Director’s Blog: The Four Kingdoms of Autism
In 2007, Caryn James wrote in The New York Times that “autism has become to disorders what Africa is to social issues.”1 This statement was intended to emphasize the emerging public recognition of autism during the preceding decade. But it was also a prescient comparison, for in the years since 2007, autism and Africa have become highly contentious topics with emerging movements that have polarized those involved and confused the broader public.
Part of the polarization and confusion around autism results from heterogeneity: the diagnosis of autism now applies to a 5-year-old who has no language, a 20-year-old computer science student at MIT who is socially awkward, and a 40-year-old parent who has no interest in social interaction. “Autisms” may be a better descriptor of the broad spectrum of social and behavioral traits now subsumed under a single diagnosis. There is, in fact, no typical autism.
But some of the confusion has less to do with the heterogeneity of the syndrome and more to do with which door you knock on to get help. People with autism are likely to be viewed differently by pediatricians, child neurologists, child psychiatrists, developmental psychologists, behavior therapists, special education experts, occupational therapists, speech and language therapists, and any of the other range of providers. Like the blind men and the elephant, different providers can offer completely different perspectives on the problem and the treatment. And many self-advocates with autism dismiss the concepts of problem and treatment. They seek acceptance for what they call their ``neurodiversity,’’ rejecting the goals of prevention and cure. Is it any wonder families are confused?
In the spirit of mapping the autism landscape and finding some common ground, I suggest four perspectives that currently separate the communities interested in the autism spectrum. The language, assumptions, literature, and societies that have grown up around each of these perspectives are so distinct, they have begun to represent different countries or kingdoms. Each has its own truths. And each too often fails to understand or even recognize that their truths may not apply to all kingdoms.
Autism was first described as a developmental disorder by Leo Kanner, a child psychiatrist, in 1943. In the 70 years since, research on autism has largely focused on autism as an illness. The illness kingdom is largely populated by clinicians, researchers, parents, and some people with autism. They view autism as a brain disorder in which the language of medicine applies, with a focus on improving diagnosis and interventions, and cure as the ultimate goal. Medical theories about the cause of autism have evolved from “refrigerator mothers” (a term coined by psychoanalysts to suggest that autism could be due to a lack of maternal warmth) to complex genetics. In this kingdom, just as in cancer and heart disease, the search continues for biomarkers to assist in diagnosis and molecular targets for drug treatments. In contrast to those who view autism as a disability, focusing on improved services and supports, the illness kingdom focuses on biomedical approaches to reduce the need for services and supports.
Self-advocates with autism, like self-advocates in the deafness community, have replaced the medical model of illness with the language of diversity and identity. They, along with many in the educational and disability communities, view autism as a difference in need of accommodation, not a disorder in need of cure. The identity kingdom was founded by young adults with a past or current autism spectrum diagnosis who can live independently but who face a range of challenges in what they describe as the “neurotypical” world. Rather than seeking to become “neurotypical,” they advocate for acceptance or inclusion (“nothing about us without us”) as well as recognition that autistic thinking may yield innovative solutions. Some self-advocates interpret genetics research as eugenics, see causal explanations as irrelevant, and view treatment as coercive conformity. As with many other disability communities, their focus is on community supports, educational and occupational services, and civil rights.
One of the more heated arguments surrounding autism has been on the purported role of vaccine injury as a cause. This kingdom was founded by parents who report marked regression after the 18-month vaccination series, when their previously interactive, communicative toddler withdraws and stops speaking. While epidemiological studies do not support a link between vaccination and autism, those convinced that autism is an injury argue that population studies may obscure a link in rare individual cases. In contrast to the self-advocate quest for identity, many of these children are severely disabled by the core symptoms of autism and by immune dysfunction, gastrointestinal symptoms, and seizures. Many of these parents, feeling that mainstream science and medicine have failed them, have turned to alternative treatments based on detoxification, diet, or oxidative stress. But their guiding assumption is that autism has been caused by injury. This kingdom advocates for prevention, recognizing that identifying the cause is the most direct path to stopping the soaring prevalence of autism.
Just as scientists have studied blindness to understand the visual system, scientists in the kingdom of insight assume that the study of people with social and communication deficits is a remarkable opportunity to understand the social brain. This kingdom belongs to social neuroscientists, using tools from cognitive science, neuroimaging, and neuroanatomy. Their goal is to map brain pathways for social information such as face recognition or theory of mind. For scientists in the insight kingdom, studies of social behavior in animals or mapping the brain’s wiring diagram (the connectome) are critically important for gaining insight about the social brain even when these studies do not reveal a cause or a cure for autism.
These four kingdoms may not capture the entire universe of the autism spectrum, but they describe largely non-overlapping perspectives that now divide the world of autism. Not surprisingly, professional societies, social networks, and publications have emerged to fortify each kingdom, which may serve to limit interactions and constructive exchange of ideas between their communities. That explains the confusion of social neuroscientists when they see their work criticized by parents from the injury kingdom as useless or the bewilderment of geneticists who are criticized by self-advocates as trying to eliminate people with autism by searching for a prenatal diagnostic that could be used to abort the next generation.
Who has the right answer? In autism in 2013, as for what Caryn James saw for Africa, there is no single answer. At different times and for different people, each of these kingdoms has something to offer. We need better diagnostics and treatments; we need better services, especially for adults; we need a strategy for prevention; and we need a deeper understanding of the social brain. As long as each kingdom stays behind its own walls, there is little hope for progress overall.
A better way forward will be to find some common ground where the entire community can work together. One such area is the need for better services. Clinicians, self-advocates, parents, scientists, and educators should be able to embrace a goal of ensuring that every person on the spectrum, irrespective of wealth, geography, or ethnicity, receives the best treatments and services. We are unconscionably far from this goal now as families move from one state to another to find services for their child. The challenge only becomes more complex when children with autism become adults with autism. There are over 1 million parents of Americans with autism—nearly all worried about how their offspring will be cared for if he or she outlives them.
Fifty years ago, President Kennedy, chiding the nation for its neglect of those with mental illness and developmental disabilities, said, “This neglect must end, if our nation is to live up to its own standards of compassion and dignity and achieve the maximum use of its manpower.” Fifty years from now we don’t want to look back at this period and wonder why we stayed so long behind these kingdoms’ respective bastions, empowering conflict rather than cooperation. Instead, by focusing now on both short term needs and long term solutions we need a collective commitment to science and service to improve the world for both children and adults on the spectrum.
1James, C. (2007, April 29). Hollywood Finds Its Disorder Du Jour . The New York Times.