Autism is a condition that is affecting more individuals and families than ever before. The rate of autism diagnoses has risen from 1 in 180 to 1 in 66 during the last decade alone, and researchers are still baffled over what is causing it.
Recently Autism Speaks announced the launch of MSSNG, a program that will create the largest public database of genomic information on individuals with autism spectrum disorder. This database will be accessible to anyone studying the possible causes or treatments for autism now and in the future.
While this certainly seems like a step in the right direction, there are many, including adults with autism, who take issue with it. Many were offended by the name MSSNG, which lends credibility to the idea that autism is a disorder in which something is “missing” from the individual. You can read Autism Daily Newscast’s coverage here https://www.autismdailynewscast.com/autism-speaks-mssng-project-sparks-controversy/19908/laurel-joss/.
The other objection to the MSSING project is that the individuals most likely to benefit from the project haven’t even been born yet, while there are thousands of children and adults living with autism who need help, now.
Author John Elder Robison wrote about it in an article published in MIT Technology Review. Like many prominent adults with autism, he takes issue with the attitude that autism is a disease that need to be cured, and instead would like to see more focus on projects that will help people with autism deal with the very real medical, sensory, and social challenges they face daily. He says, “If we accept that autistic people are neurologically different rather than sick, the research goal changes from finding a cure to helping us achieve our best quality of life.” You can read the full article here http://www.technologyreview.com/view/533366/fixing-autism-research/.
Linda Mastroianni, founder of Speaking Autism, echoed Robison’s concerns in an article published in the Huffington Post. She says,
,”If we want to have a conversation about improving the lives of autistic people, why not bring autistic people into the dialogue and ask them how they can improve their lives? Ask the very same people we are advocating for what they need today in order to make tomorrow a little better. I am quite certain that research will not be at the top of their list.”
You can read the full article here http://www.huffingtonpost.ca/linda-mastroianni/autism-research_b_6343480.html.
While many would argue that the MSSNG database may lead to significant breakthroughs in the future, there are many who are struggling today. More resources need to go towards helping individuals with autism navigate their daily struggles, towards programs that help raise awareness of autism’s unique strengths and challenges, and help potential employers and other members of society understand and accept those living with neurological differences. People with autism need to have a voice in the organizations claiming to represent them, and their point of view needs to be given as much consideration as the concerns of parents, doctors, and others who are working towards improving the lives of those living with autism.