Autism Acceptance Month

This April, I’m sure there will be a lot of people spreading so-called “autism awareness.” Because apparently, once you are aware that a condition called “autism” exists, you have done all you need to do to help autistic people. Of course, all you’ve actually done is useless posturing to feel good about yourself, and if useless posturing does make you feel good about yourself, then I think you should seriously examine your moral standards. In fact, many people who spread “autism awareness” don’t even know what autism is. The way I like to describe autism is with an analogy. There are two main types of computers: Macs and PCs. Both are computers, but they use different operating systems. Neither is a broken version of the other. They’re different computers with different ways of processing information and different ways of functioning. That’s basically what autism is. It’s a different operating system. Autistic people are people who have a different type of neurology than neurotypical people. However, most people don’t think about it that way. To continue the analogy, they think of a Mac as a broken PC, and they think the solution is to reprogram all Macs into PCs. But if they did that, they would miss the unique abilities and contributions that the Mac has to offer. In the same way, many people want to “cure” autism. They think of autistic people as broken neurotypical people that need to be reprogrammed through things like behavioral therapy. But you can’t reprogram a human being. And if you tried, you would miss the unique abilities and contributions that person has to offer. However, people don’t need to be useful to be valuable. Autistic people deserve to be accepted and valued because they are people, just as all people deserve to be accepted and valued because they are people. Being aware that autistic people exist is not good enough. It doesn’t take any work. It doesn’t do any good. Acceptance takes work. It takes understanding, and actually making an effort to include people in a real and meaningful way. It means accepting that the way you view and process the world isn’t the only one, and isn’t the only correct one. It means working to create a world where everyone is treated equally, and where everyone’s contributions are valued. Let’s stop spreading autism awareness and start working toward something better: autism acceptance.

Autism Awareness: When the World Tells You That Being Different is a Disease

Imagine if the world saw you as a problem. Not because you’ve done anything wrong. Not because you choose to live a certain way. Not because you choose to believe certain things. The world sees you as a problem because you were born a certain way. I am not talking about racism, or sexism, or any of the more well-known forms of discrimination. This one is far more pervasive than those. I am talking about autism awareness. April is considered Autism Awareness Month. Every year, big corporations and so-called “non-profit” organizations such as Autism Speaks pour massive amounts of money into campaigns aimed at stigmatizing, dehumanizing, and eventually, eradicating people like me, people who are autistic. Worse, most of the world goes along with it.

Let me explain. Autism is a neurological condition. People who are autistic are different than people who are neurotypical, which is a word used to describe people with a typical neurology, or, in everyday vernacular, “normal” people. Because of this difference, autistic people and neurotypical people often have difficulty understanding or communicating with one another. Autistic people often communicate differently than neurotypical people. We often learn differently. We often express ourselves in different ways. In addition, we often have difficulty doing things that may be easy for others. In contrast, we may be better at doing things that others have difficulty doing. 

If that sounds to you an awful lot like normal human experience, that is because it is. Autism should be considered normal. Everyone is different, and autism is one of those differences. People always have to work to understand each other and accommodate each other’s needs. It is just part of being human. We are all different. However, many people do not believe in other people’s right to be different. As a result, they believe autism is a disease, or a disorder. They believe autism is something to be cured, and that autistic people are inferior to neurotypical people. 

There are many ways that this plays out. One way is the kinds of therapies that large organizations such as Autism Speaks recommend for parents of autistic children. One of the most popular therapies, Applied Behavioral Analysis, or ABA, is mistreatment at best, and child abuse at worst. In fact, I would refer to ABA as psychological torture. It is done in the name of making the child “indistinguishable from their peers” by forcing the child to stop behaviors that are considered abnormal and do behaviors that are considered normal. The parents are usually lied to by the therapist, told that the child will not be able to succeed in life unless they can “fit in.” The therapy consists of using punishments and rewards to coerce the child into behaving in a way that is considered normal by the therapist. The therapies are non-stop, and are usually recommended to be forty hours a week. Because of the grueling, exhausting nature of the therapy, and the complete lack of privacy and rights for the child, people who have been subjected to ABA often develop post traumatic stress disorder later in life.

In addition, autistic people are not seen by society as fully human. This is most evident in cases of tragedy involving autistic people, especially the incredibly tragic, and tragically not uncommon scenario in which an autistic child is murdered by their parents. In news stories about such incidents, all of the sympathy goes to the parent, who is often portrayed as driven to the end of their rope by the “burdensome” autistic child. The article will often ask the readers for “understanding” for the murderous parent. The child, on the other hand, is portrayed as subhuman, unable to make their own decisions, and someone whose life was so terrible that it was a mercy that their parent ended their misery by killing them. Even if autistic people did lead miserable lives, it would still be wrong to kill them. However, the truth is that autistic people do not lead miserable lives, and if they do, it is not because they are autistic. While it can be difficult to raise an autistic child, (it can be difficult to raise any child) that is never a justification for murder. Autistic people are people. We have the same rights as everyone else, including and especially the most sacred and foundational of all rights: the right to life.

However, even to people like me who never went through therapy or were the victim of abuse, autism carries a stigma. People treat us differently than they do other people. We are patronized, looked down upon, and generally ignored. It’s harder for us to get jobs. It’s harder for us to make friends. The rest of the world sees us as a burden, as problems to be fixed.

So, this April, and any other time for that matter, please do not go along with those who wish to silence, marginalize, and destroy us. We don’t need people to simply be aware that we exist. We need people to accept that we are people, to accept that we have rights, and to respect our rights. Autism does not speak, but autistics do. Not always with actual speech, but with whatever method of communication we use. Do not listen to those who claim to speak for us. Listen to us. 

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.

Please Don’t Light It Up Blue For Autism Awareness

Today is the eighth annual World Autism Awareness Day. Many people, companies, and organizations are raising awareness by “Lighting It Up Blue.” Light It Up Blue is a campaign started by the organization Autism Speaks to increase autism awareness and raise money. I will not be participating. The worldwide influence of Autism Speaks has been detrimental to autistic people. Over the last decade they have spread fear and misinformation about autism, targeted parents, and marginalized actually autistic people, all in the name of finding a “cure.” They say that “autism speaks,” and, “it’s time to listen.” Well, I say that it is time for Autism Speaks to listen. Here are several reasons why you should not support Autism Speaks:

1. Autism Speaks depicts autism as a health crisis

Autism Speaks consistently treats autism as if it is a disease and a problem, rather than a natural expression of the human genome. Autistics are portrayed as problems to be cured, rather than a distinct minority group. One of the most flagrant examples of this is the 2009 video “I am Autism.” Produced by Autism Speaks, the video shows images of autistic children with an ominous voice-over that says, “I am Autism … I know where you live … I live there too … I work faster than pediatric AIDS, cancer and diabetes combined … And if you are happily married, I will make sure that your marriage fails.” It is hard to know where to start with something like this. The last part is a complete lie. Parents of autistic children do not have a higher divorce rate than any other parents. The video is simply propaganda meant to spread fear. Comparing autism to diseases such as diabetes and cancer is incredibly derogatory. Autism is a distinct variation on the brain’s way of functioning, one that, like all others, has its own set of advantages and challenges. The fact that autistic people are challenged in ways unlike those of other people does not in any way mean that they are diseased. It means that they are different. Wanting to cure someone of their autism is the same thing as wanting that person to disappear and to have a completely different person in their place.

2. Autism Speaks uses offensive iconography and language in reference to autistic people

Autism Speaks uses politically correct, person-first language. They call autistics “people with autism.” Now, I understand that most people who talk in this way do not realize that it is offensive. Think about it this way: I am an American male. No one would say that I am a person with Americanness, or a person with maleness. But people do the same thing with autistic people. They also use functioning labels, such as “high-functioning” and “low-functioning.” To autistics, these labels are demeaning. Who decides how a person should function? Who determines what functioning even is? Can someone be ‘high-functioning” in one area and “low-functioning” in another? In reality, these labels are assigned based on how much an autistic looks or acts like a neurotypical, according to the person who assigned the label. (A neurotypical is a person who does not have an atypical neurology.) The meaning of these labels also changes and varies depending on who assigns them. An autistic considered “high-functioning” by one person might be considered “low-functioning” by another. Autism Speaks also uses a puzzle piece as its icon. Once again, most people do not understand how this is perceived by autistic people. The idea of the puzzle piece is that autistics are unable to “fit in” and that part of them is “missing.” Autistic people are only unable to fit in because the rest of the world is intolerant. Their behavior is seen as abnormal and unhealthy, when in reality it is harmless attempts to communicate, or methods by which the autistic can cope with stress. Using the puzzle piece icon shows a profound lack of sensitivity and understanding for the experience of autistics.

3. Autism Speaks supports ABA therapy

Applied Behavioral Analysis (ABA) therapy is a kind of treatment that is meant to modify behavior. A full discussion of ABA therapy is far beyond the scope of this article. However, I will try to explain the basics. True ABA therapy is not what many people think. Because ABA is the only autism treatment that insurance companies will cover, many groups call their treatments ABA. True ABA therapy is therapy that forces a person to change their behavior using both positive and negative stimuli. Here is how it works: let us say that a child was diagnosed as autistic at the age of three. His parents start him on ABA therapy. Most ABA therapists recommend forty hours a week for young children. The therapist will ask the child to perform a socially acceptable behavior, such as eye contact. If the child fails to comply, he is punished. He is rewarded when he does the behavior. It works in reverse for behaviors that are socially unacceptable, such as hand-flapping. If the child does the behavior, he is punished. If he does not, he is rewarded. This kind of therapy is physically and emotionally devastating to the child. He is taught that his way of communicating and coping with the world is wrong. He is forced to do things that he finds uncomfortable and forced not to do things he finds comfortable. After years of this, many autistics can get post traumatic stress disorder. Although they may look “normal” on the outside, inside they are exactly the same. Herein lies the largest problem with ABA therapy. It forces a person to pretend to be someone they are not. People should be encouraged to embrace who they are, while coping with any challenges they may have. Because they support ABA therapy, Autism Speaks is clearly not interested in the rights or dignity of autistic people.

4. Autism Speaks’ structure is designed to benefit themselves and not autistics

Autism Speaks has no autistic people in any leadership position. Despite their insistence that they speak for autistics and desire to help them, they still refuse to allow any autistics on their board of directors or leadership. The people they are trying to help deserve to be represented in their leadership. Their allocation of funds is also highly suspect. Only four percent of their budget is reserved for family services. However, forty-four percent is dedicated to research. This might not sound bad, but most similar organizations use over sixty percent of their funds for family services. Also, the research Autism Speaks is conducting is for the purpose of creating a prenatal genetic test for autism. Just as has happened with Down syndrome, the goal of a prenatal genetic test would be the systematic murder of all autistic children by abortion.

Autism Speaks does not speak for autistics. They present autism (and autistics) as a disease to be eradicated as soon as possible. They knowingly offend autistics, and they support harmful, abusive treatments. Rather than wanting to help autistics, their desire is to eliminate them from the earth. I am tired of seeing people and companies continue to support this group. So please, if you were planning on Lighting It Up Blue today, don’t. Just don’t. We do not need autism awareness. We need autism acceptance.

For more information about Autism Speaks, follow the links below. 

Autism Speaks

Exposing Autism Speaks 

Why Autism Speaks Doesn’t Speak For Me 

Is Autism Speaks a Hate Group? 

For more information about autism rights and neurodiversity, follow the links below. 

Autistic Self-Advocacy Network

Autism National Committee 

Autism Network International