Recently Autism Daily Newscast printed a story about #MSSNG, an awareness campaign launched by Autism Speaks to gain support for their initiative to develop the world’s largest database of sequenced genomic information on individuals diagnosed with autism spectrum disorder.
Autism Speaks is partnering with Google to create an open database containing genetic information from over 10,000 individual with autism that can be used in future research geared towards discovering any genetic components of the disorder.
The #MSSNG campaign has sparked the ire of many adults in the autism community, including author John Elder Robison. Mr. Robison’s objections to the campaign are not against the research itself, though he does explain why he believes this project will not be particularly helpful to individuals who are currently living with autism, but rather against the use of #MSSNG as a tool for awareness. In a blog post dated Dec. 9, 2014, he writes,
“I’ll bet every autistic kid in America knows how it feels to be told we were missing some of our marbles growing up, and reminding us of that in the context of a research initiative is at best insensitive and at worst seriously offensive.”
He goes on to say,
“Genetics is important. But it is not job #1 for this community. . . We should not be trying to ‘solve the autism riddle.’ We should not be ‘looking for missing pieces of the autism puzzle’. We should be Helping Autistic People – Right Now.”
Other took to social media to express their discontent. The counter-hashtag #NOTMSSNG has been trending on Facebook and Twitter, spreading awareness of the autistic community’s anger at being characterized as “missing” or “not all there.” The organization Boycott Autism Speaks launched a meme stating, “Autism Speaks has launched, “Missing”, a new highly publicized assault of the humanity of autistic people. Join #Boycott Autism Speaks on Friday on Twitter as we occupy their hashtag #MSSNG and answer with #NOTMSSNG.”
Individuals and organizations alike took to Twitter to express their discontent. Common themes included “I am not missing” or “I am only missing from the discussion at Autism Speaks.” Many also expressed concern over Autism Speaks’ tendency to characterize autism as a disease, and as a condition that needs to be obliterated.
The rift between Autism Speaks and certain adult advocacy groups is nothing new, and it’s clear that the two camps will not be finding common ground anytime soon. While the genome project may have long-term benefits to the autism community, the choice of #MSSNG as a marketing tool has clearly struck a nerve. Many feel that the lack of representation by individuals with autism is to blame.
John Elder Robison says,
“So what can we do, to avoid more public relations debacles like this, which hurt us all? We can bring autistic people into positions of authority in all the agencies who speak for and about the autism community, and who fund research into autism.”