Sometimes, parents have to fight like tigers to advocate for their kids. I think we’ve all had unfortunate run-ins with healthcare professionals who have the bedside manner of a prickly pin cushion, are incapable of digging the wax out of their ears, and spend all but five minutes to review your history and chuck a diagnosis at you before heading on to the next patient. Yeah, we’ve all been there and it’s infuriating. Thankfully in this day and age, so much information is available on the internet that, at least in some measure, we patients have become the first line in defense in healthcare. Of course, the patient was always the first line, but now we have the opportunity to be better informed thanks to search engines like Google.
However, this is only the first step in the journey. Yes, run-ins with less-than-helpful healthcare professionals have left our culture with a sour taste in its mouth when it comes to trusting medicine and science. On the other hand, most of us are not doctors. And even though Jenny McCarthy seems to have utmost faith in her informal education at The University of Google, I wouldn’t trust my judgment enough to by-pass professional advice altogether. I’ve experienced enough occasions in my life when I thought I knew the cause of an acute illness– I mean, hey, I’m a biologist after all, right? But later I find out I’m completely wrong. And the only reason that the doctors could figure it out was because they have experience in medicine and I simply do not. They have been educated to (hopefully) recognize the signs. I, instead, have been educated to understand anatomy, how cells grow and mature, and how they interact with one another. That isn’t medicine. Which is why I leave the official diagnoses to the people with the training from now on.
I’m no architect. I would never attempt to design a house because I have zero training in architecture. But in our culture, because we all have access to scientific materials online, because we’ve all had to let our fingers do the walking to help ourselves whenever a given medical professional has let us down, and because that’s invariably led to some distrust between patient and doctor, there’s a cultural sentiment where we kinda feel we’re all doctors and scientists. That feeling is understandable considering what we go through. But the sentiment can become grossly over-inflated, as Jenny McCarthy’s “University of Google” comment on Oprah illustrates.
It is potentially dangerous for laypeople to play doctor or scientist with themselves or their kids without a considerable sense of caution. (Hell, sometimes it’s dangerous enough for doctors to play doctors!) But if you haven’t studied the development of the brain in depth, I promise you, you will not truly understand autism at the biological level, and to theorize without that knowledge is foolhardy. That goes for anyone, regardless of whether you think autism is caused by genetics, epigenetics, leaky gut, vaccines, or something else entirely. It doesn’t matter. If the brain is involved, you need to have studied the brain. That includes embryology and developmental biology, cell and molecular biology, genetics, the cardiovascular system, the immune system, everything. If you don’t have that broad base in biology, your understanding will be limited.
In this day and age, sometimes we need to play doctor or scientist in order to try and successfully advocate for ourselves or our families when we feel that needs aren’t being met. But we seriously need to acknowledge our limitations too. Many times, that limitation is simply knowledge. If we haven’t been trained in a particular area of study, we are invariably limited and we will make many more mistakes. Do you want to make those mistakes with yourself or your child? I know I don’t.
Here’s some advice which I hope you might find helpful: If you want to be a good lay-scientist, be open to ideas with the realization that there’s still a lot you don’t know (and that goes for professional scientists as well!). When you can, read professional materials, including textbooks that give a broad overview of an area of study, and if you can’t access articles don’t be afraid to email one of the authors and ask if they can send it you. If you are too overwhelmed by the technical jargon of a paper, then read the Abstract, Introduction, and Conclusions sections, which will better summarize the findings in general terms. In addition, don’t use Google or Yahoo but use search engines like Google Scholar and PubMed, which are great for finding peer-reviewed work and bypasses less reliable materials. And don’t be afraid to open up conversation with scientists whose work you want to learn more about. Yes, some of them may be busy and ignore you, but others are often eager to explain. Finally, the biggest mistake that lay-scientists often make is taking evidence of a single paper at face value. Not that individual papers can’t be useful, but rely instead on the bulk of evidence to form your conclusions. That is the strength of science: its entirety.
As a scientist, it genuinely concerns me when people, who have little to no background in biology or medicine, are so convinced of a hypothesis or treatment that they are willing to fight tooth and nail to convince everyone of it. Such conviction is not admirable but dangerous. At that point, the motivation becomes less about “accuracy” and more about being “right”, a human failing we all succumb to at one time or another and which blinds our judgment. Mind you, I say this irrespective of whether the hypothesis or theory actually is correct. But, ultimately, every concept needs to be weighed cautiously and rationally, especially where health is concerned. First and foremost, our aim must be to improve quality of life, because that’s the only way we truly win.
Know thy limitations.