I became an advocate for autistic people six years ago, after my cousin –- now an 8-year-old boy tormented by seizures and arm biting –- was diagnosed. Like many boys his age, he’s energetic, smiles often and loves anything with wheels. But the severe symptoms of his condition make basic aspects of his life difficult, like brushing his teeth or sleeping through the night. He is marginalized by his community in India, just as many autistic people are here in the U.S. He was my inspiration to help develop a network of high school clubs focused on educating students about autism and encouraging them to befriend their autistic peers.
Now in college, I help manage Blue Devil Buddies, a program that organizes monthly social activities for local autistic youth. As a biology student, I have also worked in an autism genetics lab where researchers are trying to uncover the molecular, cellular and circuit-level basis of the disorder. In both roles, my intent has been to improve the lives of autistic people. But in the autism community, many see these efforts as mutually exclusive. It’s impossible, they say, to be both an advocate for autistic people and an advocate for autism research.
Supporters of autism’s neurodiversity movement are against curing autism. For them, autism is central to their identities. They view genetic research into its cause as part of the medical community’s battle to eradicate the disorder, an effort they feel demeans those with autism. Neurodiversity advocates claim that neurological disorders -– including ADHD, bipolar, and dyslexia –- are not disorders at all, only benign examples of natural human variation. They say it is society’s responsibility to accommodate their differences, not medicine’s role to fix their so-called deficits.
This debate has consumed the autism community. In February, advocacy group Autism Speaks created the hashtag #AutismSpeaks10 to celebrate its 10th anniversary. It was quickly commandeered by autistic people with anti-research sentiments:
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.
First, it’s important to acknowledge that there is no single face of autism. We use the term “autism” to describe what in reality could be five, or even 50, conditions. On one end of the spectrum, those with the disorder formerly known as Asperger Syndrome often can live independently and might have enhanced artistic talents and keen attention to detail. But other forms of autism can be debilitating, manifesting with intellectual disability, seizures or aggressive behaviors. Although all forms of autism present some challenges in social behaviors, the needs of people on one end of the spectrum are very different from those on the other. This is a challenge faced by all engaged in autism advocacy: It is difficult to know for which autistic people any group or person is advocating. By categorically opposing research into the causes of autism, neurodiversity advocates are not recognizing the needs of all autistic people.
Many neurodiversity proponents assume that social solutions to the challenges autistic people face, such as inclusive educational and employment opportunities, are likely to be more effective than medical ones in improving the lives of 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.
The mistake that neurodiversity advocates often make is to equate autism research with a modern form of eugenics.
Yes, there are people who donate money to autism research thinking that it will help prevent the disorder. But science is unlikely to reach a point where a child’s risk of developing autism can be conclusively predicted before birth. Instead, researchers — at least the ones I’ve spoken with — hope more than anything that the search for autism genes will help reveal the biology of brain development. Gaining this type of understanding is an opportunity to identify where, when and how to intervene to help people with autism improve their lives.
But what neurodiversity advocates have right is the need for a cultural change. If autism weren’t seen as something to be universally cured, future therapies could be focused on better alleviating the conditions that lead autistic people to physically and emotionally suffer, such as meltdowns and sleep problems.
Scientists and neurodiversity advocates need not be pitted against each other. There is a false dichotomy in the autism world that suggests we must choose between studying the origins of the disorder and accepting autism as natural personality variation. This divide creates unnecessary tension between the scientific and autism advocacy communities, whose interests actually often overlap. We can work together to secure more resources for people already living with autism without attacking critical research efforts. To dismiss all autism genetics research out of hand is as shortsighted as treating autism as a single monolithic condition in need of a cure.
Reprinted with permission from the Washington Post by the author. Original post can be found here.