What can you say about an advocacy group that loses its only member who is part of the target group they are working for? You would say that group was doing a bad job at working for the people they advocate for. This is now the case with Autism Speaks. For the past few years, John Elder Robison, a man with Asperger’s Syndrome, has been working on the science and treatment boards at Autism Speaks. He resigned just this week. He explains his reasons in this post:
I am not going to summarize what he said because he is capable of speaking for himself, and because he enumerated his issues with Autism Speaks in a succinct manner. I will say this, however: I commend Robison for trying to work with Autism Speaks. Upon hearing about his appointment, I feared he would end up being tokenized(well, he was) and start to tout the Autism Speaks mantra of fear, dehumanization, and stigma. But his post shows otherwise. He went into an organization knowing full well about its PR issues, its issues with allocating funds, and its general unwillingness to listen to the voices of autistic people. It makes me upset that Robison could work for an organization that targets a population which he is a member of and not take anything he tried to say or do with the legitimacy it deserved. From his post, it appears that he spent a great deal of time being frustrated with them and their inability to listen to him. In my eyes, he chose the perfect reason and time to sever ties with Autism Speaks. (For the post Robison is referring to, here’s the link: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action)
For him to see a post like this, after working with that organization for that long a period of time, must have been completely infuriating. It’s infuriating to me, and I don’t even work for the organization. For it to be 2013 and to have one of the founders of the largest autism organization worldwide to call us autistics public health crises, the cause of families breaking up, and consider us general burdens to society is disgusting. This type of rhetoric has no place in 21st Century dialogue. No wonder why so many autistic people think Autism Speaks is evil. Look at what they’re saying about us! For Robison to stay on as long as he did shows that he has more patience than almost anybody I can think of!
Oh, and I find it funny how the science world believes we lack empathy. That we can’t understand what other people are thinking or that we are not considerate of other people’s feelings. So many believe that autistic people’s primary deficit is being unable to understand others and empathize with them. But, even after all of the pushback Autism Speaks has faced from autistic people, whether it be after the “Autism Every Day” incident, or the pushback after the release of the “I Am Autism” video, they still use the same exact scare tactics they used before to promote their organization. It’s as if they’ve learned nothing over the past few years. They have learned nothing about how autistic people feel when they are called public health crises, diseased, defective, etc. They have learned nothing about how to work with autistic individuals in developing the best solutions for mitigating disability and creating a more equitable society for everybody, autistic and neurotypical alike. They have learned nothing about advocacy as a whole. I think we all now know who really lacks empathy…
So, now that Autism Speaks’ only autistic member is gone, the organization can no longer make any claim whatsoever, that they are inclusive. They have gone back to being 100% against the disability rights’ movement’s mantra: “Nothing about us, without us!” Finally, they have thrown away any possibility of being able to have a dialogue with autistic individuals about how to improve our lives.
Are you listening now, Autism Speaks? I doubt it. So, you can go on with your fear-mongering, your dehumanization, and your ignorance. We’ll move on without you.
“If you won’t listen to reason, there’s always…Towanda.”
Jenny McCarthy was just offered a spot on The View, replacing Elisabeth Hasselbeck. McCarthy’s original claim to fame was posing nude on the cover of Playboy. Once she started becoming irrelevant, she began to pedal the idea that vaccines cause autism. She also claims to have cured her son of autism by using a glutein-free casein-free diet. Over the years, she has garnered support from Andrew Wakefield, the author of the now debunked study which supposedly showed a link between the MMR vaccine and autism, as well as many other parent and others in the autism community. Despite Wakefield’s study being debunked because of fabricated data and ethics violations, she still pedals this false idea, leading many to not vaccinate their children, or try other dangerous things, like chelation therapy. Although she is equipped with a Ph D. from the University of Google, many are upset by her appointment.
It makes me glad to know that people are aware of the danger of her ideas, but there are still many who don’t. There are many out there who will cling to her ideas because they are desperate to help their child and she seems to have a solution. However, her solution is not one that is backed by credible science. When told this, McCarthy respond’s “[My son] is my science.” I think we all know why that is a problem.
I realize there are many who say their child received the MMR vaccine and the “regressed into autism.” Although I don’t doubt their observations, they need to realize that correlation does not imply causation. There may be many other explanations for why a parent begins to observe more autistic traits from their child once they reach a certain age. It has been show over and over again that vaccines are not the cause. As of right now, the cause is unknown, but genetics seem to play a large role. Of course, McCarthy continues to ignore this and pedal whatever she wants.
McCarthy is also not the most neurodiversity-friendly person the autism world knows. She speaks of her son receiving the MMR vaccine and “Boom! The soul was gone from his eyes.” Her belief that autism steals people’s souls is highly offensive, and no one should be giving it credence. That type of fear-mongering has no business in any discussion about any population of people. If somebody were to say that about gay people, they would not be given such a large platform as McCarthy has.
One of the things that angers me about the United States is how poor our science education is in comparison to other developed nations. I believe that everybody should be able to read an analyze a scientific journal article (no, not an article in a magazine, like Psychology Today). I think everybody should know how to find credible journal articles on different subjects and, at least, gain a cursory view of what the scientists were trying to study, their hypotheses, their methods, their results, and their conclusions. Yes, a lot of journal articles are in very specialized fields and you’d be lucky to understand even 20% of what they’re writing about (believe me, reading studies on proteomics and biotechnology is really hard!), but 20% understanding is better than 0%. I believe all people should be exposed to journal articles at the High School level. A strong knowledge of science and the scientific method should not put you in an exclusive club of people. If the United Sates had a better understanding of science, people wouldn’t turn to a former playboy model with no scientific background for advice.
“If you won’t listen to reason, there’s always…Towanda.”
Recently, Seattle Children’s Hospital plastered ads on city buses which featured a young boy smiling, with a caption reading “Let’s wipe out cancer, diabetes, and autism in his lifetime” next to his face. These ads drew the ire of ASAN, which, rightfully, took offense to the ads. Last Friday, Seattle Children’s Hospital apologized for offending people and said that wasn’t their intent. The ads are being taken off of the buses.
While I’m glad that there seems to be some progress in how people take into account the feelings of autistic individuals and work to make things right, it is still unnerving that these ads are even put up in the first place. The ads are a reflection of the typical conversation being had about autism: one which does not include autistic people and one which views autism as an appendage.
If somebody were to have asked an autistic person how they felt about the ad, it probably would not have been displayed in the first place. The mainstream view of autism is still one that paints autistic people’s lives as tragic burdens and people who need a cure. That view is changing, but slowly. People are seeing the need for acceptance and inclusion, but don’t seem to know what those two words mean. Many seem to think inclusion of people with disabilities means some kind of token inclusion, like what occurred with Jason McElwain when he was allowed to play only in the last game of his basketball season, despite being registered as on the team and having a uniform. While I’m glad his talents were finally recognized, I wish his coach would have presumed competence and allowed him to play throughout the season. So, when I say inclusion and acceptance, I mean full inclusion and acceptance, like you would do with any other student. By extension, when I speak about including autistic people in the conversation about autism, I mean full inclusion: in social policy, in scientific discussions, and in discussions of supports and services. It’s the right thing to do.
The ads also propagated the idea that autism is something that can be separated from a person. I have gone through this in other posts (see this post for more detail) and have spoken about how the ideas of cure and recovery don’t really say what people think they do. But beyond those ideas, many autistic self-advocates will say that autism is an integral part of who they are. Many also have said if somebody were to eradicate the autism from their brains, they wouldn’t be the same people. It’s not a very hard concept. Autism is not a disease. Autism is a way of being; parts of it good, and parts of it bad. More and more people are coming out and saying the same thing; it’s time for these voices to be listened to.
Unfortunately, there is still a startling lack of respect for autistic voices. Autistic voices continue to be ignored, despite many instances of pushback against offensive ads or programs, such as NYU’s Ransom Notes Campaign or Autism Speaks “I Am Autism” ad. It is frustrating that these types of situations still occur, but I have to remember, progress is a “slowly moving turtle-mobile” and there is a lot of work that still needs to be done. I know we’ll get there; we just need to keep pushing forward.
“If you won’t listen to reason, there’s always…Towanda.”
Many people with cognitive disabilities and differences get caught in this position. They identify themselves as having a disability and speak about how it affects their lives, only to have the people they are speaking to dismiss what they say. They will say things like, “This person has this label and he/she/ze can’t do A,B, and C and you can. Therefore, your problems aren’t so bad and you’re not really disabled.” The person’s opinion doesn’t count in these people’s eyes. On the same end, these people will speak about the their opinions about the disability. The person with the disability will bring up points they disagree with or they find inaccurate. The response to that is often: “Your disability precludes you from really understanding what we are trying to say or do.” or “We’re not talking about you, we’re talking about those people.”
Wrong. You are talking about that person.
There are many points I need to address about these scenarios. I’ll first start with the idea that a person is not really disabled if they are able to do A,B, and C. It assumes that all people diagnosed with a certain disability have the same strengths and weaknesses. They do not seem to recognize the individuality of people who are diagnosed with a disability. A common phrase in the autism world is “Once you’ve met one person on the spectrum, you’ve met one person on the spectrum.” People abilities and disabilities are going to be different, regardless of what label they are given. The whole premise is false. I also need to address how the person saying that the person they are talking to can do A,B, and C, when they do not really know if that is the case. In speaking with my advisor at my undergraduate college, I brought up how autism researchers don’t always listen to autistic individuals. She responded by saying that these people are working with people who bite themselves and not really the people who are speaking out. Part of me wanted to say “I bite myself” back, but, I wasn’t willing to be open about my more personal issues, for a multitude of reasons. I’ll say this now: there are times where I do bite myself. It helps me to relieve anxiety. I have never broken the skin, though. I admit to having things easier than most other people who share my label. However, the fact that I do have it easier than other people does nothing to diminish the issues I do face. The facts that I graduated with honors from one of the best colleges in the United States doesn’t inherently make me remember to always make eye contact. You can’t just dismiss me as not being disabled or different enough when I make my opinion heard and then turn around and say I am too disabled or different to question some of your motives. This happens too often to too many people, and it needs to stop.
People need to be aware that high educational achievement and cognitive disability or difference are not entirely mutually exclusive. Temple Grandin is autistic and has a PhD. Einstein was believed to be autistic. John Nash, one of the greatest mathematical minds of our time, has paranoid schizophrenia. People shouldn’t assume that a person’s ability to do one thing easily does not necessarily mean they can do another thing, or that they don’t have certain issues of their own. I say, let’s get rid of the disability catch-22 and start having real conversations about disability.
“If you won’t listen to reason, there’s always…Towanda.”
The concept of “passing” is not just a concept that relates to autistic people. Throughout history, many different groups of people have had to pretend that they are something they are not in order to be accepted in society, or, to simply survive. Jews having to pass for Christians, gay people having to pass for straight, trans* people having to pass for cisgendered, among a multitude of other example. I can’t possibly name every example, but I think you get my drift. A majority of people have, at least, a precursory awareness of the examples of “passing” I have stated above. However, that it not the case when it comes to autistics. Most are not aware of the amount of time and effort many people with autism put into “passing” for neurotypical.
From a young age, often times, between the ages of 18 months and three years old, children who a labelled as autistic are placed into behavioral intervention programs. These programs teach these individuals acceptable behavior and how to act in certain social situations. Although it is the case that all children are taught proper manners and behavior when they are young, they are generally not expected to act in ways that are unnatural for them. They will only be punished for behaving badly. On the other hand, autistic children are punished not only for behaving badly, but also for behaving in benign, yet atypical ways. If a person flaps their hands, they are punished for it. Sometimes, the person gets their hands held down in tacky glue for flapping their hands. If an autistic person doesn’t make eye contact, a teacher grabs their chin and makes them make eye contact. The fact that eye contact makes many people with autism uncomfortable (Dalton, et al., 2005) doesn’t matter. Making eye contact makes a person look “normal”, and that is all that matters. The person ends up spending their entire life trying to remember all of the rules for looking and acting “normal”, going through painstaking processes daily in order to keep up appearances. There is no other option. In this day and age, people are required to do this if they want to get anything substantial out of their lives: To go to school. To go to a store and buy something without stares. To go to college. To get a degree. To get a job (and by job, I don’t mean a minimum wage job stacking boxes).
Autistic people are, generally, not free to express their emotions in a way they see fit. They are expected to conform and make changes that most others are not expected to do. This isn’t because their behaviors are detrimental to themselves or other people, it is because the behaviors simply “look weird.”
What occurs isn’t fair. There is no distinction between bad behaviors and atypical ones in most people’s minds, and that had to be changed. My general point to therapists, parents, and others who care about autistic children is this: replace bad behavior, not atypical behavior. Learn the difference between the two. Yes, at times, these terms are not mutually exclusive, but there are times when they are. If you make this distinction, you will be doing more to affirm to your child that it is ok to be them, and that’s a good thing. To others, I’m asking you to acknowledge the amount of work autistics have to do every day in order to fit into the world. Practice tolerance. Be affirming. Understand that there is no one correct neurology and no one correct way to behave. Be an ally. Be a friend.
That’s all for now. Until next time, “If you won’t listen to reason, there’s always…Towanda.”
For the past few years, autism groups have been spreading awareness about the condition. They want people to know the signs and the symptoms and to make sure children receive proper interventions. At this point in time, I think most everybody is aware of autism. However, people are not really aware of what autistic people have to say. The conversation about autism has been and continues to be dominated by neurotypical individuals. Autistic adults have been given almost no say in matters that affect them. Although I don’t claim to speak for anybody, I will be writing based upon what I have read and seen from autistic individuals. My research has showed me a large majority of autistic people, speaking and non-speaking, advocating for the concept of neurodiversity.
Neurodiversity is the idea that different neurological conditions are natural human variations and, rather than trying to find a cure for the conditions, we should strive for greater acceptance and tolerance of these differences and find ways to better support these individuals within a predominantly neurotypical world. The main assertion is that these is no one “correct” neurology, and that people should not be forced to give up natural aspects of who they are in order to be accepted by society.
There are a few common misconceptions about the concept of neurodiversity. The first one is that supporters of neurodiversity are all “high-functioning” and don’t know the pain of being “low-functioning”. Apart from my disdain for functioning labels, many people who support neurodiversity have been considered “low-functioning” by the medical community. The second misconception, which is related to the first, is that supporters of neurodiversity are ignoring the negative aspects of their condition. This also is not true. There are many who have written about the negative aspects of their condition, including Amanda Baggs and DJ Savarese. However, the largest misconception surrounds the anti-cure standpoint of the neurodiversity movement. There have been times where I have expressed the anti-cure standpoint and have had people accuse me of saying that their child wan’t good enough for a cure. That is not it at all. As Ari Ne’eman has said before me, “anti–cure doesn’t mean anti–progress.” Most people who advocate for neurodiversity advocate for reasonable treatments and therapies, such as speech therapy and occupational therapy. They advocate for greater access to education and for better quality of life. The main belief is that people can lead full and fulfilling lives while being autistic. The reason why people are anti-cure is because they believe eliminating autism would be like throwing the baby out with the bathwater. Everyone sees autism as a disability, everybody is aware of the negative aspects of autism, but autism, in reality, is a mixed bag, and that is what many don’t see. The neurodiversity movement basically says that autism isn’t so cut and dry, as most seem to think it is.
This movement is important because it is made up of autistic people speaking for themselves, along with their allies. It is also important because it raises issues that were once not heard about. There has been a rise in autistic people speaking out for what they want, and the general sentiment is one that supports the concept of neurodiversity. The concept of neurodiversity gives validation to people who have not been previously validated. It shows people with diverse neurologies that it is ok to be them. I believe it is important for people to be able to fully embrace who they are.
I’ve really only scratched the surface on this subject. Also, I need to note that the concept of neurodiversity does not only apply to autism. Neurodiversity can be used in speaking about a whole number of conditions, such as ADD, ADHD, depression, etc. I hope this is something people can chew on for now. Until next time, folks, “If you won’t listen to reason, there’s always…Towanda.”