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.