Autism Speaks is a charity that advocates the “curing” of autism and promotes fear, furthering the national stigma against autism spectrum disorders.
Autism Speaks was founded in 2005, setting out to “fund research into the causes, prevention, treatments and a cure for autism.” Through fear-driven campaigns, propagating false statistics and a faulty board of directors, Autism Speaks spreads a mentality that autism is a plague on society that needs to be eradicated.
A common phrase used within disability advocacy groups is “nothing about us without us,” meaning people with the disability should be at the forefront of the organization. However, none of Autism Speaks’ 30 board members are autistic or even in the spectrum.
One of these members, Sallie Bernard, is the founder of SafeMinds, an anti-vaccination group that promotes the idea that vaccines are the cause of, in their words, “the autism epidemic.”
Autism Speaks also allies with the Judge Rothenberg Center, which has come under fire for using electricity on their autistic patients for minor infractions, such as getting out of their seats without permission.
Autism Speaks has had two campaign ads they have since had to remove from their website and social media after they were criticized for promoting fear and representing the views of parents rather than autistic children.
The “I Am Autism” campaign showcased autism as a terrifying menace, personifying it by saying “If you are happily married, I will make sure that your marriage fails. I don’t sleep, so I’ll make sure you don’t either. I will plot and rob you of your children and your dreams.”
This campaign falsely reported that 80 percent of couples who have autistic children get divorced, when the actual number according to the Kennedy Krieger Institute, is 46 percent, only 1 percent higher than couples with non-autistic children.
Their follow-up campaign, “Autism Everyday,” painted a portrait paying sympathy to the parents of autistic children. A narrator talked over sad images of tired parents, saying they can’t go out with friends anymore.
These campaigns completely ignore the feelings of the children and show autism as a terrible burden no parent should ever want to bear. It’s no wonder that an organization who allocates 4 percent of their annual budget to pre-natal autism screening would think this disorder is something a parent could never hope to deal with.
“I think people have to be educated and know that it’s called Autism Spectrum Disorder for a reason,” APSU Assistant Professor of Special Education and coordinator of Full Spectrum Learning (FSL) Gina Grogan said. “There’s a wide spectrum of characteristics. The behaviors, intellectual ability, difficulties, and strengths are unique to all with the diagnosis. I’m amazed at the talents and personalities of the individuals that I work with, and I don’t think that any of them need to be cured of anything.”
Grogan said she believes more money should be invested in help for individuals with autism spectrum disorder and their families, rather than preventative research.
Promoting the mentality that autism is a curse upon families, that autistic children can’t be loved or the world would be better off without autism creates an unreachable standard for society. Instead of promoting acceptance, it preaches fear and ignorance in the face of a condition that, more often than not, is not debilitating.
“Accept diversity,” Grogan sa. “All people, no matter how it may seem on the outside, are more alike than different. If you feel uncomfortable around certain individuals, step out of your comfort zone and get to know them. You’ll never realize how much you can learn from others if you don’t.”
Grogan is currently accepting peer mentors for incoming autism spectrum students for next semester. If you are interested, please contact firstname.lastname@example.org.
This is a simplistic and skewed view of autism and what Autism Speaks is about.
Autism in some cases is a truly debilitating condition that may shorten the lives of those with it. In fact if you read the scientific literature on autism, it is clear that autism is often a biochemical disease which often includes sulfation deficits, methylation deficits, and high oxidative stress. This biochemistry is not healthy and it is laudable to look for ways to ameliorate its negative aspects. Fortunately, researchers are starting to find compounds that address some aspects of it. For example there was recently a double blinded trial of MB12 in autism showing some efficacy. This trial was funded by Autism Speaks and I feel they are deserving of praise for funding it.
With respect to Autism Speaks more generally, it is indeed a big and imperfect organization, but what comes through to me is that they want to get more information out there about autism and they want to improve the lives of those with autism and their families. To me these are worthy goals. At the same time I would quibble with some of their funding decisions. It seems like too much of their funding goes to advocacy work and genetic research and not enough goes to biochemistry and therapeutics, but overall I support the work that they do.
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