Tag Archives: diagnosis

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