Tag Archives: adults

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

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.

Those Self-diagnostic Tests

I became aware of the subject of autism very late in life. In the course of trying to determine whether the characteristics that had always set me apart and given me problems were signs of autism or just me being weird, I took several online self-diagnostic tests. And for a long time, they just complicated the problem of whether I was or wasn’t on the spectrum. Every test said that I was barely on it, nearly as neurotypical as autistic.

Why did I persist in my search until I was sure, one way or the other? Not to be part of a group, not to be officially recognized. Not to add to my already numerous physical and mental problems, to see myself as a collection of disabilities. It was to better understand who I was and what had made me the person I became, and, possibly, stop blaming myself for traits that are inherent in my makeup. To better understand them so that I might find ways to ameliorate some of the problems, as far as that’s possible.

I now understand that there was an important factor keeping me close to the edge on those tests. I answered the questions as the adult I was at the time rather than the child or adolescent I once was. The importance of maturity is mentioned now and then, in articles, but it isn’t given as much emphasis as it deserves. Depending on intelligence and the severity of the traits, we gradually learn ways of coping with our differences from the norm, not all of which have to be viewed as disabilities.

If you are an older adult with a high IQ you have a lifetime of learning and adapting behind you. Add to that, the design flaws of many tests, not just those concerned with autism. One major flaw is that most tests force you to make choices that don’t in any way reflect your personal reality. I can go all the way back to high school in my memories to support this. On a job aptitude test that all students were forced to take each question had two choices: either this or that. Every question had to be answered. The result was that I supposedly had an aptitude for and would work best at a job that, in actuality, I would have hated and eventually rebelled against.

Why did this happen? Because the test was oriented to the standard jobs that the majority of people do, in fact, work at. There were no choices that would allow for creativity of any kind, certainly not the desire and ability to create your own job. No entrepreneurship, no chance of opting out of the pervasive work ethic and doing something else altogether.

In the same way, most self-diagnostic tests for autism force choices based on assumptions.

http://psychcentral.com/quizzes/autism-quiz.htm – does take account of changes with maturity. But it also forces yes or no answers to poorly stated questions. A typical example is “It is difficult to figure out what other people expect of me.” You can’t answer sometimes; the choices are never, now and when I was young, only now, or only when I was young. Is a failure to understand caused by your supposed disability or because the other person hasn’t made it clear what they want from you? The assumption is that failure is an outcome of a disability.

https://www.aspergerstestsite.com/75/autism-spectrum-quotient-aq-test/ I retested myself on this one quite recently, and came out barely on the spectrum, just as I did when I took it several years ago. It was designed by Simon Baron-Cohen and his colleagues at the Cambridge Autism Research Centre, and allows for the fact that whatever problem you might have you don’t necessarily have it all the time. But it is entirely present-oriented. “I am…” “I enjoy…” And that’s the crux of the problem. It tests for who you are now as if you never learned anything over the years about how to manage the factors it asks about.

If you are intelligent, analytical, and self-aware, you will have found ways to avoid problem areas, or to compensate for them. Which means that if you’re taking this particular test or one like it, you will get a more accurate score if you answer as if you are much younger, before you learned, either with assistance or on your own, how to work around the “disabilities.” Not that it will be completely accurate if the test requires you to answer every question. Why not? Because you probably won’t remember what certain things were like when you were younger. For instance: Question 3. If I try to imagine something, I find it very easy to create a picture in my mind. Today, I would slightly agree. But I have no memories about that kind of thing from earlier in my life.

Self-tests can be useful, but they may not be completely accurate. Proceed with caution and common sense.