Saturday, March 24, 2007


A couple of weeks ago, the April issue of Discover published an article, now available on-line, called “Autism: It’s Not Just in the Head.” In it, Jill Neimark examines the relatively recent emphasis on researching the link between genetics and environment, and the implications for new treatment modalities.
In one way, the field seems like a free-for-all, staggeringly disordered because it is littered with so many possibilities. But one can distill a few revolutionary insights. First, autism may not be rigidly determined but instead may be related to common gene variants, called polymorphisms, that may be derailed by environmental triggers. Second, affected genes may disturb fundamental pathways in the body and lead to chronic inflammation across the brain, immune system, and digestive system. Third, inflammation is treatable.
Ms. Neimark does not mention the “v” word in her article, with environmental factors being discussed more generally. That’s probably how it should be, for we won’t begin to understand the causative impact of particular environmental insults until we understand the processes by which those insults trigger adverse effects. It seems self-evident, however, that injecting toxins and metals directly into the body is just as dangerous, if not more so, than airborne exposure. That is, it would seem self-evident as long as you’re not one of those people who believe that ethylmercury is “the good kind of mercury.”

In any event, the Discover article is not deep science, and doesn’t blaze any new trails. It is, however, very readable and understandable. Although it give an idea as to the direction new biomedical treatments are heading, no preferences or recommendations are made. There is an implicit recognition that each autistic child presents a unique clinical picture. And for those of us who sometimes get giddy with excitement over new possibilities, there is a dose of realism:
Not surprisingly, there has been criticism of the biomedical approach, especially when doctors promise too much or parents hope too desperately for recovery. As [Dr. Jill] James notes, one mother killed herself after seeking every possible treatment for her autistic daughter to no avail, causing a furor among parents with autistic children.

Some children just do not get better, no matter what the intervention. Elizabeth Mumper is CEO of a group called Advocates for Children and former director of pediatric education at the Lynchburg Family Practice Program affiliated with the University of Virginia. Of the 2,000 children in her practice, about 400 have autism spectrum disorders. She describes one boy whom “I have not helped despite my best efforts. He is 17 and still nonverbal and has horrible, erosive esophagitis in spite of the fact that he works very closely with a gastroenterologist. He has to sleep standing up and leaning over his dresser because of the pain, and he has very idiosyncratic reactions to medications. And even though he is nonverbal, he can type anything to me. He’s alpha-smart. The horror is that he’s trapped in a body that doesn’t work.”

“I hate the term ‘full recovery,’” James adds, “because of this false hope. Some children do lose the diagnosis, but that’s rare. I don’t think that should be out there as a goal. We need to accept [the kids] and love them for who they are—because they are lovable. They’re quirky.”
Yes, my quirky son is lovable, and my acceptance and love for him is unconditional. That being said, I wouldn’t call my hope “false;” it is quite real. I am realistic. “Cure” is not a result; it is a process.

Speaking of “cure” as a result rather than a process is a sure way to start arguments. Every time a video hits the net showing a recovered kid, there’s always a flood of comments as to how that child isn’t recovered because he or she does this or doesn’t do that. It gets to the point of the absurd (“omigod, that kid’s playing with Star Wars toys”). Oddly enough, the ones who go to such lengths to debunk stories of recovery are those who accuse us of wanting our child to be “normal,” meaning just like every other child. Well, just maybe there are parents who understand the relative nature of recovery and who understand that quirkiness ⎯ unlike full-blown autism ⎯ is not disabling.

I’m not sure where the process will lead us. But I am convinced that my son’s life is better ⎯ and will be better ⎯ because we have engaged in the process of cure.


Anonymous Anonymous said...

Nicely stated, Wade. It IS a process, to be sure. And nobody has all the answers. But we do see definite relief from gastro distress... followed by cognitive gains... and gains in life skills. And as we've been treating high testosterone and detoxing... we see further gains.

Who wouldn't want that?

Sadly, these small degrees of recovery, which I directly attribute to the "process of cure" as you put it... do not constitute a CURE, per se, but then we have not nearly depleted her heavy metals, or fully healed her gut and addressed her autoimmune issues.

We recently added another "tweak" to her cure process... an antiinflammatory for her inflamed gut. Within days we had our first potty training breakthrough... whereby my daughter demonstrated that she wanted to be taken to the toilet... then proceeded to use the toilet (without prompts for a very healthy #2). I was blown away!

Apparently, once we've reduced her inflammation, she seems to be MUCH MORE AWARE of what her bowels are telling her... making potty training POSSIBLE.

I still get letters through from parents who very passionately tell me that we're crazy... that autism is NOT a disease, but an alternative state of being.

well, I tell ya. That attitude is what mainstream pediatricians take when confronted with a tantruming, angry autistic child... where they don't even EXAMINE their guts for distress! That attitude is harming the children who are more severely affected and DO EXHIBIT symptoms of disease beyond the classic, clinical manifestations of autism.

I highly doubt that many in the neurodiverse camp have to deal with chronic diarrhea and severe gastrointestinal distress. Their children's medical issues are subtle enough to ignore. So they won't be diagnosed... much less treated.


3/26/07, 11:40 AM  
Blogger Wade Rankin said...

Thanks for the comment, Erik. Unfortunately, the process is rarely quick, and it can be a long road requiring patience and dedication. You have a very lucky daughter.

3/26/07, 6:06 PM  
Blogger Heidi said...

Hi, we have just started the process of bringing our son back. The more I research, the more encouraged I am to find a growing number of parents who don't quite buy the official line of autism as a life-long, debilitating, inherited disability. We started him on gluten free diet just over a month ago and have seen a definite change already, and it cannot be attributed to anything else. His chronic diarrhoea is gone, and he is now potty trained - it took just two weeks after we spent months getting nowhere. His eye contact is better, and he is generally more 'with it'.

3/28/07, 3:50 AM  
Anonymous Anonymous said...

Wow, Heidi... if you achieved potty training and solid stools with the diet alone... you've got a lot to look forward to!


3/28/07, 1:50 PM  

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