The current direction of research on autism may have a detrimental effect on the treatment and quality of life for individuals with the condition, according to a panel discussion at Harvard Law School yesterday.
Current researchers often investigate autism through the lens of genetics but fail to also consider the many physiological manifestations of the disorder, according to Isaac S. Kohane, a Harvard Medical School associate professor in the Harvard-MIT Health Sciences and Technology program. These two realms often remain distinct, consequently hindering progress in autism research, Kohane said.
Genetic research has made great strides in recent years—in fact, Kohane’s lab identified a group of genetic variations that allow scientists to predict whether an individual has autism with 70 percent accuracy. Despite these advances, Kohane said that researchers need to branch out to different aspects of the disorder. He pointed to the inflammation in the brain, blood, and spinal fluid as an understudied symptom of autism.
Assistant Law Professor I. Glenn Cohen, who co-directs the Petrie-Flom Center for Health Law Policy, provoked debate when he broached the question of whether genetic research should be used to screen for autism and eradicate the condition.
Ari Ne’eman, founding president of the Autistic Self-Advocacy Network and the only panelist on the autism spectrum, said that the autistic community takes offense at the idea of eradicating autism.
“If you look at the last 30 years of dialogue about autism, the question has not been, ‘How do we make a better world for people with autism,’ but ‘How do we make a world without people with autism,’” said Ne’eman, who added that autism should be viewed as a disability rather than a disease.
Ne’eman’s sentiments resonated with audience member Linda Tieh, a student at the Law School who said she worked with an autistic child as a high school student.
“Sometimes you don’t really discover a special talent or ability that they have. I was lucky enough to see that [the autistic child she worked with] had a knack for music. He could play music by ear,” she said.
“But if he heard the music with mistakes in it, then he would play it with the same mistakes, and he would not unlearn those mistakes,” Tieh added.
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