Life on the Spectrum

Archive for April, 2012

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.