The Times Colonist has an article on yesterday's Autism Canada conference and its focus on treating autism as a whole body medical illness. Speakers included Dr. Derrick MacFabe of the UWO team which recently released its findings on proprionic acid and Dr. Martha Herbert of the Harvard Medical School. Much of the article though focused on Dr. Wendy Edwards, a Southern Ontario pediatrician whose son was diagnosed with autism at age 3. The message at the conference as summarized by the Times Colonist is that autism is a full body illness and is not limited to the brain.
Dr. Edwards advocates the use of biomedical treatments in addition to applied behaviour analysis in treating autism. She recommends diets aimed at eliminating toxins and reducing digestive tract inflammation and describes some elements of such diets including melatonin, antioxidants and the GF-CF free diet. Dr. Edwards acknowledges that her biomedical recommendations are not supported by scientific study but questions whether parents should wait while the studies are done:
"Why not do what we feel is working while we wait for the study to prove or disprove it? If we're not out there doing all these things and telling the researchers 'What about this?' the research won't get done."
There are good arguments against the use of experimental treatments for autism or any other medical condition. Financial resources are not unlimited, special diets can often add expense to a family budget already stretched tight particularly if the family is already strapped by the expense of paying for ABA, which although not curing autism, is an evidence based effective health and education intervention. Experimental treatments can also waste time and morale both of which are valuable to a family trying to help their child. Further, some seemingly innocuous interventions might in fact have unforeseen and possibly harmful effects on a child.
Still, if a family can afford the interventions, consults with physicians and does not get their hopes too high, it is difficult to see why they shouldn't try interventions backed by anecdotal evidence of other parents some of whom like Dr. Edwards are also pediatricians themselves. Especially if they do not forgo evidence based interventions in order to try experimental approaches. The UWO Proprionic Acid study grew out of parental observations. Although all parents are not also medical professionals like Dr. Edwards, they are the front line observers of their children's condition.
While I have nothing against testing treatments very unlikely to do harm, such as a diet consulted with a dietician, I feel uncomfortable with this quote,
ReplyDelete"If we're not out there doing all these things and telling the researchers 'What about this?' the research won't get done."
For centuries, medical researchers has searched and found cures, treatments and vaccines for a number of very serious conditions, all without parents "doing all these things", with very few exceptions (Lady Mary Montagu). So, if medical researchers don't want to test what Dr. Edwards suggests, they probably have their reasons. While every medical researcher would want the glory of finding a good treatment for autism, nobody wants to test a hypothesis without scientifically coherent reasoning and supported by anecdotes only, just to find that the treatment doesn't work.
No one has suggested that parental input is necessary to all autism research. By the same token, parental experience and observation should not be ignored as a basis for potential research.
ReplyDeleteDr. Derrick MacFabe's research is incredible. Visit www.autismcanada.org to read his peer reviewed journal article in Behavioural Brain Research.
ReplyDeleteDr. MacFabe’s team released some important and intriguing findings, pointing to a factor that may be a primary culprit in causing autism (at least in a subset of ASD individuals).
The research team found that the compound known as propionic acid, when administered to the brains of experimental rats, produces unique behaviours and brain changes similar to human autism. The animals also show brain electrical changes resembling some types of human epilepsy, which often co-exists with autism. Repeated exposure to propionic acid increases the severity and duration of the symptoms, suggesting that it may have permanent effects on brain and behavior. As well, microscopic examination of the rodents’ brains shows evidence of inflammation closely resembling a recent Johns Hopkins University study examining brains of autistic patients.
The research group is working with the Canadian-American Autism Research Consortium, headed by Dr. Jeanette Holden of Queens University, to examine genetic and environmental factors in thousands of individuals with autism and their families. They are also collaborating with Dr. Martha Herbert to further examine their findings in human patients.
Cool stuff!