Introduction and some information re: DSM-V

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EverythingShimmers
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08 Feb 2013, 2:22 am

Hello Everyone,

I would like to introduce myself to all of you in this vast, like-minded, community. I am a 22-year-old female, living in the Vancouver area of British Columbia, Canada.

In admittance, I've been "lurking" regularly on this forum for about five months - ever since I started seriously investigating the possibility that I might have Asperger Syndrome. This investigation was initially sparked by reading a small article in Maclean's magazine back in September and subsequently coming across the book Aspergirls by Rudy Simone - which I read in entirety that very night. The topic of Asperger Syndrome rapidly developed into an all-encompassing obsessive interest, during the pursuit of which I was easily spending as many as six hours a day (probably even more some days) reading every bit of information from every source I could find. Despite the fact that my family considered me legitimately self-diagnosed with AS (the evidence that I fit the diagnostic criteria from preschool age to present was overwhelming), I still didn't feel completely confident until I could acquire a professional opinion. It took months for me to weigh the pros and cons, to objectively look at the "dilemma" facing me, and to investigate the ins and outs of the diagnostic process. In short, I concluded that, for myself, it would be best to find out if the "fact" I thought I knew, was, in fact, a fact. I decided to wait until getting my formal diagnosis (were it to happen) before letting my "passive" hobby of reading about AS become an "active" hobby of talking about it in the public sphere.

So, on Monday, February 4th, I had my psychoeducational assessment, to which I was accompanied by my mother. It lasted over six hours and, at the end, the doctor and her practicum student told me something along the lines of, "Well, congratulations. You are one of the aspie girls." Afraid to believe her too quickly (even though it seemed that she pretty much thought I had it before we started, since I had sent in a lot of information first), I asked for confirmation. She said, "You clearly meet the diagnostic criteria. At this point, we can confidently say 'You have Aspergers'." Those words were the validation I'd been seeking.

(I know there are a lot of you here who are on the fence about diagnosis, like I was, and I would be glad to share my personal reasoning for the path I chose as well as the valuable information that I gained from my experience.)

This may not be the place for this topic, but I'll just go ahead because I know a lot of people on here are interested. My decision to go in for a diagnosis in 2013 despite the uncertainty surrounding the changes to the DSM wasn't easy. However, I decided there was a very good chance I would still meet the new criteria and, to me, the name of the diagnosis didn't matter as long as it applied to the same thing. After the doctor told me I definitely had AS, I asked them directly what the changes in the DSM-V, out in May, would mean for me and the title of Asperger Syndrome. They told me that it will probably be categorized as "ASD - Asperger's Variation" (or some other word with the same meaning as "variation"), that they, and most other doctors, will continue to refer to this condition as Asperger's - even when giving the diagnosis to very young children whose parents may have never heard of AS. The reasoning was that completely removing the name from use would essentially cut people off from access to the extensive and valuable information that exists about Asperger Syndrome - especially if they had never heard of it before. It is my understanding that everyone diagnosed before May will automatically be placed under the new title, since the authorities in charge of finalizing the DSM evidently consider AS to be a form of Autism. I believe they undertook to tighten the diagnostic criteria, most likely to discourage over-diagnosis, but which has the benefit of promoting a more thorough investigation of the person in question. They did volunteer the information that I do, in fact, meet the criteria for Autism Spectrum Disorder in the DSM-V as well as AS in the DSM-IV, which was nice to know - if only to further validate my reasoning. As far as the terminology is concerned, I would encourage everyone who likes to identify as an "aspie" not to worry about the DSM-V. When I've personally witnessed doctors matter-of-factly using the words "aspie" and "Aspergers", I can be confident that these terms aren't going anywhere anytime soon. (But, on the other hand, it does give those who dislike the terms the opportunity not to choose to use them.) Also, I don't think getting an accurate diagnosis is as hard as it seems: the key is finding a doctor who has extensive experience with ASDs, who has been keeping up on the most recent literature, and who actually cares enough about the subject to study it more than the bare minimum.

So, a little bit of information about myself: I was home-schooled from Grade 3 on because of difficulties with being in public school. I graduated with a general equivalency at age 15 after achieving the highest mark in the province for the English 12 exam. I started University at age 16... and...well, I'm still there. My life has consisted of a lot of negative experiences, misunderstandings, and failed attempts - things that could have been avoided had I and my family known about AS. But I've learned so much and I am certainly happy with the person I am today.

I am obviously highly interested in Aspergers and Autism, as well as other neurodevelopmental/psychological topics related to ASD. But in the past, I gravitated towards interests relating to history and literature, interests which I do still maintain. Last year I decided that I was going to build on my Associate of Arts degree and get a Bachelor of Arts in English Literature (if for no other reason than that I was going to read those books anyway, and that I can write a decent paper in a night if I really have to!). When I'm not devouring information, I'm usually playing video games or drawing. I also enjoy listening to music; my favourite genres are Electronica and Alternative Rock, but I greatly enjoy many additional musical genres. My favourite colour is light blue, and my second-favourite is green (so this site is especially pleasing!). I love the numbers 11 and 111. I like to take really long, hot, showers. I love organizing things, especially clothes, and creating systems with them. Fun fact: over the last two years I forced myself to become ambidextrous by writing with my left hand every second page while taking notes in class, because regular note-taking is just too boring.

Currently, I'm awaiting my full diagnostic report, which will be available for me to review in just over a week. The doctor mentioned on Monday that we might need to explore the possibility that I have OCD and/or General Anxiety on top of my AS. This doesn't bother me. Regardless of the outcome, learning more about myself can only be beneficial, not to mention interesting. Undoubtedly, I am feeling in the best place in life that I have ever been. Regardless of how bad things have been for me in the past, I can now fully accept myself and come to terms with all that has happened in my life - things that ultimately culminated into something wonderful, including the realization I had capacities I didn't think I had. For once, I have somewhere I belong. I feel I can now finally relax and take as long as I need to figure out how to "be myself" while still striving to reach my potential on this planet. I want to thank all of you here on Wrong Planet for already having contributed to my process of self-discovery over these past five months.

I hope I can contribute some value to this forum and that I can learn a few of the countless things still out there to learn from this community. I look forward to discussing with you on a wide range of topics.

Feel free to ask me about anything I've said, or something else~



redrobin62
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08 Feb 2013, 2:41 am

Oh, Margie...look! Another one! You're actually a pretty good writer. That's refreshing and most welcome to me. My goodness! The way people malign the English language here brings me closer to a stroke!



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08 Feb 2013, 7:03 am

Hi. Welcome to WrongPlanet (even though i'm not a 'big name' on here, so probably don't deserve to welcome you). :) I like your username.
Really glad that you have recieved your diagnosis and feel that it fits you. You are eloquent in your writing and I really enjoyed reading your introduction, it is quite different from a lot of forum introductions.
ASD has become a sort of 'obsessive interest' of mine, aswell. I'm actually studying a course with the Open University called 'Understanding the Autism Spectrum'. You might like it, but then you are already studying...

Anyway, i'll shut up now. Have a nice day. :)



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08 Feb 2013, 1:26 pm

Once you come around the forums long enough, you begin to see the differences in the writing style of AS/NT.

And ASD = Autism Spectrum Disorder.

WELCOME TO PLUTO!


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EverythingShimmers
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08 Feb 2013, 3:13 pm

Oh geez, you guys are making me feel like I've come across as somewhat of an elitist... But thank you for appreciating my writing skills/ style. It's nice to realize you have an ability that others can appreciate.

LookingLost, of course you deserve to welcome me! Don't be intimidated by me, I'm just a girl who has her own combination of qualities just like everyone else here. I've had a very low self-esteem that's only been recovering this year. I just hope I don't overcompensate because I've found a place where people are actually interested in the things I have to talk about.

I would love to take a course on Autism Spectrum. I find the main benefit for taking a course in anything is that fact that you get to learn alongside other people - especially when those other people are equally interested in the course. If my university ever has an ASD course, I'm going to take it!



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08 Feb 2013, 4:21 pm

EverythingShimmers wrote:
Oh geez, you guys are making me feel like I've come across as somewhat of an elitist... But thank you for appreciating my writing skills/ style. It's nice to realize you have an ability that others can appreciate.

LookingLost, of course you deserve to welcome me! Don't be intimidated by me, I'm just a girl who has her own combination of qualities just like everyone else here. I've had a very low self-esteem that's only been recovering this year. I just hope I don't overcompensate because I've found a place where people are actually interested in the things I have to talk about.

I would love to take a course on Autism Spectrum. I find the main benefit for taking a course in anything is that fact that you get to learn alongside other people - especially when those other people are equally interested in the course. If my university ever has an ASD course, I'm going to take it!


I think that's what people call a "Special Interest" ;P

Regardless, great to have more people on the site! You look like someone who will end up being well known as the months roll by XD.


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emimeni
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08 Feb 2013, 6:57 pm

Welcome! I am also a young woman on the autism spectrum.


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angelbee
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10 Feb 2013, 5:33 am

Hi I haven't been diagnosed yet but asperger's explains a lot of my life. I'm 27 and no one understands me. I'm terrible with computers or technology for that matter, but I've been told all aspie's are good at technology. Is that true? because I'm good at crocheting and that's not entirely aspie. Not sure what I mean but... I'm just confused and get distracted easily. sorry



EverythingShimmers
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10 Feb 2013, 10:05 pm

angelbee, let me assure you that the statement "all aspies are good at technology" is completely false. Generally speaking, us aspies are good at what we are interested in, and thus, what we spend a lot of time focusing on. If crocheting is what you like to do, and what you've spent time learning, and if you do have the other symptoms of Asperger's, then who can tell you that your activity of choice is any less aspie?

I believe it is a common misconception that people with Asperger's are usually good with technology. In fact, the opposite is probably true in many cases. I know that, when it comes to the subject of math, aspies tend to be average to below average - and better instead in the other subjects. When I went in for my assessment, they revealed afterwards that they had been looking for a specific cognitive pattern - that mathematical (maybe spacial too?) processing was significantly worse than the language-based processing (I'm eagerly awaiting the report for details on this stuff). The opposite pattern is generally seen in classic autism. I don't know why this is, because, apart from the difference in the age of speech acquisition, it seems to be one of the only differences between Asperger's and autism. (And, indeed, some aspies are especially fascinated by math!)

Now, the connection between math and technology is unclear for sure. Undoubtedly, one need not be a math buff to love building computers or to be especially interested in technology. But, in deciding whether a person has Asperger's or not, the subject of special interests refers almost solely on the intensity, focus, and repetition of the interest - NOT on what the particular interest is. I've heard that many aspies are good self-learners, and, from what I've noted, seem to appreciate independence and freedom. This would probably mean that a lot of us like to be able to take care of our own computer issues and will be more likely to take the time to properly research and learn.

However, add family background and gender roles, as well as other various socializing factors, and you'll see a lot of individual variation. I am average at best with computers and technology. However, I would say that, for a female, my INTEREST in technology is slightly above average. Remember, this is just general interest, not skill. I like knowing what new stuff is out there, I have a couple techy gadgets, and I know the very basics on setting them up and using them - but I really only learn if I decide I need to and there isn't someone else to do it for me. I am definitely not the person you should ask to fix your computer problems.

I hope this helps.



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11 Feb 2013, 4:45 pm

Hm...

You seem to be posting here a fair amount, but it seems you have an abysmally small amount of posts elsewhere.

Why is that?


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EverythingShimmers
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12 Feb 2013, 7:11 pm

Zodai, I'm sorry. It's... well... because:

1. I'm trying to pace myself and start small - this is my first time on a forum. Give me a chance to settle in?

2. I have many responsibilities, most of which I neglected profoundly leading up to last week's appointment. I certainly don't want this semester to end up like last semester.... this time I actually want to work on my homework before the due dates...

3. I'm trying to figure out some sort of system for posting, how much I should, and where.

(If anyone is really going to keep tabs on me, then they should know that I probably won't post much on weekends either - I only really use a tablet device on most weekends - and it's not very easy to type big things on it. FYI, this was a long weekend for me.)



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12 Feb 2013, 8:16 pm

EverythingShimmers wrote:
Zodai, I'm sorry. It's... well... because:

1. I'm trying to pace myself and start small - this is my first time on a forum. Give me a chance to settle in?

2. I have many responsibilities, most of which I neglected profoundly leading up to last week's appointment. I certainly don't want this semester to end up like last semester.... this time I actually want to work on my homework before the due dates...

3. I'm trying to figure out some sort of system for posting, how much I should, and where.

(If anyone is really going to keep tabs on me, then they should know that I probably won't post much on weekends either - I only really use a tablet device on most weekends - and it's not very easy to type big things on it. FYI, this was a long weekend for me.)


Ah, so just generally not sure where to begin?

Maybe you could just hop into the General Autism Discussion forum, and hop into any discussions that interest you.

It's a good place to start, especially if it's your first forum ;P

Oh, and there's also The Clean Chatroom in the random discussion forum.


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BornThisWay
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12 Feb 2013, 11:21 pm

EverythingShimmers,
What a lovely and lucid introduction! Although, at 61 I am considerably older than you, I too, have just discovered my AS condition. It was like having all the pieces of my long and confusing life suddenly 'fall into place' and make sense. I know I'm definitely on the spectrum; that was confirmed by a close friend who is also a retired psychiatrist. He kindly diagnosed me rather informally (not in an office setting) after reviewing my online testing data and on the basis of having known me for a long time - Autism is not his specialty, but since I definitely would have been diagnosed on the DSM IV criteria from my childhood and adolescent history, he said that I could consider myself an Aspergirl, and a lucky one at that - one who has processed AS out of the disorder category and into it being a condition. He also said that there was little point in getting a formal diagnosis in my medical records, since I have obviously learned to compensate and am living a functional and satisfactory life. He has little faith in what the system has been morphing into with the practice of medicine, and is especially distressed with the methods used to create the DSM V. Enough of such personal digressions.

What I really want to ask about is this: I too have an interest in math in a theoretical sense, but showed little skill in computational performance. When I was in school, I really enjoyed geometry, but would use long and round about methods in my proofs..I vividly remember a teacher saying that yes, my proofs were correct, but strangely elaborate and odd -and therefore, wrong. I also could not 'get' algebra until it was taught to me via it's practical applications. I'm curious about the statement that your diagnosticians were searching for specific cognitive patterns. Could you be more specific on this? I'm quite good with spatial and visual things, and I also think I have a small measure of linguistic skill. Were they saying that these two don't usually 'go together' in AS?[b]



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13 Feb 2013, 6:08 am

BornThisWay, I like hearing stories like yours. You're lucky you have a friend like that, your conversations together must be very interesting indeed. I think you should change your diagnosis section on your profile to say "Have Aspergers", because I think your friend's opinion is valid.

I am quite curious about the methods used to create the DSM, and the way things are going. I don't know much about how things are done, and by whom. Feel free to tell me your friend's opinion if you like because I'd like to know.

Ok, so your question:

I am very unclear on this aspect of the diagnosis. I think a lot of what they were saying was relating to the differences between Asperger's and classic autism. Classic autism = childhood speech delay and can incorporate a lower IQ score, Asperger's = no childhood speech delay and usually average to high IQ. They also said in classic autism the person usually scores well in areas of the IQ test that focus on math and numbers, but less well in those that focus on areas of language. With Asperger's the person usually does really well in areas of language and general knowledge, but less well in the maths and numbers.

To be honest, I'm very reluctant to have people take this as fact right now. My diagnosticians seemed to be on the side that Asperger Syndrome is it's own condition, separate from autism and with it's own set of skills and deficits. While I generally agree, I personally think the conditions are really the same thing, but have a main difference of "what the brain starts learning first". My theory is sort of that the speech delay (or lack thereof) may kick-start a lifelong mental preference for two distinct types of autistic reasoning. Again, I don't know where spacial stuff fits in. I tend to think I'm ok at spacial and especially visual reasoning - tending to notice and create patterns and such (maybe I just like them). I didn't get to see my full report yet, and what I'm most curious about is the section by section breakdown of my performance on the IQ portion - if they'll include it. I've heard that many people with Asperger's and high-functioning autism are quite indistinguishable, so this "cognitive pattern" thing has me confused as well. If you want to take the time, the Wikipedia page for nonverbal learning disorder actually says a lot of what I think the diagnosticians were getting at. The page does state that "most people with Asperger Syndrome fit the criteria for NLD."

Let me tell you my own "math vs. other subjects" story and see if you can relate to any of it.

1. I learned to speak very early (younger than age 2) but began with just one made-up word which I used for everything, and moving into using song for everything - however I was able to use full spoken sentences by age 2. I learned to read very early, first by memorizing my favourite children's book - which enumerated different types of airplanes and other flying machines (age 2). And then throughout childhood I was reading everything I could - including adult magazines and newspapers, history books, classic literature, etc - often not necessarily comprehending the subject matter or all of the words, but liking to use them as much as possible in daily speech. I guess I could say I was hyperlexic.

2. In public elementary school, I was always much-worse-than-average in the subject of math. I easily forgot mathematical skills, had trouble staying focused on them, and had great difficulties with things like learning to tell the time, for instance - when the rest of my class had little problem with them. While doing mathematical exercises in class, I would become distracted by my synesthesia, which I have had to some degree all my life and which is common in people with Asperger's. Not only did each number have a corresponding colour, but it also had a gender identity and a unique personality. When I would write a math problem that started to veer off the edge of the "answer line", I would imagine the numbers were falling off a cliff and had to hold on to each other to survive. Maybe the number standing at the very edge was a "bad guy" and had pushed the others off.. etc. Add to this my current obsession with dogs, and my workbook margins were filled with sketches of dogs and various dog-related objects. (Need I mention that my grades in art were always A+?) By grade two, I had fallen quite badly behind. The teacher had sort of given up on me and was letting me slip. This was one of the various reasons my mom leaned in favour of homeschooling for Grade 3 - in which she could give me one-on-one instruction with a lot of breaks, etc.

3. A few years ago my mom came across some stuff on the internet about a condition called dyscalculia which she proceeded to diagnose childhood-me with. It does indeed describe me quite well - but I was stubbornly convinced that I was bad at math simply because it didn't interest me and there were very few ways for me to tie it into the subjects that did interest me. However, I'm willing to admit that dyscalculia does describe it, and, of course, nonverbal learning disorder fits me very well.

4. However, in both public elementary school and homeschool, my skills in language (French) and science were average-to-good, and my skills in social science (History) and English were way above-average. This pattern of "behind peers in math but way beyond them in language" continued and increased throughout my school experience. Even if I had wanted to go back to public school for later grades it would have been near-impossible due to my (2-3 years advanced) giftedness in English and History but my abysmal delay in math. Thankfully, with the help of a more coherent math program my mom found from the US, I was able to move into higher mathematical reasoning fairly quickly and catch up to the level I should have been enough to still graduate early. (Let it be stated that I lost no time in promptly forgetting most of what I had learned once I no longer needed it.) After graduation I did go and do an online Physics 11, and I must say that I did fairly well and felt better about myself. I also did and enjoyed online Chemistry 11, particularly the organic chemistry portion. Like you, I do better when the math (or science) can be related in practical applications, or can at least be explained visually. I think I also tend to use very roundabout and "odd" ways of solving geometry problems.

5. I have had to do only one math course so far in university - statistics - which I hated and did terribly in until the very end when, out of desperation, I pushed my way into a study group and learned everything within a few days - again, most of it was promptly forgotten. (At least I didn't forget everything, as the ability to understand the inner workings of graphs and charts and to discern statistical fallacies has been valuable to me ever since.)

So here I am. An English Major.



Zodai
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13 Feb 2013, 1:36 pm

Ah; so you're an English major! That seems to explain the large amount of detail in your posts.

Are you talking book-writing, as myself (Or at least when I graduate high school) or English in-general?


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BornThisWay
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13 Feb 2013, 10:22 pm

Oh thank you for your reply! And thanks for reminding me about my profile stat...I guess I really should change it.
Hmmm. where to start with the formation of the DSM V? 'Dr. --' simply said that he feels it is functionally bogus, because the board which has created it is self appointed, non transparent and credentialed by governing boards and allied healthcare institutions: among which are big pharma and the for profit hospitals. These groups have vested interests in the whole setup, which are focused on using healthcare as a vehicle/product for creating the most efficient way of reaping a profit, while avoiding getting sued for malfeasance and or malpractice. Unlike the DSM IV revisions, the governing board for the DSM V did not solicit peer reviews of diagnostic criteria or structural analyses for the categorization of various conditions, but have simply pronounced various diagnostic categories that are going to be required for treatment and care. Much of the newly formed criteria are not there so that one can determine the true state of a patient, but simply so one can categorize a client, in order for the 'healthcare corporation' to bill and go on to the next one. Long diagnostic discussions with the client are actively discouraged. A physician is now required to simultaneously interview and observe according to the template of the computer program, diagnose and prescribe treatment - all in about 15 minutes. Of course, since the DSM system creates the gold standard of care, it also determines the parameters of legal culpability...it all makes for a degenerated self reflective loop, and has very little to do with the ultimate health of an individual. There is little if any opportunity for a therapeutic relationship to be created - counseling is now the purview of PA's, social workers, and various other 'healthcare providers'...who are great, but might not have the training or experience of an MD. Also HIPAA rules make it very difficult to engage in cross communication amongst providers.

here's an article I found online that illustrates part of what he said.
http://www.psychologytoday.com/blog/sid ... tic-manual

My daughter is a registered nurse and she also has confirmed the limited options and layouts of the computerized 'paperwork'. Many of these forms that doctors or 'care providers' are now required to fill out no longer have a place for any individualized observations or case specific notes, but consist purely of various category boxes to be ticked off. Or if there is a place, it's the size of a tweet. The point is that medical diagnosis and treatment is being driven by the financial needs of 'managed care' and the opportunity to dispense meds; it has less to do with the actual physical, emotional or mental health of a person, and more to do with the bottom line. Outcomes are far more chancy than the system wants to admit, and the situation will only continue to deteriorate. In the end, when the client is too costly, care is withheld by fiat of the system. Poor prognosis for an improvement of the quality of life is then given as the reason, and finally, hospice or other palliative care recommended.

Anyway, he told me that the new DSM V requirements are one of the things that have pushed him into considering permanent and total retirement; the new 'system' is creating a situation where doctors no longer practice the art of medicine, but are reduced to being an employee, whose primary function is to make money for the investors of various corporate bodies. Oddly enough, he said that working for the State Hospitals or prisons can actually be better, because in those places, the driver of care is not profit, but avoiding lawsuits - so he gets to spend more time with the patient and do more in depth work.

He also admits that now he is in his seventies and his own energies are reduced, he no longer wants to spend so much time dealing with all the above stuff. He's still licensed and board certified, but he only takes locum tenens jobs now and again. I don't know when he'll quit, he says he likes to read the journals and 'keep up' with the cme's, but it's sort of sad. I think he just talked to me about my maybe having AS because it was 'more like the old days and he didn't need to be rushed or anything...it was more like an intellectual discussion. Because I had brought up the subject, I found out that he actually got to train with and observe Kanner back in the 60's at Johns Hopkins when he was in some sort of post doc fellowship. However, the children he remembers Kanner working with were not Aspergian, but severely non-verbal autists.

We've had some very interesting conversations.