(updated june 27th, 2017)
Neurodiversity is defined as a concept where neurological differences, like Autism and ADHD, are to be recognized and respected as any other human variation.This is a wonderful concept. Acceptance. And it should be embraced. But the idea that it just exists in a vacuum with no outside influence? That is scientific inaccurate.
While religion typically is defined by a belief in a superpower deity, religion is also described as something determined by faith instead of actual evidence. Rejecting the “way of the world, nature or science” in search of a higher truth and way of being. What I think Neurodiversity has done for us, like religion often does, is guide us in our morality, pointing out the faults in our path of science. But it also is leaving the scientific path, which in this case it absolutely does not need to do.
Steve Silberman’s new book entitled “NeuroTribes” is a call to examine the science that isn’t working and to finding the humanity to guide our path. Silberman’s book reviews the history of Autism and the contributions made by those individuals on the spectrum. It is a masterpiece of story-telling and a vital piece of work. While there are some, like Gadfly autistic blogger Jonathan Mitchell and further by Dr. Manuel Casanova “Neurotribe or Diatribe”, that disagree with Mr. Silberman’s throwing Leo Kanner under the proverbial bus (as did this wonderful insight piece from SFARI’s Spectrum News article “Correcting the record: Leo Kanner and the broad autism phenotype“, his book is still a major feat and important contribution to the conversation about Autism and its history.
The further disagreement from other organizations emerge when Steve and his aligning advocacy groups such as “The Thinking Persons Guide to Autism (TPGA) and Autism Self-Advocacy Network (ASAN) position that Autism is a natural course and there are no treatments, cures, causes or associated disorders and disease-states. This is where the science contradicts their view of Autism. The main point of Steve’s book and groups like TPGA and ASAN is that Autism isn’t a disease, it doesn’t need to be cured and there are no causes other than genetic traits and random mutation as a part of natural evolution. This unfortunately flies in the face of science. Because science tells us that something is happening, and creating what we see as Autism or the behavioral and dysfunction aspects of these struggling adults and children.
From Silberman recently airing on NPR: “How society deals with autism”
Autism is a highly complex and heterogeneous condition that is probably caused by a highly complex and heterogeneous series of interactions between genes and the environment. But one of the arguments that my book makes is that we think that our society is taking autism seriously and dealing with the challenges that it presents by pouring millions of dollars into it. [They’ll say,] “Let’s find more candidate genes.” Well, we already have 1,000. “Let’s find more potential environmental triggers.” Well, everything from antidepressants in the water supply to air pollution has been identified as possibly contributing to autism. What I say is that at least some of that money should be redirected to things like helping autistic adults live more satisfying, healthier and safer lives, or helping families get the services they need or helping families get a quicker diagnosis for their kids. (NPR September, 9th 2015)
While Silberman acknowledges that there is a gene-environment interaction, he also wants us to dismiss its importance. In his book (page 470) he writes that:
“…society continues to insist on framing autism as a contemporary aberration— the unique disorder of our uniquely disordered times— caused by some tragic convergence of genetic predisposition and risk factors hidden somewhere in the toxic modern world, such as air pollution, an overdose of video game, and highly processed foods. Our DNA tells a different story”.
Silberman and his supporters such as Emily Willingham are metaphorically akin to the “Wizards of Oz”, by offering us an inviting perception of Autism. To do this, they must convince us that the evidence we see, contrary to their own, is simply not there or is too complicated to be relevant. “Pay no attention to that man behind the curtain” Emily tells us in articles such as “Being Alive Linked to Autism“. However, a scientific revolution doesn’t happen when we ignore the scientific evidence, but rather when we make use of it in a different way (See Part 2: Paradigm Shift). The true core of autism may very well be a neurological difference. However, Silberman et al, seem misguided by assuming this is then a static way of being wired; that those with autism “are just born with it”. Our neurology is quite flexible and malleable as demonstrated by epigenetics and neuroplasticity. A neurologic difference, when seen in a stress model, is a difference that can be re-regulated or amplified. This would create both the gifts and impairments of Autism. It would create both an unbalanced and a heightened functioning system. Autism may not be curable but the opportunities present themselves to make major improvements, compensations, alterations and build a solid ground for the future.
You can’t “cure” Autism any more than you can cure what has happened to a coastline after a hurricane, but you can make major improvements, compensations, alterations and build more solid ground for the future.
Autism can’t be separated from the gene-environment interaction and it can’t be cured because we can’t cure an adaptation. What is painfully needed here is a major paradigm shift. A drastic new model taking autism out of the “disease-model” and into a “stress-model”. Out of the realm of single causes and cures (Germ Theory Model of Medicine) and into a “stress or systems framework”. In a Stress Framework we can model the interaction of the gene with the environment. We now have the opportunity to utilize systems science models where the gene and environment interact; moving into the world of epigenetics. While both points of view, neurodiversity and the cause-cure, have valid observations, neither one works with the entire body of current scientific evidence. But together, in a Stress Framework, both points of view can find a place.
In many ways, we might see the fight of Neurodiversity as the “missing piece” of the puzzle we need to solve Autism.
Neurodiversity could be seen as a religion because they are advocating not for discovering ultimate truths about the universe of autism, but rather for the every day living and soul work of these individuals. So even while they rail against the pursuit of science, I’d like to think that in the end they will find that their moral compass and treasuring the hearts of those on the spectrum we’ll eventually coincide and be proven by the science they currently fear.
Benefits of Neurodiversity
- Calls to abandon and move past the “Cause-Cure” Model of Medicine
- Calls for more money and resources to be given directly to those with Autism and programs to improve quality of life
- Calls for accommodations and programs with less sensory and social overload
- Values the uniqueness, amplified talents and contributions of those on the Spectrum and differently wired brains
- Focus on the positive attributes (which reduces stress activation pathways)
- Focus on reducing social isolation (which regulates stress oxidative pathways)