Dr. Rémi Quirion
Scientific Director
Institute of Neurosciences, Mental Health and Addiction (INMHA)
Canadian Institutes for Health Research
Dear Dr. Quirion
Re: Autism's Gold Standard Intervention and the National Autism Symposium
I am a parent of an 11 1/2 year old boy with Autism Disorder. He is profoundly autistic. By profoundly I mean that he has limited communication skills and understanding of language and does not appreciate many of the dangers presented by everyday life. He also engages, from time to time, in self injurious behavior. As a distinguished professional in Montreal neuro-research circles you may not place much weight on my assessment of my son's realities even after living with, caring for, and loving him, for 11 1/2 years. To that end let me assure you that my assessment of my son is confirmed by a Pediatric Doctor's (two in fact) and a Psychologist's assessments.
As an outspoken parent advocate on autism issues my name was rejected by your organisation as a New Brunswick community representative at the National Autism Symposium to be held on November 8 and 9. Despite that fact, I ask you to consider, and anyone of the chosen delegates to consider during this symposium, the question of whether there is a Gold Standard for autism interventions at this time. You may not understand that for parents this is a critical question. Parents of autistic children will not be spending a lot of time worrying about the next development in Montreal neuro-research circles over the next few years. We tend to focus on the well being and best interests of our children; on the best ways to enhance their development and life prospects, to make their life better for them. Parents of newly diagnosed autistic children may not understand that there is in fact a Gold Standard intervention for autism, and that time is important in obtaining that intervention for their children.
You may or may not know that several reviewing agencies over the past decade have essentially reached the conclusion that there is, despite the superficial conclusions to the contrary of some otherwise earnest professionals, a gold standard for autism intervention. From Maine to New York to California, to the office of the US Surgeon General to the advisory board of the Association for Science in Autism Treatment to a recent United Kingdom review, all such reviews consistently point to Applied Behavior Analysis as the only effective evidence based autism intervention - to date.
This past week saw two further developments. Most well known are the two reports of the American Academy of Pediatrics. One report recommended early screening for autism. The other report reviewed some interventions. This quote is taken directly from one of those AAP Reports Management of Children With Autism Spectrum Disorders
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
It will not receive the attention of the AAP Reports but the Province of New Scotia also release a report, Autism Treatment Program Getting Positive Results, this week on its ABA based EIBI program :
The interim results of an independent program evaluation conducted by IWK Health Centre Research Services and Dalhousie University indicates that after one year of Early Intensive Behavioural Intervention (EIBI)treatment, virtually all 27 children in the first phase of the program had significantly improved communication skills. According to tests and parental feedback, they also had improved problem-solving skills and reduced behavioural problems.
...
Many of the children were about a year and a half behind in language-development skills when they began EIBI treatment. On average, children gained more than a year's worth of language skills in the first 12 months of treatment.
The National Autism Symposium is designed to be conducted by professional "facilitators" which usually means that open, frank discussion will not take place, that the issues discussed and conclusions reached will be essentially determined in advance of the symposium. On the assumption though that there is still some room for actual candid discussion of research issues of real import to autistic children and their families I ask you to encourage your professional colleagues, and others in attendance, to consider these two recent reports, the numerous other credible reviews of autism intervention research and the hundreds of studies over 5 decades which clearly establish Applied Behavior Analysis as the Gold Standard intervention for autistic children.
Respectfully,
Harold L Doherty
Fredericton NB
cc. Dr. Barbara Beckett
Assistant Director, Ottawa
Well, there is no "gold standard." That much is clear from the science.
ReplyDeleteOK joseph, if YOU say so.
ReplyDeleteDarn that American Academy of Pediatrics and the 5 decades of studies they reference in support of the evidence based efficacy of ABA in treating autism. Darn that MADSEC report 7 years ago saying almost exactly the same thing. Darn the NY state and California reports saying the same thing. Darn that US Surgeon General's Office Report. Darn those reports by the Association for Science in Autism Treatment. Darn the NS Dept of Health report this week on language and other gains by autistic children who received ABA based IEBI.
Darn them all for deceiving us into thinking ABA was an effective evidence based intervention for autism a standard met by no other intervention.
Darn them all and their darn fangled studies over 5 decades.
After all joseph says there is no "gold standard".
Sure joe.