 Den Hartog, J. E., & Moro-Ellenberger, S. L. (2005). How do you measure a child? A study into the use of biometrics on children. TNO, Delft. Mitka, M. (2010). Rising autism rates still pose a mystery. JAMA, 303(7), 602-602. "... Researchers now believe that early intensive intervention is a key to improving outcomes for children with an autism spectrum disorder..."
Over the past decade, there has been increased interest in identifying
autism and autism spectrum disorder (ASD) in toddlers. Although there is
a strong rationale for identifying ASD early and delivering effective
intervention, a recent report in the journal Pediatrics raises important
questions about the scientific evidence currently available supporting
early intervention. In addition, the British National Health Service
(NHS) has not adopted universal screening for autism, even though the
American (US) Academy of Pediatrics endorsed a recommendation that all
toddlers be screened for ASD by the age of 24 months (in 2007). The goal
of this initiative is to identify and, where indicated, provide early
intervention for autism and ASD. Although it is inarguable that this is a
worthwhile and laudable goal, the systematic study of this goal is
confounded by the inherent difficulty in reliably identifying autism in
24-month-old toddlers. It is challenging to demonstrate intervention
effects in the absence of randomly assigned control groups in an
increasingly heterogeneous ASD population. The purpose of this paper is
to examine the current literature on early identification and early
intervention in autism and ASD and to provide a framework for examining
these issues.Wing, L., & Potter, D. (2002). The epidemiology of autistic spectrum disorders: is the prevalence rising?. Mental retardation and developmental disabilities research reviews, 8(3), 151-161. For decades after Kanner's original paper on the subject was published in 1943, autism was generally considered to be a rare condition with a prevalence of around 2–4 per 10,000 children. Then, studies carried out in the late 1990s and the present century reported annual rises in incidence of autism in pre-school children, based on age of diagnosis, and increases in the age-specific prevalence rates in children. Prevalence rates of up to 60 per 10,000 for autism and even more for the whole autistic spectrum were reported. Reasons for these increases are discussed. They include changes in diagnostic criteria, development of the concept of the wide autistic spectrum, different methods used in studies, growing awareness and knowledge among parents and professional workers and the development of specialist services, as well as the possibility of a true increase in numbers. Various environmental causes for a genuine rise in incidence have been suggested, including the triple vaccine for measles, mumps and rubella (MMR]. Not one of the possible environmental causes, including MMR, has been confirmed by independent scientific investigation, whereas there is strong evidence that complex genetic factors play a major role in etiology. The evidence suggests that the majority, if not all, of the reported rise in incidence and prevalence is due to changes in diagnostic criteria and increasing awareness and recognition of autistic spectrum disorders. Whether there is also a genuine rise in incidence remains an open question.Shattuck, P. T. (2006). The contribution of diagnostic substitution to the growing administrative prevalence of autism in US special education. Pediatrics, 117(4), 1028-1037. "..Prevalence findings from special education data do not support the claim of an autism epidemic because the administrative prevalence figures for most states are well below epidemiological estimates. The growing administrative prevalence of autism from 1994 to 2003 was associated with corresponding declines in the usage of other diagnostic categories."Matson, J. L., Wilkins, J., & González, M. (2008). Early identification and diagnosis in autism spectrum disorders in young children and infants: How early is too early?. Research in Autism Spectrum Disorders, 2(1), 75-84. "..The prevailing wisdom appears to be that early identification is good, and the earlier the better. However, the arguments put forth, while compelling, are largely unsubstantiated by data. Researchers need to establish if early identification, for example, results in better family support..." Perrin, E. C., Newacheck, P., Pless, I. B., Drotar, D., Gortmaker, S. L., Leventhal, J., ... & Weitzman, M. (1993). Issues involved in the definition and classification of chronic health conditions. Pediatrics, 91(4), 787-793. The need for a widely applicable definition of chronic conditions for research, policy, and program development has led to an extensive review of the development of such definitions, the considerations involved in their use, and some recommendations for a new approach. This paper examines some of the methodologic and conceptual issues related to defining and classifying chronic conditions and describes some consequences resulting from decisions made about these issues. While most examples are taken from child health applications, the basic concepts apply to all age groups. The dominant method for identifying and classifying children as having a chronic condition has relied on the presence of an individual health condition of lengthy duration. This condition-specific or "categorical" approach has increasingly seemed neither pragmatically nor conceptually sound. Thus, the development of a "generic" approach, which focuses on elements that are shared by many conditions, children, and families, is recommended. Such a definition might reflect the child's functional status or ongoing use of medical services over a specified time period. In addition, it is suggested that conditions be classified based on the experience of individual children, thus emphasizing the tremendous variability in expression of seemingly similar conditions. Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183-1215. "...The prevalence of autism and, more recently, ASDs is closely linked to a history of changing criteria and diagnostic categories. Autism first appeared as a separate entity with specific criteria in the DSM-III in 1980. In 1987, the Diagnostic and Statistical Manual of Mental Disorders, Third Edition, Revised (DSM-III-R) listed broadened AD criteria and the new subthreshold category of PDD-NOS, both of which promoted inclusion of milder cases. Later, these changes received criticism for being too inclusive and for promoting overdiagnosis. The DSM-IV criteria published in 1994 reflected the result of years of analyses to reduce the overinclusiveness of the DSM-III-R criteria; however, it included AS for the first time, which, in effect, broadened the range of disorders..."Federal study estimates 1 in 88 children has symptoms of autismBy David Brown, Published: March 29, 2012 The Washington Post "...If the rising prevalence represents an actual increase of the disorders — and is not the consequence of finding previously undiagnosed cases — that suggests there may be environmental exposure or demographic change (such as older parenthood) that is responsible, because a population’s genetic background wouldn’t change over a few decades..." Baio, J. (2012). Prevalence of Autism Spectrum Disorders: Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report. Surveillance Summaries. Volume 61, Number 3. Centers for Disease Control and Prevention. "...Because the ADDM Network sites do not make up a nationally representative sample, these combined prevalence estimates should not be generalized to the United States as a whole.
These data confirm that the estimated prevalence of ASDs identified in the ADDM network surveillance populations continues to increase. The extent to which these increases reflect better case ascertainment as a result of increases in awareness and access to services or true increases in prevalence of ASD symptoms is not known..." U.S. autism rate surges, CDC reportsBy Lenny Bernstein, Updated: March 27, 2014 at 1:25 pm The Washington Post "..The CDC said it would be announcing a new initiative later Thursday to encourage parents to have young children screened for autism in their early years, and given the support they need. Officials said most children are not diagnosed until they are at least four years old, though identification is possible as early as two years old. Any parent who has concerns about how a child plays, learns, speaks, acts or moves should seek an assessment, officials said..."
Caruso, D. (2010). Autism in the US: Social movement and legal change. Am. JL & Med., 36, 483. The social movement surrounding autism in the US has been rightly defined a ray of light in the history of social progress. The movement is inspired by a true understanding of neuro-diversity and is capable of bringing about desirable change in political discourse. At several points along the way, however, the legal reforms prompted by the autism movement have been grafted onto preexisting patterns of inequality in the allocation of welfare, education, and medical services. In a context most recently complicated by economic recession, autism-driven change bears the mark of political and legal fragmentation. Distributively, it yields ambivalent results that have not yet received systemic attention. This article aims to fill this analytical vacuum by offering, first, a synoptic view of the several legal transformations brought about or advocated for by the autism movement and, second, a framework for investigating their distributive consequences. Perez, V. W. (2010). The rhetoric of science and statistics in claims of an autism epidemic. Advances in Medical Sociology, 11, 203-221. Purpose – To examine the rhetorical use of scientific medical evidence and diagnoses statistics in claims of an epidemic of childhood autism spectrum disorder.
Methodology/approach – Qualitative analysis of the content and dissemination of claims in several venues for social problems construction, including popular media, peer-reviewed scientific literature, and the Internet.
Findings – Rhetorical use of etiological evidence, both scientific and experiential, positing a causal link between medical interventions (e.g., vaccines), environmental toxins, and autism is prominent across several arenas for social problems construction. Claims and counterclaims involve statements amiable to or critical of evidence and its relationship to the scientific method. Presentation of diagnoses statistics and covariation with vaccination regimens are integral as a rhetorical device in claims of a true change in prevalence.
Contribution to the field – Elucidates how the medicalization of childhood developmental disabilities and increased lay involvement (e.g., parents) in the social problems process were vital for the proliferation of attention and resources directed to autism presently. The fundamental scientific method and the lack of sufficient, valid scientific evidence are not integral to the continuation of the movement that posits vaccines cause autism. The content of these claims is unfettered on the Internet as an arena for claimsmaking, allowing a lay social movement to continue that often stands in opposition to recognized scientific authority and evidence.Altucher J, Save the children (and make money), The Wall Street Journal, August 10, 2009. |
