Instead, for the next two decades, many psychiatrists focused on treating what they believed were defective mothers and fathers. Research exploring other explanations for the condition stagnated.
Having a scientific orthodoxy can be a positive thing, but it can cause severe damage if it turns out to be inaccurate, Donvan says. “The history of autism has shown that, time and time again—particularly in the early days—researchers failed to examine their own assumptions and biases.”
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Flawed assumptions also invade researchers’ attitudes toward people with autism, according to Silberman. He says scientists long viewed people with autism as less than human, rationalizing a range of “treatments” that were more akin to torture than therapy, including electric shocks and physical abuse such as hitting. Although contemporary practitioners have largely abandoned these methods, some continue to use punishment as a means of modifying behavior, he says.
“The first question that should be asked in any research project is, ‘Would you do this to a non-autistic person?’” he says, noting that asking adults with autism for their input is a crucial second step. “Autistic people should be seen as valuable collaborators in your work, rather than as passive subjects.”
Many researchers working in the field today are motivated by a deep desire to help people with autism, Donvan says. But scientists should still ask themselves, “Is there anything I’m doing now that I may regret 20 years from now?”
Some of the researchers who tested electroshock therapy or hallucinogenic drugs in children with autism back in the 1950s and ‘60s did so with the best of intentions, Donvan says. “In light of modern mores and best practices, those choices look bad today,” he says. “But that does not mean those researchers were motivated by cruelty or sadism.”
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The 1990s saw a sea change in awareness of autism. People previously diagnosed with childhood schizophrenia or minimal brain damage were recognized as having autism all along. This new awareness sparked the notion of an ‘autism epidemic,’ which drew an influx of research dollars into a once underfunded and overlooked field. But unfortunately, little of this money went toward helping people with autism.
It went largely to uncovering autism’s cause, giving scientists insight into the workings of the brain. It also generated leads for drug targets. But for people with autism and their families, “the tangible benefits remain elusive,” Silberman says.
Researchers know “astonishingly little” about the lives of adults with autism, he adds, including how many of them there are, how other conditions associated with autism affect their lives and how best to translate their abilities into meaningful employment. Likewise, little research focuses on how autism manifests itself in women, or on determining the prevalence of autism in minority communities with limited access to diagnostic services.