Why Scientific Research Supports a Neurodiversity Model of Autism
Autism scientists, who are again gathering this week at the International Society for Autism Research (INSAR) annual meeting in Rotterdam, once had a clear mission. Autism was an undesirable thing that was a source of crushing disability. Researchers wanted to relieve suffering and possibly even eradicate the condition. But neither of those things happened. Relief was slow coming, and advances in science showed that much autism is heritable and not subject to cure at all. Meanwhile the perception of autism changed dramatically.
Just a few decades ago, the image of autism was shaped by observers who watched autistic people and imagined what their lives were like. Today autistic people of all sorts are finding their voices and telling the world about their firsthand experience of life on the spectrum. These first-person accounts are often strikingly different from non-autistic evaluations. They describe lives that are more positive, complex, nuanced and richer.
At the same time, science is parsing autism into many threads. Some autisms are linked to de novo genetic mutations, while others have been linked to environmental toxins or maternal illness. Some forms of autism may be more heritable than others.
With the diversity of autism, it should come as no surprise that autistic perceptions are equally diverse. Some see themselves as sick and seek a cure. Others say they are different, not sick. Neurodiversity — the idea that autism is a part of human diversity — has gained considerable acceptance, though other autistics and some scientists reject the notion. Meanwhile, as non-autistics devote vast resources in an attempt to find out why we exist, many if not most autistics are content to accept that we are what we are and live our best life.
The neurodiversity perspective does not deny that disease or toxins can injure us. Nor does it deny the reality of autistic disabilities. Rather, the neurodiversity perspective posits that autistics are part of humanity because our differences have been critical to the advance of our species. Neurodiversity proponents point to the many achievements attributed to autistic people over the years, and the areas in which some autistics excel compared to the typical population.
That, they argue, is the evolutionary explanation for at least some threads of this grab bag behaviors we call the autism spectrum. It’s noteworthy that the neurodiversity paradigm has been embraced most strongly by actual autistic people, but it’s now finding increasing support among non-autistics too. Neurodiversity stands in sharp contrast to the earlier view that autistic development was abnormal; a developmental mistake.
What’s an autism scientist to make of that proposition?
We’ve no way to reach back in time to see with certainty who was autistic in history. Modern research does show that the incidence of autism is the same in every decade in living memory. There’s no reason to doubt that trend continues back in time. Every day it seems some new historical figure is alleged to be on the autism spectrum, based on contemporaneous descriptions or possibly their own writings.
Many of these retrospectively diagnosed individuals made great contributions to humanity. The list includes Newton, Jefferson, Mozart, Einstein, and Michelangelo. While we cannot know if those specific individuals were on the autism spectrum, we can say with considerable confidence that the autism spectrum has existed for quite some time, and if it affected between 1 and 2 percent of the population it stands to reason some historical figures were autistic.
Present-day research shows that a significant percentage of today’s autistics marry and have children, and the incidence of autism is higher in those kids than in the general population. Other studies are showing that today’s autistics are more likely to have parents with autistic traits. Those findings buttress the neurodiversity argument that autism is a stable part of our genome.
Research has shown other pathways into autism. Factors have included chemical exposure, maternal fever or illness, and parental age. While all those things are implicated, genetics still plays a major role. The argument that a portion of the autism diagnoses fit the neurodiversity paradigm is strong.
The idea of neurodiversity arose in response to the earlier depiction of autistic people as less than others. Autistic people were described as “shells of humans,” or “locked up by autism.” These portrayals present autistics as second-class versions of mainstream humanity, and today’s population rightly finds that unacceptable.
In 2018 autistic people are everywhere, including elite colleges. Some can point to exceptional academic records as evidence that autism is about more than disability. Students at my own university are aware of their disabilities, but they put them alongside their exceptionalities when describing how autism affects them. While they want better supports, they don’t generally wish to change the mix.
Ten years ago workplaces saw autism as a disability accommodation issue, and employment was often a supported thing with a large element of charity. Now major employers like Microsoft and SAP talk about the autism advantage, and they recruit autistic people in order to obtain a competitive edge. That sort of thinking about autistic workers is inconsistent with a disease/disability medical model.
Neurodiversity is an argument that autistics evolved naturally, for the benefit of the species, just like other forms of diversity. While it may be true that some forms of autism have a basis in non-genetic pathology, the idea of neurodiversity is inclusive; i.e. it encompasses all autistic people, not just those with a provably heritable strain.
All that considered, it’s important to remember the neurodiversity argument is not an argument against autism being a disability. To the contrary, other forms of human diversity contain aspects of disability and it is the same with autism. It’s a mix of disability and exceptionality.