A blog advocating autism through my own personal experiences and insights.

Posts tagged ‘Autism spectrum’

A New Project

I have in the past several months taken on a new writing project. It’s actually a new novel. I had decided I had become bored with the old mystery series I was working on and wanted to try something new. Working on a novel is hard enough and I had a brilliant new idea for a novel that I knew I was very passionate about. It’s been a bit of work to get going on it, but given the type of novel it is all I’ve been doing so far with it is doing research.

I have already elaborated on my novel idea (no pun intended) in an old blog post: Combining My Autistic Advocacy and Writing. Basically, I’m talking about setting a novel set in a world where the majority in that world is autistic, a world where people who would be characterised as being autistic in this world are in the vast majority and those who aren’t are the ones who are labeled as disabled. Such an idea draws from the social model of disability, that disability is defined in terms of society’s norms rather than something intrinsic to the individual. While it is a philosophical and psychological debate about how much this idea is true and may depend on what disabilities we’re talking about, I do believe it is largely true for autistics. And so I’m writing a novel about it.

The writing process for this book has been greatly different than the previous novels I have written. The previous novels were set on planet Earth in a very normal setting, given that they were purely mystery novels I had written for pleasure. All that was required was to come up with a plot, make a few characters, and then I sat down to write drafts after drafts (all this, of course, was hard work regardless). The autism novel I’m not writing, however, requires a completely different approach (or a different approach that works for me).

I can’t just make up a plot line and write it. That’s next to impossible in this scenario. The setting isn’t on Earth. It is in a completely different imaginative world. It not only requires me to make up characters, it also requires me to be even more imaginative and actually make up an entirely new world, details and all. Of course some writers can somehow write speculative fiction without knowing all of this beforehand and let the details fill themselves in as they write. I don’t think that’s me, however. For me, I have to come up with a lot of the details in such a world beforehand. I need the structure. I find it’ll give me confidence and it’ll be easier to write realistically about such a world once I actually get down to writing the novel itself. Given all this, I wouldn’t be surprised if it would be a year or two before I actually start to actually write the novel itself (especially given I’m doing all of this on the side as a graduate student in math). And given that I’m thinking of making this book the start of a series means that it may even be several years before anyone let alone a publisher takes a look at it. That doesn’t really bother me though. I plan to be a graduate student for several more years so I’m in no hurry to try to get published again.

I will admit I do miss the old method of just going right into the novel and writing scenes and all that though. But I’m also finding the new method rewarding in its own sense as well. It requires a lot of research up front, which so far is really intriguing me. So what kind of research have I been doing? Basically I’ve been doing two kinds of research. The first is actually research autism and making sure I have a clear understanding of as much as I can of what it entails. I am after all only one example of someone who is autistic and one at the higher end at that so I want to make sure my world is appreciative of as much of everyone on the autism spectrum as possible. The other kind of research I’m doing is philosophical research as I want to make sure my autism novels have a lot of deep philosophical ideas in them. I’m reading up on such topics as the philosophy of disability. I have gotten a few books out of the university library and am reading through them. So far I really like what I’m reading and there are even some books that concern themselves specifically with philosophy of autism specifically.

It’s a long hard process I will admit. Like with any serious writing project, there are parts that you enjoy and parts that you hate. But I’m sure if I persevere and go through with this new project it will be worth it and will bring its own rewards right through to the very end.

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Combining My Autistic Advocacy and Writing

As a writer, deciding what to write can be difficult at times. Whether I’m wondering what to put in a blog post such as this, writing a poem, or writing a novel, it can indeed be quite challenging. When writing a novel, for example, the writer has to begin with some idea, whether it be from personal experience, a newspaper story, another story he/she’s read, etc. I certainly can find it somewhat challenging. Yet an idea has been steadily growing in my head that could indeed become useful in my fiction writing (after I finish my series of young adult mystery novels that will probably be finished in a couple of years, regardless if they get published or not).

The title of this post pretty much says it. I plan to write novels about autism (as well as math and philosophy that I elaborated on in a previous post). Writing a novel about autism is certainly something that I’ve been playing with in my head for several years. Several plot ideas came and went as to how I would go about this and as life continued, there were new experiences which were deeply impacted by my having autism. In the beginning, I was probably influenced by the novel The Curious Incident of the Dog in the Night-time by Mark Haddon, which has an autistic protagonist who was in some ways similar to me, in other ways different.

So I wanted to write a novel with an autistic protagonist. Someone who has gone through similar experiences to me. I played around in my head with what the plot should be and how it should or shouldn’t reflect upon my own experiences. I first contemplated writing a somewhat autobiographical novel, but soon my imagination toyed with how different the plot could be from my life yet still hold the themes that I wanted the work to tell.

Of course, while all this was going on, I was still working on my young adult mystery series that I want to finish up before starting something like this. While finishing the mystery series seems to be taking a bit more time than I anticipated, in truth given all that I’ve experienced I don’t think I want to write a novel about autism right away. There are several reasons for this, but the main reason is that I’d like to interact with other autistic individuals first. I’m certainly not going to write a novel based solely on my own experiences. I’d feel vain doing so and I’d like the novel to address some of the concerns of autistics at large. I’ve also gained new insights from my experiences with autism and I’d like to see if life can tell me anymore (which it probably will) about living with autism, which is party why I created this blog.

But now I have an idea that’s been brewing in my head. What if the roles were reversed? All my previous ideas involved taking place on Earth where the autistics are in the minority. What if it took place in some kind of parallel world where the autistics were in the majority and those who weren’t were in the minority?

Basically what I’m talking about here is what if there was a world, say Planet X, that was inherited by people who would be diagnosed as autistic on Earth? On Planet X being autistic wouldn’t be considered a disability. It would be considered normal (which might be a bad word here since you really can’t define normal, but you get the point). Those who wouldn’t be diagnosed as autistic on Earth would be diagnosed as disabled on Planet X.

It’s a crazy idea, but I think it’s a good one as well. It can also spin off in several directions. Questions abound immediately. What would such a world be like? Would it be better, worse, or about the same than Earth? Another question that we need to ask has to do with how the diagnosis of disabled works on Planet X. Given that autism takes in a whole range of behaviours and it’s really hard to define which behaviours constitute being autistic or not, this could be harder than it looks. While high-functioning autistic behaviours such as needing routine, structure, and literal translation can be considered normal on Planet X, what about low-functioning autistic behaviours? For example, how would Planet X distinguish between the autistic savants and those who have mental retardation? This will certainly be a problem that will have to be worked out.

While I really don’t have an answer as of yet to the second problem, I think I have a bit of an idea of the first. I’ve actually speculated about such a world in one of my earliest posts It’s All a Matter of Strengths and Weaknesses where I elaborate on the philosophy that autism is just a unique combination of strengths and weaknesses, which is no reason for thinking that autistics are any more deficient than the rest of the population.

I can already start to picture what a world would look like. Conversations would have more logic and have no figurative or double meanings. They would also go about three times as slow. People would be more honest and would almost always (if not always) have their actions and words match up. There would be no social games that you’d need to “play” in order to be friends with someone or had a crush on someone and wanted to date them. Unusual (unusual that is on Earth) body movements such as hand-flapping, rocking, finger-snapping would be in the norm. There would also be a lot less noise and crowds. People might find ways to make heavy machinery a lot less quiet and to have order (although by how much, I’m not quite sure) in large gatherings so they don’t overwhelm themselves (large gatherings would only occur if absolutely necessary to boot).

While such a world might be utopia for the autistic, it would be less suited to those who weren’t. They’d probably get in trouble a lot. They would have a weird sixth sense for body language and be noticeable for lying (when in fact they were using a double meaning). They might even be considered a “danger” to a “carefully constructed society”, especially by those who were ignorant of their condition. In fact, I think it’s quite possible that people who weren’t autistic on Planet X would have just as much a hard time as autistics on Earth and that not every autistic on Planet X would be willing to help them or understand them. Many would want to “cure” them. Such ideas may come into play for the various conflicts that’ll occur in a piece of fiction that portrays Planet X.

I’ve also tried looking up to see if any novel or story does indeed portray such a world, but I’ve yet to find one that does. If you know of any, I’d love to hear about them. Any story that portrays such a world is bound to be an interesting read.

The Aging Process

If there is one thing that I’m experiencing right now that’s changing how I go about my life, it’s the change going from a child to an adult. Of course it might seem odd that I’m only commenting on this now when I’m 23 years old and well out of my teens, but this certainly isn’t something I’m coming to experience just now. It’s something that I’ve been experiencing for the past several years and will probably continue to experience until I’m all settled down with a permanent home, a family, a good permanent job, etc.

There have been several examples of this in the past. Going away from home at the end of high school to pursue university and living on my own was a change. Learning to cook meals for myself throughout the summer following my second year at Acadia was a big thing.

But in particular, I’m no longer a child with ASD (autism spectrum disorder). I’m now an adult with ASD. While you don’t have to be autistic to experience a huge transition between being a child and being an adult (who doesn’t), autism has made an impact on my experience with the transitioning process.

One of the most obvious ways it has done so is through how I socialise. As I grow older and in particular through the transitioning process, I’m finding that I have to revise my methods for how I socialise again and again. This isn’t a bad thing. This is a particularly good thing and each revision is bringing me closer and preparing me more for when I do finally settle down (which is still several years away, especially given my endeavours). When I was still a teenager, I virtually had no methods. As I’ve explained repeatedly in my posts, I didn’t have strong motivation to do anything about my social situation. It wasn’t until I was in second year at Acadia that I started addressing this issue with a counsellor. And while I was very successful with some of the strategies we discussed, some of them couldn’t be seen as long-term strategies. While in student residence at Acadia, some of the strategies I used was knocking on people’s doors and going to breakfast with them or just going and knocking in their doors to hang out or such. While there was nothing wrong with this method while I was in residence, it became completely inapplicable once I moved out of residence and into an apartment. The friends I had made while in residence I found hard to keep in contact with because we didn’t have a few simple walls or floors separating us. We were separated by streets. And as a result, I saw them far less often since I couldn’t use my “residence methods”.

A more recent example is going from being an undergraduate student to being a graduate student. Moving to waterloo has certainly been a transition in a lot of ways socially. It was a bigger adjustment than starting at Acadia. When I first started at Acadia, I wasn’t all that concerned for a social life. I took immense pleasure in my studies and put in 75-80 hours/week on school including class time! And the fact that I was already familiar with a lot of the concepts in class eased me as well. With waterloo, the exact opposite happened. Instead of being ahead, I was suddenly behind! And taking a couple of terms by focusing on undergraduate courses, I not only gave myself time to catch up with what I needed to know, but it has also given me time to get settled in into the new environment. And I’ve observed that a lot of things are different between the lives of graduate students and undergraduate students.

A lot of the social opportunities get stripped away in going into graduate studies and it isn’t all because the work in graduate studies is more intense. There are other reasons. The classes you take are limited to your department, while as an undergraduate student you could take classes in a wide variety of subjects, thus making it easier to talk with a wide range of people. I absolutely loved being able to talk to complete math phobes at Acadia. It made me feel like I wasn’t living in my own little world, but was experience more of what life had to offer. In graduate studies, your colleagues are limited to those in your subject. Likewise it’s more difficult to enjoy meals with people. Where are all my residence friends? Where’s our daily hike up to meal hall? None exist anymore. And despite that waterloo has graduate residences, they aren’t as close knit as the undergrad ones (at least from my experience at Acadia).

But while graduate studies has issued me with all these new challenges to come up with new strategies with which to feed my hunger to socialise, almost every other option would’ve forced me with the same challenges. If I had decided to discard graduate studies, the challenges for a social life wouldn’t be any easier. If I had decided to go for a paid job instead, I would still be coming home alone most nights and cooking and having supper by myself. My colleagues would still be limited to the field that I chose to work in. The social luxuries that being an undergraduate student have to offer just wouldn’t be there.

And I don’t take this to be something that should be made different. I think these changes are particularly good in fact. I’m also beginning to adjust to the adult world in a few other ways too. Realising I was running low on jeans last semester, I went out to the Bay and bought myself a couple of pairs. I have no interest in clothes shopping, but I did it anyway. I tried on a few pairs and picked the two that fitted me the best. It felt good to be able to take care of myself in this way. Likewise I’m beginning to listen to the news on ctv.ca a day here and there. Watching the news also makes me feel I’m not living just inside my head. It also gives me topics to talk about in conversation as well as inspiration for my writing.

And what am I going to do with all these experiences of aging and with autism in general? As an adult with ASD, I am about to help others with the same condition as well. I have decided to help out with an autism organisation here at waterloo by sharing my experiences for further research in the needs of adults with ASD and to share with families with autistic children the challenges of living with autism. Cliché as this may sound, I hope I can make a difference in their lives!

The Flaw that Denies the Having of Flaws

Practically all my life (although it didn’t really become obvious to me until I was in university) I have had a quality that has both helped and hinder me through life. I have touched on it in one of the poems in my last post and I would now like to explain it. While I do give it credit in helping me become a successful individual in a lot of areas in my life, it has also led me to push myself too hard or not feel very good when I’ve made a mistake about something or other.

In short, it is a flaw that I have that makes it very difficult for me to accept that I even have flaws to begin with. It’s perfectionism. Now I know that I have my flaws just like every other human being on this planet, but it’s difficult to accept regardless and to not let it get in the way through my progress in life. I have already elaborated on several weaknesses I have because of my autism including difficulties in making friends, keeping up with the pace in conversation, and whether to interpret something as literal or not. Such weaknesses, especially given that they aren’t common in the neurotypical population, have really battled with my perfectionism throughout the years. Whenever an incident occurs in my life that is brought about by a weakness that I have due to being autistic, I immediately criticize myself for not trying harder to ‘break through’ these barriers. Often times I ignore the fact that I’m autistic completely. It’s kind of an ‘add insult to injury’. Coping with my autistic weaknesses can be bad enough sometimes, but add perfectionism into the mix and it’s not good at all.

Let me give an example. When I take courses in university, I often get frustrated because I wish my class participation was better. This can be especially true if class participation is part of the grade. Now while I think I contribute relatively well in class and that when it is part of the grade I don’t really believe the grade suffers, I feel that if I wasn’t autistic, I’d be able to contribute more. What is especially painful is how there’s frequently that one other student in the class that seems to be able to contribute about five times per class, while I only cont about contribute only twice or three times in a week. I automatically ‘lock myself in’ a competitive mode. If there’s another smart student in the class who, unlike me, is good at class participation and his/her class participation shows their brilliance, well, hey, I want to show that I’m smart too, of course. I love the air of competition. But if I make class participation into a competition, at the end of the day, I’m tired and discouraged. The line in my poem Preserving Perfecto ‘look out everyone, here I come’ comes from such experiences. You’d all better listen to me, folks, because I’m important with something important to say. This also goes back to me having a difficult time in keeping up with conversations in social gatherings, which I told about my post Speedy Gonzo. While I feel I have a lot to say, I don’t know how or even what to say.

Which of course adds to my craving for attention, which I told about in my post Attention and Rewards. I’m not really sure why I’m a perfectionist. I have a craving for attention, but I’m not exactly sure which came first in my life. It’s kind of like a chicken and egg thing. Am I a perfectionist because I crave attention or do I crave attention because I’m a perfectionist? Even as reflect back on my childhood, I see clear signs that I had both qualities, but it’s rather unclear which came first. Of course, it is possible to have one quality without the other. I could be an annoying attention seeker who doesn’t work hard to achieve life goals. Likewise, it’s possible that I want my house to be completely ordered and perfect right down to the last pen because I feel comfort in living this way and not because I want people ‘oohing’ and ‘aahing’ over the state of my perfect house.

In fact, I think my perfectionism somewhat keeps my craving for attention under control. I did say in my post Attention and Rewards that while I did have a craving for attention, I’m very good at hiding it with a modest personality. Well, it’s this modest personality that I believe is largely because of being a perfectionist. Since I fear criticism, I fear being criticized as an annoying attention seeker so I’m very careful about where and when I tell others about my accomplishments.

My perfectionism has also led me to have very good self-control. Any turmoil in my life that I feel inside me, I often mask with a calm endeavour. Sometimes I let my emotions show, whether I show them appropriately or inappropriately, but more often than not, I cover them up. This is sometimes healthy. Sometimes you’re in a situation where you shouldn’t show what you’re truly feeling. If you’re in an exam and it’s not going well, for example, you shouldn’t just cry out. But sometimes I don’t let them show when it is appropriate or wait until I’m alone. There have been a few incidents in the last several years that have made me want to cry, for example, but I don’t think anyone has ever seen me cry since before I was a teenager. Of course, most boys my age don’t like having others see them cry since it’s not a typical male characteristic (I firmly believe that such preconceptions should be removed from society). But my masking of my emotions isn’t limited to this. For example, sometimes even when I see someone I haven’t seen for a very long time, I don’t fully express my joy.

Perfectionism has reared its head in subtle ways throughout my childhood. For example, having a desire to be the top student in the class (I never was, but I believe I nearly was, at least in junior high). Craving for attention as well has made mere appearances. When I was in elementary school, for example, I complained to mom that she was making me wear boots and a rain coat to school, while the others on the bus wore shoes and light jackets (which certainly didn’t add to my popularity level). Of course, I was just a little kid then and as I’ve grown and experienced life I’m finding that I’m relying less and less of ‘rewards’ that people give me for how I behave and relying more and more on solely personal self-satisfaction.

Perfectionism did get quite ugly in university. Wanting to score a perfect 4.0 GPA with a lot of hard courses and get all A+’s in my senior level math courses really pushed me too hard and in third year I knew I had to do something about it. I got the book Never Good Enough by Monica Ramirez Basco (which I highly recommend you read if you’re struggling with perfectionism or know someone who is). It has a lot of techniques in it, such as looking at your accomplishments with shades of grey instead of just in black and white. Through this book and self-reflection, I’ve managed to make great strides in coping with it (even though I’m still struggling with it quite a bit).

I think, at least for me, however, my craving for attention and perfectionism are indeed closely linked and linked with my autism as well. I find it amazing how they influence each other throughout my life. Perfectionism’s impact on me is certainly as complex as autism’s impact. I’ve only touched the tip of the iceberg on it in this post and will certainly be returning to it in the future.

A Foreign Autistic World

Here is a poem I wrote a couple of years ago on what living with autism is like. Any comments you have for it are well appreciated.

A Foreign Autistic World

Let me introduce you to our kind
We may seem alien or foreign at first
Or maybe just a little different
So listen and do not expect the worst

I live a life full of solitude
I cut myself off from those around me
Working alone, playing alone
This is how my natural life works you see

To you I’m classified as a loner
Social interaction is a weakness
Especially when it comes to new people
For some of us, it is a life of bleakness

And let’s not forget the other characteristics
That may be our symptoms of this condition
Routine, sameness, and language delay
And living in a world of complete self-absorption

You see some of us rocking and saying nothing
You also see some of us at university
I hear you ask what connects us
I answer the spectrum is wide in its unity

I will always be like this you know
I was always like this and there is no cure
Treatment I suppose can help
But I will always be at least a little queer

Do not take this as a negative, however
I can assure that in it there is joy
In being different, in being unique
It is what I truly enjoy

So I now ask you a question
Would you like to be my friend?
I’m sure things will work out between us
Anything that goes wrong will mend