Spreading Fear and Hate is Not Heroic

In April, I wrote a blog post about the organization Autism Speaks, and how they do not serve the best interests of autistic people. Recently, People magazine has made the exceedingly poor and misguided choice of including an article about Bob and Suzanne Wright, the founders of Autism Speaks, in the feature Heroes Among Us. Below is a picture of the article, along with an image description for accessibility purposes.

Image description: Image is a page out of People magazine. In the top left hand corner it reads, “Heroes Among Us. Crusading Against Autism. After their grandson was diagnosed, Bob and Suzanne Wright launched a battle against the disorder” Below in a smaller quote: “We’ve given this voiceless community a big voice,” says Suzanne (with husband Bob, daughter Katie Wright and grandson Christian, now 13)″. The picture is of an older very rich privileged white couple standing to the right side of the picture. They are smiling, the woman is blonde, wearing glasses and is smiling at the camera. The man is looking down at a couch to the left of them, where a blonde-haired mother sits on a couch leaning over an awesomely autistic boy with blonde hair and an adorable smile. Image description by Boycott Autism Speaks. Description has been slightly modified from original to correct errors.

Image Description: Image is of the magazine article. It says: When Bob and Suzanne Wright’s 2 ½ year old grandson Christian Hildebrand was diagnosed with autism in early 2004, they quickly found out how little was known about the disorder. “Basically, [the doctors] said goodbye and good luck,” recalls Suzanne, 68, of Fairfield, Connecticut. Adds Bob: “They had no medical treatments, no real medical advice.” The couple spent the next several months traveling around the country to different autism events. “We saw all these parents, many of them had children who were 10, 11 and 12 who had never gotten any real help at all,” says Bob, 72, the former CEO of NBC Universal. Many had gone broke paying for treatments because their health insurance wouldn’t cover them. “We were so shocked,” says Suzanne. “We came back and said, ‘We have to do something.” And so they did. This year they are celebrating the tenth anniversary of the founding of their nonprofit, Autism Speaks (autismspeaks.org), which has raised millions for research into possible treatments and cures for autism and created toolkits for parents at each stage of their child’s life. But what they are most proud of is that now 41 states have some sort of health insurance coverage for autism treatments. “We had to go state by state, hat in hand,” says Bob, who recently stepped down as chairman of the organization. “It was a real battle.” For the future, the Wrights say they are most excited about MSSNG, a research project with Google that they hope will bring answers about the genetic causes of autism. Parents like Jesse Mojica, whose 16 year old son Adam has autism, couldn’t be more grateful. Besides the practical help he got finding treatment for his son, “there was always somebody you could talk to, to give you emotional support.” says Mojica, 48, of New York City. “It was lifesaving.” Image description by Boycott Autism Speaks. Description has been slightly modified from original to correct errors.

It truly saddens me that such wrong views are called heroism in today’s society. We like to think that we are enlightened, that our collective intelligence is greater than that of past generations, but the truth is this: dislike and fear of that which is different is an injustice that has plagued humanity for ages and is still alive and well. Misunderstanding of autism has led to a widespread belief that somehow autistic people lead horrible lives. Parents of autistics are said to live in constant fear of what their autistic child will do next. It is a shame that people like Bob and Suzanne Wright exploit people’s misunderstanding of autistics and are called heroes. These so-called experts are so unable to understand autism that they classify it as a disorder, and are actively trying to “cure” it. Autistic people such as myself do not want to be “cured.” Being born different is not the same as being disordered and autistic people have a fundamental right to be themselves. Anyone who advocates a cure does not believe this and actively tries to take this right away. Now, some parents will say they simply want their children to “fit in” and be seen as “normal.” This is done by forcing autistics to suppress certain behaviors and cultivate others, for the sole reason of being in line with arbitrary societal standards. Parents will say that unless their children act like everybody else, they will be unable to cooperate with others and be unable to succeed in a career. This notion is patently false. Autistics can learn to socialize, just like anyone else can learn. However, they must be allowed to learn in their own way, and to do it in a way that is comfortable for them. Whether or not their way of communicating or learning is considered “normal” is beside the point. This only proves that while so-called experts may know what autism looks like on the outside, they have no idea what it feels like on the inside. Autistics are not the emotionless beings Autism Speaks portrays them as. We have feelings, just as everyone else does. I know from personal experience that being treated as if you do not have feelings or the ability to empathize is extremely hurtful, especially because even your feelings of hurt are disregarded. This is the great irony of Autism Speaks. They claim to give a voice to the voiceless, but in reality, they silence autistics and teach others to do the same. They focus entirely on parents and the great “burden” of raising or living with autistics, but they completely ignore autistics and the effect their actions have on them. They promote harmful “therapies” and perpetuate damaging stereotypes. Most hypocritically, they refuse to allow autistics into the conversation or their advocacy. And most harmfully, they teach families that having an autistic child will make their life a nightmare. They say that families with autistic people are not really living. In short, Autism Speaks does not speak for me. If they did, they would not spread fear and hate. They would instead combat the harmful misconceptions that pervade our society. They would promote therapies that improve quality of life, rather than modifying behavior. They would include autistics in the conversation. In fact, autistics would lead the conversation. The true experts on autism are autistics. Period. Anyone who has not experienced autism cannot claim to be an expert. Yes, they can know the science, and yes, they can recognize the outward characteristics, but they cannot claim to understand day-to-day life from the perspective of an autistic, and they certainly cannot claim to speak for us. If Bob and Suzanne Wright understood the principles of neurodiversity and truly advocated for autism acceptance, People magazine could call them heroes. But since they do not, I have a message for People Magazine: Bob and Suzanne Wright are not heroes. Spreading fear and hate is not heroic.