There are thousands of kids like me out there. Eventually, it gets better.
January 5, 2013 6:10 PM   Subscribe

"In May 2013, "Asperger's Syndrome" will be removed as a diagnosis from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), leaving "high functioning autism" in its place. I agree with this change. Given the importance of the manual, however, it's caused a lot of consternation and caused me to reflect upon my experiences."—Anonymous
Pedagogy of the Depressed: my experiences as a special ed student in the 1990s, an anonymous Boing Boing article
posted by Toekneesan (40 comments total) 21 users marked this as a favorite
Worth noting that on the same Boing Boing front page is Maggie Koerth-Baker's post on whether the explosion in Autism diagnoses isn't an epidemic, but instead a function of an increasing awareness of the associated traits.
posted by Toekneesan at 6:38 PM on January 5, 2013 [4 favorites]

The treatment of the ill-but-poor and the physically disabled is bad enough; but there is something uniquely horrifying about the lack of empathy and poor care and treatment for those with a mental illness, or even if they're only mildly non-neurotypical. Nor is such treatment confined to the 'bad old days' - it carries on now, today.

The author does not write under their real name, for fear of the consequences for their career if they were revealed to be autistic - and that fear is entirely justified. I've been being treated for clinical depression for a few years now, and I keep it hidden as much as possible in my real life - even most of my family doesn't know.

When we were interviewing for a new staff member at work, the one with the best technical skills was rejected explicitly (in private) because he'd admitted he'd suffered depression at his last job. It's certainly not something I'd reveal at my next job if at all possible.

God only knows how tough it must be for those with autism or other non-neurotypical illnesses that are permanent and not environmentally triggered, just trying to survive.

I think it's a good thing that Asperger's is being eliminated though; autism is a fairly wide spectrum disorder, and asperger's always fitted inside that spectrum. It is better classified using the existing severity scales. And maybe we'll see a few less fully functional people (particularly techies) self-diagnosing with asperger's as a handy excuse for just being assholes.
posted by ArkhanJG at 6:42 PM on January 5, 2013 [14 favorites]

The things the author describes — point systems, positive feedback, different types of restraining holds — are all elements of "applied behavior analysis" as it is practiced in many schools for special-needs children all around the US. I've worked as an aide at one that was connected to one of the leading institutions doing research on developmental disorders in children, and, yeah, there are a lot of familiar things in the author's writeup.

On one hand, how to institutionalize care for special-needs students, who are all different, is a painfully complicated question.

On the other hand, our school applied the same principles and policies to students ranging from physically violent, barely verbal children to children who seemed to function in mostly age-appropriate ways. I think it'd be tough to grow up "normal" as a high-functioning kid in that kind of environment.
posted by Nomyte at 6:53 PM on January 5, 2013

And maybe we'll see a few less fully functional people (particularly techies) self-diagnosing with asperger's as a handy excuse for just being assholes.

You will never see this. Although in the past couple years, the trendy self-diagnosis to excuse assholery has shifted from Asperger's to PTSD.
posted by kafziel at 7:03 PM on January 5, 2013 [2 favorites]

Just so you know, as someone who has family members with both of those diagnoses, statements like those feel really shitty to read even if that's not the intent or you're only meaning to include "assholes" who "self-diagnose". It feels awful anyway.
posted by the young rope-rider at 8:07 PM on January 5, 2013 [23 favorites]

When your school makes the headmistress in Matilda look merciful, you need to reevaluate your methods.
posted by Rustic Etruscan at 8:15 PM on January 5, 2013 [1 favorite]

We just successfully fought an Aspergers diagnosis for my son on the basis of this change. The turning point was me looking at the psychologist and saying "from here on out, either he's autistic or he's not. You need to pick which side of the line he falls on." For her, the knowledge that the "lesser" diagnosis of Aspergers was going away meant that she couldn't justify sticking my gifted, funny, loving, eye contact avoiding, socially awkward son with a label for the rest of his life, and meant that we could move on to discussing his more pressing issues. I know that for many parents an ASD label is the golden ticket to get services dearly needed. I also know from experience that for many kids right on the edge an ASD diagnosis overrides treatment for other issues that have more daily impact for the child and family. One example of this is the upswing in co ASD/ADHD diagnosis. For many of those kids, pharmaceutical treatment for the ADHD is avoided or delayed, because stimulants like Ritalin are thought to worsen certain self stimming behaviors.

So, count me as someone pleased by this change.
posted by anastasiav at 9:29 PM on January 5, 2013 [1 favorite]

I gotta nephew. He has the "indian walk" - he walks on the balls of his feet, never the heels. He gets yelled at for this by those who think they know best. He talks for hours on end about Minecraft play-with-me videos he's watched, and only his crazy computer-nerd uncles listen keenly. He wants a Math themed birthday party, complete with a pi-shaped-cake. He got into worlds of trouble for not being "literate" - until they changed the definition of "literate" to being able to write with a keyboard rather than a pen. He likes awkward jokes only he thinks are funny. His best friends are loyal beyond all reason, though he doesn't understand them and they don't understand him. They just know he's The Guy when everything else in your life is bad, rock solid.

I'm really happy the pretty little pigeon-hole he'd be assigned to is gone. His educators, peers and physicians now have to treat him like a fully realized person rather than a diagnosis.
posted by Slap*Happy at 9:44 PM on January 5, 2013 [15 favorites]

I hate this change. I agree, Asperger's is an autism spectrum disorder. However, Asperger's doesn't have the social stigma of autism. I know it is a horrible thing, but it doesn't cloud people's perceptions of me so much to say I am Asperger's as if I say I'm autistic.

When I was in elementary school they assigned me to a women to help me take notes and write and stuff. She had really good intentions, but all her experience was with Down syndrome and other highly debilitating conditions, so she treated me as such. To cap it off, I don't think she was the brightest herself. Anyway, it was incredibly frustrating, and shows what happens when you mix high functioning and low functioning diagnosis.

If we merge Austism and Aspergers when you go to the school and say 'my son has high-functioning autism, give him help' they are only going to hear the last word of that, and give them ALL the wrong things, things that will frustrate a group of highly intelligent people with a lot of potential.

We've spent about two decades now educating people on AS, why are we throwing that all out the window? We can't we define Asperger's as a subset of Autism?
posted by Canageek at 9:55 PM on January 5, 2013 [1 favorite]

Slap*Happy: That is about the most offensive thing you can say to me. An Asperger's diagnosis doesn't mean you are pidgin holed. It means when you grow up you can actually *understand* why you don't act, think like everyone else. When I read Tony Attwoods writings I can see myself in them, learn how I'm acting different from most people, learn how to interact with them better. Sure, whole chapters of the book don't apply to me, but I'm a really mild case, and he makes it clear that this covers every common aspect of Aspeger's and that no one person will have all of these, or at least very few would.

By subsuming Aspergers into a larger, very, very different group of disorders you are hiding this information, and when they search for autism they aren't going to help them understand; you are going to insult them when they read about trouble functioning in society, non-verbalness, etc.
posted by Canageek at 10:03 PM on January 5, 2013 [2 favorites]

They're not really getting rid of Asperger's by saying that people who were formally diagnosed with it are now "normal"/"neurotypical"/"not diagnosable". They're getting rid of Asperger's by saying that those people have autism and not a separate disorder. They're doing the same thing with PDD-NOS.

The major reason why they are doing this is that there was very poor distinction between the three diagnoses to the point that they were generally meaningless--one person's HFA is another person's PDD-NOS and yet another person's Asperger's.

The major purpose of a diagnosis is to facilitate research and clinical diagnosis and ultimately improve the quality of life of people with that diagnosis via treatment, disability accommodation, and/or community support. If you are missing a huge chunk of people you could be researching/treating/accommodating/supporting because they were arbitrarily diagnosed with something else and whoops, the grant doesn't apply to that, it's a problem--not for a bunch of random stuffed suits--for the people who are affected by the condition in question, their families, and their communities.

Anyway, this article is actually about the school that the author attended and the diagnosis thing is sort of a derail.
posted by the young rope-rider at 10:08 PM on January 5, 2013 [3 favorites]

That said, I totally hear Canageek's concerns about the terminology. I recently asked someone if a child was on the autism spectrum and they gasped and said "no, he talks quite a bit". It's a problem for sure. Especially when trying to find resources (although it's already a bit of a problem because some people say asperger's, some say HFA...). Perhaps it will continue to be used for laypeople.
posted by the young rope-rider at 10:13 PM on January 5, 2013 [2 favorites]

Slap*Happy: I'm really happy the pretty little pigeon-hole he'd be assigned to is gone. His educators, peers and physicians now have to treat him like a fully realized person rather than a diagnosis.

Think of this, though; without a diagnosis, how will people treat his quirks? If he doesn't have a disorder, people are free to ask him to walk like a normal person and handwrite and to at least try to socialize normally. They're free to expect the same things out of him they'd expect out of anyone else. Is that really a benefit?
posted by Mitrovarr at 10:28 PM on January 5, 2013

Nope. You are incredible for being you, not because some preset says you're awesome. The presets are gone. Just enjoy what you enjoy, learn how you can, and understand that educators understand and are prepared, now.

When I was a kid, I was dumped into the school system's first "gifted" program. You cannot comprehend the sturm-und-drang involved with kicking me out. Understands the material, performs well on the tests, doesn't turn a damn thing in and reads science-fiction paperbacks in class. That was every PTA my folks had to go thru from 11-until graduation. (Mr. And Mrs. *Happy, we are pleased to inform you that your child is the top performer in the entire state in the standardized test for the class he just flunked out of, and is in the top 1% of all students to take it nationwide." I was basically grounded until I was 16. At that point, no-one cared so long as I was gone come graduation day.)

That nephew of mine? He had some real trouble early on in middle-school that only his die-hard friends bailed him out of. That, and his family was on his side the whole way. Now, his teachers get him, too... they take a look at what he needs as a student, and tailor the resources they provide. He gets to use a keyboard to write - and now his reading comprehension is through the roof. He gets to go to math class at the local high school - and he's suddenly a science and language superstar.

Slam him into the Ass Burgers, and he becomes a cripple. Free him into Non-Neurotypical, and he's a superstar, and he will still stand by his friends as The Guy.
posted by Slap*Happy at 10:38 PM on January 5, 2013 [1 favorite]

Just so you know, as someone who has family members with both of those diagnoses, statements like those feel really shitty to read even if that's not the intent or you're only meaning to include "assholes" who "self-diagnose". It feels awful anyway.

Maybe you're unaware of the phenomenon but there is a problem among certain communities, particularly in the tech world, where people lazily and casually throw around statements about themselves or others having "mild Aspergers" even though there's been no examination or diagnosis (and never will be) and in fact the comment is almost completely a throwaway one.

It is an obnoxious habit, especially when they make these comments in the presence of people for whom those diagnoses and what those conditions mean are real and prevalent. Someone who has family members with both of those diagnoses would find would find this behavior, which ArkhanJG is annoyed by, awful-feeling-inducing.

Anyway, I think there's a crossed communication wire here because ArkhanJG is lamenting a real and shitty behavior & no one in this thread needs to be feeling awful.
posted by mitten of doom at 10:49 PM on January 5, 2013 [9 favorites]

Thanks to South Park I have coworkers who can't stop giggling whenever they hear "ass burgers." It's a small, shitty and petty thing but for people who have no comprehension of mental illness the name is deliciously low hanging fruit.

Autism level 5 or something would work better in my experience.
posted by M Edward at 11:19 PM on January 5, 2013 [2 favorites]

Just so you know, as someone who has family members with both of those diagnoses, statements like those feel really shitty to read even if that's not the intent or you're only meaning to include "assholes" who "self-diagnose". It feels awful anyway.

I'm sorry that you have family members with legit, professionally-diagnosed conditions. I'm also sorry that people see fit to co-opt those conditions as badges of specialness, because that really trivializes the people who actually suffer. Believe me, as someone whose dad actually has PTSD from being nearly killed by a land mine in Vietnam, it pisses me off quite a lot when people self-diagnose and start using that as a club.
posted by kafziel at 11:29 PM on January 5, 2013 [3 favorites]

Not sure how I feel about loosing the Asperger's label. I can indeed be considered a techie and I am self-diagnosed - maybe I'm just an asshole as ArkhanJG says, but I try really hard to get on with people and the only time I mention asperger's is during a job interview so people know what to expect from me.

I'm worried that if you loose the label I'm left either saying I'm high-functioning autistic or there's nothing wrong with me and the reason why I can't join in with the office banter, why I don't socialise and why I kill any casual conversation I join is because I'm an asshole.

I don't identify as autistic - that label carries far too much baggage. I do think that the asperger's label is useful. Loosing aspergers label is like saying that cyan doesn't exist any more and we'll just say that it's a light shade of blue.

If I have to choose between calling myself autistic or an asshole then I'll go with asshole, thanks, but I'd prefer aspergers.
posted by YAMWAK at 12:02 AM on January 6, 2013 [2 favorites]

The problem I have with the Aspergers label is that it is often used as a synonym for high functioning autism, even by people who should know better. My son has mild to moderate autism and had a significant speech delay. He also has an enormous vocabulary and could read by age 2. In spite of this, he could not ask for a cup of milk or tell me how he felt. ABA is slowly allowing him to develop functional speech. One teacher said to me that if he continues to make progress perhaps he will only have Aspergers when he finishes school. Well, no, he will never have Aspergers. Aspergers is never characterized by a language delay. He will always have classic autism, even if therapy enables him, as we hope it will, to function in society. Aspergers is a subset of autism and should be included in any definition of it, but the solution to the stigma attached to the label of autism is for people to realize it encompasses one hell of a lot different degrees of ability and disability in many different areas. And to realize that autism does not define a person.
posted by Tashtego at 12:24 AM on January 6, 2013 [1 favorite]

How dare anyone presume to diagnose themselves! They should know, if you want a diagnoses, you have to pay your money to the medical syndicate, same as anyone else. The shear gaul to tout a 'diagnoses' on the basis of some sillyness like reading a diagnostics manual is just taking things too far. If you go claiming a condition, you better have a signed and sworn statement from a qualified (and paid) member of established professional associations.

No insurance? No Medicaid? No doctor? Too bad. Shut up and fit in.
posted by Goofyy at 3:11 AM on January 6, 2013 [5 favorites]

Oh. And seriously, I can't read that whole article. Living at altitude, my blood boils too easily. And outrage is all well and fine, but when it's righteous outrage, it just gets all too much, and one of my heart thingys misses it's proper cue.
posted by Goofyy at 3:14 AM on January 6, 2013

"I still get flashbacks to middle school every time I go to the airport."

I find this sentence to be insightful and so profoundly disturbing. I mean, yes, he goes on to explicitly describe the abuse and horrible conditions he endured at Northwoods, which are of course disturbing in their own rights. But he is getting at something much more subtle in the sentence above. To be able to say this — and I think many of us could say this or something similar — accepts some underlying truths about two commonly experienced areas of contemporary American life and implicitly suggests something insidious about both of them. Because the embodied experience that he is alluding to underlying both is this third reality, which is prison.

As if there's some necessary sacrifice of one's humanity or punishment inherent in being who you are, whether that's a traveling American in a post-9/11 world, a criminal serving time in the penal system, or a child labeled with a diagnosis. No reality should accept one's humanity be surrendered in the name of their own safety, or at all; all systems are grossly failing those they serve in this way.

And maybe I'm focusing on this because I'm having a hard time wrapping my head around the profound mistreatment he and his fellow students (and presumably kids before and after him at similarly horribly run institutions) experienced at Northwoods. Clearly the divisions in the labeling of diagnoses is integral to which chain of events occurs for any particular child (or adult; thinking of the labyrinthine insurance coverage system here and what it means financially and otherwise to have certain labels on your records), but it seems like the massive stigmatization of mental illnesses and disability—and how that gets institutionalized/becomes systemic*—make this labeling like a monster with spontaneously regenerating heads. I really don't know what can be done, because it's obvious that the shifting of labels has advantages for some and disadvantages for others, based on a lot of different factors and perspectives and prior experiences. I only hope that the restructuring actually is an important step towards tackling the bigger issue, and not another way to run away from it. We shall see.

*To the point that statements like his above are possible, and commonly understood as such.
posted by iamkimiam at 3:21 AM on January 6, 2013 [10 favorites]

They should know, if you want a diagnoses, you have to pay your money to the medical syndicate, same as anyone else.

I know, right?! All these so called "professionals" that spend years in school and training to be able to properly give a diagnosis? What a bunch of malarkey! I mean we all can simply read the DSM ourselves. You know what I say whenever I meet a Doctor? Piled High & Deep, AMIRITE?
posted by P.o.B. at 4:36 AM on January 6, 2013 [9 favorites]

They hate our freedom!
posted by Obscure Reference at 5:51 AM on January 6, 2013 [1 favorite]

In my view, this concept became twisted from its intention and used to exile "troublesome" students away from the general population. Schools opened themselves up to lawsuits if they expelled students with mental disturbances: it was easier to simply place all the “aspies”, ADHDs, and bipolars of in some far off school.

The author is right. It was/is easier to do that. And you know what else? Schools open themselves to lawsuits if they don't do this.

The law requires that schools provide reasonable accommodation to children with disabilities. That includes learning disabilities and mental illnesses as well as physical impairments. But school district budgets are tight. Whatever the ultimate reason teachers in Chicago went on strike last year, and it wasn't because the school system had more money than it knows what to do with.

For children with any kind of significant issue, "reasonable accommodation" probably means hiring a professional to provide the sorts of specialized attention that issue requires. These professionals frequently have degrees in addition to their education degrees, commonly advanced degrees of some sort. But a lot of these conditions are pretty uncommon. Autism gets a whole lot of attention and press these days, but the epidemiology puts the numbers at something in the 1% range. A school of five hundred that tracked the average might have only five kids with autism. Some will have more, but many will have fewer. Hiring a dedicated special needs teacher to teach just five kids is not an efficient use of school district resources. Twenty or thirty? Sure, now we're talking a slightly smaller than average class. But five? Or one? Too expensive.

But doing nothing is simply not an option. Any kid with a diagnosable disability is entitled to an Individualized Education Plan that provides adequate care for their condition, and a district that refuses to do that will get itself sued into next Tuesday. So the choice is not between providing the care these kids require in "normal" school and placing "all the 'aspies,' ADHDs, and bipolars in some far off school." It's a choice between doing nothing, which will get the school sued anyway, and doing something which, if not entirely ideal, does far more to meet these kids' needs than the districts would be able to do on their own.
posted by valkyryn at 5:58 AM on January 6, 2013 [2 favorites]

I know, right?! All these so called "professionals" that spend years in school and training to be able to properly give a diagnosis? What a bunch of malarkey! I mean we all can simply read the DSM ourselves. You know what I say whenever I meet a Doctor? Piled High & Deep, AMIRITE?

You know, there is a middle ground between finding a psychologist who's trained to spot asperger's syndrome and guessing based on reading the DSM.

The test here should give a general idea of what's involved. For the record, my score was in the forties, two engineer colleagues who took the test at the same time got low-teens / single digit scores. I'm not saying it's proof, all I'm saying is that not all people who self-diagnose are idiots or hypochondriacs (or necessarily wrong).
posted by YAMWAK at 6:02 AM on January 6, 2013 [2 favorites]

That's not middle ground, and still sits within educated guess area. I would assume anyone who is self diagnosing their problems feel they are more than capable of doing it so it pretty much becomes a feedback loop onto what they're looking for anyway. I don't have a problem with people self diagnosing in the hopes of figuring things out, but I do have a problem if someone is claiming something when they a) do not really know and b) use it as some sort statement about their innate personality. That's like role-playing a character and then claiming it's not them being a dick, but rather their character is so really you can't blame them. The point of a diagnosis is for proper treatment, they are not just for the sake of having one.
posted by P.o.B. at 6:32 AM on January 6, 2013 [6 favorites]

The law requires free and appropriate public education in the least restrictive environment. That horrible school doesn't sound like it fits the bill.
posted by Daily Alice at 6:33 AM on January 6, 2013 [1 favorite]

Professionals make mistakes too - you will NEVER really know. Would a professional be more reliable than an on-line test? Of course.

I am aware of the unreliability of tests like this. In this case, eighty percent of people who have been professionally diagnosed with asperger's syndrome score over 32 points on the test. Without knowing associated data (the standard deviation of the NT scores) I can't tell you what the chances are of someone scoring over 32 and not having an ASD but I know that it is likely.

(Short form: Wikipedia suggests 0.26 people with AS per 1000 people. If 99.5% of people without asperger's score below 32 points - 3 sigma levels of confidence - and you test 100,000 people then on average you should get 500 people who test positive and don't have aspergers and 26 people who test positive and do. Taking a random sample of people who test positive, you're getting towards 20 times more likely to pick a false positive than an actual aspie. I've no idea what confidence the test actually has, but 99.5% would be pretty darn good.)

The problem is that professionals will be making mistakes too. I have no idea what the false positive rate is for full professional diagnosis (I suspect the spread between different groups would be huge), but I can tell you now that it isn't zero.

So what good is a self-diagnosis? It gives you a search term for your friends and family. It gives an answer to the question '"Why is my little brother so strange?". It may not be the right answer, but it does give a handle to help understand their behaviour and anticipate reactions to future events. It gives comfort. It is not, and never will be, an excuse. I'm going to call that a middle ground.

What good is the professional diagnosis? I'm past the point where 'proper' treatment is likely to make a difference to my life. The only impact I can even think of is that if an insurance agent asks about my pre-existing medical conditions then I'd have to mention it. I can't think of a situation where that would benefit me. I imagine that there are a lot of people in the same boat.

If all a professional diagnosis gives me is an excuse to act like a dick in your eyes, I'm just not interested.
posted by YAMWAK at 7:49 AM on January 6, 2013 [3 favorites]

I am really disappointed in the DSM-V author's unwillingness to understand the practical implications of doing away with the Asperger's diagnosis. Yes, I know that it's just another word for autism, but for someone given that label, the consequences are significantly different, and it goes all the way back to Hans Asperger himself.

When he first wrote his reports on his "little professors," Dr. Asperger was on Adolf Hitler's payroll, and he had to have been known that his reports could cause or prevent his patients being murdered. There is no way to how much of what he wrote was flat-out false, that is, without tracking down more of his patients and violating their privacy and that of their families.

From a clinical and research standpoint, the Asperger label is meaningless. But in daily life, when the label is disclosed to people with less (or no) clinical training, and less (or no) general competence, and less (or no) basic human decency, that label makes a huge difference to the kid stuck with it. See above.
posted by ocschwar at 9:40 AM on January 6, 2013 [3 favorites]

The other issue with the whole self-diagnosis-really-just-assholes thing is that it comes up every single time to the point that it's a cliche, usually creates a huge derail of the conversation, and adds nothing besides a bunch of scorn for random people that most of us don't know or care about.

It's like every single time there were an article even TANGENTIALLY mentioning cancer, four or five people INSISTED on talking about people who fake cancer and lecturing everyone about how horrible cancer fakers are. Yes, people fake cancer. No, it's not always a relevant and insightful thing to mention and go on and on about.
posted by the young rope-rider at 9:41 AM on January 6, 2013 [3 favorites]

...almost as if fake cancer claims weren't nearly as prevalent or problematic.
posted by whittaker at 12:00 PM on January 6, 2013

As if the DSM is anything other than a marketing vehicle for the psychopharmaceutical industry?
posted by surplus at 12:32 PM on January 6, 2013

...almost as if fake cancer claims weren't nearly as prevalent or problematic.

Really? Prove it. Prove it besides saying it's "well-known" or "lots of people" or it's "accepted fact" or "everyone knows". Then prove that it's problematic instead of mildly socially irritating.
posted by the young rope-rider at 1:03 PM on January 6, 2013

Here’s a question: name another profession where you routinely see people speak as if they either know just as much as a Phd in that profession, or think in part if not the whole establishment is some kind of ruse? The medical field easily comes in second to the amount of people who think they truly know about mental health. Now those ideas come up in almost every single conversation about psychology on the blue and are faaaar more cliched.
YAMWAK, everyone has problems and I don’t know you and you certainly have every right to decide what you want to do with your life. Even more so my previous comment was a little overly harsh and I didn’t mean to impute anything about you. The simple fact is that there is a HUGE difference between an informed, objective opinion and a self-selected answer.
posted by P.o.B. at 4:57 PM on January 6, 2013 [1 favorite]

On the Less Wrong site survey for 2012 they asked what people got on the Autism Quotient test. The mean was 24 points and the standard deviation was +/- 6 so you have to go above 1 SD to get to 32 points for users of the site one survey respondent described as "spergland".

(I'm not going to tell you my score but it is less than 32.)
posted by bukvich at 7:07 PM on January 6, 2013

And maybe we'll see a few less fully functional people (particularly techies) self-diagnosing with asperger's as a handy excuse for just being assholes.

Sigh, I really screwed that up as an end line, didn't I.

First of, an apology. Neither people with asperger's, nor people who self-diagnose are assholes, and I didn't mean to imply that.

I used to be good friends with a guy who was diagnosed as HFA, and another I know who probably should have been. A young child I know (relationship redacted), we suspect is somewhat autistic; he's currently 'developmentally challenged' - we'll see how it goes, I guess.

The HFA guys were great guys. Incredibly good people. A bit of a challenge to talk to at times - a bit too literal, and struggled to read between the lines, and boy could they go on on a topic when they got started. If they were brusque or cut you off sometimes, it wasn't because they meant to, it's usually because you interrupted them. Not that I mean to generalize, HFA is not a precise set of symptoms, but that's what these guys were like. Definitely struggled to read people, and not always making the right guess as to what was an appropriate thing to say in public. It was always 'that's um, odd' rather than 'jesus, that was nasty'.

What they notedly didn't do was knowingly be nasty to people on purpose and then laugh about it afterwards, then blame it on their "mild asperger's". Which I have seen in my field - IT - more than once. That's who I was calling assholes - neurotypical assholes who co-opt a label that wouldn't apply to them in a million years because of some mistaken belief that that label excuses behaviour that actual HFA people, or at least the ones I've met, wouldn't actually do.

If you go claiming a condition, you better have a signed and sworn statement from a qualified (and paid) member of established professional associations.

Or, you know, have at least some basis for that belief. Thing is, we're pretty bad at self-diagnosis of mental conditions. My mother is a retired psychiatric nurse, and boy, some of the stories she can tell...

Sure, you can figure out you're not neurotypical. But the dirty secret is, most of us aren't, to some degree. We're all somewhat neurotic, schizophrenic, aspergery; or we probably wouldn't be on metafilter, frankly. But filling out a survey and coming up with a high score doesn't automatically mean you have that disease.

Focusing on attention to detail, intense focus? That could be HFA, could be that's just how you work. Easily irritated by other people, jump into things feet first? Could be ADD, could be you're an extrovert. Easily confused, end up jumping train of thought a lot? Could be schizophrenia, could be you're just a bit disorganised.

I score 46 on YAMWAK's test, not because I'm HFA, but because I'm a nerd who doesn't really enjoy spending time with other people and absorb information like a sponge. Yet I can empathise, hold a normal conversation with people and read body language (though the latter is a learned skill, I think)

Equally, I score 105 on this ADD quiz - the 'static chatter' in my head, the many channels, the many ideas or thoughts popping up when I'm trying to concentrate on something, getting easily bored or upset, mixing up my words... Over 70 is adult ADD likely. Do I have ADD? Dunno, but I can shut up my brain by concentrating intensely on something for hours at a time, I don't really fidget, and I'm incredibly physically lazy which would indicate not.

Yet, I can swing from an excited state where I'll babble endlessly about a pet topic and wave my arms and stumble over my words, to times where I'll be slumped, apathetic, withdrawn and low energy. Does that make me bipolar?

Well, in my case, we worked out that my regularly low energy, grey fogged, emotion-sapped, I-just-wish-the-world-would-end-so-it'd-just-be-over times that I was in near constantly were directly related to thinking about, stressing about, and coming home from work - that I was obsessed with work, could barely imagine a life that wasn't consumed by it, and was constantly stressed about the impossible demands I was placed under, that I ended up working many hours of unpaid overtime just trying to stand still. And it was causing direct and harmful effects upon my family life, and trying to have an actual life - that I was depressed, and have been treated for that for some time - and it has helped, somewhat.

But the point remains that just being non-neurotypical doesn't help you much trying to work out what your symptoms are, how best to manage them, or what things to try and avoid. If you're able to hold down a decent job, pay your bills, have friends, keep up with your family... these are good indicators that you're high-functioning, and not necessarily in need of any help. But you need someone who is impartial, outside your head, and has the appropriate experience and training to spot the symptoms tell you that. A quiz on the internet isn't really any of those.

The poor sods that can't function, that 'fall off the rails' of their life - as I very nearly did at the very bottom - they are the ones that need help. Especially children that will struggle their whole life to fit in, to fulfill their life's potential. And they're the ones that are being failed by the system.
posted by ArkhanJG at 12:40 AM on January 7, 2013 [4 favorites]

the young rope-rider:
Really? Prove it. Prove it besides saying it's "well-known" or "lots of people" or it's "accepted fact" or "everyone knows". Then prove that it's problematic instead of mildly socially irritating.
I made no such assertion that it was actually true, merely pointing out a simple explanation for why your cancer analogy wasn't a good equivalency.

For somebody who--like me--doesn't really value anecdotal evidence, your previous post seems a little confusing to me now.
posted by whittaker at 7:14 AM on January 7, 2013

Here’s a question: name another profession where you routinely see people speak as if they either know just as much as a Phd in that profession, or think in part if not the whole establishment is some kind of ruse?


Just like with the guys who write the DSM, we know the investment world is littered with experts who are paid off by their industry backers. The banks bribe the accountants and the economists and the regulators. The pharma companies bribe the DSM authors and the professional standards bodies.

And just like with psychiatry, we all have a right to point out the bullshit coming from the so-called experts.
posted by surplus at 10:44 AM on January 7, 2013

I'm glad you agree with me. Now if you'll excuse me I have to go and find an astrophysicist to argue about time travel.
posted by P.o.B. at 11:28 AM on January 7, 2013 [1 favorite]

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