Autism advocate Manoj Kanagaraj says that some autistic people who support neurodiversity think he is the enemy, because he hopes to help find the causes of Autism Spectrum Disorder (ASD). Manoj says that many people in the autism community feel that supporting neurodiversity and supporting further research that aims to uncover the roots of the disorder are mutually exclusive ideals. He says that six years ago, his cousin was diagnosed with autism and that the child is “now an 8-year-old boy tormented by seizures and arm biting,” and stated in a Washington Post article that his cousin was the inspiration for his involvement in autism advocacy.
Kanagaraj is a biology and computer science major at Duke University and has worked inside of an autism genetics lab. He also helps manage a social program for autistic youth. He says that some people in the autistic community say that it is impossible “to be both an advocate for autistic people and an advocate for autism research.” A recent Newsweek article also addressed the issue of neurodiversity within the autism community in a piece entitled, “The Debate Over an Autism Cure Turns Hostile.”
“The neurodiversity movement began in the 1990s, gaining ground through social media, largely around discussions of autism. Proponents liken their stance to the struggle for acceptance of ethnic minorities, and for equality in gender and sexual orientation. There was a time, they point out, when the medical community considered homosexuality to be a mental disorder. What if people on the autism spectrum were accepted for their differences, rather than pathologized?”
Manoj claims that those in support of celebrating neurodiversity are against finding a cure for the disorder. Ari Ne’eman, founder of the Autistic Self Advocacy Network (ASAN), according to Autism Digest, has been “instrumental in challenging the prevailing notion that autism needs to be cured.” Manoj says that many people involved with the neurodiversity movement feel that genetic research that looks to cure autism demeans autistic people.
“There is some legitimacy to these concerns. It’s difficult to justify concentrating limited funding on causation studies –- which can take decades to yield tangible benefits –- when there are millions of autistic adolescents and adults who need access to more services to improve their lives, including better education opportunities, employment assistance and in-home care. At the same time, blanket condemnations of genetics research are unfair. There is common ground where research on autism’s causes can be reconciled with the concept of neurodiversity and acceptance of autistic people.”
Kanagaraj refers back to his cousin and points out that ASD covers a monumentally varied spectrum. He points out that some people, like his cousin, sincerely suffer from intellectual disabilities, seizures, and physical pain in association with their autism and asserts that by “categorically opposing research into the causes of autism, neurodiversity advocates are not recognizing the needs of all autistic people.”
“According to them, a culture of acceptance and respect for autistic people may help reduce the anxiety and stress of living with the disorder. But even if these types of social programs are widely adopted and embraced, without biomedical research efforts, the suffering of autistic people is likely to remain. A world free of the bullying of autistic youth would be a wonderful thing, to be sure, but it would not relieve my cousin’s seizures or self-injurious behaviors.”
What do you think? Is Manoj Kanagaraj correct? Is there “a false dichotomy in the autism world” that leads us to believe that we have to choose between neurodiveristy celebration and medical research into finding the cause for those who suffer from ASD, or are these ideals at odds?
[Photo via Pixabay]