A Sad Day for the Academy
Dr Nancy Murphy
Council on Children with Disabilities
American Academy of Pediatrics
Dear Dr Murphy
I am writing about some concerns I have with the Academy's position statement on the management of children with autism spectrum diagnoses (copy attached). I have thought long and hard about voicing this position. Obviously the Academy and your Committee mean well and I would not like this to be taken as mere quibbling. My concerns are I think justified in the light of what happened when the New York State Department of Health Guidelines endorsed a particular form of management on less than adequate grounds. Subsequently, the report was quoted by all and sundry to the great detriment of developments in the field. The Academy's paper is similarly flawed and if the inaccuracies in it are properly dealt with perhaps it will not be used as ammunition to mandate one form of treatment for all autistic children, a prospect that parents of children like mine can only view with misgiving.
A Sad Day for the Academy
Myers and Johnson’s ‘Management of Children with Autism Spectrum Disorders’  published under the aegis of the
“Although several of these literatures [developmental, neurological, behavioral, epidemiological] appear to be internally well integrated, there is remarkably little integration across literatures. For example, the information from the literature describing characteristics of children with autistic spectrum disorders is often not linked to treatment programs. Likewise, the developmental literature, which is descriptive in nature, has only rarely been integrated into individual intervention practice research, which tends to be behaviorally oriented”
The paper by Myers and Johnson perpetuates this miserable state of affairs, without there being the least necessity for it. Paediatricians, one would think, can manage to integrate incomplete data of variable reliability quite well and in the interests of accuracy should have been given the opportunity. There are several instances in this paper, where accuracy has been sidelined in favour of the maintenance of an illusion of progressive uniformity.
Starting with the commentary on the effectiveness of various therapies, one wonders how it was that the authors came to the conclusion that Applied Behavior Analysis (ABA) was the only game in town when the NRC came to the far more nuanced conclusion that, given the heterogeneous nature of the ASD spectrum, not one therapy was appropriate for everyone or at every stage of development. It is not as if the authors had access to more and more compelling research than the NRC.
The history of the effectiveness of
Some of the citations used as part of the evidence base are not quite accurate. Reference is made to Birnbrauer and Leach 1996 but not to their ten-year follow up (Birnbrauer Leach 2006) , which advised that the gains initially reported in their experimental group did not last. Howard et al’s study is referenced but without mentioning what one behaviorist  referred to as serious methodological flaws such that:
“Utilizing a pretest-posttest nonequivalent groups design, the Howard, Sparkman, Cohen, Green, and Stanislaw (2005) study failed to demonstrate the superiority of early intensive behavioral treatment over that provided by special day classes in public schools”
Incidentally, in the Howard et al study, there were two children whose behaviour deteriorated so badly that they were withdrawn from the experimental group and the reason given was their very young age – 2, the age at which the AAP is recommending intensive therapy.
By taking a circumscribed view of the field the authors have managed to overlook some factors in the management of ASD that others regard as central. Sensory hypersensitivities are dismissed as not always relevant to ASD, though Dr Temple Grandin, scientist and autistic has spent years at numerous conferences and in her writings emphasising the overwhelming relationship between what looks to be mal-adaptive behaviour and the effects of the sensory environment.
This conflation has the unfortunate consequence of falsely equating efficacy of sensory integration therapy with the efficacy of occupational therapy in general and the portrayal of occupational therapy as not terribly important in the scheme of things therapeutic. The fact that sensory integration therapy speaks more of hope rather than achievement in no way reflects on the real and utterly necessary intervention of trained occupational therapists in competently addressing the many manifestations of apraxia in ASD folk. I leave it to the colleges of occupational therapists to protest the misrepresentation of their importance in intervention. I would like to draw the attention of the AAP to the academic credentials of the average BCBA certified behaviour analyst. A thorough grounding in anatomy, physiology, kinesiology and child development theory does not appear to be among them. None is actually mandatory though behaviour therapists routinely undertake the tasks more usually reserved for speech language therapists and occupational therapists with other populations. This is a serious issue and if the authors wish to recommend
Also buried in the paper, this time with the pop psychology of Relationship Development Intervention, is a method of intervening with the parents rather than the children, Responsive Teaching with a note that there is little scientific evidence of efficacy. This is actually not true. Randomised controlled trials (RCT) in autism research are a rarity. Hence the RCT of an intervention targeted at parents by Aldred et al is all the more valuable,  demonstrating the efficacy of this approach. So many of the behaviours exhibited that parent wish their children wouldn’t are simply the products of frustration born of poor communication. Training parents to be more aware of the communicative efforts of their children surely has to be one of the best tools in the intervention arsenal to increase effective communication and decrease maladaptive behaviours regardless of whatever other interventions are used.
The authors refer frequently to the necessity of a functional behavioural assessment to guide the treatment of aberrant behaviours, a very sensible approach on the face of it. But this assessment is to be conducted under the behaviourist stricture that behaviour is usually to get something, avoid something, gain attention or escape from something. The authors point approvingly to the rigorous empirical nature of behavioural assessment. I would suggest that paediatricians resist the testimonials and peruse the results of such assessments to be found in the literature, ranging from the comical to the banal. Tang et al conducted 43 30-minute observations to conclude that a child’s ‘stereotypical’ ear covering happened only when another child was screaming.  O’Reilly of
“Linda refused to eat. Linda could not speak, and the staff treated her actions as misbehaviors. Between 3:52 p.m. and 8 p.m., staffers punished her with 13 spatula spankings, 29 finger pinches, 14 muscle squeezes, and 5 forced inhalings of ammonia. It turned out that Linda had a perforated stomach. She died on the operating table at 1:45 a.m.”
There can be a more complicated aetiology for a great many behaviours that do not fit well into the behaviourist canon.
Myers and Johnson’s article purports to give paediatricians at least a starting body of references in the management of ASDs. Even
‘Management of Children with Autism Spectrum’ is not as useful in guiding the management of ASD as it could have been, because it seems that a commitment to ‘evidence-based’ is something of a rhetorical device. Michele Dawson, researcher and autistic herself, remarked in a recent interview that:
"Accurate information is always good for autistic people. It might not be good for advocates, it might not be good for lawyers, it might not be good for lobby groups, it might not be good for various vested interests, it might not even be good for researchers, it might not be good for funding bodies, but it is always good for autistic people."
I daresay that it would also be good for paediatricians.
1. Scott M. Myers, Chris Plauché Johnson the Council on Children With Disabilities
Management of Children With Autism Spectrum Disorders
Pediatrics, Oct 2007; doi:10.1542/peds.2007-2362
3. Catherine Lord and James P. McGee, Editors, Educating Children with Autism, Committee on Educational Interventions for Children with Autism, Division of Behavioral and Social Sciences and Education, National Research Council, National Academy Press, Washington, DC
5. McEachin JJ, Smith T, Lovaas OI. Long-term outcome for children with autism who received early intensive behavioral treatment. Am J Ment Retard. 1993;97 :359 –372
6. Smith T, Groen AD, Wynne JW. Randomized trial of intensive early intervention for children with pervasive developmental disorder. Am J Ment Retard. 2000;105:269–285
7. Sallows GO, Graupner TD. Intensive behavioral treatment for children with autism: four-year outcome and predictors. Am J Ment Retard. 2005;110 :417 –438
8. Birnbrauer J.S., & Leach, D.J. (2006, June). The Murdoch Early Intervention Program at 10 years. Association for Behavior Analysis Annual Conference abstract.
9. Schoneberger, T. (2006), EIBT research after Lovaas (1987): A tale of two studies, The Journal of Speech-Language Pathology and Applied Behavior Analysis 1: 207-217
10 Aldred, C., Green, J. & Adams, C. (2004) A new social communication intervention for children with autism: a pilot randomised controlled treatment study suggesting effectiveness. Journal of Child Psychology and Psychiatry, 45, 1420–1430.
11. Jung-Chang Tang et al. Functional analysis of stereotypical ear covering in a child with autism: Implications for assessment and treatment, Journal of Applied Behavior Analysis, 33, 559–572.
12. O’Reilly, M. F. Functional analysis of episodic self-injury correlated with recurrent otitis media. J Appl Behav Anal. 1997 Spring; 30(1): 165–167.
15. Michelle Dawson, Isabelle Soulières, Morton Ann Gernsbacher, Laurent Mottron (2007) The Level and Nature of Autistic Intelligence Psychological Science 18 (8), 657–662.