Forbes recently published an article on the usefulness of a gluten-free diet in Autism.
Although gluten is not ‘the’ culprit when it comes to Autism (because as we all know, Autism is a multi-factorial and complex condition) it is irrefutable that at least 80% of parents in my clinical experience expressed marked improvements in their autistic child’s condition when going gluten-free.
I remember attending an Autism medical conference held by a University in Australia, QLD, maybe 6 or 8 years ago. I thought it would be interesting and was excited to learn how the medical profession may have changed its stance on Autism, acknowledging that many children can and do improve with certain dietary and biochemical interventions. I was left very disappointed when one of the key-note speakers, a very well-respected medical practitioner in the Autism community, was jeered by her peers for her views on a gluten-free diet and how it benefited kids with Autism.
Interestingly enough, there were many parents in the audience as well who started to argue with the doctors in the audience who attacked this particular speaker, telling them that they have seen marked differences in their kids once going gluten-free and even more differences going casein-free as well. Unfortunately these doctors were unimpressed by what they were hearing because it wasn’t scientifically proven, even though at this time there were many published papers on the benefits of gluten-free diets in the treatment of Autism and the mechanisms on why this worked. They just never bothered to read these papers.
This leaves us with a few things to consider.
There can be multiple well-designed studies on a topic, but if a ‘closed’ practitioner doesn’t read these, then it doesn’t exist for them. They will remain uninterested in learning more and exploring new possibilities, and instead spend energy on defending their stance no matter how outdated it may be.
It also questions the emphasis we sometimes put on scientific research at the expense of anecdotal evidence. Scientific research is only noteworthy if a study is well designed and conducted without prejudice. As we know this often depends on who is funding the research and their agenda.
The point is that it is erronous to take a scientific study above the real-life experiences of parents when it comes to Autism. If a parent tells a practitioner that their child’s demeanor changes when he / she ‘eats’ or ‘not eats’ gluten or dairy (or any other food for that matter), then you have to take note. If a parent tells a practitioner that their child changed within a couple of days of receiving a particular vaccine, then it would be negligent not to take that into consideration regardless of personal convictions.
As much as I may be crucified for these comments, I’m simply stating that practitioners have to take note of all information.
This article is not about my beliefs. This article is me batting for the parents. As a parent first, I know my children. But as a practitioner I also know that many studies fail to include variables and are becoming more selective in their reporting. Practitioners run the risk of telling parents to be quiet as they don’t know anything and that they are wrong, because ‘science’ does not support what they are observing.
As practitioners we are taught to ‘listen’ to our clients, hear their story, and take note of their skin tone, colour, eyes, nails, hair, reflexes, etc. This art is becoming lost as test results and scientific research takes over. The most important thing a practitioner can do is to listen to their client and the parents of these children.
Practitioners should always remain open to learning more and never assume that they know everything. This is especially important in this day and age where new information is constant and keeping up with it all becomes more and more difficult.
Parents have an expectation that practitioners, whether traditional or not, stay up to date with current research and also understand its relevance. Not just blindly accept what they are being told by journalists, researchers, pharmaceutical or supplement companies using poorly-conducted studies with a potential financial benefit in mind.
This brings us to the Gluten-Free study. I want to acknowledge Julie Matthews here who is a certified nutrition consultant and who I’ve admired for many years in her work with Autism. Instead of repeating her words, I will provide the link to her rebuttal to the article as I cannot state it any better than she does:
The Forbes article is a classic example of contradictory statements based on selective facts from a poorly-designed research study to draw a conclusion without taking into account all the complexities of an individual condition such as Autism. It detracts and creates confusion and uncertainty amongst parents of children living with Autism without acknowledging the many testimonies of parents whose real-life experiences essentially contradict the conclusion of this study.
As a parent and practitioner, my truth, formed by personal feedback from hundreds of parents over two decades, evidenced by records, is that a true gluten and casein-free diet is absolutely beneficial in most cases of Autism.
Maybe it is time that someone conducts a study by collecting data from practitioners all over the world who work with children with Autism to obtain more useful information that can really help these kids instead of taking away hope.
Any researchers out there up for the task?