They still get called that, even though Autism Spectrum Disorder or High-Functioning Autism are now more official terms. What is people's experience with their willingness to acknowledge the diagnosis? I have known some who wear it as a badge of honor - it does suggest one is a science geek. I have known some who are deeply insulted that anyone could suggest such a thing - and I have limited evidence that these might be the more sever cases. I am a bit unusual in my presentation, but show some clear Aspie symptoms and I think I have to cop to more than "a touch." Yet I think the general trend is for those with the condition to reject the label.
What are the rest of you seeing out there?
Update: I can now reveal that this is based on a couple of personal experiences of friends who are clear Aspies and have made those systematizing, attentive focus, and precision aspects work for them, and are quite certain that there is nothing unusual about their social presentations. The evidence they give is that they have done well in their fields and have some friends - which seems to be true, but is only a floor in terms of social competence. That there might be other measures for social competence seems...not to have occurred to them? They don't seem unhappy, though there is some brittleness. I do worry about their declining years - and my own. But maybe not. Maybe they'll be fine, even as their supports dwindle.
There's a conflict. Does one announce the condition, hoping that people will cut you some slack when you don't quite fit, or do you let it be "need to know" and practice your skills? The label can help you or box you in, and sometimes you don't want to be defined by a label.
ReplyDeleteIt varies. Sometimes in the same person. Just my observation; no two alike.
I think you are touching here on something that I have been thinking about for some time. We tend to talk about folks as if they are in distinct categories, with no overlap: neurotypicals, or "on the spectrum." But what if we are all on some smooth, continuous spectrum, that ranges from neurotypicals -> very slight characteristics of autism -> more pronounced characteristics, that might be noticed if anyone cared to look -> quirky, awkward folks who would probably be diagnosed if ever tested -> autistic characteristics so pronounced that they can't be overlooked -> etc.
ReplyDeleteAs you might guess, I think I might have fallen somewhere in the "quirky, awkward" category when I was younger.
It's a long story, but I started thinking about this after reading a couple of Temple Grandin's books, especially The Way I See It. I kept thinking, "Huh, that kinda sounds like me." I struggled mightily with social interactions when I was younger, but finally learned enough to be able to function pretty well. It helped that I got a PhD in Chemical Engineering, and so was kinda expected to be quirky and awkward, and worked with a number of other folks who were just as quirky and awkward, or even more so.
By the way, if there is one continuous spectrum, does it run the other way, too? That is, are there anti-autistics? If the defining characteristic of autistics is is problems with social interactions, maybe the opposite is sociopathy... Heh.
Simon Baron Cohen sees Schizphrenia as the flip side, because of loose associations rather than rigid and precise ones. And some spies are hypersocial, though not always effectively. that would be me, for example.
ReplyDeleteLooking at it compared to the smooth operator/sociopath scale is an interesting twist. I'll have some fun thinking about that.
I do have an Asperger' Syndrome diagnosis that was changed to autism spectrum disorder when the DSM-5 came out. I prefer to say I have autism. Now, I don't want to go into the details because I could write pages, but my main problem with Asperger was that I felt it wasn't valid. I was told, in DSM-4 days, I met criteria for both Asperger and autistic disorder. The therapists insisted it was Asperger because I wasn't severe enough or wasn't diagnosed as a child.
ReplyDeleteThe problems with that are many. My parents had been told multiple times to take me to a therapist. They REFUSED. I could not get a diagnosis as a child. So, yeah, not fair.
Also, there is no place in the DSM that used levels of severity for mental illness. Ok, that I know of and have read. All that is required is having impairment in your life. Which, by the way, I did have. There is no place where the DSM-4 states that in order to have autistic disorder you have mute or mental retarded.
So, I really just dislike Asperger as a diagnosis for me because I felt I should have been diagnosed with autistic disorder. I won't go into details, but my therapists did say that I was in-between the "functioning level" of Asperger and autism. There was never any mention of real symptoms just stereotypes. But this is all my own feelings.
As for non-autistics showing autism signs, well, yes. There is something called the broad autism phenotype. Instead of having all three symptoms, impaired social skills and repetive behavior/movement and language problem, the only have one or two. I belive social-communicative disorder captures a lot of people who only have the social and speech problems. I don't know how much of the population has broad autism phenotype and the social-communicative disorder, but the number could be high. I read one study that said as high one third of people could be on the BAP. Even if it 20%. you will meet these people.
As for the opposite of autism, I'm not sure there is such a thing. Autistics tend to be on the edge, either too high or too low. The middle group is the non-autistic group. I' don't agree that the fundamental problem is social. There are the sensory issues that could be the main cause. And autistics can be strong or low side of the sensory pole.
As for psychopathy being the opposite, I can see it, kind of. But I don't agree. This is all learning from others so it may not be 100 accurate or in the DSM. There is cognitive empathy and affective empathy. Cognitive empathy is social skills, basically. You can read other people. Affective empathy is caring about others. Psychopaths are thought to have good cognitive empathy but low affective empathy. They can read other people, see the emotion but they don't care, Autistics have high affective empathy and low cognitive empathy. Autistics suck at reading other people but when they do realize the emotion, they care about the person. Please note, these are generalizations. I believe some autistics who practice social skills enough and have enough interest, that they can have better social skills then would be expected. I don't know enough about psychopaths.
I don't see these as opposites because people can have both or neither. I have a relative who most likely has neither. Besides, I believe you can a diagnosis of both psychopathy and autism. Well, psychopathy is really diagnosed, it would Antisocial Disorder. If two conditions are opposite, I wouldn't expect to see someone with both.
Sorry for the long post.
Don't be sorry. I think there is a lot in your observations. I still maintain that there is more than one thing happening, so different symptoms express. the difference between being rigid, obsessive, fascinated, or precise can be very contextual, for example. It can be useful in some situations and impairing in others.
ReplyDeleteUncle Bill brings up 'neuorotypical' which I see as a sort of reverse labeling. "We're special and you're ordinary."
ReplyDeleteI very much disagree with neurotypical, Christopher B. We use the words sighted and blind. we use the words disabled and able-bodied. There should be a term that means non-autistic. Besides, "we're special"? Nonsense. My self-esteem was trashed by others, and that abuse was because I was autistic. I think most autistics struggle with self-esteem. We KNOW that others hate us. We know our parents wanted a non-autistic child. We know that we bother other people.
ReplyDeleteIf autistic people are going around saying we're better, they are repeating able-bodied people's hatred of disabled people and not wanting to be treated like a disabled person. Very rarely, but it does happen, do the autistic person generally think they are better person. Are there things autistics do better? Yes, and we should celebrate that. But Christopher B is generally wrong, granted in my opinion. But I actually do read and listen to autistic people. I doubt he does.
Sorry, AVI. I shouldn't have gone on the rant. But this matters to me.
I think CB would agree with your opinion. There are other disabilities that at mild levels can actually be advantages, like colorblindness, OCD, hypomania, but things have to go right for that to happen. I see this as something similar. Aspies, when they are high-IQ can be very useful to the tribe and therefore carve out a niche for themselves. But it's tough, and trying to sell the idea that the conditions are equal but just different, though kindly meant, I think is ultimately unhelpful to people with ASD.
ReplyDeleteSome people think the opposite of autism as William's Syndrome.
ReplyDeleteAt least for the attempts I know about, therapies seemed to help up to a point. Desensitizing against noise helped--some. One-on-one helped train some coping--up to a point (possible confounding issue of the children getting older too). (Also it was so expensive the program was canned.) I don't remember the others.
ReplyDeleteActually, talking about "a spectrum," like it is one-dimensional, is probably much too simplistic. There are numerous axes along which people could be evaluated. Difficulty with social situations is the one that everyone knows, so that is why I mentioned sociopathy as the opposite. As I understand it, sociopaths tend to be very good at understanding and manipulating emotions, makes them very good in social situations. I was always very socially awkward, and I could never understand what made some people so good socially (still don't, to be honest). But I have known a few folks who could walk into almost any situation, and charm the pants off the other people there.
ReplyDeleteBut I guess the other characteristic of sociopaths is the lack of a conscience, so maybe that doesn't really track. Well, I'm an engineer, not a psych guy, so I might be totally off-base.
Not terrible, frankly. I've heard woise.
ReplyDeleteOh, I forgot to mention that I see fussing about the labels all over the autism groups. Me, I don't care what I'm called as long as it is said respectfully. The fussing is all over all the disability groups, like the Association for Retarded Citizens turning into The ARC. Like retarded turning into, ah, what's the latest iteration?, Developmentally Delayed. After Delayed becomes the pejorative word of the day (like moron and retarded) there will come a new label.
ReplyDeleteLabels flip-flop all over the place. Geek used to be a terrible thing to call a person. Now it just means a fan of. But a lot of people are hair-triggered about words. It depends on who and how the words were used on them, I think.
I once tried to comfort a guy about the asperger's he was presenting on his FB post. His mother replied, "How dare you accuse my son of having asperger's?" That puzzled me until I realized that for her the label was a loaded negative word. So I replied that I wasn't ashamed to have the label. It's just a fact of life. She replied that she was very sorry for me. I realized I couldn't speak over her triggered, shouting brain. So I withdrew from the conversation.
We're all sort of talking about different qualities we associate with the concept of "being autistic."
ReplyDeleteI would say that there is a value to being less vulnerable to social pressures. Such as, the engineer in a meeting who refuses to decrease construction standards to fit a budget, or a committee member who can resist group think.
I do wonder if social media appeals more to some people than to others. It seems to me to be heavily loaded towards emotional display all. the. time. If used inappropriately, it leads to group displays of ENTHUSIASM and HATE. Social media with pictures is not a rational place. It would be interesting to know if people "on the spectrum" prefer to avoid social media, or prefer certain types over others.