Embracing labels is a good idea if it's done for the right reasons. They can be standards by which to calibrate our expectations of others, broadcasting what tools to use when evaluating our behavior. Don't use the six inch micrometer when measuring the breadth of my emotions: use the one inch, for example. And maybe switch to metric.
edited 8th Nov '15 9:26:33 PM by Artificius
"I have no fear, for fear is the little death that kills me over and over. Without fear, I die but once."
The question is who controls the labeling process and the context in which it is used.
That's actually something NeuroTribes brings up a lot. Not directly in the way you present it ("Who controls the labeling process?"), but many times throughout its history lesson, it brings up the different attempts to label autism.
Not only did autism as we know it today have different names, such as "childhood schizophrenia", or be divided into different forms, like "autistic disorder" vs. "Asperger's Syndrome", but it also was going to be defined many different ways. By different organizations in different countries, at different time periods.
For example, one proposed definition of autism included the idea of "mental retardation but with packets of average, above-average, or even extreme intelligence". This idea was rejected, but it was going to be used to define something not quite Aspergers-syndrome, but a bit more than Leo Kanner's severe forms. The idea that autistics were often intelligent in some way or another was becoming more known in psychology circles, even if the general public still didn't know it.
One more recent proposed definition, that didn't make it into the DSM-V, would have included clumsiness/unathleticism as part of the definition of autism, but that aspect was dropped.
Holy crap.
I just got to a point that explains a lot about the whole "autism vs. Asperger's Syndrome" distinction.
Lorna Wing, the psychologist who recognized the relationship between Kanner's version of autism and Asperger's version of autism, realized that parents of most autistics would be totally unwilling to call their own kid "autistic". Realizing the word carried such a nasty stigma, she decided that parents would be more willing to seek a diagnosis for their kid if the kid's condition could be called something else. She wrote the following:
And thus a majority of what we call autism today was given the name "Asperger's syndrome" instead. It was marketing, as the author put it. A way to invent a more socially acceptable name for a specific version of autism, since the word "autism" was associated with severely disabled children. A way to convince parents to seek a diagnosis they otherwise would be afraid to embrace.
Sadly, that is gone now. It's debatable - and has indeed been debated - whether or not unifying "autism" and "Asperger's syndrome" into one grouping is a good idea or not. But many Aspies have complained about not wanting to be called "autistic". Many have said that having "Asperger's" was more socially acceptable; at least to some people it connotes intelligencenote . My Aspie friend tells me that she doesn't want to call herself "autistic" (her sister tends to prefer that term), but prefers to say she has "Asperger's syndrome" if necessary, because she doesn't want people assuming she is stupid, when she's really quite mature for her age and very bright.
Since most of us here are on the spectrum, I'm interested in your thoughts: do you think Lorna Wing's idea to create "Asperger's" as a brand new term for less disabled autistics was a good idea? Would you rather have people see you as having Asperger's syndrome instead of autism, if they had to know you had "something"?
edited 9th Nov '15 11:44:00 AM by BonsaiForest
Considering Asperger syndrome no longer exists, it probably will not be helpful to try and continue the name anymore regardless of intention.
"Psssh. Even if you could catch a miracle on a picture any person would probably delete it to make space for more porn." - Aszur
I imagine that it served it's purpose at the time, but society seems to be moving beyond it now.
Honestly, I still prefer to say I have Asperger's syndrome, but only because that's what I've been told I have and what I've been telling other people my entire life. I've also been told and been telling people my entire life that I have autism. Really, to me, the two were mostly interchangeable, with the only exception being that Asperger's, as I understood it, was a higher functioning form of autism as opposed to a lower-functioning one, though it was still autism all the same. So while I'm too used to saying I have Asperger's syndrome to simply let it drop, I don't really have any objections to autism being the only official term used for newly diagnosed autistics from this point forward. But I also think that people like myself who are used to having their autism referred to as Asperger' syndrome should have the right to keep referring to themselves as that if they so choose.
edited 10th Nov '15 5:00:05 PM by kkhohoho
There's definitely multiple sides to this argument. One could say that as more people who formerly would have been called "Aspergers" point out that they have autism, and explain what autism means to them, that this becomes the new face of autism. Which, as I've seen some people argue, has resulted in the other forms of autistics being lesser-known.
Or to quote one such argument:
- Quirky shy nerds are autistic too
- They don’t need curing
- Therefore autism doesn’t need curing
Collapsing autism and Asperger’s was probably a mistake. Keeping the distinction would make the above fallacy more difficult to commit.
I don’t think the average person’s idea of an autistic person is someone nonverbal and violent, not any more. Maybe 30 years ago. But now it’s the quirky nerd. Because the former are hidden away in institutions, and the latter are visible and talking about how autistic they are.
It is scientifically accurate to call both conditions autism since they are, just very different forms of it. And there's many forms even within the range of autism conditions. Educating the public is the tricky part, and I've seen editorials argue that the focus on the type of autism that many of us in the thread have is taking attention away from autistics who can't speak for themselves.
Anyway, regarding NeuroTribes, I'm up to a chapter called "The Rain Man Effect". I just reached it, but I'm guessing it has to do with how Rain Man popularized autism with the public and turned it into a household word (and skewed how people perceive it).
edited 10th Nov '15 1:13:31 PM by BonsaiForest
A Matter of Dignity,
courtesy of the Star Tribune.
Basically, it's a series of articles that shows just how Minnesota (where I live, FYI,) handles integrating those with developed disabilities (including autism,) into the workforce, or rather how they fail at doing so. To this day, nearly 300,000 disabled in Minnesota are working in sheltered workshops, picking up trash, and performing other menial labor for as low as below $3.00, and many, try as they might, just can't find something better and get out of that system. Sometimes this is due to not having the necessary skills needed to move on, or that they're not fully aware of all of their available options, but more often than not, they aren't given the proper help and assistance needed to move on to something better, and it doesn't help that simply having worked in sheltered workshops and the like casts a stigma upon them which can prevent them from even getting jobs that they'd otherwise be qualified for. Furthermore, states like Vermont have already dismantled such systems and moved %80 of the disabled who worked in them into better, higher paying jobs, whereas Minnesota is still one of the highest ranked states in terms of the disabled working in such a system, and the overall highest grossing in terms of sheer profit being made from it. And while they are planning to attempt to alleviate these issues starting in 2019, they'll only be starting on a small scale regardless.
This has me freaking pissed. Everyone should be able to have whatever kind of job they want including autistic and other disabled, and if they don't have the proper skills or abilities to do so, then they should be given those skills. And yet, they aren't being given them, at least not as far as the workforce is concerned. This is intolerable.
Reading this has actually helped me decide on my career path. I'm about to graduate with a BA in Theater, but I wasn't sure exactly what I wanted to do with it other than act. Back around August though, my adviser suggested that I could teach kids to act, including autistic kids. I also read an article about how autistic children who were taught acting behaved more neurotypically compared to other autistic children who weren't taught it. So I think now that that's something I actually want to do. I may be considered a high-functioning autistic, but I still went through a lot of hell growing up, mainly because I didn't know how to fit in or act 'normal'. I think though that if I could teach these kids — both autistic kids and other disabled children — how to act at a young age, this could help them so much later on, as they might have a better chance of blending in and having a 'normal' life. They might also have the necessary social skills and aptitude to have a better shot at getting a decent-paying job and a life of their own as opposed to getting lowing paying jobs in sheltered factories or living in a group home. I want to give kids a better chance of having that option, and maybe while doing this, I could also raise awareness to this travesty in the process.
edited 11th Nov '15 7:47:51 AM by kkhohoho
A nice butterfly
I need to disagree with this vehemently.
No one owes you anything, and sometimes real life hardcore even denies you the opportunities for this. Feeling entitled to something is just going to generate frustration, resentment, and anger, towards others and oneself.
Informing them about their opportunities, creating opportunities, and expanding markets is one thing. But standing there, hoping that the government shows up to teach me how to be X is just plain old unrealistic.
edited 11th Nov '15 9:27:43 AM by Aszur
It has always been the prerogative of children and half-wits to point out that the emperor has no clothes
![[up]](https://static.tvtropes.org/pmwiki/pub/smiles/arrow_up.png "[up]"){kind=icon}
That's what I meant to say, actually. I guess I was so caught up in the moment that I didn't phrase myself better. Sorry about that.
But yes, that's what needs to be done.
edited 11th Nov '15 9:35:04 AM by kkhohoho
The disabled deserve more support than the rest of us, because their disability is not their fault, and when a large segment of the population goes unemployed, the economy overall is less productive, which hurts all of us.
Wide Eyed Wonderman
Am I the only autistic person who DESPISES math? Honestly it stresses me out more than most other things and it takes me much more effort to learn han anything else. My strong points are reading, and oddly enough, communication-related subjects like theater and entrepenuership.
Not looking forward to repeating Algebra II next semester.
David Bowie 1947-2016
A procrastination in of itself
I enjoy maths, but germinally the low level stuff, so I'll do Sudoku or a numbers box over a crossword, but once you hit algebra and the stuff above it I zone out. Still generally I'm much more a humanities student then a sciences one, I've said a few times how it annoys me that the focus on getting ASD people jobs is always on things like coding, engineering, physics, chemistry and such. I study Politics and International Relations, I'm good at it to, a bit of focus that way woudl be nice.
“And the Bunny nails it!” ~ Gabrael “If the UN can get through a day without everyone strangling everyone else so can we.” ~ Cyran
Same here. Math is like a foreign language to me aside from the basic stuff, (2+2=4,) and so having to do calculus and like the in high school was equivalent to torture. Like you, my main interests are in theater and, in my case anyway, writing, with part of the reason being that I don't have to touch math with so much as a ten-foot pole.
edited 11th Nov '15 9:35:20 PM by kkhohoho
Funny, I've always liked mathematics.
"For a successful technology, reality must take precedence over public relations, for Nature cannot be fooled." - Richard Feynman
Even as someone who fits the "nerd who loves computers" stereotype, I also hate the fact that the focus on autistics and jobs is specifically around tech stuff. My friend had problems at her previous job due to Aspergers/autism making communication harder and might have potentially been fired had her boss not already known about her Aspergers and hired her because of it, and also made an effort to understand her. (That said, she was invited back!) He specifically had told her that she needs to wear a shirt saying "I HAVE ASPERGER SYNDROME" so that people would make an effort to understand, rather than assuming she's rude (she's actually very nice and compassionate) or whatever.
My friend's interests and areas of knowledge are not in tech at all. They're in the humanities, like you. But she appears to be, at least for now, one of those autistics who falls through the cracks - too "normal" appearing to be recognized as "different", but at the same time, too "different" to be able to convincingly 100% fake "normal". She was previously one of those autistics who simply wants to get a job and get on with their life and have no-one know that they're autistic for fear of being judged based on stereotypes and prejudice. Now she's starting to think that might not be possible for her.
Situations like that are probably part of why so many vocal autistic self-advocates exist in the first place.
Reading yet more comments on the article DeMarquis posted, and I thought this was interesting, as it's about how teachers who utterly misinterpret normal autistic behavior can fuck things up badly, and a little understanding can go a long way:
They assume it’s like a normal child trying to thumb their nose at the authority figure. So they take away the lego, or they take away spiderman and suddenly life is nothing but a battle. The child is constantly upset because lego or spiderman has been taken away while the teacher is constantly struggling with the child but now they’ve made it about dominance and won’t give up the fight.
So a large part of her job consists of battering inept teachers over the head and saying something like “give him back his fricking mp3 player, you morons”.
She has to repeat some variant on this quite often “He’s not doing this to fight you or to belittle your authority. He’s autistic. He cares more about lego than he does about you, me or his parents. Just let him have it on his desk or in his pockets or around his person and don’t get upset when he seems distracted by it”
The child does better, the teachers and parents do better and everyones lives become easier.
Problem.
1) If your child has a diagnosis and you do not tell the teacher/institution, you're the asshole. Not them.
Teacher's can't assume every little kid is autistic and sometimes they are not properly informed by their superiors before the kid is in their class. So tell the teacher first.
2) They aren't morons. They're not inept. If the teacher does know that the kid is autistic, then that doesn't mean that they will be allowed to cater to your kid. Their jobs are dependent on test results and all sorts of other issues. Their first job is also to teach the other children.
Sometimes, it may seem like they should just ignore the kid and let them have their little obsession, but if that is causing a problem in the class, the teacher has to deal with this. There are many ways that this can be an issue. First, other kids can get disruptive or jealous. Second, that kid still needs to preform. If they can't preform, then that's an issue.
3) If your kid is that problematic, they need to be in a specialized education situation, not in public school for the best of both them and the environment they are in. You can't blame pubic school for not having the resources required for special education all the time.
If the teacher or administration is legitimately neglectful or abusive, then by all means, raise hell against them. But if they aren't then that doesn't mean that the school has automatically failed or is stupid, it means that we just don't have enough means to attend to it and the kid is the odd man out.
"Psssh. Even if you could catch a miracle on a picture any person would probably delete it to make space for more porn." - Aszur
All good points. No disagreements there. Or at least no major ones.
I've been thinking more and more that the idea that "one size fits all" is very untrue. My friend was homeschooled and thrived in it - she loved learning, she got accepted into a good college in her area, and at 20, she's more mature than most people her age.
Unfortunately, we don't live in a world where everyone can receive very personalized education. Homeschooling, if done right, could be fantastic as it's tailored specifically to the individual's strengths, needs, and interests. But it's not a realistic solution for most people.
Finding out how to best educate people who are different - especially considerably different - from others, is tricky. People generally want things standardized, but human beings themselves are not standardized.
It depends on the context of course, but teachers are trained to personalize educational experiences for each child in a way that does not detract from the other students. Allowing the child to retain a simple toy shouldn't cause a problem provided they can focus on the lesson.
How many teachers do you know?
"Psssh. Even if you could catch a miracle on a picture any person would probably delete it to make space for more porn." - Aszur
A procrastination in of itself
A lot depends on if they're trained for that, if they have the time to personalise for kids individually (big class sizes are a huge problem), if they're allowed to personalise that much (it may be regarded as favouritism) and if such personalisation would actually be non-disruptive.
It's possible, but there's a reason we have specific training for dealing with special needs kids, it's not easy.One teacher at my primary school managed fairly well by being unorthodox with my brother (who has ADHD), instead of doing the standard "sit at the front so I can keep an eye on you" thing, she put him at the back of the class, as that way his fidgeting (which she understood he couldn't control) wouldn't bother the other kids, her not reprimanding him for fidgeting wouldn't be seen by the other kids, and if he got out of hand it was a shorter walk to the headmaster's office as the classroom door was at the back.
“And the Bunny nails it!” ~ Gabrael “If the UN can get through a day without everyone strangling everyone else so can we.” ~ Cyran
Teachers are not trained to personalize education here. They are not allowed to under Common Core and No Child Left Behind anyway. Praxis is standardized.
They are trained to test.
"Psssh. Even if you could catch a miracle on a picture any person would probably delete it to make space for more porn." - Aszur
On the subject of "mild" or "Aspergers-style" autism being an "invisible disability", Lorna Wing noticed this problem in the 1970s:
One young man had been fished out of the Thames by the police after jumping off a bridge and brought to the Maudsley. Lorna noticed that he was wearing two wristwatches. He explained that he kept one set to Greenwich mean time and the other to local time, even when the two times were the same. He was quite distraught that the time in London had recently changed to the British equivalent of daylight saving time. As a child, he had not learned to speak until he was three, and he had no friends until he was fourteen. He loved reading books on physics and chemistry, and he had memorized a large number of facts related to both. He dressed in old-fashioned clothes and was very particular about keeping his things in order and following a strict daily routine. But he was painfully aware that people generally didn’t like him. His father had an intuition that something was different about him, but he had never been able to quite put his finger on it.
He was often ridiculed for being clumsy, rude, and unfashionable, though he went to great effort to be polite. He was very articulate, but he tended to add extraneous details in conversation, as when Lorna asked him about his relationship with his father and he replied, “My father and I get on well. He is a man who likes gardening.” After his attempt to commit suicide by leaping from the bridge was defeated by the fact that he was an excellent swimmer, he tried to strangle himself. Clearly, this young man needed help and support in navigating daily life, but there was no diagnostic label on the books that would enable him to access psychiatric services. Lorna knew that the parents of young people like this were not likely to readily embrace a diagnosis of autism, which was irrevocably linked with nonverbal preschool-aged children. The disabilities of these other young people were just as real and deserving of professional attention, but they were harder to see.
From page 350 of the book. Out of 534 pages. Can't believe I'm more than halfway through already. I don't want this book to end!! The reviews saying it's a real pageturner weren't kidding.
A brief part bringing up the importance of having a label. I realize labels can be offensive to some, but if you really do need the help, then being able to say "I have _____" can enable you to get the support that you need. And this guy, and others like him, really need the support. This guy doesn't sound like the kind of person who can just fake normality to get by, judging by how his great efforts to be polite apparently didn't work.
edited 8th Nov '15 8:49:30 PM by BonsaiForest