Life on the Spectrum

Posts tagged ‘Asperger’s. Aspie’

What’s in a label?

Over the years that I’ve been dealing with Asperger’s, I have met some people who say that they do not want to have a “label”, or they do not want their child to have a “label.” They believe that labels are bad things and should be avoided.

Of course, there are some situations in which a person has to have a diagnosis and has to reveal that they have the label of Asperger’s/autism. These are situations in which a person might need accommodations at work or school, or they need to access certain services. But what about social situations? What about telling your co-workers? What if you have made a new friend and you’re hesitant about telling them?

Well, what is the purpose of a label? A label tells you what’s inside the package. Say you go to a store because you want to buy a TV. But when you get to the store, all you see are boxes — boxes with no labels. They’re all the same size and shape. How do you know which box contains TVs, which contain radios, which contain other furniture? You don’t, unless the boxes are labelled.

It’s the same with Asperger’s. While some of us are seen as “quirky” or “eccentric,” most people can’t tell just from outward appearance that someone has Asperger’s. Unlike the more severe forms of autism, it’s usually not obvious. So you don’t know what’s in the box without the label.

I choose to wear the Asperger label. I may not tell a person the moment I meet them that I have Asperger’s, but if I know I am going to be spending very much time with this person, then I probably will tell them — I’ll use the label — because I want them to know what’s inside. I want them to know that if I’m not making eye contact, it’s not because I’m being dishonest or evasive. If I accidentally say something that could be considered rude or insensitive, I’m not doing it intentionally. If I tell them I wish to avoid a place that is extremely busy and noisy, I want them to know why.

“But Purple Aspie,” some people have said to me, “if I tell people that I am autistic/have Asperger’s, then they will have preconceived notions of what autistic is, and they will treat me differently. They will treat me as disabled. They will not see me; they will see my label.”

This is where a person has to decide for themselves whether they wish to reveal their label or not, and when to reveal it. My suggestion is that unless you need specific accommodations for your autism/Asperger’s in a particular situation, you wait a little while to reveal it. Let people get to know you first. Then, when you tell them, they will already know you, and they will (I hope) know how to treat you. But you have to be willing to speak up for yourself. I know it’s hard; one Aspie told me that he is much better at advocating for other people than he is at doing it for himself. But you are the one who knows what you need; you are the one who knows how you wish to be treated. Sometimes you may just have to say, “I’m the same person I was before you read what was on the label.”

In the end, it’s up to each individual person whether or not he or she accepts the label or tells other people about it. I think labels have purpose, but we have to be careful how we use them. I’m reminded of the time my boyfriend got a brand-new label maker and went around sticking labels on everything in the house, including the cats. We should not be treating people that way, going around sticking labels on everyone willy-nilly. We should use labels where they are appropriate and useful, to help us understand what’s inside.

I Have Asperger’s. Are You Scared of Me?

I am autistic. I have Asperger’s Syndrome. Are you scared of me yet?

I was diagnosed in my mid-30s after a lifetime of wondering, struggling, and questioning; a lifetime of not knowing why I found it so hard to make friends; a lifetime of depression and occasional thoughts of suicide. I wondered what was wrong with me. But I was never violent. I have never been violent. For anyone to suggest otherwise is something that I find insulting.

It seems to be quite common these days for armchair psychologists, especially those with TV shows on which they can spout their opinions, to “diagnose” mass killers with Asperger’s or autism, whether it’s the Norway shooter last year, the Colorado shooter this week or someone in the past who was a serial killer or mass murderer. Sometimes they are merely referred to as “loners,” but soon enough someone seizes on the word “loner” and replaces it with “autistic” or “Asperger’s,” because obviously, if you’re a loner you must be autistic. Never mind that these people who are being armchair-diagnosed might not even be loners at all. It’s very common for the media to make broad, sweeping pronouncements about suspects in crimes like this, only to be proven wrong — with much less publicity — later on.

I guess this means that one of these days I’m just going to get up off my chair, leave the computer and go shoot a bunch of people. Wait a minute; I don’t own a gun. Hm.

I live with three cats. (I hesitate to say that I “own” three cats.) One would think that if I were violent, the cats would be the first to suffer from it. After all, don’t serial killers get their start by hurting animals? So how do you explain that when I take my cats to the vet — and I do, on a regular basis — the vet has never found any signs of injury or trauma on them? Better yet, how do you explain that the cats show absolutely no signs of fear when they’re around me, that they are constantly occupying my lap and snuggling in bed with me at night? Granted, I do raise my voice sometimes when I’m upset, and they have been known to run away when I do that. But this is a way in which cats and autistic people are alike: neither of us likes loud noises.

Obviously I’m an evil, horrible person who has somehow brainwashed my cats into accepting my violent tendencies.

The fact is that autistic people, and people with other disabilities, are many times more likely to be victims of crime, especially violent crime, than to commit crime. An autistic person is much more likely to be murdered than to commit murder.

An autistic person is no more likely than a non-autistic person to commit a violent crime, but if one autistic person out of millions of autistic people in the world commits a crime, then obviously autism is to blame, because some talking head on TV who thinks he’s an expert on autism says so. Wouldn’t it be nice if people who didn’t know what they were talking about, didn’t talk about it?

I am a human being. I like to read. I like to write. I like to cuddle my cats. I like to spend time with my boyfriend. (By the way, he’s not afraid of me, either.) My favourite colour is purple. My best subject in school was English.

I also have Asperger’s. Are you scared of me?

What is Normal?

I recently saw the movie Loving Lampposts: Living Autistic. The word “normal” was tossed around a lot in the movie. The question seemed to be: can an autistic person ever be normal?

My questions are: what is normal? Who defines it? What are the criteria? Who decides whether or not I am normal? Is being normal a good thing? Do I even want to be normal?

When I was part of the gay-lesbian community in the 1990s I often heard two expressions regarding normalcy. One was: “‘Normal’ is a setting on the washing machine,” and the other one was, “Heterosexuality isn’t normal. It’s just common.” I think those of us in the autism community can learn from the gay community when it comes to normality.

If you put the words “Normal is” into a Google search, you will get the following suggestions: “Normal is a setting on the dryer,” “Normal is boring,” “Normal is an illusion,” “Normal is overrated.” When I was a teenager it was common to see people sporting buttons that said, “Why be normal?” This makes it appear that perhaps normality is not all that it’s cracked up to be. Still, it doesn’t help with an actual definition of what normal is.

When someone uses the word “normal” as applied to autistic people, it’s usually in the context of the autistics not being normal, at least in the criteria of the person using the word. But really, I think that the word is meaningless. There isn’t a DSM categorization for “normal.” There isn’t a concrete list of characteristics that make someone normal. It’s normal for me to eat meat; it’s not normal for a vegetarian to eat meat. Does that mean the vegetarian is abnormal? If there are more meat-eaters than there are vegetarians, that means that being a meat-eater is more common than being a vegetarian, just like being heterosexual is more common than being homosexual, and being non-autistic is more common than being autistic. That doesn’t mean that the vegetarian, the gay person or the autistic person is abnormal.

For me, eating meat is normal. Being bisexual is normal. Wearing purple is normal. Using public transportation and not driving a car is normal. Loving cats is normal. Being autistic, for me, is normal. If I suddenly somehow started acting non-autistic it would mean I was acting in a way that is abnormal for me.

I guess that means that I am normal after all, whatever that means! What is normal for me is probably not normal for you, the reader, or for anyone else. But as long as my version of normal works for me, I’ll keep it.

Finding the Right Planet

One of the ways Aspies often describe ourselves is as a aliens, strangers in a strange land, or simply “Oops, wrong planet!” It’s an attempt to describe how we have a lot of problems fitting into a non-autistic world. I’ve seen a t-shirt on Cafe Press that declares, “Spock was not a Vulcan. He was autistic, with pointy ears.” A book for women married to Aspie men is called Loving Mr. Spock.

I think the problem is that I am actually not an alien. Or, if I am, I am an alien who looks exactly like everyone else. I don’t have pointy ears. I don’t have green skin. It’s as if I’ve landed on a planet where I look and, mostly, sound the same as everyone else, and no one can tell I’m an alien. Most people expect me to act like they do, and they don’t understand why I don’t. They don’t know that I’m on the wrong planet.

It doesn’t take long for people to realize that I’m different. “Hey,” they think, “this woman isn’t quite like me. In fact, she’s not quite like anyone I know.” Sometimes I think it’s that “not quiteness” that bothers people. Maybe if I were completely and totally different from other people, then they wouldn’t expect me to act like everyone else and be so caught off-guard when I don’t. I don’t get their jokes. Maybe I don’t even realize that they are meant to be jokes. Someone asks me how I am, and I answer, “Fine,” but I forget to ask, “And how are you?” in return. The clothes I’m wearing were chosen not because they’re fashionable, but because they’re comfortable. I don’t want to talk about the Kardashian sisters or the Real Housewives or who was voted off what reality show. But if you want to talk about Star Trek…. Unfortunately, not very many people do, unless you’re at a science fiction convention or have the good fortune to work with a lot of geeks. (And where you find geeks, you’ll probably find Aspies.)

When I was going to college a few years ago, two of my closest friends were from Japan and Korea. They didn’t have any preconceived notions of how Canadians were supposed to act. I imagine that to them, anyone not from their home country was “different.” I was no more different than anyone else. Kumiko and Yun Ji were more accepting of me than many of my fellow Canadians have been.

An Aspie friend of mine told me that he had a similar experience when he spent a few years teaching school on a First Nations reserve. Being white, he was automatically considered to be “different.” He wasn’t a native; therefore, he was different. While he was there, he had the freedom to be himself, because he didn’t have to try to pretend that he wasn’t different.

This is why Asperger social groups are important. When I’m at my Aspie group, I can be myself without worrying that I’m saying the wrong thing, using the wrong fork, asking the wrong question or not asking the right question. It doesn’t matter if my hair is a mess or I have a food stain on my shirt. I don’t have to worry that I’ve taken something literally that is not meant to be taken that way, because with Aspies, what other way is there to take something?

When I am with my fellow Aspies, it’s like I’ve finally landed on the right planet. Don’t beam me up, Mr. Scott; I like it down here.

What does it all mean?

If you don’t have Asperger’s, or don’t know anyone who does (or simply don’t KNOW that you know someone who does), you may be wondering: what does it mean to have Asperger’s? What makes you different? Why is it a big deal?

For me, most of the time it’s actually not a big deal. But then something happens that reminds me that I don’t see the world the way non-Aspies see it. A joke goes over my head. I take something seriously that was not meant to be taken seriously. Maybe someone was sarcastic, and I misinterpreted the sarcasm. Someone asks a rhetorical question, and I answer it, because I didn’t realize it was meant rhetorically.

To some extent, writing is less open to misinterpretation than speech, because many writers, especially in blogs or other social media sites like Twitter, use smiley faces or other emoticons. But not always. Some people just assume that everyone knows they like to be sarcastic, or they think it’s obvious that their question was rhetorical. Who can blame them? They didn’t write that Tweet or blog entry with Aspies in mind.

A few days ago my father mentioned that I never made eye contact when I was a kid, and I still don’t. I was a bit surprised that he mentioned it now, after being my dad for more than 40 years, but these days it’s more troublesome for him because he’s losing his hearing. I took lessons in American Sign Language a few summers ago, and because my teacher was Deaf it was important that I looked at her when I spoke or signed to her. Unfortunately, it was extremely difficult for me to do that, which made it very hard for me to communicate with her.

Another situation in which eye contact is important is job interviews. Job interviews are stressful to begin with; add a requirement to do something that is very difficult for an Aspie, and it’s not hard to understand why so many of us Aspies are unemployed or under-employed.

I also find it hard to come up with situations that fit the questions the interviewer asks, such as: “Describe a situation in which you had a dispute with a co-worker, and how you resolved it.” What if you haven’t had any disputes with co-workers? What do you do then? Also, being very literal-minded, I try to find something that fits every question exactly, down to the most minute detail, which makes it even more difficult.

Sometimes those of us who are Aspies will offend people unintentionally. We may be rude without being aware of it. I once had a friend buy me lunch, and I fully intended to thank her when the meal was through, but suddenly, in the middle of the meal, she glared at me and said, “YOU’RE WELCOME!” Apparently she had expected me to thank her sooner. I thanked her profusely when she said that, but it must have appeared to be less than sincere thanks.

Contrary to popular opinion, people with Asperger’s do not go around offending people willy-nilly in the belief that we can use our Asperger’s as an excuse. The Aspies that I know, myself included, will apologize sincerely if we have offended people. Sometimes I will offer my Asperger’s as an explanation if I have missed a social cue, but I don’t believe that Asperger’s excuses me from behaving according to social norms.