Letter to National Autism Center

Here is a copy of the letter sent to the National Autism Center in the US from the Paediatric OT Council of BC. The letter was written by the OT council of BC after they were notified of my blog on "Science: Failing our Children" written on May 21st. If you would like the complete letter, with references attached, please let me know: dmastromatteo@shaw.ca



Dear Colleagues,

Re: National Autism Center’s National Standards Report – the facts behind the ‘science’ from an occupational therapy perspective

The Paediatric OT Council of BC (POTC) represents occupational therapists working with children and youth throughout British Columbia. We are the members of the POTC Autism Advisory Committee and, as such, advise on issues relevant to occupational therapists working with children with autism spectrum disorder (ASD) in the province.

We received an email message recently from a mother of a child with autism who attended a presentation given by Dr. Glen Davies of the Able Developmental Clinic in Vancouver. Dr. Davies summarized the findings of the NAC’s National Standards Report on evidence-based interventions for ASD and also commented on occupational therapy and sensory integration. Please refer to the mother’s comprehensive and informative blog link for more information: http://sensationalchildren.blogspot.com. Consequently, we reviewed the 2009 National Standards Report (NSR) released by the National Autism Center (NAC) and believe the conclusion regarding sensory integration misrepresents existing research, which clearly validates sensory-based interventions.

We would like to comment on the following NSR conclusion:
“Sensory integration is an unestablished treatment for which there is little or no evidence in the scientific literature that allows us to draw firm conclusions about the effectiveness of the intervention with individuals with ASD. There is no reason to assume this treatment is effective. Further, there is no way to rule out the possibility this treatment is ineffective or harmful”.

Reports, comments or opinions about occupational therapy interventions by other professionals present a professional dilemma for occupational therapists who “Strive to provide evidence-based, family-centred practice…. and feel conflicted when they observe improved quality of life for children and their families after an intervention yet are unable to offer definitive research to support their practice”(Parham 2007). Ethical communication between professions would dictate that if one profession has concerns about another, these concerns are best managed at their respective regulatory college levels. To our knowledge, there were no attempts by the National Autism Center to clarify their concerns regarding the efficacy of occupational therapy treatments for children with Autism prior to dissemination of the National Standards Report.

We would like to take this opportunity to provide information regarding the extensive research which supports occupational therapy interventions for children with Autism.

Sensory integration research goes back to the 1960’s and prior to publication of the NSR (2009) several retrospective studies had already concluded the outcomes of sensory integration intervention were inconclusive (Daems 1994, Miller 2003). Occupational therapy ‘experts’ in sensory integration theory and practice were concerned that these findings did not support the clinical evidence and determined to figure out why. They reviewed the methodological challenges, selection of outcome measures and whether the interventions were implemented according to the fundamental underlying principles of sensory integration.

The paper “Fidelity in Sensory Integration Intervention Research” published in 2007 provided some useful insights into the underlying problems with the earlier evidence used to measure the effectiveness of sensory integration intervention. The researchers specifically addressed the issue of ‘fidelity’ and identified core treatment components that comprise the intervention. They then reviewed 70 early papers purported to demonstrate the use of sensory integration, in the light of this new information. Analysis determined that only one intervention met the ‘fidelity requirements’ of being sensory integration intervention and 69 studies were discarded. The paper concluded with a warning – “Researchers should carefully consider the extent to which interventions demonstrate fidelity when identifying studies to include in reviews of sensory integration outcomes and when making inferences regarding the effectiveness of this intervention” (Parham 2007).

When trying to make sense of the evidence about health and health care with regard to what treatments help children with autism, it is important to be mindful of the following:
• Truth and values: who carries out, funds and benefits from the research?
• Defining the research problem: What is the problem? How can it be defined differently and would that produce different answers? Who benefits from this definition and who loses?
• What counts: Do we use numbers or stories? Which numbers? Whose stories? Do we ask why or how? Or simply how much? What information is missing?
• Authority and credibility: Who are the ‘experts’ in the research? Who or what organization has produced the evidence? What interests or influences may affect how this evidence is produced or shared?
• Does the evidence really matter? How does the evidence inform health care decisions and health policy? Are there other factors at work? Does the evidence address the needs of particular families and the circumstances of their lives?” (Canadian Women’s Health Network 2005)

Occupational therapists in their review of the NSR uncovered some fundamental problems with regard to the way evidence about sensory integration intervention was gathered and evaluated by the NAC. First, the NAC neglected to include any occupational therapists on their team of over 160 ‘experts’ from diverse professions. Then, in their literature search they neglected to include the paper on the fidelity in sensory integration research although it occurred within their search time line. Without OT consultation and inclusion of the fidelity study, the NAC team of ‘experts’ drew their conclusion based on 7 intervention studies none of which meet the ‘fidelity requirements’ for being sensory integration intervention. Further, the appropriate supplementary information that might assist readers in their decision making regarding this treatment was not provided (Appendix one). In other words, the NAC reviewers made the very error Parham and her colleagues warned about. This lack of concern by an international organization for professional consultation and accurate scientific reporting is astonishing and the published conclusion misleading.

These facts undermine the credibility of the NSR, the authority of the NAC and raise questions about truth and values and who benefits from this research review? The report appears to be extremely comprehensive and thorough but the final conclusions represent a rather narrow view on effective, evidence-based autism interventions which do not address the wide range of symptoms present in the disorder. The report also implies ‘authority’ which allows other professionals to comment on treatment interventions about which they may actually know very little. What is most alarming is that the report will likely be used to guide funding for autism through insurance companies and government agencies. Finally, professionals and parents of children with ASD will assume that all conclusions formulated by the NAC are accurate and truthful.

It is apparent that occupational therapy and sensory integration intervention are obviously not well understood by other professionals as they are frequently presented as being one and the same. They are not. Sensory integration intervention is only one of many treatment methods which occupational therapists use to guide clinical reasoning and meet the individual needs of a person who has autism. It is like Hanen is to an SLP, Cognitive Behaviour Therapy (CBT) is to a psychologist or Applied Behavioural Analysis (ABA) is to a behaviour consultant or interventionist. Occupational therapists are unique in their ability to analyze activity and behaviour from many different constructs in order to determine barriers to performance and direct appropriate interventions. This makes OT’s important members of the diagnostic and intervention team. To imply that sensory integration is all occupational therapists do seriously negates the wealth and breadth of our professional role with the ASD population.

Individuals with autism present with a wide range of performance limitations that can be severe and persistent. They constitute a heterogeneous group where each person has a unique profile and they require access to a wide range of interventions to address these individual and unique limitations (Dionne 2011). Occupational therapists are one of the key professionals to provide services to these individuals with their knowledge of sensory processing, sensory-motor performance, social/behavioural performance, self care and participation in play (Case-Smith 2007). Parents and other professionals can be very confident that ‘evidence-based practice’ is a core value for the profession of occupational therapy and that occupational therapy is well aligned with the philosophical and conceptual basis of the interventions for ASD that have been researched and have demonstrated effectiveness (Case-Smith 2008, Arbesman 2009). Research in occupational therapy outcomes, as related specifically to ASD, is an emerging field with new papers being published regularly.

Uninformed opinions regarding the efficacy of occupational therapy with autism are being made with increasing frequency. Usually this occurs during discussion about interdisciplinary treatment approaches and results in the promotion of one treatment approach at the expense of occupational therapy. No other profession appears to be targeted in such a manner.

Occupational Therapists believe that ‘best practice’ in working with persons with ASD involves an interdisciplinary approach where each professional brings their expertise to the table to meet the needs identified by each and every family; where intervention is a collaborative effort based on the latest research evidence, clinical judgment and individual needs.

We urge our colleagues to contact a local occupational therapist who is reliably knowledgeable about the role of occupational therapy in the field of ASD. Current research information may be found in Appendix Two. Other resources include the Sensory Processing Disorder Foundation (http://www.spdfoundation.net or http:/www.spdcanda.org.)

We request that the National Autism Center consider an immediate retraction and amendment of the National Standards Report with regard to the Sensory Integrative Package and fulfill your stated aims by providing accurate supplementary information to assist readers in their decision-making regarding this treatment.

Respectfully,
POTC Autism Advisory Committee