Autism: Epidemic or Ordinary State of the Subject?
On Thursday the 28th of March, the figures came out. Not those from the CAC 40 or from the NASDAQ, or from the last wave of pre-presidential election polling, but those from the CDC.
In the American acronym of the Centre for Disease Control and Prevention, the P is missing. The figures are not good. The prevalence of autism does not stop increasing. It now concerns 1 child in 88, that is to say, given the dissymmetry between the sexes, 1 boy in 54. This means there has been an increase of 25 % since 2006 and 78% since 2000-2002 at the time of the first figures from the CDC. These figures were obtained using data gathered across 14 States, concerning children diagnosed in schools and health services, within a network forming an integrated database. The prevalence discrepancies between States range from 1 to 4; from 1 in 210 in the State of Alabama to 1 in 47 in the State of Utah. We predict that as long as better diagnosis will be made in poorer States like Alabama, and that children from Afro-American and Hispanic communities will be more likely to receive the diagnosis, the figures will go on augmenting in a mechanical way. Several schools compete in interpreting these results.
The first one is that of the directors of different bureaucratic health structures. To start with, the Director of the CDC, Thomas Frieden, who declared to Alice Park, on the Time Magazine website: "At this point, I think it's a possibility that the increase in identification of autism is entirely the result of better detection. We don't know whether or not that is the case, but it is a possibility".
In order to reassure parents, and to face up to future increase, he adds: "What we do know for certain is that autism is common, and children with autism need to be effectively served. We need to increase the number of kids detected, the number of kids detected early and the number of kids enrolled in services early." He reassures then by speaking of an increase enrolment in programs reserved for autistic children. Finally, he wants to transform anxious parents into actors of the system: "It's important that parents who have any concerns bring them up. Any concern has to be taken seriously. Don't defer."
The Director of the National Institute of Mental Health, the NIMH, Thomas Insel, has also situated himself within this perspective. The increase would be due to better awareness of the problem, better detection, and greater access for autistic children to special programs and services within public schools. He considers that subjects are more often diagnosed under the pressure of parents who also have access to special aid and social services.
We are speaking then about a factor of "diagnostic substitution" which is preferred to an "effect of conformity". The important journal "Paediatrics", of the American Academy of Paediatrics regularly devotes articles to this effect of substitution in the way children are categorised in health centres as well as in services of Special Education. Initially, we simply note that the Procustean bed is expanding and that everyone has his place in the "spectrum of the disorder". All those who had been categorised as being mentally retarded, schizophrenic or handicapped in the broader sense, are now autistic. What also reassured paediatricians was that in comparing the figures issued from special education and those predicted by epidemiology, the figures remained below those predicted by the health system.
This is now questioned by the CDC, which integrates the two dimensions, school and health, in its figures.
The Directors of the NIMH and the CDC are very concerned about a perverse effect of the autism "epidemic" insofar as if it is associated with an "environmental factor", the most frequently quoted factor is vaccination. One remembers the panic that Andrew Wakefield provoked with his theory of a correlation between autism and the measles-mumps-rubella vaccine. No matter how much this theory was rejected, the fast increase of the prevalence of autism in the USA does lead parents to refuse vaccinations. We know that freedom of choice is something that Americans are very attached to. This refusal now provokes epidemics of measles, mumps and whooping-cough which had disappeared from the field of paediatrics. If these refusals get worse, we fear small health catastrophes. The different relationship that parents have with paediatricians in Europe prevent these health care regressions. For how long? With the help of those who proclaim "French backwardness", we could also give in to these sirens, with the same predictable consequences.
Another school of interpretation is represented by "Autism Speaks", the association which inspired "Ensemble pour l'autisme" in its program and methods. Its President, Mark Rothmayr, thinks that the role played by better diagnosis of the disorder only accounts for half of its increase. On the same line of the Association's discourse, he speaks of a national catastrophe and of the necessity of a "national action plan" to respond to it. The journal "Disabilities Studies Quarterly", "the first journal in the field of disability studies", published by Ohio State University, published in 2012 under the signature of Alicia A. Broderick, Professor of Education Sciences at Columbia University, an interesting analysis of the rhetoric of Autism Speaks. As a Professor of Education Sciences, she supports the inclusion of handicapped children and/or autistic children in the public school system and is against specialised behaviour programs like ABA. She analyses, from this point of view, the rhetoric and the methods that have contributed to the development of the ABA industry, to the detriment of public schools. She analyses three decisive rhetorical moments in the USA which have shaped the current discourse on autism. Firstly, in 1987, Lovaas' article was the first to speak about "curing" autism. Next, in 1993, the publication of Catherine Maurice's autobiographical story recounted her experience of an ABA type of program with her own children because it was the only one that was founded on "a scientific point of view". Finally, in 2005, Autism Speaks was created, with its corporate-style advertising rhetoric and its political strategy. She notes "the pervasive deployment of the rhetoric of autism as "disease" and as "epidemic" through its Ad Council Public Service». She considers it a rhetorical masterstroke to have behavioural interventions accepted as "medically neccessary treatments" for phenomena that are constituted as an "illness" whose cause is at same time "genetic" and "epidemic". We can see, in France, how the rhetorical strategy of the Coordinator of the movement "Ensemble pour l'autisme", Vincent Gerhards, adapts the American formula to the French and European situation. In a full page of an important daily paper, in the form of a newsflash, he congratulates the "Recommendations" of the HAS (High Authority for Health), which he transforms into one of his program's stages. "For the first time, the effectiveness of educational approaches is recommended… What's more, taking support from the petition launched by the Autism collective, President of the National Assembly, M. Bernard Accoyer, consulted the Economic, Social and Environmental Council (CESE) on the economic and social costs of autism, which must render its report in October 2012". On the same page we find two other important attention-getters. An interview with a French Geneticist who manages the Neuroscience Service at the Pasteur Institute, under the title: "The discovery of the implicated genes changes everything"; and another interview with a supervisor 'Mecenat Health Handicap" of the Orange Foundation, who responds to the question: "Why the Orange Foundation chose to finance autism projects". The title of the Geneticist's article is rather overdone as it presents things as being an accomplished fact while he says "Step by step, we are advancing in our understanding of the genetic causes of autism. But nearly every case is tied to a different gene. We are still at the stage of investigating the implicated genes and their respective roles". The paradox of the genetic foundation for the "autistic spectrum disorders" is thus laid out: far from finding common genes for the spectrum of the autistic disorder, it is only established that in each case the genes are different, which the preliminary diagnostic supposes. What is important here is the recourse to "scientific data". On this page we find once again the rhetorical triptych of Autism Speaks: ABA as a necessary medical response to a genetic epidemic in a public (CESE) and private (Orange Foundation) partnership, under the control of the "collective Ensemble pour l'autisme".
Beyond these two schools of interpretation, the rapid increase in the figures on the prevalence of autism, allows a doubt to hang over its genetic foundation. The recent development by the Centre of Excellence on Autism of San Diego of a test which allows for the detection of autism in five minutes from the age of one will without doubt also contribute to the increase. It now becomes possible for anyone to make a subject enter into this category. Where would the genetic mutation able to provoke such effects then come from?
On the 4th of April, the geneticists proposed a new theory which answered this question. Three independent studies published on the website of the journal Nature take into account the number of genes involved in the alteration of genes which control cerebral development. There are hundreds of them, even over a thousand, whose rare mutations could account for 15% to 20% of autistic disorders. The method consisted in comparing the genetic material obtained through blood samples from parents who were not autistic themselves but who had given birth to an autistic child. In this way, they isolated the mutations from one generation to the next: The mutations are called "de novo". The problem is that we know little about the role of these rare "de novo" mutations, highlighted Aravinda Chakravarti, from the Institute of Genetic Medecine of John Hopkins University.
Given that the same de novo mutation on the same gene of two children who had nothing else in common was founded, one team considers this mutation to be causal. Another team found a problem on the same gene, and on two others identified in the same way in a sample from families who had an autistic child. Hence the hypothesis formulated by Mark Daly from Harvard University: "children with autism have in average a higher de novo mutation rate, with more severe effects". But, especially, the risk of these mutations increases with the age of the parents, and especially with the age of the father. We would have then put our finger on how our lifestyle would account for the increase in autism. The paradox of this hypothesis is that it would return to scientifically inculpate the parents of autistic children. It also complicates research focused on epigenetics as a whole. How to observe the specific factors that affect families in an environment which cannot be reduced to variables that are controlled in a laboratory concerning thousands of genes?
From the end of this year, the galloping increase in the number of autistic children will be reduced by the adoption of more restrictive criteria for inclusion within the spectrum of the disorder. The DSM commission responsible for the definition of autism decided to exclude Asperger's Syndrome and Pervasive Developmental Disorders Not Otherwise Specified (PDD-NOS), broad categories which, since 1994, had allowed it to become more extended. A mechanical reduction effect and less worrying figures will thus be assured. Fred R. Volkmar, director of the Child Study Centre at Yale, is categorical: "The proposed changes would put an end to the autism epidemic". Will the measure be sufficient?
Does not the statistical debate make a quasi-ordinary status of autism appear? If we define the speaking being as a being of communication, we discover a radical flaw within it. The beginning of the 20th Century consisted in the discovery of the extent of neurosis and psychical conflict. The end of the last century was marked by the ordinary status of psychosis and depression. Will not the 21st Century be that of the evidence of an ordinary status of autism?
Translation: Frances Coates-Ruet