In The Politics of Autism, I write:
The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”
H. Holden Thorp has a piece at Science titled "Bridging Two Views of Autism."
Last week, Science, Science Advances, and Science Translational Medicine published an extensive set of papers from the PsychENCODE Consortium, a multi-institutional collaboration whose aim is to study the genetics of neuropsychiatric disorders such as bipolar disorder, autism spectrum disorder, and schizophrenia. The papers, collectively called PsychENCODE2, apply advances in single-cell and multi-omic technologies to postmortem brain tissue to elucidate factors that may help explain and develop treatments for neuropsychiatric conditions. The new insights gained from these considerable data will hopefully inspire new ways in which the clinical community can find common ground with researchers, something that is not always guaranteed in the contentious mental health field.
In autism, perhaps more than any other such condition, there is great tension between the researchers focused on the mechanisms and potential treatments of autism as a disease and the neurodiversity community that views autism as a difference to be accommodated, not a disease to be cured. As an autistic person and a journal editor, I live in both worlds and talk to folks on both sides. It is unlikely that many of the most passionate adherents to either model will overcome their disagreements anytime soon. The neurodiversity community, which believes that it is a biological fact that people experience and interact with the world around them in many different ways, views a disease model as disrespectful to the humanity of autistic individuals, whereas the medical model community is motivated by a desire to end suffering for autistic patients—especially those who require lifelong support—and their families. I take great inspiration from both camps: the exceptional neuroscience, on one hand, and the compassion and strength of the autism community, on the other. I’m also an optimist who is always looking for common ground, which does exist if you look for it.
Perhaps most notably, the continued development of a solid biological explanation for autism helps dispel early notions, propagated most prominently by psychiatrist Leo Kanner in the 1940s, that autism was a result of toxic parenting, not a biological difference, and that autism was a very narrow category applying only to individuals with considerable impairment. Kanner also claimed to have been the first to describe autism instead of the physician Hans Asperger, who had a broader vision for autism similar to the idea of the autism spectrum we consider today. Yet, Asperger referred patients to Nazi eugenics programs, which is partly why Asperger’s syndrome is no longer used as a diagnostic term for autistic individuals. Given this fraught background, it’s no wonder that there has always been tension in the field. Laura Klinger, executive director of the University of North Carolina’s TEACCH program that is rooted in the neurodiversity approach, agrees that establishing the biological basis of autism should not come with controversy. “Understanding how people become neurodiverse is an important research question,” she said.
Complicating matters, placement on the autism spectrum is often accompanied by other conditions, such as anxiety, depression, epilepsy, and gastrointestinal problems. Klinger and neuroscientist Simon Baron-Cohen, who leads the Autism Research Centre at the University of Cambridge, both told me that although autistic people may push back on the idea that there are biomarkers for autism, rejecting the notion that it is a disease that should be treated, more insight into the coexisting conditions may be welcomed. A PsychENCODE2 study suggests that further research may lead to the ability to categorize autism into subtypes that occur along with these other diagnoses. Klinger’s own research centers on therapy for anxiety, depression, and cognitive decline in autistic adults. “If there was something in the genetics that would allow me to be more personalized in my therapy,” she said, “that would be a great advance.” Such progress would help Klinger and other clinicians know when to prioritize treating autism with therapy or treating the coexisting conditions with pharmaceutical approaches.
More work lies ahead for better understanding the biological details of mental illness. At the same time, acceptance and support for individuals with mental health conditions and neurodevelopmental disabilities will hopefully continue to grow. Tension between how to respond to these two trends will persist, but the scientific community can work to find ways in which both are mutually reinforcing.
