We live in an era when science has become politicized. We regard scientific arguments as unintuitive while simultaneously claiming to be rational human beings. Within society fallacious statements spread like a virus going from person to person and getting amplified in social platforms. By way of contrast, scientific thought is usually conveyed via articles and textbooks. The message that sticks to mind is not about credibility but about who conveys the same. People are swayed by social influence and value personal experience more than scientific verbiage stemming from unknown sources. They may turn down explanations if they know that other people, similar to themselves, have turned them down. This Is how social influence manipulates people’s opinions and behaviors. When these social groups are massive, decentralized and aimed at challenging established policies, we call them movements (think of the antivaccine movement and neurodiversity). People tend to believe that the choice made by others in a group conveys information. In this regard, people conform to what others say, even if subconsciously. This is herding; a type of convergent social behavior that aligns our thoughts and actions with those of our social network.
There is no wisdom in crowds. If different opinions are not considered, then your belief system is based on dogma. This is how cult movements and superstitions get started. Indeed, when we cannot link events in our lives with natural explanations, we readily provide supernatural ones. Eudora Welty once famously wrote that, “The events in our lives happen in a sequence in time, but in their significance to ourselves they find their own order”.
The internet provides a platform for the placement of ideas of the more radical. The loudest voices are the ones heard. For many parents, vaccines provide an easy explanation and a cop out explaining autism. You really do not even need to understand the explanation to like it. Less is more. Lies are provided in sparse words. Positions do send signals and taking one that is anti-science, when science has not helped you, denotes anger. It is therefore not surprising that the anti-science movement has generalized to every stage of medicine attacking many areas related to autism: research, treatments, vaccines, epidemiology, genetics, and psychiatry.
People lack exposure to scientific information as the same is often difficult to understand. Many years ago, I had the pleasure of meeting Alan Alda, the American actor and comedian. Although we were discussing the condition of one of his family members, the conversation soon veered to his efforts at teaching doctors how to better communicate their science with clarity and passion. Some 15,000 people have gone through the Alan Alda Communication Training in the art of talking plain sense. The Alan Alda Center for Communicating Science helps professional scientists, researchers, and graduate students to explain their work and its significance clearly and vividly to their target audiences. In essence, if you cannot communicate something in simple words then, it is more than likely, that you do not understand the problem yourself.
Engagement is the key to communication while gaining the attention of the patient is the best way towards establishing a dialogue. In the field of autism, doctors have done a poor job of listening to their patients, engaging with them and answering their questions. They wait for you to bring problems to their attention instead of making you aware of potential pitfalls in the windmill of social media. Patients in turn become engaged with social media rather than their physicians. The more you are exposed to social ideas, the more likely you will see them as familiar and accept the same. Don’t confuse intuition and passion with rational thinking. If we are to move forwards rational thought will have to prevail.
It`s because despite your personal research there is still no scientific consensus on the cause of Autism. So doctors have little to go on to tell parents. So where do those parents go but google, anti vax & social media for answers. Where do high functioning autistics go but neurodiversity that tell them what they want to hear despite its absurdities, so it’s the failure of scientists to come to a consensus on what autism is and what leads to such heterogeneous symptoms that is the problem.
Oh so true. In this regard, neuropathology echoes Dostoyevsky’s unsettling remark that if there is no God, then everything is allowed. If we do not have pathology, we should favorably consider every inquiry and every result. Unfortunately this approach preserves falsehoods by building tale upon tale. Overall physicians have failed patients in their research and explanations.
Why do you think scientists have failed to come to a consensus of what the driver of autism is?
I can understand the difficulty in working out the catalyst e.g., neuronal migration, but since they know and agree upon the drivers of MS, Motor Neurone Disease and Parkinson’s one would be forgiven for thinking spotting the difference between a NT and autistic brain shouldn’t be too beyond reach.
One would think they would be eager to silence the anti vaxers by quickly forming an agreement but alas it’s all an uncoordinated tangle of theories from around the world, from mini column malformation you discovered, lack of purkinje cells, mitochondrial disorders to autoimmune dysfunction. Enough to make one`s head spin.
It is a complex question and I would not be able to do it justice in this comment. My personal take is that most scientists don’t have a personal stake and merrily go along using the techniques they have been trianed on and not risking anything. However, many other reasons come to mind. One of the major ones is that the federal government is a big boys club. WHen I was the chairperson for the Developmental Brain Disorders I proposed funding priorities that would reward those projects that could have an impact in patients lives if their results were positive. I was shot down repeatedly, because this would take away from the big genetic centers.. Oh my, I could go on. and on…. see for example: https://corticalchauvinism.com/2014/09/29/the-national-database-for-autism-research-ndar-playing-favorites-in-autism-research/
It is a pity so much more could have been done. Excruciatingly painful.
Among the divergent opinions, the one that relates vaccines to neuroinflammation should not be overlooked.
It is not the same to consider vaccines as one of the factors that can promote neurodevelopmental problems, than to be anti-vaccines.
You show great wisdom. I think that parents should have a greater say in research. They were the ones claiming sensory, GI problems, etc. for decades before being recognized by physicians.
My grandchild was one of those autistic individuals who reacted violently to vaccination. In his case, he had an NGLY-1 mutation. this may be the saving grace of precision medicine to autism: to identify those patients with mitochondrial disorders or other mutations that may make them susceptible to vaccinations. However, I do believe by far in the beneficial effects of vaccination for the population as a whole. Thank you for your comment.
Manuel, que hermoso blog, lo voy a compartir, me llevas a la reflexión constante. La dicotomía ciencia – mito, condición -construcción, tan presente y vívida en la cultura posmoderna, la facilidad de no soportar la angustia de no saber y buscar rápidamente respuestas “en movimientos o personas creíbles”, antes que en el lento enredo del camino de la ciencia, que supone constancia, paciencia sacrificio y estudio sistemático. El problema finito de la ciencia para explicar una condición humana compleja, con anclaje en neuro desarrollo, pero permeada constantemente por las condiciones del entorno cultural que facilitan o co determinan las posibilidades del desarrollo de una persona. Diadas y más diadas, la intuición vs. la razón, la emoción vs. lo procesos de cognición, deberíamos aprender quizás del pensamiento complejo que nos propone E. Morín , aprender a pensar en círculo y a menudo optar por una actitud contemplativa, maravillarnos de lo que hoy no podemos explicar y mantener la esperanza que la construcción del conocimiento se basa en el hecho primordial de no saber, y saber que no se sabe, luego que la verdad está en algún lugar que quizás nunca alcancemos, pero que solo se transita por un camino que es el de la ciencia.
Muchas gracias por tu comentario. Siempre te tengo en alta estima y aprecio tus escritos. Gracias por reflexionar profundamente sobre el escrito. Espero que todo te vaya bien.
I think you are essentially correct in your analysis, Science is just as vulnerable to social manipulation as anything else, in fact it always has been. Its becoming harder to cut through the fog of either poor science or media manipulation these days. Indeed in conclusion, intuition, gut instinct if you like, becomes essential in my decision making.
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Good comment. Thank you