By Brian R. King LCSW —
I had the privilege of being involved in a dialogue yesterday that centered around the question, “Do you use Autistic Person or Person with Autism to describe yourself?”
This refers to what many people in the special needs community refer to as person first language. Insisting that the person comes before their challenge and therefore saying they have, in this case autism, is different than saying they’re Autistic.
The conversation that took place around this issue was very interesting and is very revealing about the power we place in how we allow words to affect how we see ourselves.
I wrote a book of poetry in which I reflected upon seeing the world through the unique lens provided by the mental wiring referred to as Asperger’s. The important thing to note at this point is that Asperger’s and Autism are terms created by the medical community to refer to a state of inferior functioning. A state of disease or dysfunction which, understandably, is a strong component in this debate.
The word, Aspie, or Autie are words I’ve heard used by those who’ve been given the label of Asperger’s or Autism as a way to refer to themselves in a more personal and less clinical way. I chose I’m An Aspie as the title of the book and as the name of my company in an effort to humanize the term for myself. However, I have since moved away from identifying so closely with that term as I find it limiting in that it doesn›t fully describe all that I am. I now think of myself simply as a human being.
Ultimately the way a person chooses to refer to him or herself is a personal choice and an indication of how they presently see themselves in relationship to others and the world. It’s a window into their self-concept and the place they are in their journey of self-discovery.
I’ve met many who don’t care for person first language in referring to themselves. “I’m NOT a person with Asperger’s, I’m An Aspie,” they would say. They see Asperger’s as a large part of who they are and not easily separated out.
They see being “An Aspie” as someone else might describe themselves with phrases such as “I’m Irish” or “I’m a Christian.” You likely wouldn’t hear them say “I’m a Person with Irish traits” or “I’m a person with Christianity.”
It can be said that as with being Irish or Christian, cultural and religious beliefs affect how a person sees the world. Similarly, having traits referred to as the Autism Spectrum strongly influences the way I and others perceive the world and their relationship to it.
My Aspergian tendency to see things in a very concrete and idealistic way informs my values and my decisions. The creative way in which I write, speak and problem solve, everything that I am I can attribute in some way to the Asperger’s way of being that is part of who I am, but not all of who I am.
One person stated, “I want to be known as a person not an autistic.” Are you honestly less of a person because of a label. Would you defend your humanity by saying, “I’m not a man, I’m a human being and I expect you to see me that way?” Must it be either or, can you be both a man and a human being? Of course, it’s more a matter of which you give higher priority to.
What’s the big deal?
From the articles I’ve read and the conversations I’ve had, it appears to me that the special needs community is the only group (as far as I know) that insists on being referred to in this way. Some reasons for the preference of person first language are these:
On the one hand there are so many negative assumptions about the Autism Spectrum that being referred to as “a person with Asperger’s or Autism” provides a person with a way to say I’m just like you except for the Asperger’s part.
This perception may increase opportunities for inclusion among peers though I find it unfortunate that one would need to do so simply to be included. Unfortunate, but also an all too common reality isn’t it?
The more frightening reason is the thinking that if a person can be conceived of as separate from the Autism then it is justified in contemplating and even pursuing the objective of separating them from it and even eliminating the Autism completely.
A dangerous belief
My greatest concern is that the more a person demands to be accepted as an Aspie or Autistic with phrases such as, “You have to accept me just as I am and I don’t have to change for you” the more they end up sabotaging the very thing they want - relationships.
What this belief states is that everything about me that’s different from you and keeps us from connecting needs to be embraced, accept it, we can’t connect with you. To believe and defend your right to be inflexible in the way you currently are is to defend the right NOT to grow and learn skills that every human being must in order to become more mature and skilled at navigating relationships.
I have not come as far as I have in life by remaining still, I have only accomplished so much by recognizing when my present skill set doesn’t serve me, then doing whatever it takes to learn what I must to get me where I want to be in life. Easy to do, no, but most worthwhile.
Cure, cure cure
There is a passionate movement in society that is pursuing the notion that Autism is a disease that a person has, that the person wouldn’t miss if it were gone. I hear these folks loud and clear and have spoken to many of them. It often comes down to the gut wrenching digestive issues or other experiences such as hypersensitivity to an everyday experience such as running water. These experiences that cause a child such torture that they are debilitated in everyday life. They are seeking an end to that level of suffering and I support that.
My concern is when the discussion doesn’t end there and moves into ridding the person of anything considered Autisic. I admit, being on the spectrum isn’t a bowl of cherries and I’ve worked to lessen some of my own sensory sensitivities to no avail. The human condition is ripe with endless opportunities to get stronger through the experience of ongoing resistance. Working to rid myself of every challenge in my life, sensory or otherwise, is a foolish endeavor. I overcome some, improve others, manage most and accept the rest.
One thing that pisses me off is when I mention that myself or my children are on the Autism Spectrum and a person’s first response is to whip out a card for their chiropractor or biomedical doctor and recommending I make an appointment. I could do a bunch of name calling and lecture those who do that but instead I’ll simply say this. When someone mentions his or her or his or her child’s autism, ask
“What is that like for you?” You may very well hear an answer that you wouldn’t respond to with “Here, this guy can cure your kid!”
Autism doesn’t always mean paralyzing debilitation, but for many it does. So take the time to find out what it means for the person you’re talking to.
What does it mean for me?
For me at times being on the Spectrum is an exciting place to be when my creativity is really in the zone, my quirky sense of humor often serves to enrich my life and relationships, my unique sensory experiences fill me up in such a way that it seems life couldn’t get any better.
Then there are times when I’m so overloaded that my brain can’t seem to make anything work including speaking coherently and in those moments I want to cry out, “Make It Stop.” Those moments for me, I am grateful to say aren’t the norm for my experience of Asperger’s. Especially now that I’m well beyond public school age where those experiences were the norm.
So what does this have to do with whether to call it Autism or a person with Autism? It has to do with the story I tell myself about these experiences. Do I say I have occasional meltdowns because of this thing I have called Autism, this dreaded monkey on my back that plagues me like a demon I’m possessed by (a perception some people have by the way)?
Or do I tell myself that in that moment I went beyond what my mind and body can tolerate and need time to regroup? Because like all people I can be pushed only so far before exceeding my threshold. How you respond to these moments is very personal depending on just how debilitating and frequent those moments are.
What does it mean to others?
At the heart of the push for person first language is in changing the perceptions of others. What does the term Autism or Asperger’s mean to them? After my then seven year old son and I were certified with the label Asperger’s I decided to share this news with colleagues who until that point treated me kindly and fairly.
After that I was treated like a mentally ill ticking time bomb and was called into my supervisor’s office at which time he bluntly questioned my sanity. I quit two weeks later.
It seems to me that it’s how others respond to the labels that we most fear and rightfully so. People are excluded and sometimes violently persecuted simply because they choose a religious faith that is in the minority in their country. If it were known by others that they were a member of that group there could be severe consequences.
A boy around nine years old I used to work with was terrified his classmates would learn about his Asperger’s because he heard how horribly they spoke about the special needs kids on the playground. He said, “I can’t let them know I’m one of them.” So I can see the real need for some to run from the label of Autism or Asperger’s.
The label isn’t the problem
What I’ve ultimately learned is this. We live in a world were people spend more time in a place of fear than in one of confidence. Our nightly newscasts (which I haven’t watched in years) are little more than the top list of who was raped, murdered or robbed today.
Our politicians want us to believe that all of the problems of our lives are the fault of those who disagree with them and if we side with them our lives will get better. If we don’t side with them we should be afraid of the consequences.
People can be afraid of everything that isn’t just like they are, neurotypical and Spectrumites alike. People use labels to identify the things they like and don’t like, this is good, that’s bad. It’s when we judge a label negatively that problems begin.
Someone who says you shouldn’t label people, labeling is bad, isn’t thinking that statement through. We label ourselves every single day. I’m a father, a husband, a social worker, a son, a friend an aspie but most of all I’m a human being. If there is anything negative or duhamanizing about any of those labels it’s because someone judged it so.
I’m tired of being afraid
It’s true that we live in a world where certain labels can mean the difference between inclusion or exclusion. We also live in a world where persistence can and has made a significant difference in changing minds when those who disagree take the time to talk and learn from each other.
I don’t want to be afraid to say “I’m An Aspie” or anything else for that matter. As I explained earlier, it is so instrumental in everything that I think and do that I can’t conceive of being me without the Asperger’s. Asperger’s isn’t something I have it’s something I am, in part. Saying you “are” something versus saying you “have” something makes a huge difference in how you see yourself.
There are so many things I am that make me who I am. I could say that I have children or I could say, “I am a father.” I could tell you that I have a wife or say, “I am her husband.” I could say I have a degree in social work or that “I’m a social worker.” Though the two phrases convey the same information they feel very different to me. The “I am” statements feel more meaningful, more powerful and more personal.
One person suggested that, “All labels take away the power of personal integrity. A positive label is still a label.” She added that a person should be referred to by their name and no other label. So let’s try this out.
“It’s nice to meet you Brian, so tell me about yourself.”
“Sorry can’t do that. I believe all labels whether positive or negative take away my power and personal integrity so I refuse to think of myself as other than Brian.”
“But how am I to get to know you Brian if I don’t know the things you like to do?”
“Because if I tell you I like baseball you may think of me as a baseball player or someone who likes baseball. Either way I lose my integrity so just call me Brian.”
It doesn’t work does it. What has worked for me is being very clear in my mind that I hold all of the power when it comes to determining what any label I use means for me. When I choose to think of myself as An Aspie it is up to me to explain to others what that means for me. An essential part of what being an Aspie means to me does not mean I am better than or less than someone else.
Yes I am Brian, Yes I am just me, but in order to explain more about what that means I am going to use the word Asperger’s and explain what that means to me as well.
In short, I’m a father, a husband, a social worker, a son, a friend, an aspie but most of all I’m a human being.
I have one last request of you. If someone is different from you please take the time to let him or her teach you about who they are instead of deciding for them based on your own opinions and assumptions.
More often than not, such conclusions are misinformed.
We’re All In This Together.
Copyright 2012 by: Brian R. King (All Rights Reserved)