By Teresa Conrick
It was disturbing to read an article by Disability Scoop that described the results of an Autism Speaks survey about future autism research and focus. These specific statements were alarming:
♦ Many survey respondents specifically indicated that they oppose research on curing or preventing autism.
♦ the group moved to overhaul its mission statement opting to remove words like “struggle,” “hardship” and “crisis” as well as any reference to curing autism.
♦ The findings will help shape how Autism Speaks determines what types of studies to fund and the impact could be significant.
♦ Compared to a similar survey in 2012, Autism Speaks found that respondents this year are more interested in the experiences of those entering adulthood and less concerned about immune dysfunction and environmental factors.
I decided to go right to the Autism Speaks page and see for myself:
The results are in: Priorities in autism research
And the survey results page here
♦ 6,000 people who completed the survey – including nearly 500 individuals on the autism spectrum, more than 4,000 of their family members and more than 1,700 researchers, clinicians and educators.
♦ Overall, we saw particularly strong support for research aimed at health and well-being, autism’s associated physical and mental health conditions, the transition into adulthood and life-span issues.
♦ Immunity and environmental factors received particularly strong emphasis in 2012 - both areas still rated important in 2017 survey (At 567 votes and 383 votes respectively, they win by a landslide).
It is possible that there are people or organizations that would like to profit from extensive and expensive genetic research on autism with a slant on ¨markers.¨ How that information would be used could be troublesome but to see comments like this can also start an incorrect message for the thousands of families who have a loved one that is ill with numerous immune dysfunctions and environmental illnesses:
“Stop trying to find a cure. We do not want to be cured; we want to be accommodated.”
“Researching a cure or genetic markers of autism. Preventing or curing autism is a form of eugenics, which is an abhorrent idea.”
We, families of ill children and young adults, do not want to deny funding for adult transition and lifespan issues -- especially as some of us have young adults who we worry about 24/7. The issue of helping those diagnosed with autism feel better and function better needs full attention and alarm. Too many have self-injurious behaviors; aggression; are non-verbal; in diapers; have severe food/peanut/environmental allergies; have chronic infections; mitochondrial dysfunction; seizures; in addition to social difficulties, obsessive behaviors, and language impairments.
The need for helping this large population on the autism spectrum is imperative. My 24 year-old daughter has made positive progress as her health improves, due to immune treatments. I am thankful for all of the grant money, researchers, organizations, and individuals helping in this endeavor but we need much more. For those trying to stop this research and treatments, and deny that these individuals are ill, shame on you.
Teresa Conrick is Science Editor for Age of Autism.