Autism Canada suggests parents of
autistic children should change course and head down a different trail, away
from strong evidence based interventions like Applied Behaviour Analysis,
toward programs with weak evidence base in support of their effectiveness like
the Son-Rise Program®. The Globe and Mail has kindlly provided some support for
this adventure with a less than thorough analysis or assessment of the
respective approaches and treatments or the possible outcomes for autistic
children involved who might lose valuable therapy time during the critical
early intervention period between ages 2 and 5.
As I previously
noted on this site Autism Canada is busy Changing the Course of Autism
from the evidence based approach that parents advocated for across Canada
over the last 15 years to an anything goes approach that encourages parents of
young autistic children to try autism treatments with weak or no evidence
supporting their effectiveness. On July 3, 2014 the Globe and Mail Health
section featured an article with several quotes by Dr. Wendy Edwards and Laurie
Mawlam both of whom are affiliated with Autism Canada and their attempts to
push Canadian parents of autistic children away from seeking evidence based
effective interventions for their children ... Applied Behavior Analysis ... to
programs with weak evidence in support of their effectiveness such as ...
the Son-Rise Program®.
Lee Marshall is the author of the Globe and Mail article
Facing
down autism: The unconventional (and somewhat controversial) therapy that’s led
to recovery and may not be responsible for the article
title which assumes that the controversial therapy ACTUALLY leads to recovery
even though the evidence that recovery results from the program is weak,
anecdotal evidence. The article refers to a 2013 Lancaster University study Promoting
child-initiated social-communication in children with autism: Son-Rise Program
intervention effects a very small study which involved 6 children
none of whom had an intellectual disability. Intellectual disability is a
serious complicating condition affecting from 41-44% (CDC) to 50% (WHO)
of persons with autism disorders.
Dr. Wendy Edwards provides her family's personal, anecdotal evidence of the benefits of the Son-Rise Program®. Doctor or not her family story is still just that .... a family story. Anecdotal evidence, like personal testimonials published promoting Son-Rise, is considered the weakest form of evidence:
Dr. Wendy Edwards provides her family's personal, anecdotal evidence of the benefits of the Son-Rise Program®. Doctor or not her family story is still just that .... a family story. Anecdotal evidence, like personal testimonials published promoting Son-Rise, is considered the weakest form of evidence:
"Social scientists are wary about
the use of stories as evidence for a claim. Anecdotes that are not backed up
with systematic and rigorous comparative data are not trusted. Anecdotes are
the weakest form of evidence, but they are often the most persuasive. Even
scientists can be moved by a telling anecdote that contradicts a mass of
statistical evidence. Anecdotes must always be used with care, precisely
because we are psychologically susceptible to them."
Laurie Mawlam, to her credit does acknowledge the substantial gulf between the evidence in support of Son-Rise compared to ABA although she provides no credible explanation for the lack of evidence in support of the Son-Rise Program®:
"Mawlam of the Autism Canada Foundation said she had a “wonderful” experience using Son-Rise with her son. “While the scientific studies for Son-Rise are nowhere as plentiful as traditional discrete trial [Applied Behavioural Analysis], it doesn’t necessarily mean the treatment is not valid. It may just mean the studies have not been done,” she says."
The fact that Laurie Mawlam had a "wonderful experience" is not evidence of the effectiveness of Son-Rise. Her weak dismissal of the lack studies providing evidence for Son-Rise is very questionable since the program began its development in the 1970's. There was ample time for studies to have been conducted between then and 2000. One of the leading reviews of the evidence basis in support of various autism interventions is the Maine Administrators of Services for Children with Disabilities (MADSEC) Autism Task Force Report (2000). The MADSEC Report reviewed and assessed the evidence basis of the Son-Rise Program®:
"According to Levy (1998), the Son-Rise Program does not guarantee results. The approach is based upon “. . .becoming a student of the child’s world, observing, learning, assisting and supporting the child’s flowering in a loving and non-judgmental environment” (Levy, 1998).
Laurie Mawlam, to her credit does acknowledge the substantial gulf between the evidence in support of Son-Rise compared to ABA although she provides no credible explanation for the lack of evidence in support of the Son-Rise Program®:
"Mawlam of the Autism Canada Foundation said she had a “wonderful” experience using Son-Rise with her son. “While the scientific studies for Son-Rise are nowhere as plentiful as traditional discrete trial [Applied Behavioural Analysis], it doesn’t necessarily mean the treatment is not valid. It may just mean the studies have not been done,” she says."
The fact that Laurie Mawlam had a "wonderful experience" is not evidence of the effectiveness of Son-Rise. Her weak dismissal of the lack studies providing evidence for Son-Rise is very questionable since the program began its development in the 1970's. There was ample time for studies to have been conducted between then and 2000. One of the leading reviews of the evidence basis in support of various autism interventions is the Maine Administrators of Services for Children with Disabilities (MADSEC) Autism Task Force Report (2000). The MADSEC Report reviewed and assessed the evidence basis of the Son-Rise Program®:
"According to Levy (1998), the Son-Rise Program does not guarantee results. The approach is based upon “. . .becoming a student of the child’s world, observing, learning, assisting and supporting the child’s flowering in a loving and non-judgmental environment” (Levy, 1998).
The
Son-Rise Program does not seek to provide the child with information, or to
teach the child to master predetermined skills. Instead, the program views the
child’s current level of performance as being the best that the child can do;
if the child could do better, he would (eg, if the child could follow
instructions, he would). The Son-Rise program emphasizes total acceptance of
the child, and encourages him to become a more motivated and participating
individual (Levy, 1998).
Discussion
There have
been no peer-reviewed, published studies of The Son-Rise Program’s
effectiveness or outcome statistics.
Son Rise:
The Miracle Continues chronicles the experiences of Barry and Samahria Lyte
Kaufman as they created a program to meet the needs of their young son,
diagnosed with autism and an IQ under 30. According the Kaufman (1997), their
son currently has a near genius IQ, and no traces of his original condition.
Conclusions
There have
been no studies of the Son-Rise Program’s effectiveness. Researchers should
consider investigation using research protocols. Professionals
considering Son-Rise should portray the method as without scientific evaluation
of any kind, and should disclose this status to key decision makers influencing
the child’s intervention."
I added the bold underlining for emphasis.
Autism Canada prides itself on being the "PREMIER" source for autism
information in Canada. Its spokespersons, especially medical and other
professionals, should disclose to parents attending their conferences and
reading their web site seeking assistance with their children's autism
disorders the lack of strong scientific evaluation for the Son-Rise program.
Mawlam does not explain why no scientific studies were
done between the 1970's and 2000 to evaluate the Son-Rise program's
effectiveness. By contrast the 2007 American Academy of Pediatrics
publication Management
of Children with Autism Spectrum Disorders,
affirmed 2010, assessed the evidence of effectiveness of ABA:
"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.31–4
The AAP report looked at a number of Developmental
and Relationship intervention models including RDI and DIR but found limited
studies and primarily anecdotal evidence. No specific mention was made of
the Son-Rise program.
A January 2014 article in the Canadian Medical
Association Journal Autism
spectrum disorder: advances in evidence-based practice compared
the evidence base of support for ABA and contrasted it with non ABA autism
interventions (Son-Rise Program again was not specifically mentioned):
"A recent overview of meta-analyses60 found significantly enhanced outcomes associated with early intensive ABA-based treatment (typically for 2–3 yr) in four of five included meta-analyses (effect sizes 0.30 to > 1); these findings have since been bolstered by a sixth meta-analysis.61 Gains appear to be greatest in verbal intelligence quotient (IQ) and language communication domains,62,63 for children with stronger pretreatment skills, if treatment is started earlier,64 and with greater intensity or duration of intervention. 60–62,64 These gains achieved in various domains have been summarized in a recent Cochrane review.63 Although the overall quality of evidence is low, it is the best evidence available. A recent study in Ontario reported predictors of outcome that account for some heterogeneity in treatment response.65
"A recent overview of meta-analyses60 found significantly enhanced outcomes associated with early intensive ABA-based treatment (typically for 2–3 yr) in four of five included meta-analyses (effect sizes 0.30 to > 1); these findings have since been bolstered by a sixth meta-analysis.61 Gains appear to be greatest in verbal intelligence quotient (IQ) and language communication domains,62,63 for children with stronger pretreatment skills, if treatment is started earlier,64 and with greater intensity or duration of intervention. 60–62,64 These gains achieved in various domains have been summarized in a recent Cochrane review.63 Although the overall quality of evidence is low, it is the best evidence available. A recent study in Ontario reported predictors of outcome that account for some heterogeneity in treatment response.65
A recent RCT supported the efficacy of
ABA-based intervention in toddlers by showing improvements in IQ, adaptive
skills and diagnostic classification.37 Models vary, notably by how ABA
principles are implemented, but everyday contexts (e.g., free play v.
“tabletop”) and activities based on the child’s interests (v. therapist’s
agenda) have advantages, including greater generalization of learning.66
Questions remain about which forms and intensities of treatment are most
effective for which children.
Research on non-ABA–based treatments is
sparse and shows limited efficacy.67 Translation of evidence-based intervention
into community practice is being evaluated, including in Canada.68 A key
question is whether effective high-quality programs can be less costly and more
sustainable; the findings from Nova Scotia are promising.38 Studies of the
effectiveness of treatment programs for older children, youth and adults with
ASD are scarce. Benefits have been reported for structured teaching practices,
including ABA based interventions, for a wide range of skill deficits and
maladaptive behaviours.58"
The studies and reviews of the solid basis of
evidence of ABA effectiveness as an autism intervention span several decades
while Son-Rise has almost no evidence in support of its effectiveness.
Laurie Mawlam enjoyed the Son-Rise experience with her autistic child which
says nothing at all about the results for her child. Son-Rise paints its
program in feel good language and testimonials and tries to diminish ABA using
the "robotic" mis-characterizations of ABA.
Fortunately many Canadian parents of autistic children have fought for evidence based autism interventions. It has not been an easy fight and the need to continue that fight persists with a patchwork quilt of autism interventions still existing from province to province. Unfortunately governments and costs are not the only obstacles to obtaining early evidence based autism intervention. Unfortunately there will always be those professionals and parents who abandon evidence based principles and who are of great help to politicians and civil servants looking for excuses to avoid providing effective evidence based ABA interventions for children with autism disorders.
Autism Canada appears to be pulling out all the stops in "Changing the Course" away from evidence based autism programs.
Sometimes "Changing the Course" is not a good thing.
Fortunately many Canadian parents of autistic children have fought for evidence based autism interventions. It has not been an easy fight and the need to continue that fight persists with a patchwork quilt of autism interventions still existing from province to province. Unfortunately governments and costs are not the only obstacles to obtaining early evidence based autism intervention. Unfortunately there will always be those professionals and parents who abandon evidence based principles and who are of great help to politicians and civil servants looking for excuses to avoid providing effective evidence based ABA interventions for children with autism disorders.
Autism Canada appears to be pulling out all the stops in "Changing the Course" away from evidence based autism programs.
Sometimes "Changing the Course" is not a good thing.
