Where to Turn for a Diagnosis???

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I just called my psychiatrist to let him know that I've been learning something about Asperger's (at my ex-wife's suggestion), that I've taken the online tests and scored quite (very?) high, and that I'm wondering what to do next. He was totally dumbfounded. He asked me if I might be confused and thinking about some other disorder.

We worked through it, and he said that he'd be willing to talk to me about it. But, the fact is that he's not a specialist and he knows me as a "depression and anxiety patient" and really nothing else. Without knowing anything about the AQ test or the Aspie quiz, he said that he was highly suspect of them -- that legitimate tests are highly proprietary and not generally available on the Internet. He also said that AS is profoundly difficult to diagnose in adults. He was really incredulous of the whole thing.

Maybe he has some special insight as a psychiatrist and knows me considerably better than I think he does. We've met fewer than 15 times over the course of three years, though. And he's certainly never asked me anything remotely like what I'm being asked on these tests. The bottom line is this: being stopped by a stranger on the street and asked what time it is sends me into a complete tailspin. Just one example of thousands, and I want someone to take that seriously, 'cause it's ruined the first 38 years of my life. Am I overreaching to hope for maybe 38 more years of life with at least some relief from this? I'm tired of living in my own little (read tiny) world obsessing over my "hobbies." Yeah, right -- hobbies. Sorry, but polishing things and counting stuff are not hobbies

Forget that for now -- that's not really the question. The question really is, should I at least start with him, since he's a psychiatrist who knows me? I hate the fact that he's probably already made up his mind about this. Listen, I don't particularly want AS (no offense, anyone); but, I do want the truth. I just don't know who to see in order to get it. And I've got to be honest: I genuinely feel like I'm getting a little closer to the truth, here, and it's damn comforting for some reason -- even if it's not exactly what everyone would hope for.

Thanks...

Clearly this guy knows little or nothing about AS. Anything he says or any opinions he gives need to be considered with that in mind.

Many Psychs, if presented with those symptoms will simply attempt to treat them without being alert enough to spot an unusual cause, such as AS, especially when dealing with adults. Now he has to try to justify that failure (if that's what it turns out to be), and one way is to claim you don't/can't have AS and plough on regardless with his original diagnosis. Psychs also tend to diagnose within their area of experience, obviously. If they don't know much about it, amazingly, you can't have it. I'm sure you can see how that dynamic works.

If you'd gone in from day one talking about depression and anxiety and saying that you suspected you had AS (I know you didn't know about it back then but, hypothetically), then you'd probably already have your AS diagnosis by now, even if he had to go away and do some research before it happened. Psychs, in my experience, are incredibly easily lead at the beginning. Mention a suspicion or belief regarding your condition from the outset and you may get one diagnosis, don't mention it and naively rely totally on their insight, and you might well get another totally different diagnosis from which they may later be very reluctant to budge. It can be as haphazard as that.



Sounds like he's already naysaying something which he knows absolutely nothing about. Not a particularly good sign.



Hmm. How likely do you think that is, really? You know you best. If your conclusion, after doing exhaustive research and all test available to you, is that you likely have AS, then don't let unwarranted faith in a Psych with little to no experience of AS in adults stand in your way.



Maybe you could start with him, but I wouldn't hesitate to drop him like a hot brick if you feel he's being unreasonable or uncooperative, or simply trying to uphold his initial opinion because it's embarrassing/inconvenient to have the 'patient' spot something he didn't or be informed about something he isn't.



That's understandable. Good luck in getting to the bottom of things.

Last edited by Maolcolm on 01 Nov 2010, 8:39 pm, edited 1 time in total.

IMHO, talk to someone who knows about ASC's, not someone who is guessing.

His reaction to the AQ test makes it sound like he thinks it's some "OK Cupid" type online quiz. Maybe mention that it was developed by Dr. Simon Baron-Cohen -- and if he doesn't know who that is then you really need to talk to someone who knows more.

My personal philosophy with doctors/etc. is that since I'll pay for their mistakes with years, or even decades, of my life, and they, at worst, will pay by losing an insignificant amount of income, the onus is on me to trust my judgment over theirs. But that's just me.

I'd go to a specialist. I went to someone who wasn't because it was way less expensive than the specialist and got a goofy evaluation where she said I had ASD traits but wouldn't make a diagnosis because of me being married. It was a waste of my money. I'm back at square one and saving my $$ to eventually go see the person I should've seen in the first place. In the meantime I have no help for my problems.

What's wrong with me? I'm easily influenced, take things at face value, accept situations for what they appear to be (which is almost always mistaken), and completely trust (and simultaneously dislike) male authority figures. At the same time that I've been ranting about how both my therapist and psychiatrist have missed this all these years, here I am eating right out of his hand again. Of course I "see how that dynamic works" -- NOW THAT YOU'VE SHOWN ME SOMETHING SO OBVIOUS!



See, this is what I fear. I'm also naive enough to think that the truth is just sort of waiting out there in some neatly tied-up package for me to discover. I don't want to lead anyone to anything. I want someone to lead me to an answer, a solution. I am truly not the type of person to go trolling around the Internet trying to find rare and exotic diseases to have. Hell, I so rarely go to doctors that I don't even have a primary care doc. But, I think he thinks I've just dreamed all of this up in a little fit of hypochondria.



Not very. A little sarcasm on my part, maybe.



I just don't have the confidence in myself that I wish I had. I hope I can get to a point where I understand this so well that NO ONE could convince me otherwise. And I'm learning a lot pretty quickly, I think -- having been at this for like four days or something. One day over this past weekend, I had what I'm being to think of as an "AS episode." I felt "that feeling." I drew on everything I had learned up to that point and immediately recognized the fact that there was just too much going on around me for me to handle comfortably. Whereas last weekend, I would have gone into a sort of fight or flight mode, this weekend I started mentally deconstructing my environment -- taking each element in turn and processing it slowly and methodically -- all with FAR better results. I don't know. We have this sort of amusing saying in A.A.: if the solution is working, then you probably have the problem. Actually, we have books full of amusing sayings



Thanks a lot. Your post made me feel a lot better, stronger, and much more hopeful.

Most shrinks are useless for Asperger's. They don't know and don't want to know anything about it. You seem to like him, so give him a try, but don't expect much. You'll get more useful information in places like WrongPlanet or AspiesForFreedom, along with more emotional support and validation.

I saw a guy who claimed to be a "specialist," and even he was utterly clueless about adults. He didn't bother to discuss anything, just gave me a handful of childish tests. As in: "Is this supposed to be hard?" I've been struggling and faking it for a half-century and of course I've learned a few tricks. So now I need to play dumb just for the amusement of this fool?

You're the only one in there, and the only one who can really figure it out. At the level of an intelligent adult, no one but an Aspie has the kind of time it would take to grasp the concept. It's too far over their heads.

Also, for most of us, there's no real need for a formal diagnosis, and plenty of drawbacks, unless you're applying for services. Even then, if a diagnosis with less stigma will get you the services you need, that might be better. Give yourself A LOT of time to think it through, and ask around WP before you disclose to anyone important.

They talk about confidentially, but I don't really buy it. Once that kind of information is out there, I don't believe you have as much control as they pretend you do.

While you're at it, get comfortable in a forum like this and hang out for a while.

i think you would be better off leaving the psychiatrist and therapist out of this loop, and seeking out a psychologist, neurologist, or neuropsychologist to do the autism spectrum disorder evaluation. a psychiatrist is a medical doctor and will treat medically, while a psychologist has more training in personality assessment and does not treat with pharmacological means. you need someone who is trained and preferably experienced in diagnosing neurological disorders. not all psychologists even do these assessments, and of those that do, even fewer do them for adults.

your best bet is to look up the diagnostic criteria (http://www.cdc.gov/ncbddd/autism/hcp-dsm.html) and see if it really fits. if the answer is yes, start calling around and trying to find someone who can do diagnostic evaluations for autism in adults. i dont know that i'd agree that as is "profoundly difficult to diagnose in adults", unless you mean profoundly difficult to find someone qualified to do the diagnosis.

I contacted Autistic Services in Buffalo and got a list of referrals. I'm sure there must be experts in the NYC area. The autism organizations should be able to direct you to qualified people.

That sounds reasonable. I do have a neurologist of sorts. (Whether he's qualified to help me here I don't know.) He put me through all sorts of brain scans about three years ago when I complained of having migraine headaches all my life. It was a little strange: he went at it as though he was trying to prove that I *didn't* get true migraines. After all was said and done (that is, after lots of time and money was wasted), he told me that my scans "are consistent with people who suffer from migraines." Thanks, genius. My mom could have told you that.

But, I'll try. Home is New York City, and it's a big place filled with lots of mental health professionals. There's got to be one out there.



Yeah, I've done that. I'm all over that web page.

Thanks to you and to everyone else who's provided input. It's *extremely* helpful.