Research

Over the past 11 1/2 years, I have ventured down countless avenues in regards to epilepsy and autism. The process of researching anything can be overwhelming at first, but when you get to the root of an issue or idea, there are usually extensive references to back up specific claims or concepts of any given article. This is particularly true when it comes to medical research. Some of the full length articles I have read over the years have lengthy references, averaging 50-100 individual references per article, noting past writings and/or studies that were documented, that relate to a particular statement within the article at hand. Buried within the references are a plethora of additional research (depending on what you are actually researching), often leading me down a further rabbit hole, but on occasion, guiding me to further either reinforce or dismiss an idea that might be relevant to my family.

However, internet-based research is a minefield, full of hidden agendas, inaccuracies, and just blatant falsehoods. Let's just take the idea of zinc, which coincidentally, I have been researching exclusively over the past month. In the past, I've read a considerable amount regarding homocystinuria, Neuronal Ceroid Lipofuscinosis (NCL), pyroluria (which is a long future post in itself), the history of schizophrenia, and a host of other pyridoxine specific disorders, some of which directly involve dietary minerals, particularly zinc, manganese, and magnesium. If you read this article, albeit which is very brief and not all that informative, there is a reference (reference number 4) to the statement:

'Zinc deficiency has been found in infants with autism spectrum disorders. Some patients with autism may have immune dysfunction, an zinc is sometimes given to enhance immunity. However, the Autism Treatment Network's supplements study found that many children may be receiving too much zinc'. (4).

Granted the title, 'An Unofficial Guide to Autism Supplements' sums it up fairly well, thus my skepticism goggles were fully focused. It was the last sentence that caught my attention, since it went against everything that I had read in the last few weeks prior. If you follow through to the actual referenced article, which is located here, (it can be found in a host of other locations) you will note that it says absolutely nothing about the Autism Treatment Network, nor anything about children receiving too much zinc. In fact, of the 50+ articles and abstracts I have read in regards to zinc deficiency, I have not read anywhere that zinc toxicity was an issue, in any of the controlled research thus far, in fact, the exact opposite has been documented. There is actually considerable research linking zinc deficiency with Autism Spectrum Disorders (ASD) and some studies going so far as to establish an association of the severity of symptoms with the extent of zinc deficiency. These inaccurate and misleading references are rampant on the internet. The reference actually belongs after the first statement, here:

'Zinc deficiency has been found in infants with autism spectrum disorders. (4). Some patients with autism may have immune dysfunction, an zinc is sometimes given to enhance immunity. However, the Autism Treatment Network's supplements study found that many children may be receiving too much zinc'.

Whether it was an unintentional mistake or not, everything after the first statement is opinion. Personally speaking, opinion to me, often translates to mean 'agenda'. I tend to work backward and revert to the origin of the root article, which in this case, is hosted by the Pharmacy Times, which may or may not have a professional or financial interest in investing in OTC remedies. Taking another step backward, I looked at what the actual Autism Treatment Network (ATN) actually is, since it is obvious that the ATN is not part of the actual article referenced. As it turns out, the ATN has a long history of merging with other support/advocacy groups, including Autism Speaks, now falling under the umbrella entitled the National Autism Network, which on the surface, appeared to be just a provider directory for autism therapies.

Having never heard of ATN and its statement regarding zinc, I decided to try and understand who this group is. They appear to operating out of an unassuming corporate office park in Cary, North Carolina, offering an extensive national database of medical and therapy providers, which is certainly valuable for families new to the world of autism. After some additional digging, I was able to find some of the ATN's research on bio-medical therapies within their website, which makes no reference to 'children receiving too much zinc'. Going a step further and looking at their actual references, most of the articles are opinion-based links, with very few actual clinical references to anything. I wasn't impressed with the quality of references from the ATN and the fact that nowhere on their website is their any mention of their original statement as quoted on the Pharmacy Times, there isn't a whole lot of credibility with such groups, in my book.

My point is with all of this is when doing research, I always try to follow this simple protocol.

1. Do your homework. Follow up on links and references. Read multiple articles and find multiple perspectives, both positive and negative. Research anything that you might think is relative, but always follow up on the references. Articles tend to make broad-reaching generalizations, that often are unsubstantiated or simply not true. There are lots of opinions and you must carefully navigate which is which.

2. Be skeptical. I try to keep an open mind with everything I research, but at the same time, cautious of being overly optimistic or biased in my reading. For nearly every point, there is a counterpoint that is equally reputable. I try not to let emotion guide my reading and I always am skeptical in the sense that I feel that many articles are simply biased - some of what you read has a hidden agenda. I'm not sitting around wearing a tin foil hat, but rather being conscious of where the information and data is coming from.

3. Take a break. I read something almost every evening, which often leads to researching a particular subject to the point where I feel like I can form my own perspective on it. Investing so much time often gives me tunnel vision, without thinking of the counter to a particular subject - the best remedy I have found is to step away, get some perspective, and come back to it in a few hours, a few days, or a few weeks.

4. Bookmark, log, and/or archive your findings. I have been using this system for the past 5-6 years and it has been extremely helpful, as I tend to go back and look at certain articles I have read in the past that relate to what I am currently interested in.

If you want to read all about zinc and its connection to autism spectrum disorders, I would recommend the following articles:

Zinc and Its Importance for Human Health
Analysis of Copper and Zinc Plasma Concentrations in ASD
Infantile Zinc Deficiency: Association with ASD