Purple Aspie to I Wish I Didn’t Have Asperger’s Syndrome

Someone, somewhere out there, is wishing that he/she did not have Asperger’s Syndrome. Whoever you are, or if there is more than one of you, I hope you read some or all of the posts with this subject line to know that you are not alone. I’m sure many of us who have Asperger’s, if not all of us, have, at one point or another, wished we didn’t have Asperger’s Syndrome.

Growing up on the autism spectrum is certainly not easy, and I find myself wondering if you are a teenager. Being a teenager is hard enough as it is without a disability whose most obvious attribute is “difficulty with social skills” to make it harder. If I’d known I had AS when I was a teen, I’d probably have wished like crazy that I didn’t have it. I didn’t want to have anything to make me different, and I was most definitely different.

Today, however, as an adult, I can appreciate my differences. I think differently, and in my opinion that’s a good thing. I can look at situations in a way that non-Aspies can’t. I can solve puzzles that have my non-Aspie friends shaking their heads. I can make friends with almost any animal I meet, even the ones that other people say “He doesn’t like anyone!”

I have hypersensitive hearing, and while sometimes that can make me crazy, at other times it is very, very useful. I can find my cats by listening to them purr. When I do my transcription job, I can hear audio that my co-workers can’t hear. All of my co-workers, even my supervisor, will ask me to listen to things that they can’t hear. When I was waiting for eye surgery to fix my vision problems, I was able to use my hearing to make sure a car wasn’t coming to run me over when I crossed the street, or to find my black cat in the dark by calling her and listening to her meow at me.

I get along amazingly well with children. Even though I have always had a bit of a problem with the concept of “play,” children still approach me and ask me to play with them. People at my church will hand me their babies and say, “Here, hold my baby while I run to the ladies’ room,” or say to their toddler grandchild, “Go sit with Purple Aspie while Grandma goes and gets a cup of tea.” Children seem especially attracted to my purple clothing. I have bonded with many purple-wearing children.

When it comes to absorbing information, we Aspies are very good at it, especially if the subject is one of our special interests. Many people ask me for advice about their cats because they know that cats are one of my special interests. It’s not just my special interests, though; if I want to know about a subject, I get to know that subject inside and out. Ask me a question about something, and if I don’t know the answer now, I will know the answer tomorrow — along with a massive amount of additional information that you didn’t ask me about. In school I was always very good at writing research papers. I can beat almost anyone at a trivia contest, unless the subject is sports. Something I hear quite often is, “How did you know that?” to which my answer will probably be, “Doesn’t everybody?”

Our attention to detail makes us very good at spotting defects and differences. If you’ve ever seen those little pictures that ask you to “spot the differences,” as an Aspie you can probably spot those differences very quickly. If something isn’t working, get an Aspie to look at it; they’ll find what’s wrong with it even if it takes them all night, because Aspies are also very, very focused and dedicated. When I’m working on something, I will work until it is finished. Sometimes I have a problem starting something, but once I’ve started, I’m bound and determined to finish it.

While we Aspies may find it difficult to make friends, we can be very good friends. We don’t expect people to read our minds and guess whether or not something is bothering us. We don’t hide the truth; indeed, we can be brutally honest. If you want an honest opinion on your outfit or your hairstyle, ask an Aspie. We seldom judge people for gender, sexual orientation, religion (or lack of same) or skin colour. I honestly don’t care if you’re male, female, gay, straight, Christian, Atheist, red, green or purple. Okay, I might like you better if you’re purple. As long as you’re nice to me, I’ll be nice to you in return.

Dear “I Wish I Didn’t Have Asperger’s,” do you know any other Aspies? There are many of us out here. If you can’t find any of us in person, look for us in cyberspace. There are many, many autism & Asperger communities online. Go on Twitter and look for the hashtag #asperger. Learn how to be an autism self-advocate at autisticselfadvocacy.org. Join the discussion boards at wrongplanet.net. Go to http://www.inlv.demon.nl/ and sign up for one or more of their Asperger e-mail lists.

Most of all, I want you to know that you are not alone. It can be hard to have Asperger’s, but it does get better. Please reach out and find some of your fellow Aspies. We want to help.

Growing up undiagnosed

I sometimes wonder how much my life might be different if I’d been diagnosed as an Aspie when I was a kid. Asperger’s didn’t exist as a diagnosis till I was in my 20s, and I didn’t get diagnosed until I was 35.

I often think that I’d be better off today if there had been some sort of intervention when I was a kid, someone to teach me social skills, someone to prod me to take a shower more often than once every couple of weeks, someone to teach me what is and isn’t appropriate to say in polite company rather than just scolding me after I said something inappropriate in polite company.

However, I grew up in a small town. I don’t know if I would have received those kinds of services in my small town. Would my parents have been forced to take me out of town every so often to get help for me? That would have been hard on them, though I might have enjoyed getting to go on trips.

I wonder whether it would have helped my social isolation at all. Would intervention to help my social skills have improved my ability to get along with my peers, or would I have been placed in some sort of special ed class, which would have created even more barriers between me and other kids? When I was in the primary grades I was sent to something called “learning assistance” to work on my fine motor skills — mostly my extremely bad handwriting (technically, printing) skills. This probably helped to get me labelled “retarded” by my classmates.

After I was diagnosed with juvenile diabetes around the time I started school, my mother became very protective of me — somewhat overprotective. I often wonder whether my having a diagnosis of an autism spectrum disorder would have made her even more overprotective.

Of course, I will never really know what my life would have been like had I been diagnosed with Asperger’s or an autism spectrum disorder when I was a child. I grew up in the 1970s when there just wasn’t the awareness of learning and developmental disabilities that there is now. Add to that the fact that I lived in a small town, and you can understand why I was never assessed for any kind of disability. There were kids who were “retarded” and kids who were considered to be “slow”, but I never heard of anyone having a learning disability, never mind an autism spectrum disorder. Autistic kids were like Tommy Westphall on St. Elsewhere: they rocked, they stimmed, they stared off into space, and they didn’t speak, Maybe you read about them in books by authors like Torey Hayden.

I think a diagnosis might have helped me in some ways and hindered me in others. I don’t know that it would have my childhood any more difficult than it already was, though. In some ways I envy the kids who are being diagnosed today and, I hope, getting the help they need.

Person-first language

I am autistic.

I am not a person with autism. I have to say I am a person with Asperger’s Syndrome, because most non-Aspies do not know what the word “Aspie” means. Therefore, I can’t say “I’m an Aspie,” though it would be a heck of a lot quicker. It’s shorter than “Aspergian,” which is the writer John Elder Robison’s preferred term.

I prefer “autistic” to “person with autism.” I get annoyed when other people insist on saying “person with autism” repeatedly. I also get annoyed when people get annoyed with me for calling myself autistic. Calling myself “a person with autism” isn’t going to change the fact that I am autistic.

I call myself a woman, not a person with femaleness. I call myself Canadian, not a person with Canadian-ness. I call myself bisexual, not a person with bisexuality. So why do people have so many problems with my saying “I am autistic”? I am autistic. I do not have autism. To me, autism isn’t a thing I have; it’s a thing I am.

On the other hand, when it comes to diabetes, I am much more likely to say “I have diabetes” than “I am a diabetic.” I sometimes compromise and say “a diabetic person.” But most of the time I use person-with language to describe diabetes, because diabetes is something that I have, not something that I am.

Also, to me, autism isn’t a disease, and diabetes is. A lot of people use person-with language to classify autism as a disease; these are generally the same people who try to convince others that autism is like cancer, even though autism and cancer are not even remotely the same. I was told that if I would just use person-with language to describe autism, then I would understand the comparison. Sorry; I still don’t see the similarities between autism and cancer.

Autism is a set of neurological differences. To me, it’s sort of like a person being born with a body part that is missing. That is not a disease, and neither is autism. I still find it hard to classify diabetes as a disease, because for the type of diabetes that I have, it means that my pancreas doesn’t work. The malfunctioning pancreas has a lot of side effects, but I’m not entirely sure that it is a disease. But I digress.

Most of the time I will say “I am autistic” but I don’t say that I am an autistic. I seldom use “autistic” as a noun, though I will use “autie” the same way I use “Aspie.” When I’m on Twitter, I will quite often say “autie” or “Aspie” just to use as few characters as possible. When I’m writing a blog post, I am probably more likely to say “autistic people”. I still don’t say “persons with autism.”

The reason I say I am autistic, that I am not a person with autism, is that to me, autism is my life. It is who I am. It is part of everything I do and everything I am. It is the way my brain works. It is my personality. It affects pretty much everything. I cannot find a “me” separate from autism. And I’m okay with that.

Defining high and low-functioning

Autistic people are usually divided into “high-functioning” and “low-functioning” with nothing in-between. Some children are considered low-functioning and then, after therapy and intervention, they are considered high-functioning. No one is ever described as “moderate-functioning” or “medium-functioning.” A person who can’t talk, even if he or she can care for themselves, would be considered low-functioning.

I am considered high-functioning. I have a job. I live by myself. I pay my rent and my bills. I go to work every day. I care for two cats.l have a boyfriend. I can navigate my way around town on the bus. I can even go out of town on the bus.

On the other hand, I can’t clean my apartment. I have great intentions of cleaning my apartment, but somehow I just don’t do it. I need supervision to keep me from sitting down and surfing the internet or the TV channels or getting sidetracked by an interesting piece of paper.

I am very reluctant to move outside my comfort zone. I never try anything new. I seldom go anywhere I’ve never been before, at least not by myself. I can’t handle loud noises. I have meltdowns if I have to endure the sound of my next-door neighbour’s stereo coming through my wall. I cannot tolerate noise, and I get agitated very easily.

I suffer from anxiety, especially when it comes to telephones. I get such terrible anxiety that I cannot use the phone to make an appointment with my doctor.

I have a processing problem, and I don’t always process instructions very quickly. With verbal instructions, I usually have to have them repeated. Sometimes when I have printed instructions I have to reread them several times before I understand them, but I’m better with written instructions than with verbal ones. I work best when someone shows me how to do something. I would never do well on a game show because I cannot process the answer to a question quickly. I might know the answer, but it will take me a while to retrieve it from my memory banks.

I get stuck. For the last three days I’ve been telling myself I am going to take a couple of bags of returnable cans and bottles to the recycling depot to get some money back for them. I’ve told myself I’m going to go to the mall and buy a lightbulb for the lamp in my front room that takes a very unusual and specific type of lightbulb that isn’t available in very many places. I’ve told myself I’m going to go to the vet’s office and buy another bag of food for my cats. Yet I’ve done none of these things because I simply do not want to leave my apartment. It’s not due to anxiety; I don’t have agorophobia. I just can’t be bothered to get off my rear end and motivate myself.

I lose things constantly. For the last couple of weeks I’ve been searching for a couple of receipts that I need for my taxes, and I have no idea what I did with them. I don’t put things in safe places — either that, or I don’t remember where those “safe places” are.

I do have friends, but I’ve become so gun-shy after being rejected so many times by people I thought were friends that I seldom make the first move, and I wait for other people to make it. I’m flattered when they do, but I worry that they will stop if I don’t reciprocate.

I have a short temper. I get frustrated easily, and I do not deal well with frustration. Frustration is something that can cause me to blow up more often than anything else.

Fortunately or unfortunately, I am classified as high-functioning. Fortunately, I can take care of myself; unfortunately, that means that I don’t get any help with these problems. They are not considered serious enough for me to receive any assistance. There is medication for anxiety, but of the ones I’ve tried, I can’t deal with the side effects. Therapy is not covered by my medical insurance, and I can’t afford to both take time off work to go to therapy as well as pay for the therapy itself.

Could I pay for someone to clean house for me? My kind of cleaning isn’t the kind that is normally done by housekeepers. When it comes to vacuuming and mopping floors and wiping off countertops, I can do that. What I have trouble with is making space on the floors and the counters so that they can be washed; garbage, unwashed dishes, and un-put-away food packages litter every surface in my kitchen. In my bedroom, clothes are everywhere. In my living room, it’s books and DVDs. Paper is everywhere. Yesterday I took out a full bag of paper to the recycle bin, and I have another bag wating to go. I’m physically capable of doing the work, but it seems as if there is a switch in my brain that is currently set to the “off” position.

Can therapy help with these kinds of problems? I don’t know, because I’ve never tried it. There is no therapy offered for autistic adults where I live unless you can pay $100 an hour for it.

Really, “high-functioning” and “low-functioning” are not very well defined. A person might not be able to talk and yet able to clean an apartment. I can talk just fine, but I can’t clean my apartment. I think that when it comes to autistic people, there are some deficits we all have in common, such as social and communication deficits, but otherwise, we are all different from each other and have abilities and disabilities in different areas.

Autism Acceptance Day

It’s past midnight as I write this, so technically the day is over, but today, April 2, was Autism Awareness Day. I prefer the title Autism Acceptance Day. “Awareness,” to me, is a nebulous term that is all but devoid of meaning. Everyone is “aware” of autism. Everyone is aware at the very least that it exists. We don’t need a special day, week or month to be aware of autism.

Some people have decided that this should be Autism Acceptance Day instead. Instead of merely being aware of autism, how about we accept autism and autistic people? Stop using the word “autistic” as a joke in 21 Jump Street. Stop calling someone “Rainman” simply because they are able to remember particular dates or facts.

What I want people to know is that I am autistic, but that doesn’t mean that I am somehow not “normal.” Autistic for me is normal. What I am is normal for me. It may not be normal for anyone else, even for another autistic person. But I am normal. I am not broken. I am not defective. I do not need to be fixed. Yes, there are things that I need help with, but who doesn’t need some form of help sometimes? There are things I am not good at, but there are plenty of things that non-autistic people are not good at. There may be things that I am in fact better at than non-autistic people.

As the poem by Virginia Satir puts it, “I am me. In all the world, I there is no one else exactly like me. Everything that comes out of me is authentically mine, … I can see, hear, feel, think and do. I own me, and therefore, I can engineer me. I am me, and I am okay.“

 

I Don’t Hate Autism

I don’t hate autism.

I know that there are parents who hate their children’s autism. I do not know what it is like to be a parent of a neurotypical child, never mind an autistic child. But I do know what it is like to be an autistic person, and I do not hate my autism.

I do find sometimes find autism to be frustrating and annoying. I don’t like some of the problems it presents. I don’t like having hypersensitive hearing, for example. Yet there are some ways that having hypersensitive hearing helps me in job as a transcriber. I can hear things that others can’t.

Autism is a part of me. It is inseparable from who I am as a person. There are, of course, other facets of me; I love cats, I love to read, and I love to write. It’s a bit of a stretch to say I love my autism, but as I said, it is part of myself, and I do not want to hate myself.

If I’d been given a choice as a kid to be autistic or be neurotypical, I imagine I’d have chosen to be neurotypical. I wouldn’t have chosen to be something that meant I never had friends, that meant that I was bullied, that meant that I was an outcast among my peers. As an adult, however, I would not give up being autistic. I would not give up the talents and abilities I have that I believe came from being autistic.

I have long believed that many of the problems that we have as autistic people come from the world around us. The world is usually set up for the majority, and the majority is neurotypical or at least non-autistic. This is why there are so many fluorescent lights and uncomfortable clothes and loud noises everywhere you go. If there were more autistic people, then people wouldn’t be expected to wear such uncomfortable things as ties or pantyhose. No one would make wool sweaters or constricting clothing. Labels wouldn’t stick out of the back of shirts. Everyone would wear what was comfortable for them and other people wouldn’t judge them for it.

I have never understood the love that some people have for volume. I don’t know why the volume dials on most music players enable you to turn the volume so high. I fully believe that the current generation and those to come will have hearing damage long before they hit their senior years, and it will be caused by listening to music turned to incredibly high volumes while wearing headphones or earbuds.

I often wonder why concerts must be so loud. I realize that the back rows need to be able to hear, but I don’t think the people on the next block over need to be able to hear. I’ve come out of concerts with my hearing temporarily decreased, and everything sounds muffled. I feel sorry for the band members who are up on stage performing next to the giant speakers. Is there such a thing as an Aspie rock musician? Oh, yes, there is one. His name is Gary Numan.

One positive thing I think that autism has given me is the freedom to stop caring what other people think. I’ve realized that what is most important is what I think. This doesn’t mean, as some people believe, that I don’t care if I hurt people. This is not what I mean at all. What I mean is that I am not going to worry about “looking stupid.” If I want to dance in the supermarket, then I will dance in the supermarket. If I want to talk baby talk to my cats when we’re at the vet’s office, then I will talk baby talk to my cats when we’re at the vet’s office.

I am autistic. Autism is part of me. It is neither all good nor all bad. It has positive aspects and negative aspects. I can’t pick and choose which parts of autism I will keep and which parts I will discard. I have to keep the whole package.

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.

Autism and Social Media

(This is the text of a speech I made in February 2011 for the Idea Wave conference in Victoria, B.C. It was in response to a campaign by various celebrities, and some non-celebrities, to “go silent” on social media for a day in order to raise awareness of the “isolation” of autistic people.)

My name is Iris. Some of you may know me online as rainbow_goddess. I use social media a lot. I have accounts on Twitter, Facebook, LiveJournal, Insane Journal, You Tube and yes, even MySpace.

What you may not know about me is that I am autistic. I was diagnosed with Asperger’s Syndrome, an autism spectrum disorder, when I was in my 30s.

A few months ago there was a particular day when people were encouraged to stop using social media for an entire day. The purpose behind this was apparently to show support for the “isolated autistic people” in the world.

While I’m sure this was done with good intentions, I think that the people who did this missed a very big point. That point is that social media has helped a lot of autistic people become less isolated.

First of all, let me explain what I mean by “autism.” The Wikipedia definition of autism is a spectrum of neurological disorders characterized by impaired social interaction and communication. Autism is indeed a spectrum: at one end, you have people who are developmentally disabled, who have low I.Q.s and who cannot take care of themselves. Many are non-verbal. At the other end, you have Asperger’s Syndrome and high-functioning autism, which include people who can live independently and hold jobs but who have trouble making friends and understanding social situations and are often labelled quirky or eccentric.

There are many stereotypes surrounding autism. When I tell people that I am autistic, they don’t always believe me. They point out that I have a job, I have friends, and I have a partner. I’ve been told that I seem to be unusually social for an autistic person. Doesn’t everybody know that autistic people don’t want to have friends? Don’t we all want to live in our own little worlds and not have any interaction with other people?

Well, whether you believe it or not, I am most definitely autistic. I have been fortunate to learn life skills, communication skills and employment skills from some very kind, wise and helpful people. Not everyone on the autism spectrum has had that privilege.

The truth is that just like everybody else, many autistic people do want to associate with other people. We do want to have friends. We do want to have romantic relationships and maybe get married someday. Certainly, there are some autistic people who don’t want this, but there are some non-autistic people – what we call neurotypical – who also don’t want this.

The problem comes with that whole area of “impaired social interaction and communication”. Most of us have a lot of trouble interpreting other people’s behaviour. We can’t read facial expressions or body language. We can’t tell what another person means just by their tone of voice. Non-verbal communication is a mystery. If someone lies to one of us, chances are we’ll believe it. If someone is being sarcastic, we’ll take them at face value and not realize they are being sarcastic.

Autistic people often have very sensitive hearing. Background noise makes it worse, and because of that, I’m less likely to want to spend time with people in a noisy bar or somewhere where there’s loud music playing. This has caused me to be accused of being anti-social in the past.

On the internet, there isn’t any body language to read. There are no facial expressions. There is no tone of voice. There is no background noise to mess up your hearing. The most you can expect is an emoticon with a smile or a frown to tell you whether or not a person is joking. This makes communication much, much simpler. If someone sends me a message on Facebook, I don’t have to spend time wondering exactly what they are trying to say. There are no non-verbal cues to sort out. There is less pressure to respond instantaneously, so there is more time to figure out what I want to say.

Since I started using Facebook a couple of years ago, I have more friends than I ever had before. I spent a long time – probably a couple of years – wanting to ask my co-workers if they wanted to go out for coffee sometime, but I was much too shy. I was even too shy to ask them for their phone numbers or email addresses. But after we added each other on Facebook, I was able to send them messages saying things like, “Hey, would you like to go have a drink on Friday after work?” Now we see each other regularly outside of work, and we are friends instead of just co-workers.

I spoke to a teenage autistic boy recently who told me how he had added his classmates as friends on Facebook, and they invited him to go to the movies with them. This was a big deal for this boy; up until then, he’d never had friends to go to the movies with. Now he hangs out with them all the time. He credits Facebook with helping him make friends.

Social media also helps autistic people meet other autistic people, which can be especially helpful for people from small towns or isolated places where they may not be able to meet others in person. When I first learned that I had an autism spectrum disorder, I didn’t know where to find other people like myself. I used the Yahoo Groups website to find email lists, and then I joined Live Journal.

I want to talk about Live Journal for a moment. Live Journal is a site where you can keep your own blog and also join “communities” of users with a common interest. I joined the Asperger community – Asperger’s being a form of autism, as I said – and suddenly I was with people who were, if not just like me, a lot like me.

One of the most common posts on the Asperger LiveJournal community is called “Does anybody else do this?” It might be, “Does anyone else have trouble figuring out what other people want?” or “Did anyone else pick up toy cars and spin their wheels round and round when they were kids?”

It was so amazing to me when I found that there were people out there who were like me, who did the same things I did, who had the same kinds of social problems that I did. It meant that I was not alone. That’s a big thing, knowing that you’re not alone. I was finally able to stop blaming myself for the social mishaps that I kept getting into when I was a kid. They were not my fault.

Social media is also extremely important for the parents of autistic children. Parents find that they are often unable to schedule such things as playdates for their autistic children because these children may simply not be the “playdate” type. There is no way to know ahead of time how an autistic child is going to react to various stimuli – smells, sounds, lights, or colours – in someone else’s house. It is hard to know what is going to cause an autistic child to have a meltdown. Maybe the parent is afraid of being judged for what other people see as abnormal behaviour in their child.

These parents can find help and support from other parents in online forums, discussion boards, chat rooms and blogs. They can discuss parenting, vent their frustrations, and compare notes on how to do what is best for their children. As with autistic adults, they can use social media to find that they are not alone.

Another valuable way that both autistic adults and parents of autistic children use social media is in finding people to meet with in person. A few years ago I joined meetup.com, and I wound up running a meetup group for adults with autism or Asperger’s Syndrome in Greater Victoria. Once a month a group of us meet in a local restaurant for food and conversation. There could be anywhere from eight to 18 of us, but most meetings average about a dozen. We share stories with each other, share common interests, form friendships and sometimes try to help parents in figuring out their autistic or Asperger children.

There is a misconception that only very high-functioning autistic people and people with Asperger’s use the Internet and social media. This isn’t the case. I am friends with people online who are considered to be low-functioning. Some of them write very eloquently in their blogs but seldom speak at all in person.  There is a nonverbal autistic woman called silent miaow who has her own channel on YouTube where she shares videos about her life as an autistic person. She communicates using a speech synthesizer.

To sum up, I would say that if it were not for social media, I would be very isolated. I would have few or no friends. I wouldn’t have met an amazing group of people from all over the world who are united by something that most people see as negative – autism spectrum disorder, or Asperger’s Syndrome. I wouldn’t have gone out for drinks last Tuesday night with my friends Amy, Anne, Glenn and Dan. I wouldn’t have gone over to the mainland to meet my friends Chandi and Josie for lunch on Granville Island. I wouldn’t be supporting, and gaining support from, the people in my Asperger meetup group. I definitely wouldn’t have gone to a karaoke Tweetup last month!

At any time of day or night, if I need to talk to someone about problems I’m having, I can go online and start a Twitter conversation by using the hashtag #asperger. I can make a post in the Asperger Syndrome LiveJournal community. I can send a message to a friend on Facebook. I would probably never pick up the phone – I’m much too shy for that – but I can still communicate with people no matter where they are. That is why social media is important to me as an autistic person.

Please don’t use figurative language

As an Aspie, I sometimes have problems when people use figurative or symbolic language. One would think that as a former English literature major I would be used to similes and metaphors, but I always believed that Lord of the Flies was merely about a bunch of kids on a deserted island, and that usually a cigar really is just a cigar. In general, I prefer that a person tells me something in plain English (or French, but I understand English better) what they mean, rather than using symbols or metaphors.

This morning I had a conversation with my partner of 13 years. We were talking about my router. It hadn’t been working properly, and I’d asked him to fix it. I was asleep when he fixed it, so when I woke up I asked him what had been wrong with it, so that I’d be prepared if it started to malfunction again.

“You were trying to barbecue it,” he told me.

I told him that I was doing no such thing; after all, I don’t even own a barbecue.

He insisted that I was trying to barbecue my router.

Again, I told him that I don’t own a barbecue, and that even if I did, I would not put my router on it, and to please tell me what had been wrong without the figurative language. “Just tell me in plain English, please!” Nevertheless, he continued to say that I was trying to barbecue my router.

A few hours later, thanks to a suggestion from a friend of mine on LiveJournal, I rephrased my question about the router. Instead of asking what was wrong with it, I asked John how he fixed it.

John told me to look at it. I saw that where before, the router, computer modem and telephone modem had been stacked on top of each other, they were now separated from each other.He told me that had been what was causing the router to be “barbecued.” It had been overheating.

What I want to know is why he couldn’t just tell me: “The router was overheating because you had stacked it in a pile with two modems on top of it.” Why did he have to use a silly expression like, “You tried to barbecue it?”

Sometimes I think that people would get along a lot better if they stopped trying to obscure what they said in figures of speech, metaphors, symbols, jokes and sarcasm and just plain said what they mean — politely, but honestly.

And I would have loved to sit down with William Golding and ask him whether the dead airman and the conch shell and the pig in Lord of the Flies were actually meant to be anything other than a dead airman, a conch shell and a pig.

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.