alex doesn't have Asperger's

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Pithlet,

Thanks for this post, and from one undiagnosed Aspie to another, I agree. It looks like we will have to wait until 2011 for revisions to the DSM (Diagnostic and Statistical Manual of Mental Disorders) to be published, and I hope that this thread doesn't continue in the same way until then. According to the DSM, its contents "cannot simply be applied in a cookbook fashion," and are a "convenient shorthand" among professionals. Alex was alluding to this on page three of the thread. That is translated as, don't take the DSM verbatum, because it is not comprehensive in its description of mental disorders. Blanket, legalistic, literalistic statements about what the DSM means can only lead to misguided pronouncements, like the Original Poster's that "Alex doesn't have AS." Maybe we should all stop trying to be mental health professionals in interpreting what the DSM means, and how severe the impairment must be in order to qualify as being on the Autistic Spectrum.

The following is a quote from Wikipedia about the DSM, who should use it, and how careful one must be in interpreting it. The last line of the quote is perhaps the most important, the DSM "is not exclusive to what one may consider 'illnesses.'” Daniel is using the DSM to exclude "illness" but does not have the medical training or clinical experience to do so.



This illustrates why most of us discuss our personal experience as opposed to quoting Lorna Wing or the DSM. We are all intimately acquainted with our own experience, and discussing that experience can result in amazing commonalities and understanding. Quoting medical literature for which we might have only a partial understanding seems to lead to misunderstanding and intransigence.

Zonder

Zonder, I agree entirely concerning the DSM-IV-TR and its use as a diagnostic aid by laypersons (myself included, of course). However, as it states, it's a good source for information regarding the disorders in question, like any medical book; one problem I have is that people neglect to mention the expanded information when they utilize it, which explains how the disorders manifest (for example, it's commonly thought that autistic disorder and Asperger's disorder are similar in how they manifest due to the criterions they share, when in fact, those they share present in different ways).

If anecdotes are what one wants, I can explain why I think I lack "real" two-way reciprocal interaction:

I don't go out of my way to talk to people
when I do, I speak of my interest, or something I have on my mind (I wouldn't really talk verbally if I wasn't coerced by others), without waiting around for a reply after spouting my sentence; I'll only talk to those I know
I listen to what people say if they wish to talk to me, and I care for them; I don't listen to people I don't know
If someone asks me a direct question, I can respond well enough if I know the person, if not I may stumble; this is relation to face-to-face communication
I can answer questions in a "speech" environment if they're in relation to whatever speech I so happen to be giving

Typical "aspie" here.

Daniel,

If you mean what you say, then you might try reserving your personal judgment about how severe Asperger's or Autism need to be to reach a threshold of "illness." Your interpretation of the DSM excludes others in a way that the DSM cautions against doing.

Z

Daniel,

To add to what zonder said, you are applying a DEFINITE interpretation(one that DOESN'T seem to fit at all) to a vague statement. I DO lack emotional reciprocity. Perhaps 90% of the time, my reaction is as I believe it should be due to past experience. You could even say I lack SOCIAL reciprocity in many ways. But I DO still communicate fine.

Zonder,

I'm just using my ability of deduction, nothing else; some things from it are inherently easy to read for this layperson, for general knowledge of the disorder, i.e., if book (a) says you need symptoms (b), (c), or both to have (d), and if one doesn't have either (b) or (c), one doesn't have (d) then. The point of contention is whether people, me included, know how symptoms (b) and (c) manifest overtly, and this is where clinical knowledge enters the picture. It's different from reading, and actually seeing it in action.

My deduction above doesn't diagnose anyone without someone trained in utilizing such. It's just something fun to do.

Though of note, I'm quite certain my interpretation of such is fairly close to how many professionals will view the disorder in question. I've seen people on the 'net having such difficulty in gaining a diagnosis from professionals, and then lament at the unprofessionalism that's supposedly rampant concerning ASDs. After all, an online test diagnosed me, and I know more than them, right?

One can argue whether my interpretation is correct or not, again, for fun.

In a way, my overly literal interpretation may aid those who wish to seek out a diagnosis in that it may allow one to question their own symptoms and how they affect their life, but this is me presuming.

And also, information from professionals that aren't in connection to the diagnostic criteria come with no forewarning, whether it's from Asperger, Lorna Wing, or anyone else who writes/wrote about these disorders. This information gives people a common ground, a common language to follow as not everyone describes/explains things in the same way, even if the symptom is the same in how it manifests.

2ukenkerl,

Yes, and it does fit at face value in how I outlined it; whether it's from the DSM, or somewhere else that doesn't come with a disclaimer (if you don't think it does, one can always argue the point; this is how I interact).

No one,

I'd be interested to see how everyone describes their two-way social interaction, and as anbuend said, people explaining how and why they do the things that they do adds insight that the professionals will lack as they're looking at us, not through our eyes.

I find that Pluto made an excellent comparison! and you too in a way. I am French and learnt english at school and I am not as fluent as I would like to be, I can talk and chat and read and write etc but I can not exprim myself as easily as Daniel for instance. Language is a barrier sometimes for foreigner, and social interaction is the same for NT/AS it seems.

What you consider to be "fun" might be viewed by others as being irresponsible.

Z

To each their own. People like talking about...gun-type and implosion [nuclear] devices, and their schematics/employment, others like talking about ASDs and their schematics.

Worth keeping in mind is that autism is not a set of social traits, it's an overall cognitive and perceptual makeup that frequently leads to that set of social traits (or the appearance thereof) in interaction with non-autistic people.

Or to quote Michelle Dawson, who I just found to have said something very similar here:

And also here:



Keep in mind that while she can be mistaken, she also doesn't say things like this without backing in the research, which as far as I know she has read every piece of that she can get her hands on, and committed it to memory in some form or another.

She also brings up the analogy of blind people and visual tasks on IQ tests. I would note that blind people, in addition to being unable to perform visual tasks on IQ tests, can't read facial expressions or body language unless they have enough sight to at least see outlines. And yet blindness is not considered a "social disability" despite the fact that it leads to difficulty reading social cues. (As does deafness for other social cues, as does deafblindness, none of which are considered "social disabilities".) Nor are most motor conditions that produce difficulty responding physically in the standard way considered "social disabilities" despite the fact that they lead to difficulty producing standard social cues.

So in her eyes (and the eyes of many researchers), the DSM and similar criteria are how you identify most autistic people, but they're not the be-all and end-all of who is autistic. I am sure that if you are interested in this you can go over there and ask her for cites for every bit of what she's said, because she really is thorough about backing up her claims. And she is a researcher, again, not just someone who randomly comes up with opinions.

Last edited by anbuend on 08 Apr 2008, 9:50 am, edited 1 time in total.

I agree that autism isn't a set of social traits, or deficits by themselves, and there are many factors involved for why it presents as such, whether problems with visual and audible processing (like blind and deaf people) or just a basic variance that's a genetic rarity, and who so happen to be in the minority of society where the rest are another variant themselves. The list goes on.

I also agree that the diagnostic literature is only there to recognize people who so happen to display autism how others perceive it; the effect rather than the cause.

(double post deleted)

You didn't qoute my whole statement and yet left part of it.

I was saying that Alex have Asperger Syndrome and I don't see why we have to go under the umbrella topic "Alex doesn't have Asperger".

I agree with Daniel, autistic ppl can learn how to "act'' like non-autistic ppl. By practicing and observing and copying other ppl. They can memorize appropriate phrases to use in most social situations. But, it doesn't come naturally to us like non-autists. Non-autistic people will know you are different then most people. And when you are confronted with an unexpected situation you won't know how to act or respond correctly.

Most non-autistics really enjoy socializing. It's like ppl with autisims special interest for them. If someone is acting different of uncomfortable in social interactions they will spot it right away and they will ask each other "what's the matter with so-and-so.'' "Why are they acting so rude or unfriendly or weird?'' They cannot understand why someone would not love socializing as much as they do.

As someone who is undiagnosed and searching for a diagnosis / answers I find Daniel's perspective very informative.

I also think that the severity concerning impairement gets lost when conveyed in the written word. In an effort to support this, I never really thought I was socially impaired, I even thought I was outgoing for a period of time (all of this before finding AS). Even after finding out about AS I couldn't really agree with some of the symptoms as I thought I was not impaired socially, but when I started describing how I socialise, it was suggested to me that I was impaired in my social interraction.

As Daniel suggested people do, I will explain my social interraction and its deficits:

- If I am alone and I see someone I know, I will purposely avoid them and act as thought I didn't see them, even if they might be the closest person to me in the world. I will avoid work colleagues, friends, relatives etc. The possibility that I might have to talk to them makes me uncomfortable.

- If I am talking to someone, I can interract and "reciprocate" (in that I listen to what they say and reply), but for the most part I am on auto-pilot. I listen on a base level, react to what they say and ask open-ended questions, but I'm not "involved" in what they are talking about. I do it to not seem rude. To the observer it might look like I am "interracting" genuinely, but I am disinterested and my conscious mind is focusing on maintaing the auto-pilot because if I get distracted I will forget what they say, not listen, appear "in my own world" and then upset them. I usually go on auto-pilot when in conversations i am not interested in, or when talking to people I don't like very much, or don't have much in common with.

- If I am involved in a conversation about something I am interested in, I will impatiently wait for any break in the other person's sentence to put my perspective in. i will listen to what the other person says, but I will automatically have a "counter" or something to say that is "better" than what they are saying. It is uncomfortable waiting for the person to finish talking, but like my auto-pilot conversation, I tolerate the uncomfortableness to satisfy the other person. But when I get going, BAM, i'm in the zone, talking like nothing else.

- I am passive and tend to agree with everyone or sit on the fence of discussions (unless I am with friends and know the conversation won't get out of hand). I tend to overthink my actions, including conversation, and I don't like arguments because I can't think fast enough to say what I want to say, so I tend to lie, or avoid arguments altogether. This eventually leads to sadness, or a "mood", where I feel like I'm losing my self worth, identity etc because I can't stand up for myself.

- If you observed all of my conversations over a period of months or such, you would be able to say that I say the same things to everyone.

- People used to say I was rude, or if I was tolerated (e.g. by friends) they would say i was kooky or eccentric.

- People, even girlfriends (and my wife) would say I lack common sense, and see that as a personality trait. That I am very intelligent but lack common sense, and this added to my "eccentricity" or "kookyness".

- I use funny noises, echolalia and silly things to overcome my uncomfortableness, and make other people feel more comfortable. It again, makes me seem kooky, funny, and defines my external personality.

- I can look people in the eyes, mostly when I am listening to them, I trained myself to do this by looking at their mouth first and moving my way up. However when I am concentrating I tend to look at the floor or focus on a point, or pattern. I only look around randomly when I am not talking and the other person is not talking (i look at the lights, articles around the room).

- I can't read non-verbal communication, but I always just put that down to me being gullible. I even made a joke out of being gullible putting it down as a "personality trait". I would say to people "I'm so gullible that you could convince me that gullible isn't in the dictionary", and people would admire my honesty.

Externally, I appear no different to any other person. I appear to interract reciprocally, I appear to be outgoing, I appear to have no problems with confidence in front of people, I appear to have no problems with any communication. Internally, my problems are not easily recognised consciously, it is mostly subconsciously, all I really experience literally is an uncomfortableness, pressure or irritability / temporamental(ness). It is only through AS that I have been able to re-visit what I do, and see the workings behind it, but it took a lot of thought. I am 25 and only found AS 4 months ago, and throughout my whole life never thought I was socially impaired outside of being shy.

So I agree with Daniel in a way, I am socially impaired. I have developed mechanisms to overcome my problems. I enjoy social interractions most times, and can ask questions and be involved in conversations, however the mechanisms behind this are completely different to how a normal person would approach a situation, and the fact that I have to place a stress on myself to achieve what a normal person achieves without stress, is what I guess Daniel is trying to say. When and If I reach a point where that stress is no longer there and my mechanisms are so subconscious that I no longer have an impairment then that will no longer be a symptom, and in some cases I would not be eligible to be titled with a Disorder.

Essentially, you are who you are. Being diagnosed with AS is giving you a label to state that the way you are is different to the majority and due to this, is a disability or disorder affecting your interraction with the world. Once the things you do stop being a dissability, disorder or hinder your interraction with the world then you no longer have that label. You are still you, and still have the same past and history, you are just not at a disadvantage anymore and technically would not be able to say you have Asperger Syndrome, because the symptoms of the Syndrome don't affect you anymore. So you would say "I HAD Asperger Syndrome, but now function normally". If that makes sense.

I don't think anyone's saying that we have zero impairment in socializing in a typical way.

We're just saying:

1. There's more than one "real" way of interacting.

2. It's possible to be autistic and be able to carry on a genuine two-way interaction.

3. There isn't one "real" way to have a genuine two-way interaction (the typical way), and then a whole bunch of "false" ways to have a two-way interaction (non-typical ways) that are somehow non-genuine just because they're not typical, and nothing else.

3, rephrased. There's more than one way to have a genuine two-way interaction, and "typical" isn't a synonym of "genuine" last time I checked.

Also, some of us are saying:

4. Being able to figure out at long last how to carry on a two-way interaction in the typical way (or something approximating it) doesn't make a person non-autistic and doesn't make the interaction any less genuine.

The idea of "used to have Asperger's and now don't" is pretty much nonsense. Autism has rarely even been studied in adults. It used to be said that an autistic person was cured the moment they learned to speak. I have met people who were told that and still believed it into adulthood. I recognized them as autistic before they said a thing about it.

Social skills problems of the kind discussed are just a manifestation of autism, not the fundamental essence of autism, and at that they are frequently more like a manifestation of the clash between an autistic and a non-autistic brain trying to interact (i.e. it's a two-way street here, non-autistic people are quite impaired at reading autistic people after all).

If an autistic person really does learn to do it all the way you claim would make them "no longer autistic," they still retain the cognitive and perceptual features of an autistic person. To tell them they're no longer autistic because of that is like telling a deaf person she's no longer deaf because she can lipread and speak so well nobody would ever know. Autism is no more about the inability to carry on a two-way oral conversation than deafness is -- but you can often spot an autistic or a deaf person by the way they try to go about it. Once the autistic or deaf person manages to pass is not the point they become non-autistic.

One reason I emphasize this, and agree with another poster that the point of view that autism stops then is an irresponsible and in some ways downright reckless point of view to take, is because I've known too many autistic adults who learned to do that stuff really, really well. They have jobs, often families, and to most people nothing sticks out as unusual anymore.

And they go this way for years. Perhaps decades.

Then something happens in their life.

Some bit of extra stress.

Or the usual age-related minor declines in cognitive functions or energy levels, the kind that most non-autistic people can just laugh off, not anything big.

Or the onset of a disease or disability that makes them have less energy to spend on everything.

They stop being able to pass as non-autistic.

They stop being able to do all the things they were able to do before.

Or they just plain start burning out.

Either way, they're left with the same problems they used to have.

And everything falls apart.

And they have no way of getting appropriate assistance.

Because they're "no longer autistic".

Do any of you who think it's good to make sure everyone's good and clear on who's autistic and who's not, these segments of the autistic community who are seemingly obsessed with Diagnostic Absolutes, stop and think that before drawing these boundary lines for the rest of us?

I mean, I'm not likely to become affected by this any time soon.

But a lot of people I care about are.

I know a woman who figured out how to pass and everything like that. Made a life for herself as an "NT" even though she didn't know the word. The problem is she did it by creating characters to do her work for her. She was almost sleepwalking through her life, including her marriage, in a way. When she "woke up", so to speak, she was in her fifties. She had a husband. And a job. And she wasn't able to take it all anymore. And she'd lost decades of her life to the illusion that she'd been "normal" and "no longer autistic" (the word autistic wasn't known for her, but people knew something was up, until she began passing) and all that. The situation, while not at all her fault, wasn't fair to the people around her, either. But it was least fair to her, she still has trouble believing she essentially lost several decades of her life.

That's the kind of price people end up paying when they think they can escape into "no longer autistic" if they just get "normal" enough. Nobody will know it though. Not even them, sometimes. Because that's how facades work. So a person could say "Well she's suffering from it obviously, so she's still autistic," but who would have known that all that time? Nobody would have. Nobody would have had any way of finding out, and you can't just see inside someone's head to know they are doing something like that. And that's often what "becoming normal" is in an autistic person's life.

Even when it's not that extreme, even when the person manages to be comfortable and not totally dissociated from who they are, they can reach a point they didn't even foresee. Where for whatever reason, their ability to do things breaks down, in the situations I've already described. I've seen it a lot.

What happens to them at that point? Well usually they get referred to psychiatry, which when looking at adults rarely looks at the possibility that they have a "childhood" condition like autism. So they get labels thrown at them, I've heard depression, PTSD, schizophrenia, bipolar even. Or if their abilities break down far enough their doctors can even become convinced they're dealing with dementia or some other degenerative neurological disease that is likely to kill them, rather than just that they're autistic and no longer able to maintain the amount of stuff they'd been doing before then (sometimes for a medical reason, sometimes not, but often the medical reason can be something relatively minor, far less dramatic than it seems from the outside). Which is far less alarming and far less likely to get them treated for things they don't have.

So, please, think about these things before you draw all your lines in the sand and decide this is harmless or even somehow a good thing to be doing. Autistic people retain autistic brain structures no matter what we do, and just because we can do something now doesn't mean we won't lose it all in the future, sometimes when we'll really need people aware that we're autistic, not "used to be autistic" or "used to think we might be autistic".

Maybe it has to do with first impressions or something. When I first came into the autistic community, most of the people I met were not young people like I was at the time, they were people in their 40s, 50s, and 60s who were dealing with things that are almost never even studied in autistic people because back then autism might as well have ended in childhood as far as anyone was paying attention to adults (it happened, but rarely, more rarely than even now, and it's still too rare).

These days, I see a lot of autistic people my age and younger, and I wonder how many others really know a lot of adults who are middle aged and older. Because as you know more and more people that age, you start to see patterns, and many of them are very different than passing better and better and better and living more and more and more the way typical people do without any eventual changes in the other direction.

I may not totally identify with the parts of someone's life where they're passing really well and doing all the normal "NT" things, but I also don't think there should be some kind of cutoff past which someone is considered suddenly "not autistic because they're doing so well". And even if I was offended by it, I hope someone would tell me to get over it, that maybe other people being able to survive in their futures if it all somehow stopped working, was more important than whether I felt like people I couldn't identify with were encroaching on my medicalized-diagnostic territory or something.

I spend a lot of my life fighting over-medicalization, I don't understand why some people seem to embrace it beyond the bare necessities they need to get by. But please, even if you like medicalization better than I do, please think before trying to impose it on other people. Think about the scenarios I talked about, and remember the world isn't a tidy place that would just reinstate autism like "Oh. You were autistic, and then you weren't, so now you are again now that you're having more trouble." Things are rarely that simple, and I know way too many people dealing with the consequences of this kind of thinking.

anbuend,

WELL SAID!