Saturday, August 23, 2014

Will Adult Autism Care Issues Be Considered During #nbvotes 2014?

New Brunswick election 2014 is underway with the NDP, Liberal, Green and PANB parties going all out to replace the PC party.  Party signs are proliferating around the city of Fredericton. The Liberal Party kicked off big time in Fredericton with special guest federal Liberal leader Justin Trudeau and provincial leader Brian Gallant. It was a lively, well organized event and the optimism was clear. I enjoyed my brief chat with the charming greeting ladies pictured outside the Fredericton Ex building. In a general sense I enjoy elections, I firmly believe, despite the many legitimate bases for criticism that they are the foundation of our amazing freedoms that our soldiers have fought for and died to preserve.

There are many important issues in this election as in many others.  It will be easy for our political party leaders to overlook the needs of adults with complex severe autism disorders for whom group homes are not always an option.  In the past our "inclusive", "community" oriented province has sent severely autistic adults out of the province or to the psychiatric hospital on our northern border with Quebec far from most families in the much more heavily populated south of New Brunswick.  Maybe, just maybe, beginning with this election, our leaders will accept the reality that NB includes severely autistic adults in need of permanent residential care in a facility with professionally trained staff and oversight, a facility located in Fredericton close to the autism expertise  developed at the Stan Cassidy Centre and the UNB-CEL Autism Intervention program.

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.