There is a listing on the US National institute of Health website about currently recruiting studies that focus on different aspects of autism. I only scanned the list briefly but found many topics of interest as they directly relate to information I have read previously or, more importantly, they relate to some of the interventions we are trying with K.
Many involve investigating the usefulness of drug therapies, but interspersed are investigations that, if performed correctly, will address much of the anecdotal evidence that is related time and again in parental testimonials. Some have been through scientific investigation before, but it is good to see them being revisited, like the impact of GFCF diets. We have always had the opinion that this has had the single biggest impact on K and his success.
That, I know, is a fairly significant statement and to have my intent fully understood needs to be considered in a broader context. I think after my above statement it is also important to mention that this is in no way meant to detract from all the hard work that K has done with his exceptional team of therapy providers. I in no way mean to take away from, or minimize all that they have done for him. They have been instrumental in his progress and we would be lost without them and K would undoubtedly not be thriving without their unwavering commitment to him.
The salient point I feel, and I will not comment for Tracy, is that had we not removed gluten and dairy from K’s diet he would not have been able to get as much out of all his therapy sessions. The GFCF diet has primed him for the success that he has been experiencing and allowed him to maximize all his interventions and, in the process, better tap into his potential. In reality, I realize there is no way to know this for sure and this is just our impression, but it is not founded on whim but on our experience with K before and after modifying his diet.
This last point, I think, is key and is all too often dismissed by those who think the only useful, or factual, information is that which is found in scientific studies. Scientific research is very important and I am not trying to say otherwise (I have an undergraduate degree in the biological sciences so skepticism, research, and the scientific method are all things I subscribe to) but personal anecdotal evidence should not be discredited based on its lack of “hard” data. Research deals in statistical analysis and just because something is not found to be significant in the statistical sense does not directly translate into a lack of significance in the real world sense. There will always be those that are outliers and for these people, the results can be dramatic. My emphasis is meant as a reminder that the numbers represent people and that very pertinent fact should not be forgotten. If a given treatment can have beneficial results for some, even if that number is not statistically significant, that point should be mentioned and not minimized. What may be statistically insignificant for many can be profoundly significant for a few, and then there are the gradations between the extremes that can also go overlooked. As I have mentioned before in other posts, it is important to keep your options, and your minds, open when it comes to looking for successful ways to help your autistic child.
Shortly after moving him to the GFCF diet we noticed a significant change in his behaviour and the appearance of previously absent behaviours as well as a more interactive, “present” child who appeared to be “with us” more than in the past. I will not delve into the theories behind why the GFCF diet works as there is copious material to be found with very simple research but it truly was as if a “fog” had been lifted from K’s mental processes and awareness. I think that it was this new found clear-headedness that allowed him to absorb and process what was going on in his intervention sessions. His therapists did not have to work as hard to engage him, though this can still be problematic at times just like with any typical child, and they could focus on learning and not on trying to get his attention and therefore the sessions were, overall, more productive.
One other point that I would like to make is that in pursuing any dietary interventions it is fundamentally important to ensure your child is receiving adequate nutrition. Shortly after starting K’s GFCF diet we kept a very detailed log of everything he consumed in a day for 2 weeks. We then met with a dietician and discussed his food journal and his diet and made sure that he was receiving adequate nutrition. I cannot stress this enough as it is critical to ensure you are not replacing one problem with another, potentially more harmful, one.
We have some research information in our documents repository that has looked at the “outcomes” of dietary modification as an intervention in autism and many are contrary to my point but they are a good source of information and provide a counterpoint to my personal perspective. As always, comments are welcome.
Some links to our repository that contain information on GFCF diet:
Review of GFCF diet in Autism
Another review of GFCF diet in Autism
Diet and child behaviour problems
Registered dietician’s insights on dietary treatments in autism
Intestinal pathophysiology in autism
Here is some information I have shared from our google reader page:
GFCF diet on google reader
Another media article
I also found some very useful discussion in the comments section of a post on another blog I read. It makes some other very good points regarding diet and children’s behaviour that are very relevant, but I have been verbose enough already. Therefore this should not be considered merely in the context of autism but really in the broader scope of general health.
Related posts:
- Autism and Diet: Revisited I was reading a blog that looks at scientific research and autism and came across these 2 posts regarding autism and the GFCF diet. In...
- Immunocal Presentation I recently attended an information session regarding a nutraceutical product and some of the research behind it and its benefits. I must say that initially...
- What, we’re not crazy? At last a brief glimmer of hope that families that follow the GFCF diet may not be foolishly wasting their time and money. I found...
- Anti-seizure Medication I have posted before about K’s seizures and what we have been through to rule out some of the potential causes of this aberrant brain...
- Keep your options, and your mind, open As someone with a pretty good grounding in science, if you had asked me in the not too distant past to comment on some of...


3 people responded to " Research vs Parental Experience. "
I found your blog on google and read a few of your other posts. I just added you to my Google News Reader. Keep up the good work. Look forward to reading more from you in the future.
Tina Russell
favorited this one, guy
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