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

SCIENCE: FAILING OUR CHILDREN

By: Domenica Mastromatteo MSc, BEng, MOM

I attended a presentation on The National Standards Report conclusions from the National Autism Center’s exhaustive review of scientific evidence behind each type of treatment by Glen Davies, Ph.D., R.Psych. Director, ABLE Developmental Clinic. I was very excited to hear him talk, but left disappointed.

Dr. Davies is said to be the most respected child psychologist within the autism community, not only because of the work he performs directly with children, but also because of his efforts toward protecting their rights. He talked openly about the conclusions of the National Standards Report; I did not agree will much of his perspective.

The National Autism Center (nationalautismcenter.org) is a not-for-profit center for autism in the United States committed to evidence-based practice. NAC claims that (www.nationalautismcenter.org/nsp/) “As the number of children diagnosed with ASD continues to skyrocket, so do the number of treatment options. Families, educators, and service providers must sift through a massive amount of confusing and often conflicting information about the myriad treatments available. This reality makes treatment selection complicated. The best way to determine if a particular treatment is effective is to look at research that has been conducted.”

In September 2009 the NAC published their exhaustive review of the treatment literature for children with autism spectrum disorder. This review relied on the expertise of nearly 100 respected researchers in the field of autism, reviewed more than 7000 studies including over 1000 for detailed analysis.

According to the NAC (www.nationalautismcenter.org/nsp/), ”the primary goal of the National Standards Project is to provide critical information about which treatments have been shown to be effective for individuals with ASD. The project examined and quantified the level of research supporting interventions that target the core characteristics of ASD in children, adolescents, and young adults (below 22 years of age) on the autism spectrum. This groundbreaking report covers a broad range of applied treatments and identifies the level of scientific evidence available for each. It includes 775 research studies – the largest number of studies ever reviewed. For the first time, families can find specific information about the age groups, treatment targets, and diagnostic populations to which these treatments have been applied. The National Standards Report will serve as a single, authoritative source of guidance for parents, caregivers, educators, and service providers as they make informed treatment decisions. We are confident that these findings and recommendations will change lives and give hope and direction to people whose lives are touched by autism.”

(Feel free to skip the next few paragraphs summarizing the NSP and continue with my conclusions in the last 3 paragraphs.)

The National Standards Project rated studies on pre-established criteria of scientific merit and described the level of evidence for each of the common and not so common treatments for ASD, classifying them into the categories of: Established Treatments, Emerging Treatments and Unestablished Treatments. The following general guidelines were used to interpret each of the categories (visit www.nationalautismcenter.org/nsp/ for more information):

◖ Established. Sufficient evidence is available to confidently determine that a treatment produces beneficial treatment effects for individuals on the autism spectrum. That is, these treatments are established as effective.
◖ Emerging. Although one or more studies suggest that a treatment produces beneficial treatment effects for individuals with ASD, additional high quality studies must consistently show this outcome before we can draw firm conclusions about treatment effectiveness.
◖ Unestablished. There is little or no evidence to allow us to draw firm conclusions about treatment effectiveness with individuals with ASD. Additional research may show the treatment to be effective, ineffective, or harmful.
◖ Ineffective/Harmful. Sufficient evidence is available to determine that a treatment is ineffective or harmful for individuals on the autism spectrum.

There are many different skills or behaviors that are targeted for improvement when treating individuals on the autism spectrum. The following is a list of treatment targets used for the NSP. Some of the treatment targets seek to improve skills by increasing developmentally appropriate skills. Other treatment targets are intended to improve life functioning by decreasing behaviors. The 14 treatment targets were further separated into two categories: skills increased and behaviors decreased. (Visit www.nationalautismcenter.org/nsp/ for more information):

Skills Increased
◗ Academic.
◗ Communication.
◗ Higher Cognitive Functions.
◗ Interpersonal
◗ Learning Readiness
◗ Motor Skills.
◗ Personal Responsibility.
◗ Placement
◗ Play.
◗ Self-Regulation.

Behaviors Decreased
◗ General Symptoms
◗ Problem Behaviors.
◗ Restricted, Repetitive, Nonfunctional Patterns of Behavior, Interests, or Activ- ity (RRN): stereotypic and compulsive behaviors, inappropriate speech, or restricted interest,etc.
◗ Sensory or Emotional Regulation (SER).

I do not want to summarize the entire report, but will list the treatments identified as Established and those identified as Unestablished by the NSP. (Visit www.nationalautismcenter.org/nsp/ for more information).

Established Treatments are those for which several well-controlled studies have shown the intervention to produce beneficial effects. There is compelling scientific evidence to show these treatments are effective; however, even among Established Treatments, universal improvements cannot be expected to occur for all individuals on the autism spectrum.

The following interventions are Established Treatments:
◖ Antecedent Package
◖ Behavioral Package
◖ Comprehensive Behavioral Treatment for Young Children
◖ Joint Attention Intervention
◖ Modeling
◖ Naturalistic Teaching Strategies
◖ Peer Training Package
◖ Pivotal Response Treatment
◖ Schedules
◖ Self-management
◖ Story-based Intervention Package

Unestablished Treatments are those for which there is little or no evidence in the scientific literature that allows us to draw firm conclusions about the effectiveness of these interventions with individuals with ASD. There is no reason to assume these treatments are effective. Further, there is no way to rule out the possibility these treatments are ineffective or harmful.

The following treatments have been identified as falling into the Unestablished level of evidence:
◖ Academic Interventions
◖ Auditory Integration Training
◖ Facilitated Communication
◖ Gluten- and Casein-Free Diet
◖ Sensory Integrative Package

Although the study clearly outlines the criteria used to evaluate treatments, I feel they left very little room for common sense. Unfortunately, I believe that the report is just another report that families, educators, and service providers must sift through. To make my point, consider the findings for the Gluten- and Casein-Free Diet treatment. The report concludes that gluten-and-casein free diets as a treatment is ineffective. Does this mean that the relief (or alleviation of symptoms) that patients obtain from is irrelevant? That’s a little cruel. We all know that when we feel better, we perform better, but how do you prove that scientifically? The National Autism Center should have considered that when writing this report. Dr. Davies should have considered this when evaluated the report. Many children that could benefit from gluten-and-casein free diets will not because it “didn’t make the list of “Established Treatments”.

Unfortunately, Dr. Davies also talked a lot about the ineffectiveness of Sensory Integration and did not have encouraging information about occupational therapy (OT). This is another area that offended me. My son does not have autism, but he does have sensory processing disorder (with DCD). As I understand, all children with autism also have SPD. Without Occupational therapy with a sensory integrative component my son would not be a functioning/happy child. He was barely functioning before he started his OT treatments. But the exhaustive review done for the National Standards report concluded, “there is no reason to assume these treatments (SI) are effective. Further, there is no way to rule out the possibility these treatments are ineffective or harmful.”

The treatment needs to fit the child and it is our job as parents, educators, and service providers to sift through the massive amount of confusing and often conflicting information about the myriad treatments available. Yes, treatment selection is complicated and I don’t agree with a report claiming that the best way to determine if a particular treatment is effective is to look at the research that has been conducted. The “research” and scientific data obtained on treatments is limited in its capacity to “tell the truth”. There are a lot of limitations to scientific research, lots of assumptions made and real life just doesn’t fit into that nice little box that can easily be evaluated by scientists. I was an academic, a research assistant for years, I know how hard it is follow the proper “standards”. Unless we can be honest about the many limitations in scientific research, papers should not be written, distributed, and reviewed for the general public. That is when science becomes a huge disservice to all of us. My conclusion regarding the national standards report is not that there are many treatments that “fail”, but that this time, science has failed us.

NOTICE OF ANNUAL AND SPECIAL GENERAL MEETING

Society for Healthy Sensory Processing Development

4787 Hoskins Road
North Vancouver BC V7K 2R3


NOTICE OF ANNUAL AND SPECIAL GENERAL MEETING

Notice is hereby given that the annual and special general meeting of the members of the Society for Healthy Sensory Processing Development (the “Society”) will be held on Saturday May 28, 2011 at 4787 Hoskins Road, North Vancouver, BC, at 4:00 pm, Vancouver time, for the following purposes:

1. To elect directors of the Society for the ensuing year.
2. To consider, and, if thought advisable, to pass a special resolution of the Society to amend the by-laws of the Society, as more particularly set out in Schedule A attached hereto.
3. To authorize the directors to act on:
a. Completing a mission statement for the Society
b. Order business cards/address stamp
c. Completing pamphlets describing the society and it’s mission
d. Organize support group
e. Plan an advocacy event in October
4. To act on such matters, including amendments to any of the foregoing, as may properly come before the Meeting or any adjournment thereof.

Dated at North Vancouver, British Columbia, this 21st day of April 2011.


Domenica Mastromatteo, President



SCHEDULE A

SPECIAL RESOLUTION

BE IT RESOLVED AS A SPECIAL RESOLUTION that:

(a) the existing by-laws of the Society be amended by adding the following to Section 10 – 57:

“by email”

to read: “A notice may be given to a member, either personally, by email, or by mail to the member’s registered address.”

NEUFELD PUBLIC ADDRESS

ANXIETY AND OUR CHILDREN:
SURPRISING SOLUTIONS TO A GROWING PROBLEM

Today, 1 in 5 children suffer from moderate to severe anxiety. Gordon Neufeld attended to this problem in his public address in Vancouver, BC on March 4, 2011.

What is Anxiety? Anxiety means “unease: a vague sense of unsafety and is characterized by feelings of apprehension and restlessness. It is basically an activated “alarm system”. Humans develop this system for a reason…nature provides us with this system so we can all function properly. (Note: the fetus has a working alarm system at 6 months in utero.) When a child is “alarmed”, the alarm system is given high priority and all the child’s attention is focused on this “alarm”.

How does this alarm system work? Figure 1: The Alarm System will be used to describe a good working alarm system. The alarm system is “turned on” when the child is “alarmed”. The alarm system is activated leading to Caution. The individual (the child) becomes conscientious, careful, concerned, and cautious. These are attributes of a good working alarm system. If futility is reached (e.g. mom is leaving for work), tears are usually released and this leads to adaptation and the child becomes resilient, resourceful, released, and restful. At this point the alarm system is turned off. The alarm is proven false (the world didn’t end….the child survived) and the alarm is recalibrated.

But if futility is not reached, the child will need courage. Courage isn’t possible without mixed feelings and children are not capable of experiencing mixed feelings until the age of 7 or 8. If a child reaches courage, the child becomes brave (but not foolish), perseveres, goal-oriented, and tempered. A caregiver can help a child cultivate courage by first fanning desires that will answer their fears, and eventually (as the child ages) by helping the child find his/her mixed feelings. For example, a child wants to be in a school play, but is terrified of being on stage. Fan his excitement for participating in the play. Help an older child recognize the mixed feelings of excitement and fear.

The above is a well functioning alarm system. Before discussing the non-functioning alarm system, Neufeld answered the question, what sets off the alarm system? The alarm system is set off when one faces the lack or loss of proximity with what or whom we are attached. You will need to have read or heard of Gordon Neufeld’s book on attachment, Hold On To Your Kids, to understand this. Briefly, we are alarmed by the threat of not being with, not being like, not belonging, not mattering, not being loved, and not being known by the one with whom we are attached.

Gordon Neufeld outlines 6 reasons why anxiety is increasing in our children:
• Unprecedented separation from parents
• Failing to develop deep attachments
• Children are becoming more peer oriented
• Children are becoming more alpha
• Parents are resorting to alarming their children (parents are becoming the source of alarm)
• Separation-based discipline is becoming the norm.

The root of the alarm is the lack or loss of proximity with what or whom we are attached. Unfortunately, Children cannot connect their anxiety with the separation they are facing because our “basic physiology protects us from what makes us feel too bad”. We’re blinded and simply can’t see it. This orphans the alarm and displaces the alarm to what can be seen….reasons are invented, irrational reasons which gives rise to alarming obsessions. This is why the rational fix to anxiety doesn’t work. It doesn’t get rid of the root of the problem.

Anxiety is an alarm without eyes; this gives rise to the dysfunctional alarm system, see Figure 2: The Dysfunctional Alarm System. The alarm system is “turned on” leading to Caution. When the child is blind to the true source of alarm, futility cannot be felt and courage is not reached (because what truly alarms the child cannot be faced). The child is lead toward caution. Without the understanding of the true source of the alarm, irrational obsessions and compulsive behaviours are developed. Anxiety reduction can be obtained by compulsive anxiety-reducing behaviours (e.g. oral activities such as sucking, chewing, nail biting and eating, rhythmic activity and stimulation, contact with transitional objects and physical activity). These behaviours temporarily relieve anxiety and turns off the alarm.

Gordon Neufeld’s suggests anxiety can be addressed by reducing the separation the child is facing. Slow down peer interaction, refrain from separation-based disciplines. Most importantly, bridge any separation that cannot be avoided by focusing on the next connection – until we meet again. Some other strategies are:
• Caregivers need to provide a place of rest and safety. Don’t overwork the alarm system. Don’t scare kids. Accept the alpha role in the child’s life. Accept to work on the relationship; the child needs to know that the caregiver is working on the relationship, so they don’t need to.
• Foster and accepting attitude of anxiety. Don’t battle the symptoms of irrationality. Give children room for their upset. If a child’s compulsion towards anxiety is inappropriate help them find acceptable substitutes for reducing anxiety.
• Bring alarmed children to rest and build resilience by helping to find the tears of futility when appropriate. This will restore and recalibrate the alarm system.
• Cultivate courage first by fanning desires and then by helping to find the mixed feelings when ready.


And what does this all mean for our children with sensory processing disorder? I think our children have very real anxieties caused by their disorder and the root of their anxieties are, maybe, more complicated. Understanding the “alarm system” and applying Neufeld’s suggestions for reducing anxiety can help us navigate our children towards solutions.