Wednesday, June 5, 2013

Beyond Awareness

The last few days I have struggled to try to understand a lot of feelings that have been washing over me. I have felt increasingly frustrated by the lack of understanding about the nature of Asperger's that I see exhibited by the parents of aspie kids and the autism researchers. It seems that we have finally achieved "awareness" about ASD, and I guess that is good. I fear however that awareness is not far enough. It seems that after awareness, acceptance is needed. As I have often said, I don't believe that it is productive to try to cure autism; autism should be celebrated. I am autism... and autism is part of my very person-hood; autism and I are inseparable. Accept autism, and you accept me; reject autism, and you reject me.
I find that people assume that I dislike Asperger's. Actually, I do not mind it... unlike the distractability that I face from ADD, the traits of Asperger's give me far more pleasure than pain.
As I have also discussed, some of us feel that we are pushed by the normal people around us to accept that we have a disease, a disability, and the idea that we need to become more "normal". We feel in this line of thinking that the NT's around us do not grant us full humanity, and that their efforts to make us more normal are efforts to "restore" our humanity. All of this is part of the lack of insight about ASD that frustrates me. I do not understand how many researchers and parents have been around us for decades, and yet still miss basic truths about the very nature of autism.
ASD is really quite simple; it is a condition, not a disease. Asperger's does not kill or maim, it is not progressive, and harms no one. Autism is a difference in thinking, not strictly a disability. When we use the term disabled, we infer that ideally, that disabled "something" should be fixed. When something is part of my very being, my humanity, and you call it a disability, it makes me less human. I resent that some say might dare to say that I, the person Calvin Johnson, need to be fixed. Just as insulting, many parents are convinced that it is a deep hardship and burden to have an aspie kid. I could take you to any number of websites where parents log in to moan and cry about their ASD kids and play the hero for being so noble as to love these unlovely kids. This makes me deeply angry as I realize not only that they misunderstand and don't appreciate their kids, but that they consider me to be a flawed human also. If one is trying to research ASD it becomes painfully obvious that these kind of feelings, that Aspies are somehow "flawed" and need to be cured, are very widespread both among parents and teachers.

The other day I made an educational mistake; I expressed these raw emotions to a group people in a Facebook Asperger's forum. You see, I was sick of seeing parents of Aspie kids misunderstand their kids. It is inconceivable to my curious, analytical, and sometimes robotic mind how anyone who had raised a child with Asperger's to near adulthood or researched it for decades could misunderstand Asperger's unless they didn't want to understand it. Alas, I was wrong, and I should know better. The reaction I got was quick and (for the normally mild-mannered group) quite harsh. I was told by the parents that they felt judged...

I don't want to judge, but I am sick of seeing Aspie young adults treated without respect. Before I vaguely say "I see it all the time," let me show you a few anonymous Facebook posts by young adults asking for help:

"My parents call attention to anything I do that is "strange" even in my own home, like walking funny, or mumbling, etc."
-18 y/o boy

And how about this longer one:

"I was diagnosed with Asperger's when I was 17. It was my first year of college. I am now 24 and my parents still deny I have Asperger's. My mom, specifically, thinks I am just retarded. She tells me what to wear, what to say, and what to do. When I ask her if she thinks I am retarded she gives me a nod and a look indicating that she does. A few times she said I needed to be put into a hospital because I am not "normal". She also has to point out all of my flaws, which she does practically everyday. "You don't smile enough." "You are so ignorant. you couldn't even say hello?" "Look at them when talking." "Can't you speak more quiet and soft? Your voice is giving me a headache." "You are speaking too fast. You need to learn to speak slower so people can understand you." "Why can't you dress like everyone else?" "No wonder you can't get a job. You can't do anything right." When I tell her how she makes me feel she gets upset, an argument starts, and she claims to be having a heart attack. My dad always takes her side. When I try to remind them I have Asperger's and try to explain it to them my mom is the first to respond. "Don't tell anyone that! Everyone will look at me and feel sorry for me!" I don't know what to do. How do I make them understand and treat me with respect?"

Before you dismiss these cases as uncommon and tell me that these are uncommon cases and that no parent you know would act that way, let me assure you that these are not isolated instances of rogue parents. Among my Aspie friends who are young adults, their parents are often judgmental  critical, and often tell them things like the above post. Many of my Aspie friends that are young adults are hurt frequently by their parents lack of understanding and these continuous negative comments made by family often cause them depression and anxiety. Even one of my family members complained to me that my mannerisms "bothered him and ruined the atmosphere". When I pressed as to what I could change, he grumbled about a few non-specific things and alluded that it was just "something about me". Ya I know... that something is called Asperger's. Sadly, it seems that frequently our own families are unable to accept us. What is sad is that in many of these instances the problem is nothing more than the fact that the NT person does not like the way we do something.
Loneliness is a problem for the person with ASD not simply because I cannot communicate, but because even when I communicate, others frequently cannot relate to what I am saying.

So what is a disability, and why is Asperger's considered one? In a blog, a person with Asperger's who is from New Zealand says "I am endlessly fascinated by the idea that many professors, computer geniuses, mathematicians, teachers and physicists are aspies and yet Aspergers is viewed as a disability. Society says we are other than the norm, but chooses not to use the word difference. The autistic spectrum is a disorder according to the bio-medical model." This blog focuses on the way the author feels that society makes that person with Asperger's feel less human by focusing on disability instead of understanding a difference. I have often wondered what would happen if we called non-musicians  "disabled" in the sense that they have a "sensory deficit" that does not allow them to understand and play music. I could even cite similar reasons to believe that NT's suffer from a disability that makes them illogical and emotional. Of course, this would merely be using a flawed model of disability. To believe that the idea of disability is a better description for autism then neurodiversity and difference, is to ignore reality. Like most Aspies, I even have many areas of skill that are pronounced. Strangely, I think that people tend to believe that these skills are in spite of ASD; in reality, these unique skills are not in spite of ASD, they  are because of ASD.

It is often said that the autistic person has no empathy. Nothing could be farther from the truth.
If their is any aspect of Asperger's that is a disease or a disability, it is the interaction between the autism, and the normal social and cultural environment. In general people with asperger's get along quite well with other adults with Asperger's. It often is a often the inability to find suitable and accepting friends, not an inability to socialize. Read correctly, this means that any disability must be thought of as an interaction, not as a disease. This fundamentally changes our view of Autism.


  1. Dude this is nothing much short of brilliant.

  2. Fantastic piece! I have shared on my profile, in Aspie groups I am in and on my Facebook page. Thank you! You have a way with words.

    1. Thank you for your encouragement Kezza. I hope you will share concerns and problems that you see in my posts with me, as I am trying to move beyond simply having a point of view about autism to truly understanding autism. Any positive or negative feedback is appreciated

  3. Thank you for this post. As a parent struggling to get society to respect my child and accept him for who he is and not who they want him to be has proven to be an enormously painful task. On one hand I want him to feel like he is a part the group on the other hand I am angry that he is expected to "fit in". Why can't he just be loved and accepted for who he is?

    1. Aspie Mom, thanks for your post... I'm glad to hear that you are asking the right questions and thinking the right thoughts. I'm sure your kid deeply benefits from having parents that are loving and understanding of his autism. Do you have any advice or tips for other parents? I'd like to know what they are...