Hilltops
Hartwick College's Student Newspaper

The View From Oyaron Hill

Autism Awareness: The Month of April, Ableism, and Autism Speaks

04.14.15

Hilary Gruber


As many have made quite public on social media the month of April is “Autism Awareness Month.” People everywhere are showing their support, advocating for awareness, and “lighting it up blue.” But, what if I told you this was all the design of an ableist hate group? What if the people who created this frenzy around awareness, who sprinkle our newsfeeds with ribbons and puzzle pieces think those with autism to be “diseased” or “defective”, what if I told you they wanted to cure something that does not need curing?


Most people who are not in the autism community don’t have a very good grasp of what autism is. When referring to autism we are in reality referring to Autism Spectrum Disorder (henceforth known as ASD), the key word here is spectrum. Every person with autism is different. If you’ve met one person with autism, you’ve done exactly that, met ONE person with autism. Each person on the spectrum is affected differently by autism, some people are non-verbal, others aren’t, some people on the spectrum are incredibly gifted intellectually, others have particular skills and extensive knowledge of one particular subject of their interest.


Everyone with ASD is an individual, it is a diverse community and cannot be characterized as any one thing. The CDC describes ASD as follows: “developmental disabilities that cause substantial impairments in social interaction and communication and the presence of unusual behaviors and interests.” Many people with ASDs also have unusual ways of learning, paying attention, and reacting to different sensations. The thinking and learning abilities of people with ASDs can vary—from gifted to severely challenged. An ASD begins before the age of 3 and lasts throughout a person’s life.

While I in particular am uncomfortable with the statement that the thinking and learning abilities of some on the spectrum are “severely challenged” this is a fairly solid definition for something as diverse as autism.


So what’s wrong with saying the learning and thinking abilities of some on the spectrum are “severely challenged”? It isn’t entirely accurate. While a person may be non-verbal and have difficulty communicating thought, feelings, and needs, or need information presented differently for them to understand, they aren’t “challenged”. The way these people experience the world and process information is different than someone who is neurotypical, communicating and learning conventionally may be difficult, rather than the person with ASD being challenged I believe neurotypical society as a whole is challenged -- challenged to change the way we communicate and think to include everyone. It may come as a shock to some that people with ASD are not inherently intellectually disabled.


The hateful, ableist organization previously alluded to is none other than Autism Speaks. Autism Speaks is probably the best known organization for “autism awareness”, what most people don’t know is their sordid history of ableism, pseudoscience, abuse, and demonization. Not a single member of this organization’s leadership or board of directors is on the spectrum. In 2006, Autism Speaks combined operations with an organization called Cure Autism Now (CAN). This organization seeks to eradicate autism, to cure it as if it is some sort of tragic disease rather than a neurological difference. In the year 2012 Autism Speaks reported $64,127,886 in expenses, a mere $2,048,552 was used for family services, $18,484,028 was spent on the salaries of those who work for the organization. The money spent on services for families is little more than 3% of their annual expenses.


These services include everything from providing communication devices for nonverbal children and teens (a good thing) to Applied Behavior Analysis (ABA) treatment which can and has been reported to be harmful to some with ASD, a simple google search will uncover stories from those on the spectrum who have had ABA, both positive in nature, and truly horrific. Even if some of these services are beneficial, how much good can be done when only 3% of the budget of an organization claiming to help family expenses actually goes to those families? Let that sink in.


Much of the money taken in by the organization is used for scientific research. A quick search of Autism Speaks’ grants indicated that much of their money is going toward research looking for genetic markers and prenatal testing for autism. There is fear in the autism community than such research could lead to the termination of (wanted) pregnancies based solely on the fact that the fetus has tested positive for autism. These selective abortions are also sadly common in the event that a fetus tests positively for Downs Syndrome. Autism Speaks has also in the past done research concerning a link between vaccines and autism. The hypothesis that vaccines cause autism has been thoroughly debunked over the years, despite this Autism Speaks continued to fund research about a vaccine link until as late as 2009. The anti-vaccine movement championed by celebrity Jenny McCarthy is a contributing factor to the current Measles epidemic in this country.


Recently Chief Science Officer for Autism Speaks, Rob Ring, made the statement that vaccines do not cause autism and urged all parents to vaccinate their children. While this is a step in the right direction, Autism Speaks is a little too late to the party.


In addition to the promotion of pseudoscience and minimal services to families, Autism Speaks draws a portrait of autism depicting it as tragic, a disease, and a burden to families with a memeber with ASD. I previously used the word “ableist” to describe the organization, ableism is “the practices and dominant attitudes in society that devalue and limit the potential of persons with disabilities” (stopableism.org).


Autism Speaks is behind a horrific title titled “I Am Autism” featuring shots of children with autism while a disembodied voice describes the hardships, embarrassments, and stolen opportunities an autism diagnosis imposes on a family. The video even suggests that autism is to be blamed for divorce. While Autism Speaks has never apologized for the monstrosity that was this video, they have removed it from their website and YouTube channel It has been reposted by others and is available on YouTube to view. 


The organization is also behind a video called “Autism Everyday” which features parents of children on the spectrum primarily discussing all the things they cannot do because their child is autistic. Throughout the video, the mothers featured discuss how their lives were negatively affected by their child, how it destroyed their marriages, bankrupted them, took the joy out of their neurotypical child’s life. Perhaps the most shocking part of this video is when a mother looks right into the camera and recounts the story of how she wanted to drive herself and her child with autism off the George Washington Bridge because she thought her daughter would be would be better off dead than in a special ed classroom, but did not because she thought of her other neurotypical daughter at home. This woman says all of this in front of her autistic daughter, with no concern that she might have heard and understood her. This video is also online.


So who am I to pen a lengthy, I admit somewhat ranty, article about Autism Awareness month and Autism Speaks? I’m a sibling. My older brother has autism, he is moderate to high functioning on the spectrum. My brother is among the most charming, sociable, ridiculous people I know. He is unconditionally loving, he accepts everyone just how they are, he doesn’t even like to say he doesn’t like a food (opting for “I like it a little bit”). This organization, Autism Speaks, would have you think my brother is a strain on my family. They would have you think he is helpless, that he needs to be “fixed”.


They would have you believe that my brother will never contribute to society. This is wrong, he volunteers in his community, he randomly calls just to check in on me and to make sure I’m doing alright, he says “I love you”. I realize how lucky I am, I know that not everyone with a loved one on the spectrum gets to hear that. On a final note, Autism Speaks demeans, infantilizes, makes assumptions about, and lacks faith in the abilities of people with autism. It’s not an organization anyone who cares about people on the spectrum support. Autism Speaks might speak for ableists, defeatists, and asinine celebrities like Jenny McCarthy, but it doesn’t speak for me.