Tuesday, August 10, 2010

A Rose By Any Other Name: The Right to Define Oneself

There is something that I am going to address that seems to be a problem within the autism community, no I am not talking about the vaccine issue. It is about the mindblindness of the high functioning autism community. I am not referring to the mindblindness in the traditional sense of the inability of an autistic person to read someone else’s persona, but the idea that so many in the hfa autistic community cannot see beyond what they perceive to be the way to approach and function in life. It is an interesting development that I have come across recently and it truly seems to be starting to be a problem. You can actually go to the facebook page of the Autism Women’s Network to read a discussion between myself and some members of the Network in response to a blog I wrote that had been posted by AWN. Many resented the fact that I wrote that the boys are more than their autism and that somehow it meant that their autism made them less. I tried to explain to them that it did not make them less but it was not how they were defined. My explanations did not get through unfortunately and were summarily rejected.


Here’s the interesting thing about that discussion, while I did not take offense at how these individuals choose to see themselves, they took offense that I did not raise the boys to view the world as they did. They took offense that I did not raise the boys to be “autism pioneers” and that I taught the boys to be involved in the society at large. They resented the fact that I don’t consider autism the deciding factor in how I teach the boys to view their lives and who they are. The truth is, and with all due respect to them and those who agree with them, that is how you perceive the world. You are entitled to perceive the world anyway that you would like. You can call yourself and attach yourself to any definition of your person that you would like. But you do not have a right to tell me and my boys how they are to perceive themselves.

The reality is that as the boys’ parent I am entitled to raise them with the perspective that I think is appropriate just like any parent is entitled to do for their children. If I do not want the boys to consider their autism a major part of who they are but just understand that it is a small part of theirselves, then that is my right. If I want the boys to consider themselves human beings first and foremost and not autistic human beings then that is also my right. Granted when the boys are fully grown and live their own lives, they will decide who they are and no one, including myself, will be able to decide these things for them. But as they grow it is my job to make sure that they understand that they are their gifts as well as their issues and that these characteristics are who they are. But issues and gifts are not mutually exclusive to each other and that it will neither prevent nor relieve them of the responsibility of trying to make themselves happy and lead a successful life.

Now by successful I also do not mean financially only. Yes, the boys need to be able to financially provide for themselves. I am also hoping that someday they find a partner and build a family. They need to be able to provide for that family and if it is only a life partner then they should know how to care for each other. Also success means finding a career or purpose in life that is fulfilling. The boys have the right to decide in what direction they want their life to go and what actually makes them happy.

What I found so disturbing in the discourse was that many of the persons with whom I corresponded did not seem to be able to view the world as I see it. They decided that everything they do is because of their autism and they refer to themselves as “autistic X.” They also reject the idea of what is a human being and felt that a new paradigm needs to be established. They also challenged my thought process because I choose to raise my children with a religious background and I assume that is because they reject religion. Again, the boys are not just one thing and one thing only. They are the culmination of eons of genetic evolution and what they are able to do is because of the confluence of all of their genes not just the supposed 27 that may have something to do with autism. While their autism may give them a different perspective when it comes to their artwork, it is not what made them artists. Their artistic ability comes from a genetic predisposition to art which has been handed down through the generations. Just as their intellect comes not from their autism, but is again handed down through eons of evolution.

On the other hand their autism is what gives them the ability to think outside the box when it comes to viewing history or politics but it is not what gave them the ability to think and understand. In fact in many cases their autism prevents them from understanding the abstract reasoning associated with higher math and science and has inhibited collegeman from pursuing his love of forensics. So if he wants to continue or change to a science major he would need to find a way around this deficit and find the willpower to work even harder at school than he already does. So the choice is his and he will decide what he will do in the future and how he approaches his education. Right now it is why he chose a history major and a law minor. But that can change at any moment as well. We support him with whatever he wants to do. That is our job as his parents and no one is going to tell him he can’t or he shouldn’t because of his autism anymore than trying to tell him how he should explain himself to the world.

The fact is that no one is going to tell him how to describe himself or where to put his energies. It is fine if those in the HFA autism community want to lobby Congress or rally in Washington, or participate in Walks for Autism. The boys do not. They want to help feed the hungry, fight to help those in Darfur and support the State of Israel in its quest for survival. No one in the autism community has a right to tell them that they can’t or that their job is to make sure that everyone around them is aware of their autism and that their job in life is to teach everyone that comes in contact with them about autism. If those within the HFA autism community want to live their lives that way, then they have that right but they do not have a right to dictate to others what they should do or not do. Members of the HFA community do not have a right to demand that others hold themselves up as the autism poster child just because that is what they want to do with their lives.

They also don’t have a right to say that because we do not define the boys as autistic human beings but as human beings that we are ignorant or prejudiced or ashamed of our children. Perhaps that is the feeling that they received from their parents and the people around them, but it is not across the board and quite frankly I resent that. In fact I would say that it is downright insulting. Again so many members of the HFA community are unable to view the world outside their bubble and cannot understand that there are different parents, upbringings and perspectives. The mindblindness that I spoke of earlier.

To say that the reason we don’t describe the boys as autistic human beings is because we want a cure and we are too stupid to know that there is no cure is also insulting. I have news for all those in the HFA autism community, YOU BET I WANT A CURE. It does not mean I don’t love them or that I reject the boys. What it means is that life could be a lot easier for them and that they have a right to not have such problems and emotional upheavals and trauma in their lives. The simple act of being able to speak in class or meet new people without climbing into a mental shell or to simply transition into a new school year without having seizures or tics would be a great thing and a terrific way to start eradicating autism.

Furthermore, for some of my friends with nonverbal children, a cure would be nice if for the sheer fact that their children could make their needs, likes and dislikes and desires known so that you didn’t have to guess what the problem is or is not every moment of every day. You never understand how it is such a simple act of saying you prefer chocolate milk as opposed to plain milk as an extension of someone’s humanity, but, so many cannot even communicate that. Do they not have that right? Who is the high functioning autistic to say that these severely affected people do not have this right and the autism community does not have a right to desire a cure in order for an individual to one day accomplish this simple act of personhood. (This is just a tiny example of one act of self-actualization, not the defining act of personhood, so please don’t write inane comments below.)

I think in this respect so many in the HFA autism community only see autism from their perspective as well. They resent the idea of a cure as if something is wrong with them. They resent the attenuation of the concept of normal and want it redefined. Sorry guys, there is normal and there is appropriate and there is how things are done in society. This does not mean that your struggles and your needs should not be met by society but the quest in life to better everyone’s existence is not simply about you and your autism. Autism is a huge spectrum and everything isn’t just about you.

An interesting event took place once for the boys. They were being tested for a genetic research project and they asked the tester why they were there. She told them that they are looking for a cure for autism. The boys told her that they did not want to be cured, that they liked who they were. She explained to them that they were the lucky ones and that they are truly rare in the autism community; that there are some people that are so affected by their autism that they not only can’t speak but injure themselves, live as adults in diapers and have no true understanding of the world around them. As children they understood this message. The question is why the HFA autism community doesn’t see it.

When I was studying in Israel, as a teen, the teacher asked how we would define ourselves. I spoke up that I define myself as “Jewish human being” because the world sees me first and foremost as a “Jew” and a human being second. He responded that that is how the Nazis also saw us, meaning the Jewish people. (By the way it is also how the Nazis saw the disabled as well, as disabled first and foremost without any sense of humanity. Remember the Nazis experimented on the disabled to find the best and most productive way to kill the Jews of Europe in their quest for the Final Solution.) The teacher proffered that just because the world sees you as something other than a human being that that doesn’t mean that you are not a human being first and foremost. Well I have extrapolated that to include my children and their autism. They are first and foremost human beings, not autistic human beings, and the world is obligated to treat them with respect not because they are autistic but because they are human. Additionally, that includes the HFA community respecting their right to not consider themselves as autistic anything other than it being just a small part of their persona, if they even want to include autism as a part of the definition of who they are at all.


Until next time,

Elise

For those who do not understand the title, it is a play on words from Romeo and Juliet the balcony scene: