The Knowitall Hall of Fame

[Sophist]

The KnowItAll headcount so far is approximately 35.

With MANY more to come no doubt...

[odeon]

It's scary. More and more, I realize how lucky I was to have the "right" people evaluate me...

[Sophist]

Starts looking like a crap shoot, dunnit?

[renaeden]

Last winter I was having a bad time with dpression/overload. I got a note from a therapist to take with me to hospital.
At the hospital,even though they had room, they said they couldn't help me. I wasn't real clear-minded at that time but I can only think that because autism was written on the note, they wouldn't help me because they knew so little about it.

[SomethingElse]

Oh yeah - when phoning around trying to find out where my referral had ended up my mum spoke to a woman who told her that they wouldn't have received it because they only see 'really serious cases like schizophrenia and bad depression' but then proceeded to ask questions about me anyway!

One of the questions was, "Is she shy?" to which my mum replied, "Yes." So she suggested that I might just be chronically shy, when the amount of AS traits I have can't possibly amount to simple shyness. Even my mum got annoyed and started to get an attitude with her (my mum's temper is legendary) because, "She was trying to diagnose you over the phone! How can she f***ing diagnose you over the phone?!"

So, it's not her area, she's never met or spoken to me, she knows nothing about me and only asked a few questins (some of which my mum answered wrong!) and yet she still tried to disprove my case? What a fool.

[Sophist]

Hey all,

in short - I recently sought advice from a counsellor at my University's counselling clinic. I went in hopes that could be directed to a psychologist with whom I could discuss a formal diagnosis of Asperger's. Within minutes the counsellor had discounted my claim that I was identifying very closely with aspie traits - her reasoning was that I had the ability to maintain long term intimate relationships (1-3yrs). After having come across aspie information - and having the proverbial ligtbulb switch on in my head (as so many of you have described) you can imagine how frusterated I must be feeling over all of this. My scores on the AAA, EQ and AQ are extremely suggestive that I do fit the bill. Can those who have received a formal diagnosis please offer some feedback? From what I know it isn't uncharacteristic of aspie's to have a close intimate relationship. I certainly still feel an absolute disconnect from the majority of the world - peers, co-workers, friends, parents etc.

[SomethingElse]

I wonder whether the councellors I spoke to at university would have been so helpful and accepting if I hadn't been able to tell them I'd already been referred? Everyone has been really helpful so I can't really criticize them, but that post did make me wonder.

[Sophist]

I wonder whether the councellors I spoke to at university would have been so helpful and accepting if I hadn't been able to tell them I'd already been referred? Everyone has been really helpful so I can't really criticize them, but that post did make me wonder.

Ideally, they would be nice either way. In reality though, no way to tell.

[SomethingElse]

I figured that due to the stupidty shown I might as well post my 'update' here.

Remember I was meant to be referred to a psychiatrist in order to be referred, because my GP wasn't allowed to refer me? But I ended up seeing a student and a nurse, instead? Both of whom seemed to know nothing about Asperger's and so asked general questions about my mental health instead, seemed to not know why I was there, etc. etc.?

Well, I got the letter back from them yesterday. And despite my telling them that my GP hadn't been allowed to refer me due to funding (although I had told them about the free assessment at Cambridge so maybe that was why) the letter stated that they'd spoken to the team and to the psychiatrist and a decision had been made to contact my GP and request that he refer me if necessary.

So if I had been in any doubt that it was a waste of time seeing those idiots... I'm not in any now.

[Sophist]

I figured that due to the stupidty shown I might as well post my 'update' here.

Remember I was meant to be referred to a psychiatrist in order to be referred, because my GP wasn't allowed to refer me? But I ended up seeing a student and a nurse, instead? Both of whom seemed to know nothing about Asperger's and so asked general questions about my mental health instead, seemed to not know why I was there, etc. etc.?

Well, I got the letter back from them yesterday. And despite my telling them that my GP hadn't been allowed to refer me due to funding (although I had told them about the free assessment at Cambridge so maybe that was why) the letter stated that they'd spoken to the team and to the psychiatrist and a decision had been made to contact my GP and request that he refer me if necessary.

So if I had been in any doubt that it was a waste of time seeing those idiots... I'm not in any now.

Oi vey... what IS it with the medical/psych world? I swear to god it's the crazy people running it!

[anhaga]

When I was 19 years old and making a very ill-fated attempt at getting a university education, I went to a university that happened to have an autism center, with a world-renowned autism 'expert' in it. This was to be my first direct encounter with such an 'expert' and made me realize a lot of things about 'experts' in general.

At that point in time I was speaking intermittently, and using a keyboard intermittently. (I had had intermittent speech problems for some time, and it was known that I could often write when I couldn't talk, but I had only learned I could use a keyboard for it quite recently, and not, I note, from professionals, who never bothered to suggest it.) I stimmed intermittently too, same as now (alternating between lots of movement and near-total rigidity).

Anyway, I went in there, and she told me I had no academic difficulties (I did in fact have many) and that the speech problems were due to anxiety (which they weren't). I told her that I was doing horribly at daily living skills. She told me I belonged on a social skills program.

I had an interpreter there with me because I could not always communicate well. (In fact I now find out that my in-person communication looked a lot worse than I thought it did at the time.) The 'expert' kept trying to throw my interpreter out of the room in the name of 'letting me speak for myself', which often left me totally unable to communicate in language at all.

I let her know that fluorescent lights made it hard for me to function, and that I had trouble tracking more than one person at once in a conversation.

She put me in a bright fluorescent-lit room with two graduate students and insisted that these were not 'real' problems. They proceeded to babble words I could not even understand, while the lights were making me ready to vomit, and I was exceedingly hungry and my stomach was gnawing at me, all at once.

I tried to communicate that I could not understand what was being said to me.

So did my interpreter.

They didn't listen.

I eventually went into a massive meltdown. Screaming, head-banging, crying, flailing, everything.

The autism 'expert' apparently did not believe in sensory overload as far as I could tell. (I later read a book of hers and it confirmed she had no clue why we do the things we do.)

She acted shocked that I was reacting in this way, even though she'd had a ton of warning.

My interpreter got me out of the room and then went back to try to explain to them. I don't know what happened but I remember there were raised, tense voices. I couldn't understand what they were saying.

They decided to all walk me down to the counseling department.

Where I was informed that people like me do not belong at universities.

(This particular university is so bad on disability issues that the National Disabled Students Union was formed by a disgruntled disabled student there.)

They all sat around in a circle trying to talk to me and I still couldn't understand most of what they were saying, the only part I really picked up on was that I didn't belong at a university. (This was drilled into me over and over while I was there, from many directions, all in the administration.)

This all happened over the course of several visits to her, not one. It really made me question what exactly makes someone an autism 'expert'. It certainly isn't understanding autism, from my experience with her and now others. It seems that the ability to manipulate autistic people is a possible key to experthood, and she could certainly do that. Having a degree helps. Memorizing the various ways that autistic people behave without understanding why we do so helps. I have noticed that even having been in proximity to autistic people in any capacity whatsoever seems to confer other kinds of 'expert' status on people.

But it worried me that such a well-known expert has no idea about what being autistic means, no idea why we function the way we do, she just knows it's bad and that she knows how to change it sometimes.

That by the way is why I am so mistrustful of endless lists of so-called 'symptoms' that don't connect them in any meaningful way. I know that being able to do that is seen as a form of expertise in the autism world, and that there is a serious dearth of experts who actually understand autism, rather than can memorize traits. So I worry when people emulate that.

And by the way the "you don't belong at a university" people... yeah I didn't work out at that university, yeah I never made it in college, etc. But I feel like I kind of have to shove it in their face that I've now been asked by people at MIT to be a colleague working at their university essentially. I mean, going from "you don't belong places like this" to "we'll pay your transportation expenses to get you places like this so you can help us figure things out" is rather amusing.

[Sophist]

Yes, expert seems to be thrown round too easily. Especially when it's used so broadly since there are so many areas of behavior, neurology, etc., to be expert in.

My neurologist friend, Dr. Casanova, I have no doubt is considered an expert in autism. Yet I suspect he's worked with more DEAD autistics than live ones (postmortem dissections I mean). Not to criticize him; he's certainly got a lot of knowledge about certain aspects of the brain. But I doubt he'd be any better with working with an autistic person and making them comfortable any more than the next person. I mean, that's not his field of expertise.

I do hope that now and in future more and more auties are included in the analysis and/or lead autism research.

And I can understand your apprehension with symptom lists. In the wrong hands they can be a potentially dangerous tool. Categorizing can be both a valuable tool and a harmful one.

Frankly, I don't know if there's a good way to actually understand autism short of knowing, being with, and interacting with autistics. I think any sort of text, when held up alone, is going to fall short It's very difficult to accurately generalize an entire group of people whatever their similarities.

[Affe]

Back in June, I had a sort of meltdown while trying to write a simple four-page paper. Stress level was high (I'm on probation and must get an A in every class or face expulsion), and I was personally invested in the topic. Nearing the deadline, I got really obsessive and couldn't stop researching/note-taking. I had 20 pages of single-spaced word-processed notes for a double-spaced 4-page paper, and I still kept researching and taking notes.

I *knew* I was doing this, but felt compelled to continue, even though I knew I wouldn't make the deadline if I did so. It was like looking in on myself through a one-way mirror, without being able to go into the room and tap myself on the shoulder. Neurological feedback loop. Never happened before. I was 32. Scary.

Unable to email the prof (too ashamed), and with my regular therapist out of town, I went to the disability office to talk [cry] with the director about it. He suggested that I might have a form of "high functioning autism," which I had never heard of. I was skeptical--after all, how could I have made it to grad school if I was autistic? He said there are plenty of people with "Asperger's" in grad school. I considered what he said, did some cursory research online, and decided that since I hadn't t had a single thing that consumed my attention for years (I'm dx'd ADD), and wasn't into numbers/trains/star trek , I couldn't be aspie.

Then in August, I read the NYT article called "What Autistic Girls Are Made Of." Little light bulb. Registered on WP. Got depressed. Forgot about AS.

Found a new therapist (old one on leave of absence) in September. During our second session, I told her about how I obsess with my schoolwork, about living in relative isolation, about my 2 cats and 2 dogs, etc. With no prompting from me, she says, "it sounds like you might have Asperger's Syndrome." Oh damn. And Yay.

For the next week (or two), I became obsessed with the topic. Reading everything I could get my hands on, staying up 'til dawn on WP, etc. Realized that I'm probably very likely aspie. Every day I learn more and more that points in that direction. Much moreso than ADD alone would explain.

Talked with my psych about it on Wednesday for the first time. He's the one who's been Rx'ing for me for the past 3 years (Adderall, Effexor, Ambien, Halcyon, Clonapin, Strattera--though not all of these right now). He says, "I wouldn't peg you as having Aspergers... What makes you think that?"

Aw f***, now I have to tell HIM what the characteristics of AS are, and that puts me in the position of "proving" myself to him, which I didn't want to do, because it's a no-win situation. But I knee-jerkedly do anyway, telling him about my paralyzing obsessiveness, social isolation, AS manifesting itself differently in women and that's why I can do things like make eye contact (kind of) and talk to strangers, and...but then my brain kind of goes blank. I'm about to continue when he says, "how do you know it's not just ADD with OCD tendencies?" "I don't know," I reply. But the AS description fits me more completely than the ADD dx alone does. He asks why. I mention impulsiveness without hyperactivity (the two are usually grouped together in the "hyperactive" subtype, yet I'm "inattentive" subtype) and the tendency to "hyperfocus," even when off meds. He says "but those are not unusual with ADD."

I'm at a bit of a loss. There are SO many things that resonate for me about AS, but I can't seem to dredge them all up right now. So instead I hand him my aspie quiz printout. "I know it's just an internet test and they don't mean anything, but for whatever it's worth..." He looks at it for 5 seconds and hands it back. "Well, has there been any history of autism in your family?"

[At least he's humoring me, so there's that...]

"Not that I know of. I mean, we're all pretty smart. And if I'm 33 and just now figuring this out, then there's a big chance that others are undiagnosed as well. AS didn't even show up in the DSM until 1994..." I don't think he liked me mentioning the DSM. He asks, "Well is there any history of mental illness?"

damn! I forgot to mention my aunt who was institutionalized for a few years. Oh well.

"My mom's pretty crazy." "Like how? Is she diagnosed with anything?" "I dunno; they say she has 'PTSD' and depression and whatever else. She's not good at holding down jobs and has been divorced five times."

I could go on, but you get the idea. Our conversation continued like this--with him kind of prodding me to "prove my case," and me desperately fishing for answers. I didn't tell him that the reason I moved from NYC was because I thought I was going to go crazy from sensory overload. Or that while other kids in preschool played together during recess, I fingerpainted by myself in a corner. Or that one of the most stressful days of the term is the first, when we re-arrange the studio desks (very loud) and pick a number out of a hat to get our permanent desk for the term--where we sit for a good 50-60 hours of our week (potentially on the aisle, under a broken fluorescent, with our back to the door, next to a loudmouth, squished by the person behind you, etc.). I usually flip out, making a good impression on my classmates the first day.

To his credit (sort of), he did ask what an AS Dx would do for me, to which I was unable to respond. DS at my U has been pretty pathetic, even for ADHD. So it's not as though they'd be of any more use just because the Dx changes.

Long long post. Probably rambling. Hope you skimmed at most. Bedtime.

[beware_the_sluagh]

Interesting post Affe. I might even read it a second time, so no skimming, no

I didn't tell him that the reason I moved from NYC was because I thought I was going to go crazy from sensory overload. Or that while other kids in preschool played together during recess, I fingerpainted by myself in a corner. Or that one of the most stressful days of the term is the first.....

Why didn't you tell him these things? I ask because I sort of understand, but I'm not quite sure.
For some reason, I never tell people the most important things. In your case, I think these things you didn't tell him are the key things that make the difference in diagnosis. I tend to want people to ask. I never say the thing that matters most... So I wonder why YOU didn't say them. Is it the same reason somehow? (And if it is, and you know the reason, will you not say it, because it is the most important?)

[SomethingElse]

I find that in any situation where I'm asked to explain AS, even in terms of myself, I struggle. When thinking about it under no pressure then I 'know' it all far better than if someone adds pressure. Especially in cases where someone else might not have observed those behaviours.