscape General Medicine 7, no. 3 (August 9, 2005).
751 Rupert Isaacson, The Horse Boy: A Father’s Quest to Heal His Son (2009).
752 The dangers of chelation are discussed in Saul Green, “Chelation therapy: Unproven claims and unsound theories,” Quackwatch, July 24, 2007.
753 Mercury causation hypotheses are discussed in Karin B. Nelson and Margaret L. Bauman, “Thimerosal and Autism?,” Pediatrics 111, no. 3 (March 2003).
754 The death of an autistic boy during IV chelation is reported in Arla J. Baxter and Edward P. Krenzelok, “Pediatric fatality secondary to EDTA chelation,” Clinical Toxicology 46, no. 10 (December 2008).
755 For information about the “Lupron protocol” and state medical board disciplinary actions against its promoters, see Trine Tsouderos, “‘Miracle drug’ called junk science,” Chicago Tribune, May 21, 2009; Steve Mills and Patricia Callahan, “Md. autism doctor’s license suspended,” Baltimore Sun, May 4, 2011; Meredith Cohn, “Lupron therapy for autism at center of embattled doctor’s case,” Baltimore Sun, June 16, 2011; Maryland State Board of Physicians, Final Decision and Order in the matter of Mark R. Geier, M.D. (March 22, 2012), at http://www.mbp.state.md.us/BPQAPP/orders/d2425003.222.pdf; Statement of Charges under the Maryland Medical Practice Act in the Matter of David A. Geier (May 16, 2011), at http://www.mbp.state.md.us/BPQAPP/orders/GeierCharge05162011.pdf; and out-of-state suspension notices and orders on the websites of the Medical Board of California, State of Florida Department of Health, Medical Licensing Board of Indiana, Commonwealth Board of Kentucky, New Jersey State Board of Medical Examiners, State Medical Board of Ohio, Virginia Department of Health Professions, and the State of Washington Department of Health Medical Quality Assurance Commission.
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