I was diagnosed with attention deficit disorder when I was 26. But looking back now, there were two incidents during my teens when I probably should have been referred for an evaluation and wasn’t, *precisely* because of the assumption that if I did have ADD then surely I would have the diagnosis already. One context involved me playing with a computer game out of curiosity only to find out that it was actually a test being developed to help assess the ability of deaf people to sustain their attention (there were similar tests already for hearing people used to assess the possibility of ADD/ADHD, but those tests involved sound, so this was an alternate test). The guy working on developing this test happened to have it on his computer when some other teens came into the room, decided it was a computer game, and started playing with it, and I eventually joined them. Since no one was doing any harm or interrupting his work, the guy allowed us to play with the computer program. But then he happened to look at my test score and noticed that it was consistent with what you’d expect to see in someone with ADD, so he called me in to ask if I had ever been diagnosed, or if I ever had problems with attention etc. I was not conscious then of having problems paying attention (though actually I did in some contexts) and I don’t think he asked about things like being organized etc., so I said no. And he concluded that it must not be worth worrying about because, if I had ADD, I would have been diagnosed already.

Also during my teen years, some of the sign language interpreters in some of my classes reported to my school counselor that I was having trouble paying attention in class. My counselor even mentioned the ADD label, but then concluded that I couldn’t have it because I wasn’t diagnosed.

Because of those two missed opportunities, it was only years later when I read up more about ADD and recognized myself in other people’s stories (the Internet helped a lot for that) that I finally figured it out on my own and went for the diagnosis.

It probably did not help that, 1. I was a girl (ADD being mostly diagnosed in boys, meaning people don’t look for it in girls, especially not when I was growing up in the 70s and 80s) and, 2. I had the primarily inattentive/ “daydreaming” type, not the hyperactive type (hyperactivity is more “obvious” and more well known type, which means that people often don’t think to look for ADD if hyperactivity isn’t present, again especially not in the 70s/80s)

@ Nightstorm,
“But brainchatter is making that hard to correlate into usable written words instead of word-thoughts and flashbacks.”

I get that a lot as well and it’s really frustrating. I much recommend experimenting with different writing styles and/or using completely different forms of expression, like the comic style posting that we do on T & K (tagged as “Cut-Ups”).

Glad to see that your blogroll is sort of up again. You can add ours to it if you want.

Meowser, I’m another adult who was assumed to have ADD. “Hyperactivity” was the term they were using when I was first dx’ed; at least it wasn’t Minimal Brain Dysfunction. :/ I do know a number of other people who, if they got a label at all, it was that one. Frequently with some other labels tacked on to cover the “symptoms” not explained by ADD/ADHD.

That is why I say it is all cultural, even a matter of fashion, and so is much in mental health generally from the dx, to the prescribing.

Well put, Larry. That sums it up well. “Evidence based” certainly does not.

Larry: Yeah, I once went into a university library, checked out everything I could find historically on autism, and read through it all. When the information had settled into my brain, the idea I was left with was that while people were noticing something, it sure wasn’t a cohesive something that was passed down unchanging from Kanner, and it sure seemed as if a lot of them were making stuff up as they went along. (Including building on top of building on top of building on top of crappy assumptions that Kanner or other earlier observers made. I also read very closely when I read things by these people, and found that half the time what they described the people they were looking at actually doing, and the ways they summarized their descriptions, were completely at odds with each other.)

When I was doing this, I also read up on childhood psychosis, which there used to be something like 20-something different varieties of, and now there’s only a couple, with a surprising number of them being later put into autism. (Since it was okay to consider “social withdrawal” psychosis in those days.) And of course going back even further and reading stuff from the 1800s about stuff that’d later become schizophrenia, there were people who showed no sign of hallucination, had social and speech problems as kids, and had things that were considered delusional when they looked like what would today be called obsessions. So it looked like some of us were part of that mix, too. (I also found something talking about a “special variety of imbecile” that bore a strong resemblance to autism, from the early 1900s.)

So… yeah. It shocks me that this is considered a science, when it seems like it has a huge tolerance for people who just make shit up and call it research, and people who don’t make stuff up themselves but unquestioningly build on people who did.

It certainly used to be the default dx in adulthood, indeed even for those who have been previously dx’d with autism before, but whose dx’s have lapsed for cultural and pragmatic reasons. (eg. they were never told about it)

I was dx’d Asperger’s when it was still popular, as the default when there was no evidence of ‘significant’ speech delay, in other words because my parents weren’t around to comment on that.

I do not believe any diagnosis is particularly accurate or maps on to real world phenomena 100% this indeed is a fault with the genetic studies, because if they had found a gene, surely it would result in 100% mapping, not just a significant statistical probability greater than the controls (some of whom also carry the gene statistically)

That is why I say it is all cultural, even a matter of fashion, and so is much in mental health generally from the dx, to the prescribing.

I have just discovered a ‘disease’ called Arnold’s syndrome, hey that is actually named after my family name, not some Dr who I have never even met.

And yes, when I wrote that, part of it was because I was in the 101 stage myself, and part of it was because I knew most of their readers probably were, too. The response I got from a lot of people — “wow, maybe I’m autistic too and didn’t know it!” — seemed to bear that out.

It’s like they use speaking/etc. autistic people to beef up their numbers but then pretend they don’t exist the rest of the time. Huge pet peeve of mine.

Oh gods yes. Kind of like the “obesity epidemic” panic-mongers who talk about 66% of Americans being “overweight or obese,” when that counts the hard-body gym rat dudes with big muscles and women who wear like a size 8, and they they illustrate the stories with pictures and video people who have BMIs of about 50 or 60, when that’s a tiny subpercentile portion of the population. (Not that they should be witch-hunted either, any more than lifelong nonspeaking autistics in assisted-living facilities should be. But still.)

And then there’s the equally headdesky (to me) meme that tens of millions of perfectly neurotypical people are running around claiming to be autistic (i.e. aspie) just because it’s hip and cool, or they want attention (or drugs). Yeah, okay. Millions and millions of people are faking a disability, just because. (Besides, we know it’s ADD people who get all the good drugs, not aspies. /snerk)

(And yeah, I carried an ADD diagnosis before I got the Asperger’s one. I’ll bet a lot of autistic adults do.)

Yeah, I saw that BADD piece (2008) you did on how you spot autistic people, that was amazing. So true. I kept saying, “Oh yeah, that happens to me,” or, “My grandfather did that,” or, “That’s how I was with my friend in sixth grade.” Not for every thing you mentioned, but for enough of them. I can even see how the prediagnosed autistic people I met interacted with me in ways like magnets repelling each other at the plus poles, because we just didn’t know. We couldn’t recognize each other, only that, “Boy, so-and-so really doesn’t like me,” or, “Geez, they’re so weird. I know I’m weird too, but they’re REALLY weird!”

I also don’t think the difference between Asperger’s and autism is anything other than historical accident as to what traits got seen as what. Some of Kanner’s original patients would probably now be diagnosed with Asperger’s or not diagnosed at all (and nearly all of them had speech, some of them spoke quite early, etc). And that, to me, says it all.

I was diagnosed when I was 14, and it took me nearly ten years to fully come to terms with what it meant.

And I think actually that anyone who’s an adult right now is probably in the range where it’s been vastly underrecognized children. Especially anyone over 25, and certainly even more so anyone over 40. I’m completely not surprised that the numbers are now over 1% (I think they will find even more people than currently have been counted, in fact) because that’s what I have always seen looking around me.

(The really high numbers count people who can to some extent pass for non-autistic. Which makes me think it’s really hypocritical when people use the numbers to say something like “Over 1% of children are autistic, and will never speak and never interact and…”. That’s totally intellectually dishonest. Because most of that 1%-or-more of people can speak and interact, many can pass in at least some situations, etc. It’s like they use speaking/etc. autistic people to beef up their numbers but then pretend they don’t exist the rest of the time. Huge pet peeve of mine.)

So I really expect that given the numbers they’re finding in kids, autism is way way way underrecognized in nearly all adults, let alone the much older ones from before autism became known. (It was only 1980 when it was in the DSM, and 1987 before there was a definition that allowed autistic people to interact with others at all. And since even those said not to interact with others pretty much universally do interact with others in ways that aren’t obvious to most people… yeah. Argh.) I am pretty good at noticing people who’d now be designated as autistic, and we are really everywhere.

And btw the things about your article that I went ‘meh’ about it mostly struck me as “this person was really new to this when they wrote this” things, and not really hugely substantial things. Overall I really liked it.

And I’d better quit rambling or I’ll begin to talk in circles.

As someone who got DX-ed well into adulthood, and knew zipadeedoodah about autism before that, I’m coming to believe that “Asperger’s” as opposed to “autism” really just means “later DX because of no speech delay,” sometimes even “much later DX because of no speech delay.” (I believe autism is way way WAY underdiagnosed in people 40+, because when we were kids, diagnosing a kid with autism was fighting words. You know, refrigerator-mom stuff. But looking back, I knew plenty of autistic people growing up, including some family members.)

But when we’re DX-ed that late, often we’re told something very different, that we’re not like Those People Who Play With Their Shit, we’re oh so special! And I have to admit that if the shrink had said, “You have autism” instead of “You have Asperger’s,” it would have been harder for me to digest, because I believed all the same ridiculous stereotypes as everyone else. It’s been two years for me and I’m still trying to sort all that out.