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

Posts tagged ‘Autism’

Autism: A Feminist Issue

I’ve read a few blog posts over the past few days that have really opened my eyes to an issue in autism diagnosis. They are here: https://themighty.com/2017/02/autism-feminism-and-bodily-autonomy/  and http://www.loveyourrebellion.org/intersections/autism-is-a-feminist-issue/. I’ve always known that there have been far more males diagnosed with autism than females, but after doing some reading, have discovered that this disadvantages females with autism in a few ways. Regardless of whether there is any biological or psychological explanation for this unbalanced proportion, this unbalanced proportion is unfortunately at times to be taken as encouragement for the prejudice that autism is strictly a male trait. Even professional studies done on autism often focus primarily on males with ASD (autism spectrum disorder), while not addressing the issues that females with ASD face.

Society has an easier time labeling a man as “odd” or socially challenged than doing so for a woman. One of the core defining characteristics of having autism is having social difficulties and, as such, many girls with autism go undiagnosed until their adults with many of them being misdiagnosed when they were younger. Females are somehow expected to have exceedingly good social skills. They must appear kind and gentle and not easily tempered and they can be judged harshly based on how they look and behave. Females with ASD might not adhere to American’s standards of beauty or not appearing “ladylike”. They are particularly vulnerable to such judgement because one of the characteristics of autism is experiencing difficulty in not understanding a lot of the dogmatic social rules that govern society.

I like how one of the authors of one of the post describes bodily autonomy on her own terms and relates it to having autism. One of the major issues that feminism deals with is uninvited sexual advances that many girls and women deal with, such as catcalling and rape, which feminists place under the phrase “my body, my choice”. This author, however, points out that this phrase means far more to her than just the issue of rape culture. To her it means portraying her body through her mannerisms and behaviours, exactly as she sees fit without being teased, ridiculed, or outcasted for it. Even some people who call themselves “feminists” are not true feminists; they are only advocating for the most privileged of women without giving a voice to other women who may experience different issues. Such people frustrate me because they’re completely missing the point of what feminism is all about: equality for all.

Given this analysis of these social factors that come into play in diagnosing boys and girls with ASD, I am a bit skeptical that the diagnostic rates are accurate when it comes to displaying the actual proportion of males to females with autism. I am not dismissing here the negative or unfavourable reactions a male with autism might receive in not having good social skills (a lot of this blog has been after all about my own social difficulties as a male with autism). Rather, I am emphasising how gender roles in society make this especially hard for females with ASD. And this is what makes autism a feminist issue.

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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.

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.

At the Intersection of Autism and Perfectionism

A few months ago, I remember getting a book called Unwritten Rules of Social Relationships. It’s by two well-known autistics on the autism spectrum Dr. Temple Grandin and Sean Barron. The book goes into detail about how these two autistics dealt with the social world around them and the lessons they learned from it. Most of the chapters were under the heading of an unwritten social rule, which is a social rule that comes innately for non-autistic individuals, but doesn’t come or doesn’t come completely understood by autistic individuals. One chapter that I loved was under the unwritten rule: Everyone Makes Mistakes. It Doesn’t Have To Ruin Your Day. It goes into detail about how both Temple and Sean reflects on their difficulty in comprehending and accepting this rule and how they each pursued perfectionism.

This was an opener for me because before I read the chapter I didn’t realise that autism and perfectionism were closely linked. I certainly had both and they both certainly brought me difficulties in adapting to this world. I already elaborated in a few earlier posts how perfectionism has played a big part in my life. While I did think there was probably some overlap between my autistic and perfectionistic tendencies, it wasn’t until I read the chapter in Temple and Sean’s book that I finally realised how much they did overlap how strong the connection was between.

A couple of the things that Sean tells about that I could certainly relate to would be the following. Sean talks about how difficult it was in asking for help with something because admitting you needed help meant admitting that you’re not perfect. One example he gives is when he was working as a teacher’s assistant at a private preschool. His boss constantly singled him out and criticising and reprimanding him. The worst that happened was when he was trying to supervise the kids outside. He couldn’t handle everything that was going on, and some of the kids had gotten up on picnic tables, which they weren’t allowed to do. His boss then came out, shouted at him and threatened the loss of Sean’s job. But Sean didn’t know that one of the rules was asking for help. He says “So absolute in my mind was the idea of avoiding mistakes that admitting I needed help meant admitting I was not perfect”.

This line of faulty thinking occurred a lot in my own life. There have been a lot of times when I didn’t ask for help with something when I could’ve had. One of the earliest examples is when I peed my pants in grade 2 (that was embarrassing!). But I didn’t realise that I could’ve just raised my hand and asked to go. A more recent example was in high school and how my chemistry teacher pointed out that I could benefit from some extra help. I wouldn’t have asked for help otherwise. Even Dad questioned me on it before I did anything and got me to admit I needed the help. Or in junior high, like pretty much everyone else, developing crushes on the opposite sex. In junior high, my peers were more or less open about who they had a particular crush on and while there was a bit of teasing with some liking it more than others I get the sense that a lot of people supported one another in this area of life. I, on the other hand, usually kept quiet about who I had a particular crush on and would only admit one, which was rarely enough, in the most discrete circumstances. When everyone found out I had a crush on a particular girl in grade 9, I was too embarrassed to talk about it with anyone. I remember talking with my aunt when I turned 20 how when she read my novel that featured a teenage boy Ray developing a crush a girl named Lucy she was astonished to see me writing so convincingly about how Ray felt toward Lucy because she had never seen this side of me before.

Another perfectionistic tendency that both Sean and I have is our denial to admit we did make a mistake when we do.  When Sean did this, it would only make the mistake into a bigger deal. I remember a substitute French teacher in grade 12 actually phone our house asking where my project was when I didn’t want to tell her how tough all the work was at the moment in the very tough IB (International Baccalaureate) Program I was in.

I would also like to share one other thing that Sean says, “So, with all this going on inside me, the last thing I needed was to be told that making errors was an inevitable part of what I was trying to accomplish. I hated making mistakes because I felt that I was a mistake.” This is the central feeling of it all, the feeling of being a mistake. But as the years go on, I’m beginning to see more and more that the opposite is true.

The Ultimate Test

Here is another poem I wrote. It’s somewhat similar though also somewhat different than my first poem A Foreign Autistic World. This time I tell of an experience in my life that certainly has been impacted by my autism, but is an experience that a lot of people, autistic and neurotypical, can relate to.

Even though I’ve always been single, I’ve wanted a girlfriend for several years now. I view romantic relationships as being the most challenging and the most difficult relationships to establish with someone else. You aren’t asking someone else to be friends, you’re asking more than that. And for me being autistic and having difficulty establishing any kind of friendship with someone else, I view it, as the title says, as the ultimate test.

The Ultimate Test

Here is a problem a lot of us face
even though it may be easier for the rest
like any ability only some possess.
But for some of us it is the ultimate test.

I can hardly concentrate on anything else
whether it be school, work, or an activity.
All of my senses just zoom in on her
whenever she is in the vicinity.

I am eager, I am impatient.
I just want to be with her right now.
Most of the time she is inaccessible
and when I do see her I can just go wow.

When I do get a chance to talk to her
a great deal of courage is required.
And the more I don’t know her, the harder it is.
Often she slips by me not inquired.

I don’t want her for the obvious reasons
for lust and sexual yearning.
Just for someone to get emotionally close to.
Only this will build a bond of greatest burning.

I contemplate the possible reasons
why she might reject me and say no.
Maybe she’s already with someone else
or her interest in me is just too low.

And whenever she does reject me
disappointment overwhelms me and I moan.
It helps to pause and take a break from everything
and to remind myself it’s her loss not my own.

It is like a trial and error process
where each time you get a little better at it.
And you get that much closer to the right one
the one who is perfect for you and will fit.

It’s All a Matter of Strengths and Weaknesses

As I go through life I can’t help but observe that a lot of what I’m good at is not typically what the average person is good at. Also, what I’m not good at is not typically what the average person is not good at. Of the former, I’m talking about such things as my innate talents in math and philosophy and academia in general. Of the latter, I’m talking about such things as finding it difficult to make and maintain friendships and having a lack of social intuition. Also, while my autism has contributed much in the way of the weaknesses I don’t think autism is anything more than that. My autism is solely a contributor to my own sets of strengths and weaknesses and most of all to my own individuality. I don’t view it as a disability.

Let me elaborate. While I certainly think autistic people do need help with certain life tasks that non-autistic people won’t need help with, I don’t think this is any reason to view autistics as being any more deficient than the rest of us. It is only a different way of being and thinking. The problem lies in the fact that autistics are in the minority and so the world isn’t properly designed for them. In other words, autistics really only need help because they aren’t designed for the world as it is and not because of any intrinsic characteristic. If the majority of us were autistic, I think the world would be a rather different place. For example, social norms would be different. You’d probably be expected to talk in a straightforward literal sense with no chitchat or talking simply for the sake of talking. Conversations would have more logic involved and go about three times as slowly. Face-to-face communication wouldn’t involve body language or at least body language that wasn’t explained by what you say. Loud crowds of people at places would be a lot less common. In such a world, those who weren’t autistic would be the outliers and hence they would be the ones who would be labeled as having a disability, not the autistics.

If you think I’m somewhat too extreme in my view here, feel free to comment. It’s just my personal philosophy. I’m no psychologist, but I think the above explanation as to why we label people autistic would apply to a number of autistics, maybe depending on how severely affected one was with it.

There are a number of autistics, however, who have many admirable talents, such as me, and if an autistic individual has a talent that is quite admirable and rare as to be called a gift, they are called an autistic savant. Of course, there have been a number of famous individuals throughout history who while they had great gifts, they lacked a lot of everyday skills that the majority of people seemed to have. Albert Einstein, for instance, was one of the greatest scientists who ever lived, but he couldn’t tie his shoes and had difficulty in leaning to talk as a child. What is more, very smart talented people who lack everyday skills has become a fascinating characterization to use in the entertainment world. For example, Sheldon Cooper on the popular T.V. show The Big Bang Theory is a prodigy who’s a gifted physicist, but can’t seem to relate to people in a neurotypical way.

In bringing up the concept of such characterizations I only want to point out that no matter what your strengths are and no matter what your weaknesses are they are natural to you. They are part of what makes you a unique individual. How you compare to the rest of society isn’t nearly as important. What is important is self-acceptance and the acceptance of others. You embrace your strengths and your weaknesses, as well as the strengths and weaknesses of others. Being open in this manner requires you to drop any preconceived notions you might have about what combinations of strengths and weaknesses are ‘normal’ or ‘abnormal’. The concept of what’s normal simply can’t be applied. As my aunt likes to say it would be good if everyone understood that everyone, autistic or not, is odd in their own way. It’s why she likes my poem A Foreign Autistic World so much that I shared in my second post. We’re all ‘a little queer’.

Yes, I suppose I do fit the characterization of the stereotypical introverted mathematician with no social skills at least a little bit, which I think is fun to joke around a bit, but you can’t lose sight of the big picture. I’m human with my own sets of strengths and weaknesses, which come natural to me regardless of whether anyone thinks them normal or weird to have. In this way being autistic isn’t a disadvantage. It’s a blessing.

On the Difference Between Friend and Acquaintance

In my first post Settling for What I Had I discussed a lot about how autism has influenced the social aspects of my life, particularly with my peers. I would like to continue that discussion in this post. If you’ve read the first post, you know that it was easy for the majority of people in my life to like me. The hard part was, and still is, turning any acquaintance-ship into a deep and a meaningful
friendship.

Getting acquaintances I find especially easy. Whether I’m at school, university, or being employed or volunteering somewhere, they are easy to come by and make. They would be my classmates, fellow students, or other employers. All I have to do is smile and say hello and maybe ask how their weekend was or day is going. And if they greeted me the same way, I would answer politely. Turning any such day-to-day correspondence into a friendship on the other hand, requires something more than being a nice person. You have to open up more, treat the other person with priority, and in general you have to be with them more. Yes, it is all right if you wind up getting busy. After having spent four years in university, I know how tough this can be, especially in mid-term periods and periods right before exams. We can be up to our necks in papers and in study material. Given this it’s obviously ridiculous to expect friends to be with their friends all the time. That just isn’t doable. They should, however, be there for each other on a regular basis even if they do not see each other for the odd couple of weeks. At least that’s my impression. Feel free to comment if
you think I’m mistaken.

While I did improve on my relationships with my peers in university, it really was only the beginning for me. The time element that I mentioned above was a main obstacle in my path (though certainly wasn’t the only one). I was a perfectionist with my studies. In my first year, I put in 75 to 80 hours a week on my school work. I backed off that amount for my next three years and put in about 30 hours less each week. And my straight A average stayed the same. Yet even for those three years, perfectionism did manage to creep in a good bit of the time.

And the clubs and societies I was involved with too. Even though I was at a small university that had only about 3000 students, there were quite a lot of activities to join, and I often signed up for more than I had time for from Improv to Ultimate Frisbee. More clubs meant, of course, more acquaintances, but less time outside to spend with potential friends. I’ve heard the advice at least twice that if you want to get more connected with people, get involved more with what’s going on. This may be true to a point, but speaking from experience, you can go too far. It’s always good to make sure there’s enough time outside of ‘anything official’ to develop strong friendship bonds with acquaintances you know. It’s this commitment to time outside that is a key separating factor between an acquaintance and a true friend. Again, if you think I’m mistaken, feel free to comment. I’ve managed to do a few such things with fellow students at university, which helped make me feel less lonely. Watching a movie with someone, going up to the dining hall together when in residence, and going to see a play with a fellow student were a few things that I did. For the last of these, I actually organized with someone I met at the Improv group to go see a play in a nearby town. This was just before I graduated this spring. I organized the taxi rides and we split the fair. Another thing that I did that I’m equally proud of is telling peers about my autism. This is certainly another step forward and shows what I believe to be another key factor in what separates a friend from an acquaintance. You have to be prepared to open up more. For the first time in my life I was actually starting to open up to who I truly was. It is these small changes in my behaviour that I’ve been able to manage that has given me much hope for the future.