Tag Archives: disabilities

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.

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.

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.

And Now for Something Completely Different

Just as Temple Grandin’s view of autism, in her book, The Autistic Brain: Thinking Across the Spectrum, doesn’t speak to every person on the spectrum, neither does this blog speak to everyone. I write from my own experience as an 80-year-old woman, self-identified as high-functioning Asperger’s in my late 60s, and from what I’ve learned over the years, both before and after. Much of the learning has been about intellectual development and creativity, and that is what will guide this blog.

There’s a quote from author Toni Morrison that can apply to blogging as well as to writing books: If there’s a book that you want to read, but it hasn’t been written yet, then you must write it. This is the blog I’ve wanted to read, but no one has written, so it’s time to write it myself.

Disorderly Minds isn’t a personal confession blog, nor is it a guide to living on the autistic spectrum. It will focus on the intellectual and analytical aspects of Asperger’s, with particular attention to imagination and creativity. For comic relief, it will also wander every so often into the stranger aspects of the neurotypical world, including the daily news.

What is it going to be about? Here are some of the ideas I’ve jotted down so far:

  • Aspie views of the world around us, how it functions, why people behave as they do
  • How the outsider view affects mental development, from early childhood through adulthood
  • If you are a writer, or want to be one, how the outsider view and a differently wired mind affect creativity
How undiagnosed Asperger’s affects intellectual development, creativity
  • Growing in wrong directions under “helpful” hands — or no hands
Is Asperger’s a basis for unusually original writing?
  • The influence of temperament — introversion/extraversion
  • Cognitive complexity
  • Identifying and learning to use the hidden gifts

Disorderly Minds will reflect my exploration of these topics, so I may change my mind about some of them over time, or pick up topics I’ve already discussed and look at them from another angle. I’ll be looking at what the “experts” have to say about Asperger’s functioning, and what aspies themselves have to say. If there is a central theme here, it is to help intellectually talented aspies do an end run around the concept of disabilities and learn how to use their differences creatively.