Category Archives: Asperger’s

On the Outside of the Outside

I’m giving serious thought to closing down this blog. As has happened so many times, I find that it’s difficult to keep more than one blog going with any regularity. It’s partly a matter of available time and energy. More critical is the difficulty of sticking with a specific topic, and staying within the bounds of what that topic is concerned with. Maverick Writer, my writing blog, has been running for almost seven years because the central topic allows for so many side paths.

The third reason why this blog may not continue is its lack of relevance to most people on the autistic spectrum. The title of this post: On the Outside of the Outside, has two meanings. One is that my personal experience of autism/Asperger’s is so “mild,” so “high-functioning,” that it barely relates to the experience of other outsiders, as that’s expressed in their own blogs. I am so far out on the fringes of the spectrum that I can’t relate to most of what they write about their lives and experiences. By the same token, it seems that my perspective is one that very few on the spectrum will relate to.

Blog posts by people on the spectrum tend to break down into two categories. There is the very personal post, which concentrates on the blogger’s experiences and feelings. Then there is what I call the “catch-all” post, which approaches autism/Asperger’s as a collective in which everyone is considered to be part of a community of similar experiences and feelings. “Me” or “we.”

Even if I believed my personal experience had wider relevance, as an introvert with a strong need for privacy, I have no interest in writing “me” posts. But I also have no interest in writing “we” posts, for the simple reason that much of what is considered the autistic community is a construct, created out of elements that, as often as not, have no basis in what we know as the autistic spectrum, but in the infinite variability of human nature and the human mind. I’ll go further and say that autism itself is a construct and the so-called spectrum is an attempt to unite all its elements under one umbrella. The impossibility of doing this is the root of all the arguments and dissension about who is or isn’t autistic, what autism means, how it should be regarded, how autistics should be treated and how they should think about themselves.

Because I see patterns of thinking and behavior in a much larger context than autism, I can identify the many ways in which thinking about autism is similar to or identical to thinking about other issues. In other words, much of what autistics think is special about the spectrum, isn’t. I would hesitate to say that autistics see themselves as special snowflakes, but that’s one perspective.

Here are a few of the patterns I see that are present in any group of humans but which autistics see as exclusively theirs. Creating “community” out of perceived commonalities (that may or may not exist), based on disabilities. Defining disabilities out of existence, disregarding the very real negative impacts they have on some people, and labeling those impacts as talents or special abilities. Further converting disabilities to a kind of superior status, negating the negative implications of disabilities and allowing for a personal sense of superiority. Insisting that the public at large should recognize their existence and problems, and alter their attitudes and behavior.

We see these attitudes among the blind, among the deaf, and probably in any disability group you can name. Any group of people who are in some way ignored, or mistreated by the general population will, if they can find each other, form groups that are not only supportive, but intent on changing public perceptions to the point where failure will justify withdrawing from the larger human community, and establishing their own culture and traditions.

All of this presupposes that you define your identity as a part of a group. But who were you before you knew of the group? Who would you be if you were no longer part of it? These questions are identical to those asked by people who have lost their religion, and the community that revolves around the religion. Not that constructed communities are without value. Without them, many people would be entirely on their own, without any type of support.

What I question is the tendency to identify with a group so strongly that it determines how you think and act, that it can become who you are. Everything in the rest of the world is either legitimized by it or rejected as valueless. More critically, it can become the sole measure of how you view and value yourself.

Discovering that I’m on the spectrum was useful because it explained a lot of my differences from the norm. But I have no more interest in defining myself as a person with autism (or as an autistic/aspie) than I have in defining myself as a _____ patient now that I’ve been diagnosed with a major health problem. In both cases, I deal with the problems individually, as necessary. Both may be decisive, in many ways, in determining how I’ve functioned in the world, but they do not change the core of who I am.

And that brings me to a question I’ve pondered often: why is it that so many people have no sense of self, or such a fragile sense of self that it’s dependent on external factors. That dependence is the basis for so many fights in defense against perceived slights or criticism of communities. If a community, or a belief system, is absolutely necessary to your self-image, then an attack on the community or belief system is an attack on you.

Is this post an attack on the autistic community? It isn’t intended to be, but can easily be perceived as such. How any reader views it will depend on the extent to which they have allowed autism to determine who they are.

Social Chatter — Not Exactly Phatic

If we’re at all self-aware, we’ll gain new insights about our selves throughout our lives. I spent a good two years of deep self-analysis to determine whether I was or wasn’t on the spectrum, so it’s somewhat amazing how much I continue to discover about myself. Phatic communication, for instance. Long before I heard the term, I was aware that I sucked at the short, shallow responses to the short, shallow questions that are a part of being superficially social. It turned out, that like many on the spectrum, I relied (when I could remember them) on scripted resonses. I still stumble and mumble if the right script doesn’t pop into sight.

But it’s the bigger social thing — still mostly superficial, but seemingly a big part of normal life — that I can’t deal with unless it’s with a few people that I know very well, and can share at least a few things with in casual conversation. That insight was nowhere to be seen the day a Very Important meeting was declared for the volunteers of a charity thrift shop where I donated a few hours a week. The store was closed, and meeting time came, but instead of business, everyone was standing around, chatting. And chatting. And chatting.

So what did I do? I told the woman I worked with to give me the highlights of the meeting, and anything important, and went back to work. As it turned out, the meeting wasn’t about anything terribly important, and the necessary information could have been conveyed in less than five minutes. So why all the standing around and chatting? Today, I understand, but back then, I just saw it as a mysterious waste of time that I could be putting to better use. Today, I recognize it as a socially necessary waste of time that could be put to better use, and one that I still avoid.

Just like forum sections that are set aside for conversation about anything but the official purpose of the forum. Social lubrication, a way to avoid getting down to work, an amusing distraction — whatever. I avoid them like the plague.

And They Just Keep Coming

Insights, that is. After two or three years reading everything you can find about Asperger’s, and digging up the forgotten aspects of your life as you read, you’d think you know every relevant fact about your relationship with the spectrum. Then you realize, having it shoved in your face by a new source, that an essential part of yourself is so blatantly Aspergian you wonder how you could have overlooked it. Just didn’t make the connection because it didn’t seem that significant? A rampant case of denial?

I didn’t have any negative emotional reactions to discovering that I was on the spectrum. In fact, it was a relief to learn that there were valid reasons for the many ways in which I don’t function according to society’s expectations, so denial is pretty out of character. Most of my Asperger’s traits are more or less invisible, while this one, if you’d known me for a long time, would be clearly visible. But that’s the catch. There’s no one who’s known me for more than a few years, and the evidence is so spread out over the decades that you’d not only have to have known me for all that time, you’d almost have to be an aspie yourself to have noticed it.

So the insights keep coming, though I think some facets of my early life, the ones that would have been identifiers if diagnostic measures had been available at the time, are unrecoverable. It’s been a long time, and memories fade. I also believe that in some areas, I simply didn’t form memories. That made taking the online tests more difficult and added to the length of time it took to persuade myself that I was going about the process of self-diagnosis honestly. How can you answer  questions for which you have no answers? That might be something to take into account if any of those tests are ever revised. Allow for “I don’t know.” Because there’s a lot I don’t know, and I sometimes wish I did.

I’m about halfway through Neurotribes and wish I’d read it much earlier.

March 10 Odds and Ends

I do these odds and ends posts on my writing blog every so often, but this is the first for Disorderly Minds. So don’t expect a long ramble on one topic today. I’m not always that organized, cognitively, and there are always bits and pieces of the world floating around that don’t require a great deal of attention.

Such as what I’m currently reading. It’s usually two or three books at a time — one or two nonfiction, and one kick back and relax fiction. Or a reread of a novel I love but haven’t read in quite a while.

The aspie-applicable one I’m digging into right now is Neurotribes. Yes, I know it’s been out for quite some time. I’m always behind (behind a pile of books waiting to be read), and I don’t normally buy books when they’re brand-new. I want to see how well they age, but cost is also a big factor. I’d prefer to own an ebook version of a monster like Neurotribes, but the budget said no way, so I have a nearly-new used print copy. I’m being slowed down a bit by the need to keep shifting my support for this doorstop, in spite of sharing half my lap with a cat. Is that a unique reason or not, for taking longer than normal to get through a book?

The book is well-written, engaging, and does a great job of covering the history of autism. Lots of stuff I didn’t know about, lots to think about. I’m only about 200 pages in so I haven’t hit anything that I vaguely remember some reviewers objecting to.

I’ve been reading a lot of aspie blog posts, and keep running across things that annoy the hell out of me. One of them is the way that too many aspies attribute some of their personal traits to autism when they aren’t. Being on the spectrum doesn’t make you spiritual, or give you a deep relationship with nature, or any other qualities that some people seem to require as ways to distinguish themselves from those “other” people. It’s awfully easy to identify so strongly with autism that you forget you’re human in most ways.

The other thing that’s increasingly pissing me off is the acceptance of medical terminology that frames everything in terms of diagnoses and disabilities. Maybe one of these days I’ll start collecting them and breaking them down into normal language. Just for now, I have to ask if a special interest is a normal interest if it’s pursued by someone not on the spectrum.

To Be or Not to Be — The question of “Passing”

Passing is an interesting concept. Before I learned about autism and started reading up on it, I was familiar with the term only in the context of race. And to tell the truth, it still whizzes by me as something to consider when thinking about autism and Asperger’s. One of the taken-for-granted traits of females on the spectrum is that they are better than males at passing. Girls are more likely to want to please, to be part of a group. They are also thought to be better at “faking it”. And failure to pass is a source of considerable unhappiness.

I’m not questioning any of this, but it doesn’t ring any bells with me. As I look back over my life, I can see that there were occasions when I wanted to do some of the things that my age peers were doing. More often, I was stubbornly going my own way. It was paradoxical, really, because I was an extreme introvert, and also very shy to start with, and my deliberate refusals to do the “right thing” often made me stand out in uncomfortable ways.

What I can see now is a girl who, for the first few years was frightened and confused by school and by the activities that seemed to be normal and even enjoyable for other children. My goal was to retreat and remain unnoticed, as much as that was possible. And yet… Where did the ability to “defy” the normal ways of behaving come from? The pressure to be normal came from my mother as well as teachers, so it wasn’t as if I had any psychological support.

What I can see now is that I was developing an unusually early sense of self-identity. There were no Barbie dolls or Disney princesses when I was growing up. TV didn’t exist, and movies were few and far between. There were no models for me to follow — except… Fairy tales. If I had one real obsession, right through junior high school, it was folk and fairy tales. Those were where my models lived. Heroic characters, both male and female. I didn’t realize how powerful an effect they had on me until I read an article, many years later, by Bruno Bettelheim. Yes, he of the terrible “refrigerator mother” who was responsible for her child’s autism. But when it came to understanding the impact of fairy tales, he was spot on.

Let me not forget: there were also no autism diagnoses. With all this as background, I sometimes wonder if the current emphasis on diagnosis and support is always a good thing. For the majority, very possibly. Even necessary. But as this blog has mentioned before (and will mention again, ad nauseum) for a small population of spectrum inhabitants, it might be interfering with normal emotional growth and the construction of a strong, life-affirming self-identity.

That’s all I’m going to say about it right now. It’s one of the topics I’m still mulling over, and it will come up again, hopefully more fully developed. Is “passing” a valid goal?. Can the attempt to pass short circuit individidual development? In the meantime, it’s here to provoke thought and introspection.

Women and Autism Over the Life Span

This is a theme I’ll be getting into now and then, but very carefully. The lives of older women on the spectrum have hardly been touched on, so it’s something that’s going to be difficult to do right. I’m skimming over a research study that is a rather sad commentary, since it was conducted recently, with a group of only 14 woman, and limits the age range from 22 to 30. That’s what they consider late diagnosis. And, “To our knowledge, this is the first study to specifically investigate the experiences of late-diagnosed females with ASC…”

One reason I’m not rushing into writing about older women on the spectrum, particularly those who have never been officially diagnosed, is that I want to avoid using my own experiences as the template. If this blog’s readership grows large enough that I can construct some sort of questionnaire, or just ask for personal experiences, I might have enough data to draw useful conclusions. The alternative, not an entirely bad one, would be to theorize broadly.

Ideally, I’d like to work just with women who grew into adulthood and even into old age before the possibility of diagnosis even existed. Most of the women in the study said that their lives would have been easier if they’d been diagnosed earlier. In contrast, I’m mostly glad that I never even heard of autism until I was well into seniorhood. One of the themes I’d like to explore is the pros and cons of diagnosis, at whatever age.

So this is just a little introduction to what will be coming up eventually, I don’t want that single issue to dominate the blog, though. The blog’s central theme is creativity, intellect, and Asperger’s, not gender.

The Experience of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype

Asperger’s and the State of the World

People with Asperger’s have enough of a job just coping with their own world. Asking them to care deeply about the rest of the world is an imposition, right? When I say care deeply, I’m not talking about the cheap and easy emotions of love and empathy. Neither one is intrinsically cheap or easy, but they’re tossed around as sufficient solutions to big problems, or used as props for egos, or reduced to greeting card platitudes that are available for a couple of dollars.

Being the information packrat that I am, I have dozens of articles on my computer, from back when I was learning about autism. Skimming around in them can bring up some pretty interesting stuff. Brain food. Matches to spark ideas. What was it about Profile of a Post Modern Outsider that prompted me to keep it? I’m not particularly interested in post modernity as a philosophy or a movement, if that’s an appropriate word, but this essay runs in parallel with my own approach to reality. What is post modernity? Because you do need to know that for this post to make any sense. Author Christopher Nagle offers a brief explanation.

“Post Modernity is not just an aesthetic of fragmentation or intellectual deconstruction. It is an emerging transitional period in which modern institutions and ways of life become damaged, dysfunctional, defensive and eventually defeated. (my italics) In such a time, as it becomes more turbulent and insecure, individuals and eventually entire populations must move on into uncertain and probably hazardous journeys into the future.”

Here is where Asperger’s comes in.

“It really helps to have a lifetime of outsidership under your belt. The earlier the start, the better the chances of escaping the immense gravitational pull of the dominant consciousness.”

Nagle says that his career as an outsider started very early, by age five, at least. He eventually discovered himself to be an aspie, which explained his outsiderliness. Unfortunately, he uses sufferers and disease, but this was in the less enlightened days of 2006. Everyone knows better now. Right?

He goes on to discuss a bit of history, including his own, which reached the point where, “It was as if I lived in a world that kept itself frenetically busy by overproducing and consuming mainly junk, so that it would never have to look into itself.”

Over time, “I never completely embraced the world I found myself in, partly because I couldn’t and partly because I didn’t want to. However, what I continued to do was meditate on that world to create an overview of what I was going through and how it and I had got there. I assembled both a personal and potentially collective ‘ride out’ strategy for what I felt that overview was pointing to.”

Coming back to the purpose of this post, I’ll quote Nagle one last time.

“The world is already very amply supplied by insiders whose reasonable, balanced and orthodox judgments re-enforce the overwhelming status quo. Negativity is not necessarily a vice just because the dominant culture repels it in favour of institutionalised megalomania and hubris.”

What I’m doing here is setting in motion an attack on the narrow self-involvement of so many aspies who are obviously intelligent and capable of deep levels of analysis, but never raise their heads to see beyond the autism “community.” For people who despise the idea that aspies are sufferers from a disease, they manage to collectively convey exactly that image. But that’s a topic for the future.

Personal blogs are personal, but they are also public. Collectively, aspie blogs resemble all those confessional books about abuse, drug addiction, whatever. There’s a huge difference between mea culpa or poor me, and material that can inform and show others the way to overcome. The difference between such books, and blogs is that once the book is written, it’s done. It either has a beneficial effect on others or it’s forgotten. Blogs can go on and on, with the potential for endlessly ripping off scabs and collecting sympathetic followers.

Autism will always be misunderstood, reviled, ignored, a subject of controversy. It will always require explanation by people who live with it, understand it, and have a talent for clarifying the complex issues that are central to it. And it is a valid personal choice to remain within that framework and be an explainer. Such people are needed because the bulk of autistic writing makes the same logical and intellectual errors that we find in any general selection of writing by NTs. In many instances, people on the spectrum know too little and assume too much, and add to the confusion.

So there are two issues here. 1. Understanding and explaining autism from the facts rather than one’s personal experience. 2. Moving beyond autism to the larger world and making a contribution that benefits everyone.

High IQ is no guarantor of creativity, of the ability to think through and analyze important issues, of original thinking. It isn’t a mark of superiority. That’s just as true for anyone on the spectrum as it is for the rest of the human population. The possession of those qualities should be a challenge to think large, rather than shut yourself in a narrowly defined, self-involved community. There aren’t many of you out there, just as there aren’t many truly creative artists or poets, or composers. High IQ makes you an outsider. Being on the spectrum makes you an outsider. Together, they give you a choice that most humans don’t have. To take the challenge or not.

Nagle’s article is a worthwhile read.

Who Has the Right to Define Me?

As an outlier even in what many consider a fringe population, I constantly find myself in opposition to some of the assumptions about autism and Asperger’s–made by people on the spectrum. I refuse to get involved in pointless debates that prove nothing and change nothing, but I won’t back away from presenting ideas that some will see as a kind of betrayal of “our own kind.” As if there is such a thing.

I find it alternately amusing and sad that the very statement thrown at “neurotypicals,” that when you’ve seen one autistic, you’ve seen one autistic, doesn’t really register with members of the spectrum who insist that autism must be an identity and that there is a community which encompasses everyone on the spectrum.

I can’t say at what point in my life it happened, or even whether it happened as an event, or just slowly came to consciousness, but once I felt a solid sense of who I was, I never succumbed to demands to be this or be that. I consider it fortunate that I grew up and found myself long before autism was a household word. That has given me a very different view of the current controversies than are commonly discussed and written about. It will take a while to work my way through the ifs, ands and buts, but there will eventually be a post about this issue.

Not Properly Female

So now everyone (almost everyone) knows that female autistics don’t usually present the same way that males do. A little step to the side here to tackle that word: present. We don’t present. We behave. Everyone else in the world behaves; they don’t present, so let’s drop that piece of medical or psychiatric jargon where it belongs — in the trash.

Instead of expecting female autistics to behave the way males do, the experts on how autistics function have now weighed females down with a different set of standards. We are more adaptable, and we work harder to adapt. We socialize more easily and try to fit into the social groups around us. We’re more concerned with how we look. Overall, we’re less likely to have the strange traits and behaviors that make autistics so weird.

I’m sure there aren’t any statistics to back me up, but I suspect that those standards are just so much BS. Another set of stereotypes to hang on to for people who have trouble understanding a concept like individuality. I suspect there is a point in almost every autistic girl’s or woman’s life when they say the hell with it, and set off on a path that’s comfortable for them, rather than keeping on with the struggle to fit in. That may happen early, in which case the girl avoids a great deal of the grief that occurs when you spend all your energy trying to emulate people with whom you have nothing in common.

Finding your own way of being female may very well mean that you will never be a “proper” female. And this can be a good thing. An excellent thing. Every time you let go of an expectation that others have for you, you gain a measure of freedom. Every time you give up one of those expectations, the next one becomes easier to let go of. And once you realize that you are now living a life designed by your own needs and preferences, you are free to accomplish whatever is important to you. Even if that means the rest of the world will never consider you a “proper” woman.

Another Face in the Crowd — Face Blindness

My mornings are spent scouring a dozen or so news sites, so I see the same faces over and over again. I’m mildly face blind, so it can take a while for me to associate a face with a name and with the reasons that person is in the news. But one particular face that’s getting a lot of coverage lately has proven almost impossible for me to recognize. Some of the photos show him with bleached blond hair, which alerts me, but others don’t, and I have to read the headline to find out who it is.

I realized just today that he has a face which would probably called handsome by many people. For me, handsome or not, it’s a face that just fades into the crowd, so similar in its features to millions of other men that he might as well not exist. I’m sure I’d learn to recognize him if I knew him personally and had reason to meet him many times. But the first two or three times, he would still be a complete stranger.

Which brings up a point that I’ve never seen discussed: most humans, within particular ethnicities, look very similar to each other. The human face only has a few features, and only a few ways in which those features can arrange themselves. The majority of people you meet in your life aren’t really that different from each other in their looks. What distinguishes them is your ability to discriminate between them on a rather fine basis. For anyone with face blindness, the degree of its severity will determine how well you are able to make those distinctions.

One of the interesting things about actresses (or female actors, to be more politically correct) is how alike most of them appear to me, almost as if there was a template for how actresses should look. To a lesser degree, the same thing is true of male actors.

Watching movies has always been an exercise in frustration because of my inability to keep track of all the characters. The actors (male and female) who appeal to me have one or more features that stand out enough to be recognizable even with changes of makeup and hair style. Unconsciously, I’ve also used voices as another way to keep the actors straight.

Humans like to believe that they are truly individual and unique. It’s a comforting delusion; they are similar not only in looks, but in how they think and behave. Much of society functions on the basis that those similarities are largely predictable and reliable. For anyone who is face blind, that similarity is a lifelong challenge to deal with.

Questions and More Questions

I probably shouldn’t use “meltdown” for how I’m feeling, right now, and all too often, but that really is how it feels when my brain can’t cope with the invisibility of things that are perfectly visible (and obvious) to me. The thing is that I do see things that most people overlook. A lot of that is a form of pattern recognition, and it can take a lot of strange forms that send me off chasing for more information.

I don’t intend to get into politics, but here’s an example from yesterday’s news. I imagine everyone who follows the staggering path of our new “president” is aware that on Saturday, he held a love-in for himself in Florida. And during his speech he talked about the terror attack in Sweden that was apparently going on even as he spoke. Of course the lie hit the news and the internet immediately.

Whoah! Hold on there, folks. Here’s what he actually said:

“When you look at what’s happening in Germany, when you look at what’s happening last night in Sweden — Sweden! Who would believe this? Sweden!”

“They took in large numbers, they’re having problems like they never like they never thought possible,”

Do you see “terror attack” anywhere. I don’t. He merely implied it, and everyone fell for it. As I’m sure he knew they would. I’ve seen any number of posts, articles, tweets, etc., talking about the Swedish terror attack lie, but I haven’t seen one single bit of evidence that anyone realized that’s not what he said. Am I being nitpicky? Not if you can understand that it’s an example of how easily people can be led to believe in something that didn’t happen. I guarantee that anyone you ask will remember Trump saying there was a terror attack going on in Sweden.

So that’s the kind of thing that constantly gets stuck in my craw and gives me mental meltdowns.

Here’s another, much more relevant to anyone on the spectrum. It isn’t something I was looking for; the bits and pieces just accumulated until they formed a pattern and a question. So — why is it that when I Google “autism comorbidities” all I get is information about medical and psychiatric disorders? Because what I’ve noticed over the years is that a lot of the problems people on the spectrum are dealing with are very different. A few years back when I was immersed in my autism learning curve, traits like face blindness, poor executive functioning, auditory and other sensitivities weren’t included in any list of comorbidities.

As far as I’ve been able to discover, they still aren’t. What do they have in common? They’re all pretty much invisible, and problems with them are easily attributed to other causes. Hmm. Could this possibly have anything to do with why, of all people on the spectrum, aspies are the least visible? Why they struggle with mild to severe disabilities that are never diagnosed as part of their aspieness? Why they are so easily brushed off as attention-seeking or just plain fakes?

You gotta wonder. I’d love to know if anyone with an “official” diagnosis was asked about those invisibles. Prove me wrong, or let’s explore it further.

Eugenics by Any Other Name –Eliminating Autism

Here’s a series of blog posts by Silent Wave that everyone on the autism spectrum should read. They’re based on her discovery that MIT will be doing research on autism, thanks to a $20m grant. The goal isn’t just to find the causes of autism, but to eliminate it completely. And, I suspect, by any means necessary.

Asperger’s / autism, genetics, & MIT ~ Part 1: Consent?

Asperger’s / autism, genetics, & MIT ~ Part 2: Jurautistic Park (nature likes us!)

Asperger’s / autism, genetics, & MIT ~ Part 3: The Lernaean Hydra

Asperger’s / autism, genetics, & MIT ~ Part 4: A (mistaken) “utopia”

And here’s the press release from MIT. Notice the language being used. And note (from other sources since MIT didn’t think it was that important) that the munificent donors have two grown autistic children of their own. One can only assume that they would have preferred to make sure those two could never have been born.

New Center for Autism Research established at MIT’s McGovern Institute