Autism is Like a Cold

I’ve said it before several months back on this blog. It’s probably my favorite way of describing the term “autism”. Our new favorite doctor actually used the same analogy the first time we were in his office, and I knew we’d get along after that!

Saying someone has “autism” is like saying someone has a cold. There is no one cold, there are numerous viruses, bacterial infections, allergies, inflammatory conditions, etc. that lead you to say someone has a “cold”. Multiple routes to the same itchy, sniffly, stuffy misery (can you tell I really enjoyed my cold this week?) but varying levels of severity of that same misery.

And just like there is no one cold, there is no one autism. I’ve had the privilege to meet several other mothers now, along with their children, and these kids are so completely different…but yet also so the same. Our children have had any number of tests, had more experts than we can fit in a room analyze their every move, been poked and prodded…and the answers are all different, but they’re all the same. Our children have “autism”. This includes the Rainman-esque kid rocking in the corner of the room, this includes children that also have some level of cognitive-deficiency (what some refer to as mental retardation), this includes the gifted savants we often hear about, and this includes our KK…who seems to be bit of an anomaly…I’ll need a separate post to adequately describe “Kellen’s autism”…but then again, I suppose this entire blog describes it…

If you ask the medical/scientific community at large, they will tell you they have no idea how autism actually happens…but the general party line is that it’s an inborn error. They usually like to blame the maternal genes…you know, because it’s always the mom’s fault!

If you ask Jenny McCarthy, she’s 100% sure that autism is caused by vaccines and that it’s completely curable (healable, recoverable?).

If you ask me, well I’d be a crappy politician because I sure like to sit on the fence. Wait, would that make me a good politician? Because I think they’re both wrong…and that they’re both right. Ooooh, maybe I would have been a good politician.

You see, I have the precarious position to belong to both “parties”. I’m a scientist, I need facts and theories, I need experiments, I need answers. But I also fit the definition of the “warrior mom” even if Jenny and I don’t see eye-to-eye on many, many points. And here’s where I’m brutally honest, I am completely focused on Kellen’s autism…what caused it…and what’s fixable. I’ve said before that I hope to pursue an evidence-based medicine/science path with our sample set of 1-Kellen. The path that we are on will not work for everyone, some of you may whole-heartedly disagree with what I may say, what I may do, but it’s our choice. I won’t judge you for yours if you won’t judge me for mine. We all want the same for our children…we want them healthy, we want them happy, and we want them to have the absolute best chance at the life that everyone deserves.

People often ask me what I believe…and I suppose I’m qualified enough to give an opinion, but that’s all it is…so take it as you will. (and forgive me because I’m going to try to make this as un-sciencey as possible) Here are my thoughts on the most commonly implicated causes of autism…

Genetics- Yes, I do believe there’s a genetic component to autism, but it’s well proven by now that there’s no one mutation, not even one gene, not even one chromosome, that’s completely responsible for causing autism. Now multiple mutations have been shown to cause problems in the same biological pathways…different errors causing the same general malfunction. I think it’s the cumulative effect of these small changes that actually cause the symptoms that we see (and why we’re even able to diagnose autism by basic observations as opposed to a laboratory test). Many of these broken metabolic pathways can also be tied back to neurotransmitters, making it highly intriguing science. This is a path that we are pursuing with Kellen. If we can find what’s broken, can we give the body what it needs, what it’s missing? We’re chasing one theory at a time, but my gut tells me that it’s going to take a combination approach to get where we want to be. I’m less focused on the genetics as a diagnostic path and more focused on genetics as a treatment path.

Diet- No, I don’t think what we’re eating is giving our kids autism. I don’t think anything I ate (or didn’t eat) while I was pregnant caused this, I don’t think anything Kellen ate or didn’t eat caused this either. But (here I go on the fence post…) I absolutely believe that diet plays a role in autism. Why? Because I’ve seen it (back to my evidence-based plan). There are various iterations of “autism diets” ranging from the simple to the extreme. Yes, as a society, we generally eat like crap. We could all benefit from a cleaner diet. But these kids, I do in fact believe that some of the same broken pathways I described in the genetics component above cause significant issues in relation to diet. The metabolic and inflammatory pathways that are affected by the mutations cause a significant shift in what can be tolerated in their diet. When you start to look at how things like gluten (wheat) are processed by the body and look biochemically and where it fits in with the mutated/broken pathways, the big picture becomes a little clearer. So does diet cause autism? No. But does diet cause exacerbated symptoms? YES. If you don’t believe me then come over, I’ll give Kellen a cup of milk with a cupcake and let you handle the subsequent carnage. ; )

The Environment…dun-dun-dun- This is a tough one for me. It’s hard to follow my evidence-based plan when I have zero control over this. I guess I plead the 5th on this one with an answer of Maybe? Ultimately it could very well play a significant role…maybe leading to a higher number of spontaneous mutations and an overall increased inflammatory response in the population as a whole (as many have tied it into rises in asthma, allergies, etc. as well). So yes, but because there’s nothing I can do about it, then I don’t dwell on it (you like that non-committal answer?).

Bacteria, Viruses, and Fungi, Oh My!- This is a tough one for me, but it’s in fact a path I’m pursuing professionally. There is absolutely an important microbial component in autism. It’s still a very chicken-or-the-egg concept, but certainly the microbial communities (microbiomes) of these kids are significantly different from their peers. Add in the fact that we have WAY more microbial genes at work in our body than human genes and you can quickly see how the right/wrong group of bugs could help/harm an already volatile environment. I think it’s a fight worth fighting, but I think again there is not a universal approach that will work (and why many “biomed” treatments fail). Treatments need to be tailored to each individual child, and I know the biomed doctors are not running the right tests (because they’re not available yet…but we’re working on it).

Vaccines- There is no more highly polarizing topic in the autism community. First, let me tell you where I come from. I’m that person who chastised friends for not following the vaccine schedule precisely. I thought people who did not get flu shots were irresponsible. I would take any and every vaccine offered to me and my children, call it blind faith. Based on what I do everyday, I was far more terrified of the diseases the vaccines were protecting us from than I ever was of autism. But life has changed that line of thinking, and while I still believe in medicine, I’m also much more tolerant and understanding of every viewpoint. I absolutely see an immune connection to many forms of autism, and I think it's important to consider all potential contributors to prenatal and early postnatal development (which includes all of the above).

Other random proposed causal associations…** Older fathers- Nope, not us. **Anti-depressants while pregnant- Nope, not us. **Obese mothers- Um, no. ** Kids less than 18months apart- uhhhhh, yep (this one actually plays into the folate pathway that we’re currently pursuing… tracks back to a genetic component, more on this later)

My overall take? There are a lot of potentially good treatment paths out there, and we’re just at the start of our journey. I generally think the causation is flawed in many cases, usually due to the fact that people try to overgeneralize to all autism rather than stratifying into relevant and applicable populations. Again, all I care about right now is my population of 1…and this is where we stand…for now.

More on our treatment/therapy plans later…