The Million Dollar Question

A while ago, an article was published in the Boston Globe Magazine that described the travels of another family in BiomedLand. The article created quite some debate all over the webosphere, and posting comments by Dr. Deth in response to the Boston Globe Magazine article on one of my discussion boards drew the following question from another parent:

What is most impressive of the reply [Dr. Deth's] is that there is hope that if you can reverse the effects of the mercury exposure then you can reverse the autistic effects. Is this true? If it is then you can have an amazing effect of how autism is treated.

Attached is my response to this:

Oy, of course you HAD to ask the million dollar question. Good for you for not being afraid to ask it. Some believe that autism is mercury poisoning and that yes, once you address the mercury problem, the autism disappears (if you want to know more about this particular philosophy, check out either theGenerationRescue web site (www.generationrescue.org), or the SafeMinds web site (www.SafeMinds.org)). Others believe that autism is just a different neurological wiring which should be accepted and that any thoughts about treatment are a way to 'fix' the person or turn the person into something that goes completely against the person's 'natural state of being'.

Everybody please hold the rotten tomatoes on either side of this debate, as I am just going to express how I look at things.

I personally believe that neither belief gets it right. I believe that it is so infinitely more complicated than that. Hence the puzzle of autism, right?? I personally believe that there is a supgroup of autistic kiddos that have an underlying physical disorder - be it a metabolic disorder, be it immunologic, be it neurobiological, be it a detox disorder, be it brainchemistry, be it a genetic defect in RNA production, be it whatever - that results in the kiddo displaying the more difficult aspects of autism - the tantrums, the rages, the incessive stimming, scripting, smearing of unmentionables, the spaced out kiddos, the self injurous ones, the head banging, the kiddos that are totally withdrawn and shut down and that you just can't seem to reach.
And I especially believe this [the presence of an underlying physical disorder] to be true for that group of kiddos that develop 'normally' (I hate that word) for several years and then something happens, and you see that child that you knew slowly 'disappear'.

I also believe that some of the unique and fascinating characteristics our kiddos display are indeed the result of a different neurological wiring and that that aspect should be cherished, nurtured, respected, and very much encouraged (I live with the 'mad scientist' who needs to figure out in great detail how everything works and who needs to experience 'up close and personal' why it is you can't combine certain aspects of physics).

It's been almost 2 years since my son was 'officially' diagnosed as having an autism spectrum disorder. The 2.5 years or so prior to that were, while sometimes great, frequently hellish as we just didn't know what to do with him (and we have another younger child that is neurotypical for which the same parenting techniques work just fine, so whatever was going on with my older one wasn't the result of inadequate parenting). The past almost 2 years in a way have been just as crazy, as while we now do have a, in my mind rather simplistic and too easy, explanation for why he does what he does ('well, he's autistic'), I cannot find myself be satisfied with that explanation.

I have noticed pronounced differences in my son displaying those more troublesome aspects of what is called autism depending on how well his metabolism works. I have found out through trial and error that gluten, casein, soy, bananas, eggs, nuts, yeast, canola oil, onions and many other foods, as well as artificials colorants, additives, emulsifiers, pesticides etc are literally 'brain poison' for him. I have also discovered that there are pronounced, confirmed by diagnostic testing, deficiencies in my son's abilty to produce certain digestive enzymes, and in his ability to produce and/or retain critical vitamins and minerals and that as I start addressing these deficiencies, remarkable things are starting to happen. And I can go on like that for a while.

For my particular child with autism I have discovered that there is a physical reason for many of what traditional medicine considers 'autistic presentations' (the stimming, the scripting, the no eye contact, the hyperactiveness, the gastrointestinal distress, being zonked out, being intolerant or hypersensitive to pain, sounds, lights, the bladder and bowel control issues, not being able to read or express emotions). I have also discovered that there are 'hardwired-in' neurological reasons for some of the other presentations. And I once again circle back to the 'puzzle of autism'.

I for my particular child (as well as for my NT one with food allergies) have decided to explore the biomedical aspects of what is called 'autism'. You can find a lot of information at the Autism Reseach Institute website, www.autismwebsite.com/ari/index.htm. I honestly admit that the short hand for the biomed protocol, aka DAN protocol where DAN stands for Defeat Autism Now, makes me crinch every time I hear it (as does CAN or Cure Autism Now, by the way or Defeat Autism Yesterday), as I am personally not of the belief thatI am defeating or curing autism in my son. What I am trying to do is to address the underlying PHYSICAL illnesses that this child is suffering from (and yes, my child SUFFERS when I give him those foods I previously mentioned, and no, I am not willing to accept that this is 'because he's autistic'), just like I would with a neurotypical child.

I have found no interest within the traditional medical community to help this child, as all of his symptoms are deemed the result of his 'autism'. I have found great resonance, patience and genuine caring within the biomed community and, more importantly, that all important willingness to see the symptoms that my son displays as separate and distinct from the autism diagnosis. Just like NT kiddos have the 'right' to have a physical disorder or disease that the traditional medical community will then try to 'cure', so does my kiddo with autism. And yes, I have great hope that as I reverse the effects of his particular set of physical disorders that I can reverse those autistic effects that are stopping him from being a happy, healthy, self confident, fulfilled child.

Back to the question, is autism mercury poisoning? I just don't know. I don't think anybody knows for sure, but it is a question that deserves all the attention it is getting right now. All I know that some of our kids have underlying biomed issues that, once you address these, you see the child change. So I firmly believe that for a particular subset of kids, the answer (or 'treatment') lies within the DAN protocol. And I can tell you from experience that there are numerous scientists and MDs within the DAN community that, just like Dr. Deth did in his response to Dr. Sanghavi, can provide a similar well formulated, well researched explanation on what the cause is for autism. And they probably all get part of it right, and many more parts wrong.

The problem I have right now is that they all seem to focus on one particular aspect of what they believe the cause is. I believe that there are many, many causes (or triggers) that cross over into many areas of medical and scientific research. I would love for all parties involved (biomed and traditional, alternative and those that believe 'only meds and ABA will work' to develop a lot more respect and interest in each others view points and work together to find out what is going on.

A girl can dream, can she not?