You Say Tomato, I Say Tomatoe. So What?
Posted on April 5th, 2013 in Autism, Asperger’s syndrome & related conditions, JKP news
Best-selling JKP author Liane Holliday Willey (Pretending to be Normal, Safety Skills for Asperger Women, and others) is credited with coining the term ‘Aspie’ to describe individuals with Asperger’s Syndrome. Here, Dr. Holliday Willey weighs in on the semantics debate within the autism community over the term.
I am a psycholinguistics professor. I like to study language acquisition and the way people use language to express their thoughts. I’m particularly interested in semantics, metaphor analysis and perspective taking. I tell you this because it helps me explain why I chose to label myself an Aspie rather than a person who has Asperger syndrome. My basic premise is simple. The word Aspie is just that—a word. One word. A simple noun that easily snuggles into a sentence with little effort. It is far less cumbersome to say (or write) “I am an Aspie” or “Aspies find it difficult to understand non-verbal language” than it is to say “I am a person who has been diagnosed with Asperger syndrome” or “People who are diagnosed with Asperger syndrome find it difficult to understand non-verbal language.”
You see my point? The word Aspie is short and sweet. I talk fast. I write fast. I think fast. If I were a musical notation I’d be a staccato not a slurry legato. If I were a bird, I’d want to be a hummingbird that flies around here, there everywhere within a blink of an eye. I’d be very depressed if I found myself on the opposite end of the bird world, stuck inside the feathers of a big ol’ turkey lumbering to get off its feet to nap in a nest. Now before someone thinks to reply with something like, “Wait, is Holliday Willey saying if we don’t like the term Aspie, we are stupid turkeys?” let me remind you, I’m a writer who likes to use images to express myself. Nothing more. There’s no subtext here. Just a picture of two birds, one little and fast, one big and slow.
And that brings me to my next point. Subtext. Semantics. I often read debates and declarations making the point that the word Aspie implies a superior mindset, as compared to for example, someone who has been labeled as autistic. I urge caution when or if this thought occurs, because it may well be an example of erroneous perspective taking. I personally know no one who thinks being labeled Aspie means we are better than, superior to, or more capable of anyone on any measure. I suppose there are those who might use the term Aspie to give themselves a feeling of comfort they may not have if they called themselves autistic, but that’s their choice and I won’t let it define who I am or how I define the word Aspie. Conversely, I hear from people who think the term Aspie makes too little of life with Asperger’s syndrome, that using this simple word belittles the challenges or makes those with Asperger syndrome look like a lump of lemmings who are all identical in their needs and wants. I don’t understand this point of view. Again, we’re talking perspective taking. Seriously—how in the world does a five-letter word create such havoc?
I’m often credited with being the first person to use Aspie in print. If that’s the case I have the right to define the word properly and here it is: Aspie—a person with Asperger syndrome.
That’s it. Please, let’s not waste our precious time debating the merits, the semantics, or the use/disuse of five little letters. Don’t we have far more important things to concern ourselves with such as health care for those who aren’t receiving it? Insurance coverage for individuals with special needs? Civil rights for anyone who is being denied them? Satisfying employment, academic equality, equal opportunity housing for all? Acceptance, understanding and celebration of differences?
Look, I don’t care if a person wants to slow their tongue around an entire bunch of words to express the fact they have an autism spectrum difference. I’m just saying those of us who choose to say Aspie should be free to have the same liberty of self-expression. Let’s not let this word, any word, make us fight amongst one another. To each his own. Isn’t that the best sort of motto for we with a difference? Isn’t that what diversity is all about?
Christmas is coming. It's two days away. I'm about two minutes from a total breakdown.
As hard as I try, I can't master the simple things other people do with relative ease. Getting a dinner prepared so all the dishes come out at the same time- impossible. Making my family happy at the same time - impossible. Taking care of my business at the barn and my daughters when they are home at the same time - impossible. Getting enough sleep without wanting to still take a nap - impossible.
Stress, anxiety, worry, concern, thoughts of imminent failure, knowing I will indeed screw up, start an argument or be made fun of because I've missed the big point or not seen the joke like everyone else does, I feel like I'm standing under the electrical wires about to be brought down by an ice storm. Yet, ironically, I know I am blessed and have so much to be thankful for. So much to be excited about.
Thing is, the holidays make lots of people feel torn between good and crap. This isn't an Aspie only feeling. Most of us humans are going to feel pulled between missing those who are gone, wishing we had more of what we think we need or believe we want, less pressure, a more rewarding way to spend our days, and a gentler place to sleep at night. In other words, I suspect everyone is dealing with their own demons and challenges during the hyped up holidays.
I wish we could all pick the day we wanted to celebrate Christmas or Chanukah, birthdays or anniversaries. I wish we could pick the season, the time and the place to give thanks and rejoice. Having to follow the expected curve of when and how, is too much for people with ASD who do things in their own time in their own way.
I think I'll celebrate Christmas next June. Maybe then I'll be able to enjoy the reason for my Christian season and hold on tighter to the love I may get from those who care to give it. To all of you who are celebrating whatever faith you follow during this winter season, know you are not alone in your tightrope walk. I understand. Many of us do. You may feel alone and overwhelmed, but gather strength in knowing that's about as normal a feeling as any feeling can be!
Here's hoping life is treating you well, whoever you are!
In response to Suzanne Wright's Call for Action op-ed (you may view her words on the Autism Speaks website), I have this to say:
I know full well the emotional, physical and financial cost that lurks front and center, as well as behind the scenes of autism. My father, daughter, cousin's children and cousin's cousin's children have some form of autism. So do I. Not one of us, nor any of the tens of thousands of people I have interacted with from all over the world through the past decade and a half would describe our children or our autistic friends in the terms you do, Mrs. Wright. We too wish for more support, better futures, a fine moral response to our challenges, but we wish for this plan to be seen from a place of hope and promise, of recognition of the things that are possible and grand when autism is part of our plan. I and countless others, wish for a plan that focuses on our strengths, not our fears nor our weaknesses. Yes, we need financial support for therapies and counsel and comfort just as anyone who has a challenge before them does. However, please change your rhetoric from "those who can't or won't" to "those who can and will".
Please see our community as an asset, not as a forlorn and strangling liability. We are assets that may well need hands held out for assistance toward our goals and abilities, but we are not (and please read this with emphasis) in need of hands held up to block us with the message that implies "You people with autism are nothing much more than a burden on us and until you are reprogrammed to be just like everyone else, we cannot tolerate the toll you put on the rest of us."
Your commitment toward helping people with autism live safe and secure lives, is to be applauded. Your commitment to the belief that the autistic community is a community built on crisis rather than promising possibilities, is deplorable.
I just finished a conference for peer mentors. It was one of the most empowering and wonderful experiences I've had before a group. I was uncertain about the audience until moments before I began my presentation. The fact I'd be speaking to peer mentors representing every special need, not just autism, made me quite nervous. This group- they were the real deal that could judge me on levels others could not.
I wrote my daughter just before speaking, telling her how nervous I was, how apprehensive I was knowing I'd unintentionally offend someone because I wasn't clear about all the new codes and lingo. Would I say the wrong word that sparked sadness or chills? Would I use an antiquated phrase that was accepted as standard years ago, but is now fraught with bad images and ill will? Would I hurt someone's feelings?
Yup. I did. At least I thought I did. I said "wheel chair bound" though the preferred term is "person in a wheelchair". My training as a psycholinguist lets me think beyond some words as I believe the speaker's intent is the big issue. But my ASD brain reminds me theory of mind doesn't allow me to know that while I'm thinking one thing, the audience is hearing another. Ouch. My statement of "wheel chair bound" was said with respect. It was heard as unacceptable.
My nerves fell when a women stood to tell me of my error. I melted along side the tears dripping down my cheek. And then, on stage with me, a lovely peer mentor gentleman said to me and the audience, "It's OK. We can all learn from one another." Indeed.
Just before I spoke, I wrote my daughter. She told me not to worry, reminding me that this group of experts wouldn't judge me. She was correct. I came quite close to insulting a wonderful set of our society. My words were all wrong. The people in wheelchairs had every right to get angry with me. But they didn't. They taught me the better term and in a kind and safe manner and in so doing, they reminded me of how people everywhere should behave. Correct with kindness. Be supportive through the rough stuff. Believe we are all in this together, friends not foes, neighbors not strangers, caregivers not caretakers.
Staying Safe. What’s the first thing that pops to your mind when you hear those words? Do you think back on a tragedy that befell you? Buckling your seatbelt? Staying away from strangers in dark alleys? Do you envision a six-pack of pepper spray or a bunch of firewalls protecting your computer passwords? Maybe you see a lifeboat or a parachute that would protect you during a high-risk adventure. The point is, there is no fine distinction we can wrap around the concept of safety. Its variables are as fluid as a slope of water over slippery rocks.
It took me decades to figure out safety is not one-dimensional. It took me forever to discern the fact that staying safe involves far more than our physical and emotional worlds. I try very hard to focus on all the good things that come with having Asperger syndrome and I believe it is essential to stay on a path that teaches self-acceptance and self-reliance, but my own experiences have shown me up close and too personally how fast one can fall smack in to danger and how difficult the climb back to safe ground can be.
When I first joined the outspoken group of people on the spectrum, I was consumed with exploring the obvious way Asperger syndrome affected my family, my friends and me. I needed to see the big picture stuff of this neurobiological difference before I could wrap my head around the more intricate chinks it carves into our character and identity. My first few books from Pretending to be Normal to Asperger Syndrome in the Family and Asperger Syndrome in Adolescence were written during my discovery phase. Actually, these books were written during a time when AS was the new kid on the psychology block. We’ve all learned so much since then thanks to fabulous researchers like Tony Attwood, Sula Wolff, Francesca Happe, Uta Frith, Fred Volkmar, Simon Baron-Cohen and Lorna Wing (to name only a few) and the extra fabulous mentors (to many to name for fear I’ll leave someone out!) who have shared their personal insight about their own lives with AS. The ASD journey is still relatively new, but I’m confident many across the world we are unified in a big way on the ASD journey of discovery and assistance. Yet it seems every time we turn a new page in our discovery, we find another issue to explore.
My research and personal experiences are recently converging on safety issues. Truth be told, I avoided discussing most any of my personal reflections that shinned any light on my bad experiences with this world of ours. For years, it was simply too painful to bring up the bad bits and pieces. Now that I am older and a tad bit wiser and a whole lot stronger, I believe it is time to share what I can gather and what I know, about safety for those who have an ASD. So, for the time being, my blog will resonate around this theme. It is the single most powerful issue I have ever faced and indeed it nearly destroyed me simply because I left it too loose during most of my life. No more.
Tough topics ahead, but aren't those the very topics we should be discussing?