Thursday, August 14, 2014

More Science in Support of ABA Effectiveness for Autistic Children


The US Agency for Healthcare Research & Quality Review Therapies for Children  With Autism Spectrum Disorder: Behavioral Interventions Update has found a dramatic increase  in the scientific evidence backing the effectiveness of intensive behavioral therapy for children affected by autism. The report some 519 pages in length has been reviewed on the Autism Speaks Science Digest site:

"We are finding more solid evidence, based on higher quality studies, that these early intensive behavioral interventions can be effective for young children on the autism spectrum, especially related to their cognitive and language skills,” says lead author Amy Weitlauf, a clinical psychologist with the Vanderbilt [University] Kennedy Center. (The Vanderbilt Kennedy Center is part of the Autism Speaks Autism Treatment Network.)

Dr. Weitlauf and her co-authors are members of the Vanderbilt Evidence-based Practice Center. It's one of twelve federally funded centers conducting scientific reviews to help patients, clinicians and policy makers make informed decisions about healthcare services.

Their review updates a 2011 report that noted gaps in the research needed to assure the effectiveness of often-costly autism therapy programs. In particular, they examine new scientific findings on the effectiveness of intensive early intervention therapies based on applied behavioral analysis (ABA). Their update includes 65 studies published since the 2011 report.

“This review speaks to the clear consensus on intensive early intervention,” comments developmental pediatrician Paul Wang, Autism Speaks senior vice president for medical research. “Kids with autism clearly benefit from these behavioral interventions, and we need to make sure that they’re provided.
“In the long run,” Dr. Wang adds, “intensive early intervention saves money by promoting greater independence later in life. Autism Speaks continues to sponsor research to show how we can further enhance intervention methods and their cost-benefits.” 

Lorri Unumb, Autism Speaks vice president for state government affairs, notes the importance of the new report for advocacy efforts. “The new Vanderbilt study further reinforces the overwhelming record of evidence supporting the efficacy of Applied Behavior Analysis in treating children with autism,” she says. “In study after study, ABA continues to be confirmed as a beneficial intervention that can vastly improve the lives of kids with autism. And with each study, insurance industry claims that ABA is somehow ‘experimental’ become ever more untenable.”"

Here  in Canada parents have argued for more than 15 years for government provided ABA treatment for autism based on the studies reviewed at different points in time by the US Surgeon General, the MADSEC (Maine) Autism Task Force Report, and the American Academy of Pediatrics. Now recent studies published in the Canadian Medical Association Journal (January 2014) and this review by the US Agency for Healthcare Research & Quality Research further strengthen the evidence basis of ABA as an effective autism treatment.  None of this is likely to  matter to strident anti-ABA Advocates but for government service providers and parents of autistic children this further strengthening of the evidence basis in support of ABA for autistic children will provide yet more guidance in how to help autistic children.

Saturday, August 09, 2014

UPDATE: Globe and Mail Health Columnist André Picard Abandons Evidence Based Autism Treatment Principle, Embraces SON-RISE PROGRAM®


André Picard is a Globe and Mail public health reporter with the Glboe and Mail which is promoting the Son-Rise Program®, a purported autism program with almost no evidence based support of its effectiveness, a program which is not even mentioned in the recent CMAJ (2014) article or the (2007) AAP (reaffirmed 2010) autism reports reviewing the evidence, or lack thereof in support of various autism treatments.  The 2000 MADSEC (Maine) review did expressly assess Son-Rise Program® as described in my initial commentary on this somewhat startling embrace by the Globe and Mail of a weak to non evidence based autism "treatment".  By tweeting his papers opinion that "Science has yet to catch up with this particular therapy. But for some families, it's breaking through the walls of autism" Picard appears to have condoned his papers rejection of evidence based autism treatment in favor of emotionally appealing anecdotal heart tugging stories which prompt emotion to trump evidence and analysis. 

Picard is entitled to his own opinions. Unfortunately his opinions reach and influence many Canadian parents whose autistic children may be exposed to the risks of lost development time if  their parents abandon evidence based autism treatment for the as yet still weakly evidence supported Son-Rise Program®.

Thursday, August 07, 2014

Time To Divide The Heterogeneous DSM-5 Autism Spectrum Disorder and Free the Invisible, Severely Autistic From Oppression


Associated Morbidity and Mortality


Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs,8991 and available data suggest that mortality is increased as well (standardized mortality ratio: 2.4–2.6).92,93 The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy.

The above information from the American Academy of Pediatrics, Management of Children With Autism Spectrum Disorders,  autism policy statement 2007, reaffirmed 2010, makes it clear that the challenges facing those with severe autism and their families includes substantially higher costs and increased mortality.  Some  very, very high functioning autistic persons like Ari Ne'eman, John Elder Robison and others make careers lecturing government, media, professionals, even institutions of higher learning, about autism and dictating how society should see and deal with all autistic persons, including the severely autistic with whom they have so very, very little in common. The result is a lack of attention to, and provision of services to, meet the  short and long term needs of those who suffer from,  severe autism disorders.

 For many high functioning  autism self advocates, having received an Autism Spectrum Disorder diagnosis, they no longer consider autism to be a disorder.  They are reinforced in their irrational denial by mainstream media who love to publish autism feel good stories. References to Einstein, Van Gogh and every historical talent and genius you can think of routinely include mentions of suspicions that they were autsitic although they lived before autism was recognized to exist.  Charities seeking to maintain their charitable tax status and otherwise ingratiate themselves to governments and donors like to emphasize the "positive" and in some cases actually attack parents who speak honestly about their own children's severe autism disorders.  In all these cases those like my son who live on the severe end of the autism spectrum of disorders are invisible.  For the invisible severely autistic  the only times they are even mentioned in the media is when tragedy strikes, when a child wanders from home to nearby swimming pools, lakes or busy roadways.  Otherwise, they might as well be literally invisible. Their needs will not be addressed. Even mention of their severity, even the concept of severity will remain verboten.

One necessary first step is to reverse the serious DSM5 mistake of combining, with no evidence basis, the various pervasive developmental disorders into 1 Autism Spectrum Disorder so heterogeneous in nature it makes the new ASD a useful tool for continuing the historical trend  of   "autism" studies of high functioning autistic subjects that at the same time exclude the severely autistic.  The new ASD  also gives legitimacy to the very, very high functioning career autistics who, with the mainstream media and money seeking charities, suppress knowledge of severe autism realities and with that suppression contribute to societal oppression, by ignorance, of the severely autistic.

I will speak out and condemn, as long as I am alive, the suppression of the truth about the realities faced by those with severe autism disorders and their  families.  It may not make a difference in the upside down, distorted world of  autism "awareness" but I will try  anyway.  I owe it to my severely autistic son to do so.

Tuesday, August 05, 2014

Autism Canada, With Some Help From the Globe and Mail, Promotes "Weak Evidence" Based Son-Rise Program®




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:


"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).

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 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.