nts_are_weird ([info]nts_are_weird) wrote,
@ 2006-07-02 19:34:00
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Thomas McKean
If you got here from the link on autistics.org, note that the editorial is in response to McKean's letter, not my response to it. I quote McKean's letter below - scroll down to the indented section.

For the record, I am diagnosed (age 4). I have no idea if the doctor was reputable in Thomas's eyes or not. The records have been lost and/or destroyed however, as the autism diagnosis was dismissed for many years in favor of others, such as mental retardation (age 5), giftedness (age 8), behavioral problems (ages 6-17), personality disorder (age 13), and others. So perhaps what I say is "self serving." So be it.

I'd also add that I have and will continue to speak out about ABA and the over-drugging of kids.

And that I'll fight for the right for the autistic adults to identify as autistic, even without the written diagnosis at the right age combined with the proper stereotypical childhood experiences and political views that Thomas seems to be demanding. But then again I don't see the hordes of faux autistics that Thomas and the curebies see.

Ironically I found Thomas McKean's book to express a lot of things about my experience that I've seen very few autistics write about (perhaps however both me and him are not autistic if the majority of autistics have different experiences! Yes, that's sarcasm)

I also fail to see the problem that Thomas sees with impostors in the community however.

I'm including the document attached by Thomas that was sent to me and many other people. It was a large enough list that I basically am considering it public information that needs to be examined in public.



The email Thomas sent to 67 people:

I removed the email from here and replaced it with this http://www.thomasamckean.com/articles/speaking.htm link to Thomas's own site. Please note that this in no way means that I agree with Thomas on this issue, but I also feel that people can make a reasonable decision on their own when shown multiple sides of an issue.

I also, contrary to his claims, fail to see how an email, sent to many different organizations and autism leaders, was supposed to be "private". In fact, everything about it seemed to indicate he wanted people to change policies in organizations, which would require discussion within those organizations.




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[info]wakasplat
2006-07-03 03:37 am UTC (link)
Thank you. I'd been meaning to blog more on this but hadn't got the chance yet.

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[info]reyessloughter
2008-08-11 04:33 am UTC (link)
I'm sorry I never got the chance to meet you. Thank you for everything. We'll miss you. Pat Labels: reccomendations posted by Pat at AM 16 Comments RSS info Archives March April May June July August September October November December January February March April May June July August Previous Posts Interview - Fantasy Literature Video Interview Part 2 The Pat Rothfuss Escort Service.

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[info]kishnevi
2006-07-03 03:58 am UTC (link)
It's a demand that the parameters of discussion be left to psychologists who believe in ABA and drugging, and that only the people they certify as being autistic be allowed to speak. It's a demand, in other words, that people only listen to the people with whom he (McCean) agrees, that only the people who agree with and have submitted to the establishment, be allowed to speak.

It's a very Freudian mispelling to write "reigns" when he meant "reins".

He does have one possible point: that we can't really represent those who can't adequately communicate by some means or other, because we don't know what they think or experience. I admit I have no idea of what it is to be like that: but then, I'm one of those kids who could talk and read before I was toilet trained. But the point he misses is that the same can be said for anyone else: because no NT knows how: only an autistic person who was similarly uncommunicative but learned communication in later life can do so, and since everyone is an individual with different experiences, even that can be very limited. His argument applies not just to "high functioning" autistics, but to everyone in general.

I know that my experience and the way my mind work fit the classic Asperger's profile, and that much of how I feel corresponds to the way that other autistic people have described. So maybe I am not an aspie; maybe I'm not a high functioning autistic person. (I'm in my late forties; getting a diagnosis is, at this point, of little benefit and possibly detrimental) But I'm close enough that my experiences matches the experiences of "real" autistic people more than almost any so-called normal person.

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Autism Diagnosis and severity -adults
(Anonymous)
2007-01-11 10:15 pm UTC (link)
Unlike achievement and cognitive assessments, evaluation for Autism is less based on hard empirical data of the subject as he performs in a standard environment on standardized (normed)test. In other words, the person with possible autism can do a performance and recieve measurements in a couple of hours in a Psychologist's office. Still, having "hard empirical data" is actually a form of corporate convenience and not necessarily qualitatively better a description of the person or his abilities. So although not necessary for strick measured assessment, evaluation for autism may be more time consuming and complex for diagnosis. This is mostly true for adults as a closed in social setting to observe them is not always readily available.
Diagnosis of moderate and severe autism is likely much more obvious as there are impairments in communication and often stereotypical physical behavior. But mild Autism is very different as is Aspergers. Mild Autistic should show language impairments however they may be only obvious during early childhood. There may still be much impairment however it may just not be that noticeable. The person may have the intelligence, to be glib and witty but yet only thinks of the correct response minutes or hours after the interaction. With Asperger's there is no language delay and the language issue is extremely subtle.. The Aspie simply may not be good at quick come backs like most of her/his peers, not recognize sarcasm and take things very literally even as a teen.
Its very important to distinguish autistic level as Aspie's can percieve the worlds big picture and go right into the thick of matters better than non aspie. The pluses may perhaps outweigh the minus's in some very mild cases where with more involved Autism this does not seem to be the case.

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[info]horaceratlive
2008-08-11 02:39 am UTC (link)
Its discussion of autism itself was minimal and shallow. Mr. MacKay's recommendations for training required timelines of years before autism specific training would even begin for teachers aides and resource teachers.

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[info]kimberlyfunke
2008-08-11 03:38 am UTC (link)
MacKay's recommendations for training required timelines of years before autism specific training would even begin for teachers aides and resource teachers.

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[info]danesnodgrasse
2008-08-11 11:02 am UTC (link)
MacKay's recommendations for training required timelines of years before autism specific training would even begin for teachers aides and resource teachers.

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[info]antontullos
2008-08-11 11:41 am UTC (link)
Its discussion of autism itself was minimal and shallow. Mr. MacKay's recommendations for training required timelines of years before autism specific training would even begin for teachers aides and resource teachers.

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[info]kirayoshi
2006-07-03 11:08 am UTC (link)
If you are claiming to have autism, let’s see some proof

So, he wants proof. I think that's not unreasonable to ask for, but there is a problem here. I mentioned it before to someone else and I didn't get a reply to this.

I'm gonna mention pharagraph 2 of the Charter of Rights of the European Union for Autistics here, Quote : THE RIGHT of people with autism to an accesible, unbiased and accurate clinical diagnosis and assessment.

The assessment that I had costed me almost nothing but I heard of several people who live in the United States that an assessment is something they just can't afford. I've heard that it can cost $1000 and more.

That's why there are undiagnosed people. So, I hope that in the future an assessment is accesible for all people over the world, the United States included. At that time McKean could have a valid point. But as it is now, not everyone have been so lucky to be diagnosed as he is.

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[info]wakasplat
2006-07-03 05:26 pm UTC (link)
I do actually find it unreasonable to ask for proof that someone is autistic just because they have unpopular opinions. I rarely hear anyone asking for proof that someone really is a parent, or proof that someone really is a professional, even at times when demanding said proof would seem to be in order. I also haven't seen people complaining about the possibly-autistic 40-something speaking woman who impersonated a 25-year-old non-speaking autistic man in order to drive home a highly cure-oriented point. There's a double standard at work here.

Even in a perfect society diagnosis-wise, there's a lot of people who might not want an official diagnosis, and I'm not sure it's right to make them a second-class autie as it were.

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[info]kirayoshi
2006-07-04 12:22 am UTC (link)
I understand what you are saying and I agree it's not recommendable that autistic people should feel the need to proof themselves, being autistic. Even the assessment is something that should be considered confidential between the autistic person and the doctor/psychologist.

But I didn't explain too well, as usual. The point I was trying to make is that people should have a choice making their autism diagnosis public. But have people a choice when they can't afford an assessment ? Is it right that only autistic people who can afford an assessment and therefore have a choice to make their diagnosis public or not and people who can't afford an assessment haven't a choice at all ? I don't think so. An assessment should be accessable to all people and as long it's just big business it ain't right.

Also, ideal would be that this wouldn't be a topic, but proof is there, people (like McKaen) are asking for proof, so people should have the choice to respond and that choice isn't there for many because I heard enough stories of people who prefer to pay their rent instead of paying for an expensive assessment.

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[info]nts_are_weird
2006-07-04 01:17 am UTC (link)
As for the choice in making the autism diagnosis public, I agree, we should have the choice. We also should have the option of seeking diagnosis. I have no problem with either of these concepts.

I do have a problem when proof of diagnosis is demanded before we can be considered "fully autistic", just I have the same problem if speaking people are considered non-autistic or whatever else. I'm not "more autistic" or "more authentic" when I type instead of speak, for instance - I've not changed!

But there are many reasons people might not want to make diagnosis public, and many reasons why they won't want to seek it. For me, Thomas seems to be asking for me to seek *re*diagnosis if I were to want to speak somewhere - what's the point, though? It carries the risk of misdiagnosis that could hinder me the rest of my life, and it doesn't provide benefits (I make a decent enough income that I'm expected to pay for my own supports). So why should I go through it?

I do agree though that diagnosis is inaccessible to many (most?) adults. This isn't just a US problem, although certainly some countries are good (Belgium) and some are bad (the US is bad for a rich country, although not bad compared to the world as a whole).

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[info]kirayoshi
2006-07-04 11:28 am UTC (link)
I agree of course that people shouldn't divide autistics in separate groups (diagnosed vs undiagnosed) or whatever I read the last couple of months. I hope I didn't give a wrong impression here.

Point is the free choice of making public the diagnosis, something that is in my opinion morally questionable too, but like in your original post, it seems that is what people like McKean are asking. So, people should have at least the choice to do that, nomatter I think it is wrong, but that's only my own thought about it.

Therefore I find it a bad thing that there are people that have no oportunity to get a diagnosis. Also, you are not the only one I've heard of who was diagnosed and have no proof of it. I can't imagine that. Everything medical that happened to me from age zero is stored in a file. That file is kept by my doctor and if I change doctors, that file will move to that new doctor. How is it posible that medical files are lost ? I think it's not fair that people like you cannot access your medical/diagnose files. Perhaps you don't want to use them for proof to McKean, I can understand that, but you could always experience something like I have the last couple of years (I hope not of course, but that's not the point) and would need your diagnose to get some help. (In my case an employment office for disabled people will help me to find I job - I needed my diagnosis to get help from them)

In the end, it all about the choice to have or have not an assessment. I agree, I heard people say they don't want a diagnosis but I also hear a lot of people saying they want it, but there is a problem that it's too expensive/not accessable.

I wanted my diagnosis for myself, to find some rest and peace within myself and I heard a lot of people saying more or less the same. Wouldn't it possible that some people who say they don't want a diagnosis because they know it's not very accessable have another opnion when an assessment would be accessable ? Would some of these people change their mind when an assessment became free of charge ? I don't know of course. What I do know is that I had to wait 13 months before I could get my assessment because a lot of people want an assessment where I live.

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[info]katkavatir
2008-07-16 03:28 pm UTC (link)
Also, of course my father-in-law was never diagnosed as autistic, but that doesn’t mean he was Joe Sixpack.

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[info]vonwimberly
2008-08-11 01:26 am UTC (link)
But I agree, of course, that a grown man doing so much damage in the world shouldn't be tolerated.  That's an entirely different matter from being interested in how he got that way.

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[info]caitlynpriore
2008-08-06 05:00 am UTC (link)
States also have the option of serving those who are at risk for poor developmental outcomes. The type and extent of services are determined through the development of an individualized family service plan (IFSP).

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[info]roscoeglin
2008-08-06 05:06 am UTC (link)
We all want to make enough money to provide for a decent life for our families and ourselves. With the critical staffing issues the Federal Agencies are having, a golden opportunity to make significant inroads to correct the compensation issue, starting with P to P is at hand.

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[info]lordalfredhenry
2006-07-04 07:47 am UTC (link)
Many people claim ADD who are not official but everything fits them. No one complains about that. Would this be similar?

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[info]carissakazyq
2008-07-16 01:39 am UTC (link)
I have asked car dealers and they just laugh at my request, saying that many people want them but they are not available anywhere.

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What happened to the First Amendment?
(Anonymous)
2006-12-11 03:23 am UTC (link)
I also think it is unreasonable for someone to ask for "proof" of one's neurodiversity. If someone were speaking up for gay rights, would they be required to provide proof of their sexual orientation? If someone is Jewish by choice, and not by birth, would they not be considered "Jewish"? If someone is born from inter-racial parents, would they be less African-American or Latino or Asian? Or, a perfect example could be drawn from Alcoholics Anonymous. The only "requirement" is the desire to stop drinking. One does not have to have proof that they ever received a DUI or submit to a drug test or have attended a detox or rehab to qualify as an alcoholic. Having done by masters thesis on alcoholism and having interviewed many alcoholics, there was no "typical" alcoholic. So, if someone associates with any aspect of the autistic spectrum, let them speak and write freely of their sentiments. After all, isn't this what the First Amendment is all about? To place limitations on one's speech is to engage in viewpoint discrimination.

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[info]miltonquen
2008-08-11 07:13 am UTC (link)
Do they really know what they are putting themselves through. Do they know about the peculiar effect of low-conflict divorce on children.

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[info]abehelmken
2008-08-11 06:43 am UTC (link)
He could see the whole universe in there, but had no time to answer all the questions, let alone examine all the arguments to even only one of them.

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[info]lordalfredhenry
2006-07-04 07:44 am UTC (link)
I also fail to see the problem that Thomas sees with impostors in the community however.

Not sure I understand this part very well. Are you saying there are quite a few imposters in the community and there is not a huge problem with it or are you saying that there is not a problem of imposters? I'm going to assume the latter for the sake of it being closest to what I'd imagine it to be. But how many times I've been surprised at an answer is too many for me to count.

I've gone through a constant stage of worry. Worry unto sickness even. Nothing to shed tears over but seriously something that has caused me complete fatigue and burn out. I have worried that others think I might be an imposter. I get the conventional wisdom advise not to worry about what others think. I know my life...and it goes without saying, like no other. I have two psychs who suggest Asperger Syndrome out of a long list of things I've rattled off to them. I have a few other counselors and therapists who do not question it at all and know about it. I have friends IRL who are autistic/young age. I've met you. I don't know what you or others think about me being autistic as I'm not as stereotypical in ways that some expect. Still, all I can say is that I've had difficulty understanding human interaction/distant infrequent and short term friendships and I can't see myself as being like most people I know. Every autistic I know has something that an NT could consider as "definitive autism". I even know one NT who told me that all autistics had to have bottle thick glasses. I laughed because they only knew two autistics and it was coincidental...their anecdotal observation was. They would not consider either of us as autistic perhaps. I find that ludicrous. Some autistics don't consider me autistic because I don't have one or two traits they have while others here locally consider me more autistic than them and there's a few here locally that I consider far more autistic than anyone I've ever met online. Or that is how I used to think. Now I don't think in terms of a scale or spectrum. A spectrum is better than a sorting bin for people a la HFA/LFA. Still, this notion of spectrum or rather "scale" carries a lot of the single dimensional problems. This underlying judging people do constantly in their brains is conditioned in them. It is this kind of thing that makes me recognize that this person is merely being judgemental of autistics and putting an excessive "Appeal to Authority" fallacy here. Not everything can have a Formal Study® and not everyone has access to a Formal Diagnosis® but would have every right I think to relate the issues they confront or have a right to an opinion or even state facts that back up that opinion. Does it not occur to some people how hard it can be to get a diagnosis at a late age? I find that nigh unto a circular argument and also a logical implausibility that those with late diagnosis are suspect. Not everyone had a doctor that could figure it out. And even if they could, I'm sure my doctor might have thought about/recommended neuropsych to my parents but due to cost, it was a referral they couldn't afford or had a high priority for so they settled on the "maybe he's partially deaf" thing. There was no insurance for them at that time. I too have been called retarded or "slow" or "dimwitted" by many teachers or "not able to follow directions" and then afterward called "gifted" etc.

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Ha this is a riot
(Anonymous)
2006-07-10 06:13 pm UTC (link)
Thomas,

You seem to be assuming that autism conferences are full of anti-ABA and anti-cure speakers. That is patently false. In fact , the anti-cure and anti-ABA perspective is lacking. Sure speakers will say they are anti-cure after they speak and not before.

And being pro-cure and pro-ABA is an opinion not fact as well thomas


TheASman theasman.blogspot.com

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Re: Ha this is a riot
[info]wakasplat
2006-07-10 06:49 pm UTC (link)
This is a repost of something Tom wrote. It's not reposted by Tom, though, but by one of the recipients of his letter.

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Dbl. Std. Dept.
[info]dkmnow
2006-07-10 07:57 pm UTC (link)
Apparently Mr. McKean forgot to specify that his little "proof-of-pedigree" requirement shall be deemed unnecessary in the case of "recovered autistics" -- just as in the case of parents and professionals.

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(Anonymous)
2006-07-13 11:41 pm UTC (link)
"A lot of people attending conferences are parents of newly diagnosed children. These are emotionally fragile parents who do not have a clue what to do, simply because they could never foresee this happening to their child. As such, the person (or organization) who is putting on the conference has a responsibility to these parents, and to all who attend. They are accountable for who is speaking."

In other words: "They haven't bought the 'party line' yet, so we'd better not let anyone interfere with them before the stereotypes are entrenched."

I disagreed with this attitude when Michelle Dawson said that parents should learn that ABA is bad before they find out what it is. I disagree with this attitude here, too.

Someday, I'd like someone to show me the scores of people claiming to be more autistic than they are (both NT and mildly autistic). I have heard of two, so far. One is the author of that poem My Name Is Autism, and the other is an NT who wrote stuff claiming to be an FC user and saying things many real FC users said.
Ettina

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(Anonymous)
2006-10-05 04:17 am UTC (link)
Well... I suppose it would be a simple thing for one to say "I have Autism". And after saying this to assert that therapy "xyz" is bad or good. One could, as a self proclaimed voice of ASD or as a self procalaimed person with ASD, assert that Cognitive Psychology and the approach of building on the strengths of folks with ASD is the best and that ABA is the worst... or vice versa. I for one don't find it an odd thing to expect folks who "self diagnose" ASD to say something to the effect that "I read this wonderful description (DSM IV) of what ASD is I have it (or maybe I am suffering from Hypochandriasis )... I expect folks to reveal their credentials as professionals and I expect folks who present as "speaking as a person with ASD" in public forums and debates to reveal the basis for their alleged expertise... or I wonder if they are faking or scaming. It does not seem unreasonable.

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Who listens to what music?
(Anonymous)
2006-12-04 06:32 am UTC (link)
Hello. Good day
Who listens to what music?
I Love songs Justin Timberlake and Paris Hilton

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Entire debate misses the point
(Anonymous)
2006-12-07 01:55 am UTC (link)
I have been diagnosed with autism. Now, who diagnosed me? A psychiatrist diagnosed me. Now, why did a psychiatrist diagnose me and not joe average picked off the treet? Because my psychiatrist had gone through almost a decade of medical training and still he had two supporting psychologists to confirm his observations. After three weeks of observation one on one with the two psychologists I was finally diagnosed at age 13 (even though all the males in my family have an autism diagnosis three weeks observation was still used).
Now, between the medical professionals there was about 20 years of medical training. They had dealt with these cases many times over, they knew all the latest literature and knew that due to my family's high rates of autism the likelihood of me having it were very very high. Still it took that long, this means that diagnosing autism is a very hard thing to do (and having a few of the symptoms, even if they persist can be perfectly normal). Now, "self diagnosed" autistics should not only suspect but they should be entirely disregarded for the simple reason that they do not have the skills required to self diagnose. There is a reason it takes so long to become qualified to diagnose mental illness - because it requires advanced medical knowledge far beyond the scope of a normal person. Even if a self diagnosis turns out to be correct (and if it did it would likely be due to sheer chance more than anything)every one in ten times (the actual figure would be many many times higher than this, likely closer to 1 in 500+) then 90% of the time a self diagnosed autistic person is speaking with authority despite having no comprehension of what having an autistic spectrum disorder actually means. Now, if you say self diagnosis is valid when only a very small fraction of self diagnosed people actually will have the disorder then you claiming 10% success is worth more than the 90% failure rate. Obviously it would be absurd to claim a 10% (or more likley 0.01%) effective system is worth anything, and because of this self diagnosis cannot possiby be used and self diagnosed autistics must be discounted simply because it's extremely unlikely they actually are autistic.

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Re: Entire debate misses the point
[info]nts_are_weird
2006-12-07 03:17 am UTC (link)
The problem with your statistics is that they have no basis. If they were correct, I'd agree with you, so the issue becomes: Is your 10% or 0.01% chance correct?

My answer is no. First, I know many autistic people who got diagnosed (by professionals) after deciding for themselves that they were likely autistic. I know nobody who thought they were autistic but found out they were not after getting formally assessed. My personal experience alone (probably 30-40 autistics who thought they were autistic before being diagnosed) would invalidate either of your numbers - my sample size is large enough.

So, based on my experience, and that of many others, I believe that the number must be higher than 10% for accuracy. In fact, in my own personal experience I'd say it approaches 100%, probably slightly lower, but definitely in the 90%s. I don't think people self diagnose by saying, "Oh, I think I have a non-normal neurology. I'm going to pick, at random, a neurological condition and say I have it." I think instead they say, "WOW, that's me." And I think with Autism that's usually correct.

I'd also add that while you feel you have a proper diagnosis, shrinks very often disagree with each other for diagnosis of a patient, and there is a well documented history for autistics getting bizarre labels - and later finding the correct label when they visit a shrink that actually understands autism. Not all shrinks do.

But that aside, having medicine define autism - without any input from actual autistics - is rather frightening in itself.

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Adult Diagnosis & Speaaking out
(Anonymous)
2006-12-12 02:53 pm UTC (link)
I have some very interesting points I would like to make on this subject and discuss with others as well. I just found this site though so I will wait until later to write more, first I would like to "meet" the person that manages this spot. Just meaning official hello and intro. Tell me how to do that and where to write and then I will post more.

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Adult Diagnosis
(Anonymous)
2007-01-28 08:06 am UTC (link)
I self-diagnosed migraine headaches, saw a neurologist, told her my symptoms, she agreed, and I am official a migraineur. Other doctors take my word for it that I get migraine, without asking for her records. Why would I lie about migraine? It is the worst pain imaginable and the drugs suck.

I did research, took online quizzes, thought about my life, phoned my family, and decided I probably have AS. I mentioned this to my psychiatrist and he brushed it off as absurd, even though he raises his voice at me due to my literal-mindedness and inability to look at him.

I truly believe part of the problem is that I am female, and "everyone knows" women don't get AS. Most psychiatrists and neurologists have never heard of Temple Grandin or any other female autistics. It's like we are invisible. So here I sit, alone with a computer, and told to "prove" I belong to a community of outsiders.

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This is a more general statement on this matter
[info]asylumabsconder
2007-04-12 09:38 pm UTC (link)
I understand Thomas' idea that we shouldn't simply listen to anyone who gets up there to speak to us, especially on our behalf. How can we decide whether or not to listen? Perhaps simply by the words they speak?
Well Thomas thinks we should seek their ligitimacy as an Autistic and also have some back ground information to base their ideas upon. That is reasonable, and perhaps will even be instituted by particular organizations such as the ones Thomas speaks for, since they are compensating these speakers, and very likely moderating the speeches. I read on McKean's response to the Letter he wrote, that he often got into trouble for saying the wrong things... who is deciding what is right?
I live in the US and have just about pulled all of my hair out over the impossibility of getting diagnosed. So far no psycologist will even take me seriously. Don't I seem serious enough? I have no agenda except to know that I am not lying to myself.
On the other hand, If I were to speak publicly on Autism based on my understandings and experience, they would be glad that they can discredit me. I deserve better than this.

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What has this world come to...
[info]vulpix1000
2009-05-04 06:41 pm UTC (link)
I've been in the special ed system. I've been in two diferent institutions. I've been outcasted, ridiculed, and dehumanized. I was told that I have Asperger's Syndrome by a psychiatrist.

I've taken the online tests, have been able to explain everyone of my oddities through the classic symptoms of AS, and I have been flat out asked if I had AS by a psychology major at my college who I had just met the day prior.

Yet he's trying to say that I don't have it because I don't have the documentation of it? Bullshit.

I will declare this right here and now.

I have AS. I am Anti-Cure.

That is all.

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