The Autisnob

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*snort* my cactus has them beat in that department.

The practice of medicine is still in medieval stages. Maybe those of you who put so much stock into what they say should question yourselves for your willingness to believe it. Question everything.

TELL ME ABOUT IT! SOME psychiatrists ******STILL******* misquote FREUD! And I have one book written by freud in the original German!(About the psychology behind memory, error, and forgetfulness) How many of them can even speak German anyway!? If they can't get FREUD straight, how can they get the latest stuff straight!?

[quote="anbuend"5. Not wanting an official diagnosis because it could be used against them in situations involving custody, employment, security clearances, insurance, psychiatry, etc. (And it can, so please don't say it can't, I know too many people it happened to including people who hid it.)[/quote]

This applies to me, and it is why I paid cash for a dx on a private basis. That is not an option for many people. It served a personal purpose for me and that's why I got it.

Just because one thinks they have {insert whatever disorder here} [without professional and objective evaluation], it doesn't mean they have it. They might, they might not. Thinking you have it, and having a professional tell you the same is as close to certain as can be achieved. This is accuracy. "Sure" is in relation to treatment in my mind (this can also include allowances with school and work, or social services for those who need it), and if younger, intervention. By definition, one must have impairment in an important area of functioning to have an ASD, so in my view, "treatment" is a must.

"Treatment" can simply be telling your boss why you don't interact like everyone else (if you're having trouble at work due to your social difficulties for example); said boss will need to see a doctor's note for proof.

This is an interesting thread. I am not diagnosed, although I am scheduled to be evaluated, and I have no problem with those who are professionally-diagnosed or those who are self-diagnosed. I would like to make a couple of observations based on my profession of being a historian.

The Autism Spectrum has probably always been part of the human condition. It is really not a new spectrum. What is recent is that, in the 1940s, two astute, observant doctors, Pediatrician Leo Kanner and Psychiatrist Hans Asperger, noticed and described clusters of unusual traits in groups of their mostly young male patients. In describing the visible traits that these patients had, both men thought that they'd found a unique disorder, and both labeled it Autism. They were evidently not aware of a bigger picture, or that the cluster of characteristics they noted were part of a much broader spectrum of ability (and dare I say, in some cases, disability).

Subsequent research has revealed at least the presence of a broad autism continuum, but doctors, researchers and clinicians have not yet ultimately discovered or described all of the continuum's manifestations. People are currently being diagnosed using guidelines that are at best incomplete, guidelines that will continue to be evaluated, honed, and changed for many years to come.

Those who are "autisnobs" deep down are not happy with the self-diagnosed who claim to be members of what "autisnobs" would like to be an exclusive autism club. But does personal opinion and snobbery really matter? Yes, in at least one significant way. If what we believe and then write has a negative impact on others - if it is not helpful but creates even more doubt and hurt, then being an autisnob is not a good thing. This might be difficult for someone on the spectrum to understand because it requires empathy, and being able to relate to how others might feel is not so easy for some.

Conversely, is it a terrible thing for someone who is not "professionally" on the spectrum to believe that they have autism? I suppose it is not good for anyone to believe false things about themselves, but this we do all of the time. And as long as that self-belief is not negatively impacting other people, we humans are entitled to believe anything about ourselves that comes to mind.

Z

Edit: 1st time for clarity, second time to write this edit note.

Last edited by Zonder on 17 Apr 2008, 7:11 am, edited 2 times in total.

Zonder,

WELL SAID!! !! !

It's usually frowned upon for people to state that they have any disorder when they're not sure; whether an ASD; Schizophrenia, OCD, Bipolar, etcetera. I see it as a disservice to those who have said disorders when people are sure they have it even though they aren't [objectively sure], and some even state that they know more than the professionals who diagnose and make these labels.

I'd be in error if I said I had Schizophrenia, even though I haven't been formally assessed for such.

As an aside, the autistic continuum is well known now by outward and overt symptoms; from the severe end all the way to the broader autistic phenotype that crosses over to "normal".

Any tribe of people will always think it self superior based upon that tribes values of what is of more worth. I think of it as quite unusual because it is one of the more "NT" things that go on here.

Well, the school system technically isn't supposed to issue diagnoses, although I think they can hire people or recommend that people do so or something. When I was in special ed here in the US, they examined me, but they were not allowed to diagnose me with anything, so what they did was write down several of the diagnoses I'd had from doctors.



Professionals are never objective, in fact studies have been done showing that for many psychiatrists, diagnosis happens in the first 10 minutes or so just based on eyeballing people, and then the rest of the time they filter out anything that would prove them wrong. Most people I know who have "self-diagnosed", on the other hand, spend a lot more time than that checking out the alternatives.

But if "objective" simply means "outside oneself", it's possible to find people who know enough to confirm or deny one's own self-observations without having to see a professional.



Yes.



Any city in the first world?!

I live in an entire state that has no autism experts (of course we also have no cities larger than 39,000 people, which I'm told in some countries would be a town rather than a city). We don't even have certain veterinary technology in the entire state.

I know a lot of people in the UK. From what I have heard, getting in to get a diagnosis requires a referral there. You can't get a referral if your physician doesn't want to refer you.

Further, I know one person who has been in the psych system there (and heard from a guy who works in the psych system that this experience is common) who has tried many times to get a referral to an autism expert, but since she's currently misdiagnosed as a "psychopath" none of them will take her even for evaluation.

Something similar happened to Jen Birch, in New Zealand (she wrote a book), who was in a truly awful psych ward that diagnosed her as making up her symptoms, which led her to be incapable of getting any medical help even when she needed it for a long time. (She was finally able to get a diagnosis through someone she saw a lecture from at a conference or something.)

(Actual psych wards have a bad tendency to talk about their patients in ways that will make everything the patient's fault, thereby absolving staff of any responsibility for what goes wrong. So I've heard of this happening to a lot of people. If it makes its way into a diagnosis, it can effectively mean being blacklisted from getting professional help with anything. An equivalent thing in children is saying the parent or other caregiver caused the problem either through abuse or design, even when it's not true.)

Then there's things like navigating the system enough to get to the autism expert even if there is one around. You assume people will have someone around to make the calls for them and arrange everything. That is a bad assumption to make around people who are more likely than usual to have no friends and no family.

I have a friend now who said that she has done all kinds of things she ought not to have done, such as lift huge objects while moving (she has a spinal fusion and a partial dislocation at the spot where it stops), because people at agencies she has turned to for help have said to "have a friend do something" and told her it was impossible that she had no friends.

At any rate, having no organizational skills and no friends can mean no ability to make or keep an appointment.

Michelle Dawson describes being "thwarted by a diligent receptionist" when she first went for diagnosis. She eventually did get a diagnosis, but only after appearing in a documentary alongside the guy who helped her get one. (And then after that she was re-diagnosed several times now that she had connections and needed to confirm her diagnosis for a legal case.)

How many people will end up getting lucky through a documentary? I assume not many.

I am also, still, not sure you understand exactly how large and rural parts of the "first world" are. (Such as parts of the USA, Canada, and Australia, at the very least.) Not everyone has transportation.

I remember a friend was trying to get help for an autistic teenager in Australia who got thrown out by her parents. And she ended up being told that this person, who could neither drive nor use public transit, ought to "just" go hundreds of miles to see a psychiatrist. The fact that many autistic people have no means of transportation over large distances factors into this as well. That and the fact that the distances can be that large in a lot of the "first world" that supposedly has experts in every city (but the distance to a real city-sized city can be pretty far, even if that was true, which I doubt it is).



That's not accurate. You seem to have a naive tendency to assume the best about these situations. I know several people who ended up in very long court battles because they assumed their diagnoses would stay private and they didn't. I think there are circumstances where it doesn't stay private, and whether it's legal or illegal to pry to that extent, once the secret's out, it is out.

I once made the mistake of saying something like "Records can be kept private" in front of them, only to have that assumption overturned by several very angry people who told me they assumed that and it turned out not to be the case, and that I ought not to promulgate such dangerous misinformation. So I don't anymore.

I wish I remembered their names, because I know one of them had a legal case written about extensively on the Internet.

Also some people have talked about themselves anonymously on the Internet only to find someone (usually school district or employer) had collected enough information on them to trace their real identities somehow. While you could say "Then don't do that," that would still prevent people from getting support on sites like this one.

I am sure it is also harder to keep things secret from a spouse, who in many places has legal authority to look at one's medical records. If the spouse was planning to divorce, they might claim that being autistic meant someone shouldn't get custody, even if they should. There is a political pressure group (masquerading as a support group for people with autistic parents, but in practice making the place hell for anyone whose autistic parents were good parents, so engaging in some serious self-fulfilling prophecies) trying to get it recognized in a high-profile way that autistic people "shouldn't" get custody of the kids just because they're autistic. So these views are out there and doubtless used in custody battles already.

(And, having been raised by an autistic parent, I can say he was not a bad parent at all. I'm glad my parents never got divorced, but if they had, I would not have minded either one getting custody, and his being autistic makes no difference there.)



What you say only has validity for people who, like you, believe that the medical model ought to retain total supremacy over everything it creates. You are not going to convince anyone who does not believe that, because you are arguing from within that belief system.

That is like a Christian telling a Jew that Christ is the Messiah because the Christian bible says so. (I'm a Christian by the way, and even I know better than to make arguments from within my faith to people of other faiths. Although I'm also from a denomination not known for trying to make converts.) And at least between a Christian and a Jew it's two religions that both believe in a Messiah. Imagine a Christian telling a member of a traditional American Indian religion that -- traditional American Indian religions don't tend to have Messiahs to begin with, and are also tied heavily into the individual cultures (thus not convertible-to unless you actually marry into the culture or something) in a way that Christianity is not. Things fall apart pretty far at that point, the worldviews are too separate to argue from one into the other with the arguments of the one you're already in.

There are a lot of things that the medical community defines, that do not require a doctor to know you have. That is why there are so many over-the-counter remedies sold for things like heartburn, hay fever, etc.

If you, just for example, started speaking and then stopped at the age of one and a half, continuing to be unable to speak at all until you were four, using purely immediate echolalia until you were six, making no friends until you were 17, rocked and flapped your hands your entire life as well as doing various weird complicated twisty movements, insisted on only wearing red (taking your clothes off if anyone tried to dress you in anything else), didn't play with other kids on the playground, threw fits throughout childhood if your parents changed your routine in any way, got overloaded on a daily basis your entire life, and had a special interest in snails (both biology and drawing them in detail over and over) from the age of seven, do you really need a doctor to confirm what you already know?

Being gay, I have known a lot of people in the transgender community as well. While homosexuality is now left up to an individual (rather than a shrink) to define, gender identity disorder is still in the DSM.

Within the transgender community, there are those who believe that you don't have it unless a doctor says you have it, and if you do have it it's called "gender identity disorder" or "gender dysphoria" or another medical term. Many of them refer to it as a "birth defect" in which their brain type doesn't match their body type.

Within the same community, there are people who say "Come on, if you're born male and feel like you're either female or neither male nor female, and try to live as your preferred gender, then aren't you the one to say whether you're transgendered or not?" There are others who define themselves in ways the medical community has no category for, such as having a fluid gender that changes all the time, being male on one day and female the next and neither or both the next and back again and so forth.

Just because something has been noticed and recorded by the medical community, does not mean there are not other ways to look at the exact same phenomenon. In terms of disability in general, most people are aware that the medical definitions of various disabilities only tell part of the story at best. A person's lived experience of it is different from the medical profession's view of it, and may tell a whole lot more about the person than a set of diagnostic criteria do.

For instance, I saw part of a talk by a woman without arms, who had doctors trying to impose their medical views on her (probably including prostheses) her entire childhood. In her view, her body was exactly right for her and didn't need to be turned into an imitation of other people that was actually less functional than allowing her to use her feet for things. She took great issue with the medical word "malformation", meaning that she was formed in a "bad" way, when she found absolutely nothing wrong with the way she was formed, only with other people's attempts to turn her into a counterfeit person-with-arms. Unlike an amputee, she had never had arms, and her brain had formed an image of her body that fitted what her body actually worked like (most people born with arms will have a brain-related body image that retains arms even if the arms are removed, which is part of how a person can successfully operate a prosthesis). She was more functional and happier when she threw all those medical assumptions away and went with what her instincts told her about herself.

So while the medical community certainly had descriptions of her body and the causes of her body being like that, they had absolutely no superior knowledge of what she should do with her body, and how she should adapt to a world where most people had bodies different than hers. Even though they certainly claimed to have that knowledge, and attempted to force it on her.

And I bet that even if she never saw a doctor, she'd have noticed that she didn't have arms and everyone else did, so even that part didn't require a diagnosis for her to understand and be aware of it. People understood things like lacking limbs, or being "slow", etc., in perfectly valid ways before the medical community ever consolidated into a closed guild that told everyone else about their bodies and prevented anyone from noticing the obvious about themselves.

So, basically, not everyone shares your opinions of the medical community, and arguing "But the medical community says so, so it has to be true" doesn't mean anything to people who don't accept the medical community's word as gospel.

The reason it goes on here is because it's not 'NT' at all.

NTs get to do it more because there are more of them and they are more likely to end up in positions where they can define themselves along all these social hierarchies and stuff.

But get sufficient autistic people into the same place and we have the same range of proclivity towards or against that as any other group of people.

Saying that it's an 'NT' thing reminds me of early feminists claiming that being power-hungry is a 'male' trait. They'd obviously never met Hillary Clinton. But the reality was, women (of that particular culture) at that point had rarely to never been in positions of that much power, so they didn't have a chance to show that power and the love of it can corrupt anyone, male or female.

With autistic people, I see autistic people claiming that various social dynamics are only shared by non-autistic people. The reality seems to be, from my observation anyway, that autistic people are prone to just as ugly social dynamics as anyone. The main difference is that we have less practice at it, and thus don't know what it feels like to be doing it.

A lot of us assume that, since we have looked in from the outside, people doing a particular ugly social thing are feeling a certain distinct and noticeable way about it. We don't realize that doing that social thing just feels "normal". And then we go on to do it without realizing we're doing it, and then claim that we're not doing it, because it's an 'NT' thing. And doing it while believing you're not doing it is a way to make sure you're never going to stop doing it.

Basically, not having the opportunity to do something particular that is wrong, doesn't mean having no capacity for doing it if the opportunity presents itself. The two have become very confused, among autistic people as well (doubtless) as among autism "experts", because autistic people so rarely have the opportunity (outside groups like this one) that it looks like we never do it, and since we're defined in terms of deficiencies it's assumed we never do it because we can't do it. But get us in the right position, and we seem to do it as much as anyone.

Believing those things to be 'NT' seems to me to be one of those ways some autistic people think we're superior in some way, when we're not.

By "NT" i mean more likely to form groups or tribes excluding those that are different, where as a stereotypical person with "AS" at least in the real world be less likely to have such prejudices against those that are different. No proclamation of superiority for those with "AS" was given in my post, just that i see it as unusual for those with AS to claim to be superior and/or blame others for our short comings as we are less hungup on pleasing a larger group.

anbuend,

1. I read that the school system, whether they're remedial teachers or something different (a psychologist that's attached to the school for example), hand out "PDD" diagnoses to children in the US. It was in a prevalence study, and the accuracy of the schooling system in diagnosing individuals compared to professionals outside the schooling system.

2. See: medical objectivity. If one cannot trust a professional to be objective and know what they're doing [in the majority of cases], what's the point of having a label [that they made]? Instead of autism [which was made by objective observations], one could have their own label. You won't be able to receive help, but that's how it is in society.

3. I guess it depends on the size of the city; smaller cities are usually clumped together, so I don't think it's too much of a leap to assume that most people have a professional near them who knows about ASDs. Not a specialised clinic, but a professional who perhaps sees patients with such and has clinical experience.

You need a referral here (oz); I don't see why one wouldn't be able to get a referral to see a psychologist/psychiatrist, especially if their self-diagnosis is as accurate as self-observation allows.

People's subjective outlook can be swayed by their personal experiences; if someone has a bad experience [with a professional or a hospital], they probably will have a different outlook than someone who has a good one. This is life.

No friends or family is life too. It's not easy for everyone, and sometimes there's no help.

5. Certain situations can bring out one's records, yes, or induce legal intervention. One must weigh up whether it's worth seeking a diagnosis or not before seeing a professional, no matter what disorder.

6. One must work with the medical community if one is to have a diagnosis, and then receive the services that the diagnosis entails. Whether one agrees with how the majority goes about things is moot in the end as it's in place, and one must work with it.

Autistic people seem more than willing to form groups or tribes excluding those who are different, as long as they have the opportunity to, is what I mean.

Additionally, forming those groups or tribes doesn't feel like doing anything. It doesn't feel like "I am going to form a group and exclude those who are different," that is rarely the conscious intent behind doing it. It just happens a lot, especially after people form a certain number of social connections.

Often, what holds autistic people back from forming that number of social connections is not truly inability, nor truly disinclination, although it might seem that way if you're talking about one autistic person in a group of non-autistic people that they feel like they have nothing in common with. When large groups of autistic people get together, on the other hand, such social connections do get formed, and groups that exclude others are formed in the process.

The thing is that when you form a clique it's not something you're just setting out to do. It's just what happens when you start getting a group of friends. And then you and your friends end up sharing certain preferences and norms. And then those preferences and norms gradually solidify into things that exclude people who don't share them. And then you have an exclusive clique, without even trying to.

One of the most dangerous things I have seen about autistic people forming them, is a result of inexperience: Non-autistic people get experience doing this from childhood, and thus have more opportunity to become self-aware about what is happening. Few autistic people gain that experience early. And thus we are thrust into an autistic community where we start doing things for the first time, that most people start doing when they are four years old.

And we have the same inexperience as those who are four years old, but worse, we have the years or decades of experience of always or almost always being an outsider in those situations. That experience of being an outsider gives us imaginary versions of what we think forming cliques is like and what we think might go through the heads of people who are viewing it. Thus, we end up thinking things like, "I'm not in a clique, we don't mean to be mean or exclude people like all those cliques I've seen do." And we lack the experience to see that being exclusive isn't something that people always set out for, it just happens, and that in fact what a person has to do is actively guard against it, rather than assume they'll notice when they're doing it.

So most of us are carrying out all this learning in adulthood, and we have a lot to unlearn about what exclusivity and cliques look like from the inside, because most of us have come up with ideas that don't really fit.

It's hard for me to describe something this abstract, so I hope I'm doing it adequately. It's based on my observations of autistic communities over time, and one of the most destructive things I've seen about them, is they are full of people who are certain they can't form cliques, be exclusive, be unfair to outsiders, etc., commit all the other "NT" social sins, unless they're trying to, and since they're not trying to, that's not what they're doing. Thus, when it happens, trying to point it out to the people who are doing it is likely to provoke anger rather than understanding of the situation. And when it happens, it ends up destroying potential for community, because very few of us have learned these lessons yet, and most of the people doing it neither intend to do it nor notice they are doing it.

It's also been my experience, by the way, that people who are excluded for being different think they don't mind people being different, and think they're more open-minded about difference. And that has the potential to be true. But often once they get into a situation with lots of people like themselves, they end up finding some other kind of difference to view as bad and pick on and such.

Again, not intentionally, and not trying to be mean when they're doing it. It just happens. Look around the autistic community for opinions about people with intellectual disabilities, and brace yourself for a lot of awfulness because a lot of autistic people pride themselves on their intellects to the point of viewing that as the most valuable skill, and then view people who automatically lack it as having something automatically "wrong" with them. Look for it in anyone who has opposite traits to the ones many autistic people pride themselves on. (It's possible to pride yourself on a trait without making the opposite seem inferior, but it's also easy to fall into making the opposite seem inferior.)

Meanwhile I have seen people with intellectual disabilities say outright that people should genetically select for (typical) social skills rather than intellectual skills because (typical) social skills are more important.

It happens all the time, and very few people doing this are aware they are doing it, including very few autistic people who do it being aware they're doing it.

Hmm. That's not how they did it where I grew up.



Autism was not made by objective observations, many of Kanner's observations were subjective and inaccurate, such as believing that autistic people rejected the outside world so much that when they had reflux as infants it meant they were rejecting food as well.

Psychiatry is not an objective science.

And I am getting the strong impression that you take one little part of society that you happen to know about, and believe it's like that everywhere. It's not.



Smaller cities are usually clumped together? Really?

Where I live, there are a few towns and a whole lot of farmland.

There is nobody who has a lot of knowledge about autism around here.



You don't see that because you haven't seen it happen. It happens all the time for a wide variety of things and reasons, including the GP not being aware of autism in adults, or financial things, or just... umpteen million reasons. And not just for autism. Also for a lot of things that are far easier to diagnose. Ask people it's happened to. You'll see it's not as simple as you want it to be. (And I really get the impression at times that you must want a large, complex world to be simple and exactly the same everywhere, and to trust every single part of it to work exactly as it "should", and it's really, really not like you think it is even if it would be better if it were.)

I'll answer the rest of the post later, I've got a staff person bugging me about having to eat.

Last time I checked our countries didn't have Orwellian Thought Police. Maybe you would like to change that?

Z

anbuend - you are far more able to explain and defend the standpoint. It is difficult for me to convey complex ideas involving as much conjecture and abstract thought. Truly, I believe it can be compared to explaining color to a blind man.