A Sad Day for the Academy

Dr Nancy Murphy

Chair

Executive Committee

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.

Yours sincerely....

A Sad Day for the Academy

Myers and Johnson’s ‘Management of Children with Autism Spectrum Disorders’ [1] published under the aegis of the American Academy of Paediatrics, seeks to give guidance to paediatricians in the role of primary care physician for ASD children and their families. The aim is thus lofty and the article timely, given the increased attention being paid to ASD research and treatment in many countries. The article is not as useful as it could have been. Myers and Johnson have painted a somewhat rosy picture of the management process as a professional partnership between the paediatrician on one hand and the professional behavior analyst on the other with something of a glib nod to the contribution of other strategies and other specialties. In so doing, Myers and Johnson have gone to considerable pains to smooth out the many wrinkles in the literature concerning ASD management, putting this article out of sync with at least two recent major reviews. Noted autism researcher Fred Volkmar conducted a thorough review of the field in 2004 [2] and observed that autism research is almost characterized by bold assumptions based on scanty supporting data. Among its many conclusions, the National Research Council, 2001 report “Educating Children with Autism”) (NRC) [3] pointed to the perennial problem of the fragmented nature of management of autistic spectrum disorder in the following terms.

“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 ABA and associated techniques exemplifies the self-correcting nature of good Science. As with a great many advances, the initial ABA study, Lovaas 1987 held out great promise. Of an admittedly small sample, 47% emerged as best outcome, that is, mainstream educational placement and normal IQ after 2 years intensive treatment. But, contrary to popular legend this group was not “indistinguishable from their peers” according to Shea’s analysis [4] (not referenced by Myers and Johnson), of McEachin’s PhD thesis, which documented the results of numerous tests conducted in the follow up study [5]. Lovaas 1987 wasn’t a truly scientific study since the samples were not randomly assigned to control and experimental groups and subsequently there were dark mutterings of stacking the deck or populating the experimental group with children likely to do well. There have been many attempts since to ‘replicate’ Lovaas, none entirely successful. Though there is no doubt that some children do well in ABA, the 47% best outcome remains elusive. The one and only scientific study, Smith Groen Wynn 2000, – randomised assignment and controlled, produced a mere 13% best outcome with no differences on language acquisition and social parameters between experimental and control groups[6]. One attempted replication, Sallows and Graupner 2005 turned up with the control group outperforming the experimental group, which suggests that the type of intervention may be a random factor [7]. A small review of Eaves and Ho, which I note is also not among the references concluded that the actual intervention may not be related to the outcome, which seems counter intuitive but is supported by a very recent study done in the UK. Howlin et al 2007, also found no difference in outcomes between an intensive ABA program and nursery provision (basically a mix of services). This study is significant but is not among the references. The general conclusion of the science, such as it is, is not that ABA per se is so effective or that it is indisputably more effective than anything else out there. Even behaviour analysts are pointing to the ‘bi-modal’ distribution of results, which really says that all the good results usually belong to a handful of participants and it literally is the ‘luck of the draw’ (if one was used at all) which children went where. Science, in the long run generally gets it right.

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) [8], 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 [9] 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. Dr Stephen Shore, autistic and musicologist has done the same. Strange in this day and age but it does not appear that the authors consulted with anyone on the autistic spectrum even though there is no lack of candidates ready, willing and able to shed a bit of light on the management of ASD, which for them is exceedingly relevant to their lives. There is also no dearth of reference points to the very significant differences between tantrum throwing and meltdowns due to sensory overload. The sole mention of it in this paper is to a conflation of occupational therapy and the failure of sensory integration therapy.

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 ABA therapy without qualification, how do they get around the very visible lack of an evidence base for ABA intervention where apraxia is a significant problem? The lack of any grounding in the life sciences is also of concern in other aspects of behavioural intervention.

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, [10] 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. [11] O’Reilly of University College, Dublin concluded that the self injurious behaviour of a developmentally disabled youngster (ear poking), which only ever happened during attacks of otitis media was probably related to escape from ambient noise. [12] The reliance on a fixed range of external factors as the major determinants of behaviour together with ignorance of matters biological can be a recipe for tragedy. The staff of the Judge Rotenburg Centre, a bastion of unreconstructed behaviourism, interpreted the refusal of a non-verbal student to eat as an indication of bad behaviour. As the article in Mother Jones [13] stated:

“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 CAM rates a mention because of the pervasive use of such therapies with ASD children. If the authors’ purpose was primarily educational, why is there not one word or reference to the growing and important literature dealing with autistic perception or learning? The omission points directly to the complaint of the NRC. Interventions are not linked to the broad research literature and they should be. What point is there in teaching eye contact if for that particular autistic child the face is such an intimidating landscape that he or she can look at you or understand what you are saying, but not both simultaneously? [14] Surely paediatricians might take some interest in the research pointing out that as many as one third of autistic children may be falsely labelled mentally retarded and it all depends on what test is used. [15]. This branch of research is not yet extensive, but there are some very good basic references that could be suggested to interested AAP members. “Autistic Learning” a book chapter and comprehensive review of research which should inform the helping professions more widely, is available online at:

http://psych.wisc.edu/lang/pdf/Dawson_AutisticLearning.pdf

‘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.

REFERENCES

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

2. Volkmar FR, Lord C, Bailey A, Schultz RT, Klin A., Autism and pervasive developmental disorders, J Child Psychol Psychiatry. 2004 Jan;45(1):135-70.

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

4. Shea, Victoria (2004), "A perspective on the research literature related to early intensive behavioral intervention (Lovaas) for young children with autism", Autism 8 (4): 349-367

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. Atlanta, GA

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.

13. Jennifer Gonnerman, School of Shock, Mother Jones August 20, 2007.

http://www.motherjones.com/news/feature/2007/09/school_of_shock_index.html

14. Dalton, K.M., Nacewicz, B.M., Johnstone, T., Schaefer, H.S., Gernsbacher, A., Goldsmith H.H., Alexander, A.L. & Davidson, R.J. Gaze-fixation and the neural circuitry of face processing in autism. (2005). Nature Neuroscience, 8, 519-526.

15. Michelle Dawson, Isabelle Soulières, Morton Ann Gernsbacher, Laurent Mottron (2007) The Level and Nature of Autistic Intelligence Psychological Science 18 (8), 657–662.