Recent statements by current Autism Society Canada President Kathleen Provost to a Montreal Gazette reporter have me asking again what the ASC actually does to help autistic Canadians? When the ASC can not even tell the Canadian public in a forthright manner what numerous American state and professional agencies have told us for years about the evidence basis supporting the effectiveness of Applied Behavior Analysis in treating autism it becomes difficult to understand the ASC's raison d'être .
For parents of autistic children there are few things more important than trying to help their autistic children overcome, to the fullest extent possible, the deficits and challenges that accompany their autistic disorders - self injurious behavior, dangerous behavior such as wandering into traffic or getting lost, lack of communication and language abilities and intellectual deficits. These are all serious challenges facing many autistic Canadians. But they do not receive accurate information about the state of autism treatment from the ASC.
Autism Society Canada Statements on Autism Treatment
The Autism Society Canada has made incomplete, inaccurate and even misleading statements about the effectiveness of autism treatments. It does so by rejecting an evidence based approach to treating autism. It states that there are many approaches to treating autism without informing the public forthrightly that only Applied Behavior Analysis is supported by a large body of evidence supporting its effectiveness.
In More than one approach to autism the Autism Society Canada has failed, once again, to help Canadians evaluate the evidence supporting ABA as an autism intervention and, as the article title illustrates, helps mislead Canadians into thinking that all autism interventions are created equal. That no single autism intervention is better than any other. Nothing could be further from the truth. In that article Kathleen Provost, ASC President, is reported and quoted as follows:
Kathleen Provost of Autism Society Canada noted a lack of consensus among experts about the best ways of dealing with the condition.
"What we have the most researcher and information on is behaviour therapy," Provost said.
The society does not endorse any method.
"Some of it is new and we don't have enough information," Provost said. "We leave it up to the parents to make decisions."
There is no unanimity amongst "experts" about the best ways of dealing with autism, or any other issue, in any other field, for that matter. Most noticeable in opposing ABA as an autism intervention is the Montreal neuroscience community which dominates the Canadian Institutes for Health Research. ( Anti-ABA advocate, Dr Laurent Mottron, of the Psychiatry Department of the Hopital Riviere-Des-Prairies was a key note speaker at the CIHR's November 2007 Autism Symposium which itself had to be rescheduled to ensure that known ABA advocates would be excluded from representing any of the provincial autism "communities" ). There is, however, a clear consensus amongst experts about the best ways of dealing with autism and that consensus clearly points to ABA as the most effective evidence based intervention for dealing with autism.
To properly understand that consensus it is important to understand a point not often mentioned by the Autism Society Canada, or the CIHR for that matter, the concept of evidence based-medicine :
" Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients. The practice of evidence-based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research. By individual clinical expertise we mean the proficiency and judgement that individual clinicians acquire through clinical experience and clinical practice. Increased expertise is reflected in many ways, but especially in more effective and efficient diagnosis and in the more thoughtful identification and compassionate use of individual patients' predicaments, rights, and preferences in making clinical decisi ons about their care. By best available external clinical evidence we mean clinically relevant research, often from the basic sciences of medicine, but especially from patient centred clinical research into the accuracy and precision of diagnostic tests (including the clinical examination), the power of prognostic markers, and the efficacy and safety of therapeutic, rehabilitative, and preventive regimens. External clinical evidence both invalidates previously accepted diagnostic tests and treatments and replaces them with new ones that are more powerful, more accurate, more efficacious, and safer.
Good doctors use both individual clinical expertise and the best available external evidence, and neither alone is enough. Without clinical expertise, practice risks becoming tyrannised by evidence, for even excellent external evidence may be inapplicabl e to or inappropriate for an individual patient. Without current best evidence, practice risks becoming rapidly out of date, to the detriment of patients. "
Center for Evidence-Based Medicine (CEBM) and the British Medical Journal, 13th January 1996 (BMJ 1996; 312: 71-2)
The CEBM also refers readers to the Wikipedia entry on Evidence Based-Medicine:
Evidence-based medicine (EBM) aims to apply evidence gained from the scientific method to certain parts of medical practice. It seeks to assess the quality of evidence relevant to the risks and benefits of treatments (including lack of treatment). According to the Centre for Evidence-Based Medicine, "Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients."
EBM recognizes that many aspects of medical care depend on individual factors such as quality and value-of-life judgments, which are only partially subject to scientific methods. EBM, however, seeks to clarify those parts of medical practice that are in principle subject to scientific methods and to apply these methods to ensure the best prediction of outcomes in medical treatment, even as debate about which outcomes are desirable continues.
Practicing evidence-based medicine requires clinical expertise, but also expertise in retrieving, interpreting, and applying the results of scientific studies and in communicating the risks and benefits of different courses of action to patients.
Qualification of evidence
Evidence-based medicine categorizes different types of clinical evidence and ranks them according to the strength of their freedom from the various biases that beset medical research. For example, the strongest evidence for therapeutic interventions is provided by systematic review of randomized, double-blind, placebo-controlled trials involving a homogeneous patient population and medical condition. In contrast, patient testimonials, case reports, and even expert opinion have little value as proof because of the placebo effect, the biases inherent in observation and reporting of cases, difficulties in ascertaining who is an expert, and more.
Systems to stratify evidence by quality have been developed, such as this one by the U.S. Preventive Services Task Force for ranking evidence about the effectiveness of treatments or screening:
* Level I: Evidence obtained from at least one properly designed randomized controlled trial.
* Level II-1: Evidence obtained from well-designed controlled trials without randomization.
* Level II-2: Evidence obtained from well-designed cohort or case-control analytic studies, preferably from more than one center or research group.
* Level II-3: Evidence obtained from multiple time series with or without the intervention. Dramatic results in uncontrolled trials might also be regarded as this type of evidence.
* Level III: Opinions of respected authorities, based on clinical experience, descriptive studies, or reports of expert committees.
The UK National Health Service uses a similar system with categories labeled A, B, C, and D. The above Levels are only appropriate for treatment or interventions; different types of research are required for assessing diagnostic accuracy or natural history and prognosis, and hence different "levels" are required. For example, the Oxford Centre for Evidence-based Medicine suggests levels of evidence (LOE) according to the study designs and critical appraisal of prevention, diagnosis, prognosis, therapy, and harm studies:
* Level A: Consistent Randomised Controlled Clinical Trial, cohort study, all or none (see note below),clinical decision rule validated in different populations.
* Level B: Consistent Retrospective Cohort, Exploratory Cohort, Ecological Study, Outcomes Research, case-control study; or extrapolations from level A studies.
* Level C: Case-series study or extrapolations from level B studies.
* Level D: Expert opinion without explicit critical appraisal, or based on physiology, bench research or first principles.
Evidence Based-Medicine and Autism Interventions
Autism has been plagued by a host of "alternative" treatments and interventions including some as whacky as "swimming with dolphins"; the notion that somehow swimming in close proximity to these intelligent but still wild and powerful sea creatures somehow has therapeutic value for autistic children. Facilitated communication in which a therapist aids non-verbal autistic children in communicating through a variety of assisted communication technologies has caused actual harm as seen very recently in Oakland County Michigan where a family was torn apart when the parents of autistic children were wrongully charged with abuse based on a therapists Facilitated Communication interpretations of the autistic daughter's responses. The interpretations were exposed as nonsense at trial when the same process elicited answers such as these to questions posed to the daughter:
Q: What color is your sweater?
Q: What are you holding in your hand right now?
A: I AM 14
In Children with autism deserve evidence-based intervention, The evidence for behavioural therapy , MJA 2003; 178 (9): 424-425, Jennifer J Couper and Amanda J Sampson, reviewed some of the evidence in support of the efficacy of behavioral interventions for autism. The authors stressed the importance of an evidence based approach to autism interventions:
While ineffective therapies may be harmless, they waste parents' money and the child's valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child's outcome.
Couper and Sampson reviewed the evidence at that time (2003) in relation to behavioral treatment for autism:
the early intervention that has been subjected to the most rigorous assessment is behavioural intervention. There is now definite evidence that behavioural intervention improves cognitive, communication, adaptive and social skills in young children with autism. In 1987, Lovaas showed apparent recovery, persisting into adolescence, in nine of 19 young children who received an intensive home-based intervention based on applied behavioural analysis, a scientific method of reinforcing adaptive and reducing maladaptive behaviours.5,6 Subsequent studies also showed that behavioural intervention caused significant, albeit somewhat lesser, gains.7-11 This has modified the orthodox view that autism is always a severe, lifelong disability. Criticisms of the adequacy of the design and power of these studies are being addressed by the multisite Lovaas replication Early Autism Project. The first US site has released data (Wisconsin Early Autism Project).12 Again, after three to four years of intensive applied behavioural analysis intervention, about half the preschool children with autism acquired near-normal functioning in language, performance IQ and adaptability. Ninety-two per cent of intervention children acquired some language. Control children who received special education showed no gains in IQ or adaptability.12
Why is intensive applied behavioural analysis intervention more effective than special education for children with autism? This can not be simply explained by the intensity of these programs (30–40 hours per week). Children in a school-based Scandinavian study who received behavioural intervention gained an average of 25 language IQ points in the first year of the intervention, with improvements in performance IQ, communication and adaptability. On all scores, they surpassed control children who received special education according to best practice for autism, and the same intensity, duration and supervision of therapy.13
Autism Treatment Consensus - God Bless America
Contrary to Kathleen Provost's, and the ASC's, statements, there IS a consensus on the best way to "deal with" autism. That consensus has been clearly articulated in a number of reviews of autism treatment effectiveness by responsible, respected American authorities. Thankfully the internet ensures that Canadian parents are not dependent on a sham Autism Symposium, the self interested dictates of some members of the Montreal neuroscience community, or the misleading statements of timid ASC representatives. We can read for ourselves what more credible authorities have concluded.
The American Academy of Pediatrics - Management of Children with Autism Spectrum Disorders 2007
The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have
been significantly better than those of children in control groups.31–40
No other intervention reviewed by the AAP approached ABA in the quantity or the quality of evidence in support of its effectiveness as an ABA intervention.
New York State Department of Health - Clinical Practice Guidelines - Report of the Recommendations Autism/Pervasive Developmental Disorders 2005 (rev ed)
Intensive Behavioral and Educational Intervention Programs
Intensive behavioral and educational intervention programs involve systematic use of behavioral teaching techniques and intervention procedures, intensive direct instruction by the therapist, and extensive parent training and support.
* Articles screened for this topic: The literature search found 232 articles that reported using behavioral and educational approaches in children with autism as well as 68 articles from a comprehensive review article on single-subject design studies.
* Articles meeting criteria for evidence: 5
Several studies done by independent groups of researchers have evaluated the use of intensive behavioral intervention programs for young children with autism. The four studies that met criteria for evidence about efficacy all compared groups of young children with autism who received either an intensive behavioral intervention, a comparison intervention, or no intervention. In all four of the studies reviewed, groups that received the intensive behavioral intervention showed significant functional improvements compared to the control groups.
While none of the four studies used random assignment of subjects to groups, there did not appear to be any evidence of important bias in group assignment. Within each study, the groups receiving different interventions had equivalent subject characteristics. Furthermore, all studies showed similar and consistent results.
Since intensive behavioral programs appear to be effective in young children with autism, it is recommended that principles of applied behavior analysis and behavioral intervention strategies be included as an important element of any intervention program.
It is recommended that intensive behavioral programs include a minimum of 20 hours per week of direct instruction by the therapist. The precise number of hours of behavioral intervention may vary depending on a variety of child and family characteristics. Considerations include age, severity of autistic symptoms, rate of progress, other health considerations, tolerance of the child for the intervention, and family participation. It is recommended that the number of hours be periodically reviewed and revised when necessary. Monitoring of progress may lead to a conclusion that hours need to be increased or decreased.
It is recommended that all professionals and paraprofessionals providing therapy to the child as part of an intensive behavioral program receive regular supervision from a qualified professional.
It is important that parents be included as integral members of the intervention team. It is recommended that parents be trained in behavioral techniques and be encouraged to provide additional hours of instruction to the child. It is also recommended that training of parents in behavioral methods for interacting with their child be extensive and ongoing, and that it include regular consultation with the primary therapist.
Although some of the intensive behavioral intervention programs that were effective included use of physical aversives (such as a slap on the thigh), other programs reported good outcomes without the use of any physical aversives. The panel does not recommend the use of physical aversives, especially given the small physical size and vulnerability of young children in the age group from birth to age three years.
None of the other interventions reviewed by the NYSDOH approached ABA as an evidence based effective intervention for autism.
Report of the MADSEC (Maine Administrators of Services for Children with Disabilities) Task Force Report 2000 (rev ed)
Over the past 30 years, several thousand published research studies have documented the effectiveness of ABA across a wide range of:
• populations (children and adults with mental illness, developmental disabilities and learning disorders)
• interventionists (parents, teachers and staff)
• settings (schools, homes, institutions, group homes, hospitals and business offices), and
• behaviors (language; social, academic, leisure and functional life skills; aggression, selfinjury,
oppositional and stereotyped behaviors)
The effectiveness of ABA-based interventions with persons with autism is well documented, with current research replicating already-proven methods and further developing the field.
Documentation of the efficacy of ABA-based interventions with persons with autism emerged in the 1960s, with comprehensive evaluations beginning in the early 1970s. Hingtgen & Bryson (1972) reviewed over 400 research articles pertinent to the field of autism that were published between 1964 and 1970. They concluded that behaviorally-based interventions demonstrated the most consistent results. In a follow-up study, DeMeyer, Hingtgen & Jackson (1981) reviewed over 1,100 additional studies that appeared in the 1970s. They examined studies that included behaviorally-based interventions as well as interventions based upon a wide range of theoretical foundations. Following a comprehensive review of these studies, DeMeyer, Hingtgen & Jackson (1982) concluded “. . .the overwhelming evidence strongly suggest that the treatment of choice for maximal expansion of the autistic child’s behavioral repertoire is a systematic behavioral education program, involving as many child contact hours as possible, and using therapists (including parents) who have been trained in the behavioral techniques” (p.435).
Support of the consistent effectiveness and broad-based application of ABA methods with persons with autism is found in hundreds of additional published reports.
Baglio, Benavidiz, Compton, et al (1996) reviewed 251 studies from 1980 to 1995 that reported on the efficacy of behaviorally-based interventions with persons with autism. Baglio, et al (1996) concluded that since 1980, research on behavioral treatment of autistic children has become increasingly sophisticated and encompassing, and that interventions based upon ABA have consistentlyresulted in positive behavioral outcomes. In their review, categories of target behaviors included aberrant behaviors (ie self injury, aggression), language (ie receptive and expressive skills, augmentative communication), daily living skills (self-care, domestic skills), community living skills (vocational, public transportation and shopping skills), academics (reading, math, spelling, written language), and social skills (reciprocal social interactions, age-appropriate social skills).
In 1987, Lovaas published his report of research conducted with 38 autistic children using methods of applied behavior analysis 40 hours per week. Treatment occurred in the home and school setting. After the first two years, some of the children in the treatment group were able to enter kindergarten with assistance of only 10 hours of discrete trial training per week, and required only minimal assistance while completing first grade. Others, those who did not progress to independent school functioning early in treatment, continued in 40 hours per week of treatment for up to 6 years. All of the children in the study were re-evaluated between the ages of six and seven by independent evaluators who were blind as to whether the child had been in the treatment or control groups. There were several significant findings:
1) In the treatment group, 47% passed “normal” first grade and scored average or above on IQ tests. Of the control groups, only one child had a normal first grade placement and average IQ.
2) Eight of the remaining children in the treatment group were successful in a language disordered classroom and scored a mean IQ of 70 (range = 56-95). Of the control groups, 18 students were in a language disordered class (mean IQ = 70).
3) Two students in the treatment group were in a class for autistic or retarded children and scored in the profound MR range. By comparison, 21 of the control students were in autistic/MR classes, with a mean IQ of 40.
4) In contrast to the treatment group which showed significant gains in tested IQ, the control groups’ mean IQ did not improve. The mean post-treatment IQ was 83.3 for the treatment group, while only 53.3 for the control groups.
In 1993, McEachin, et al investigated the nine students who achieved the best
outcomes in the 1987 Lovaas study. After a thorough evaluation of adaptive functioning, IQ and personality conducted by professionals blind as to the child’s treatment status, evaluators could not distinguish treatment subjects from those who were not. Subsequent to the work of Lovaas and his associates, a number of investigators have addressed outcomes from intensive intervention programs for children with autism.
For example, the May Institute reported outcomes on 14 children with autism who received 15 - 20 hours of discrete trial training (Anderson, et al, 1987). While results were not as striking as those reported by Lovaas, significant gains were reported which exceeded those obtained in more traditional treatment paradigms. Similarly, Sheinkopf and Siegel (1998) have recently reported on interventions based upon discrete trial training which resulted in significant gains in the treated children’s’ IQ, as well as a reduction in the symptoms of autism. It should be noted that subjects in the May and Sheinkopf and Siegel studies were given a far less intense program than those of the Lovaas study, which may have implications regarding the impact of intensity on the effectiveness of treatment.
There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA methods to improve and sustain socially significant behaviors in every domain, in individuals with autism. Importantly, results reported include “meaningful” outcomes such as increased social skills, communication skills academic performance, and overall cognitive functioning.
These reflect clinically-significant quality of life improvements. While studies varied as to the magnitude of gains, all have demonstrated long term retention of gains made.
Mental Health: A Report of the US Surgeon General 1999
Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior. A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues (Lovaas, 1987; McEachin et al., 1993). Nineteen children with autism were treated intensively with behavior therapy for 2 years and compared with two control groups. Followup of the experimental group in first grade, in late childhood, and in adolescence found that nearly half the experimental group but almost none of the children in the matched control group were able to participate in regular schooling. Up to this point, a number of other research groups have provided at least a partial replication of the Lovaas model (see Rogers, 1998).
Consensus and Fully Informed Choices
The above are some of the leading statements by credible agencies that have reviewed the evidence bases in support of various autism interventions. No other intervention has anywhere near the same evidence in support of its efficacy as documented by these credible American agencies. Contrary to the unsubstantiated statement by Kathleen Provost there is in fact a clear consensus that ABA is the treatment of choice for autism.
If Kathleen Provost, and the Autism Society Canada, wish to exercise their information role responsibly they should make this clear to the public. Parents of newly diagnosed autistic children should be told that they might be gambling their child's precious development time, and their future development potential by forgoing ABA in favor of "feel good" unproven alternatives. In failing to do so they are failing autistic children in Canada.
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