Was Officially Diagnosed Yesterday...

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I had an appointment with Dr. Lynda Geller at the Asperger Center for Education and Training yesterday afternoon. (She was one of two doctors in New York City recommended in a book on AS that I recently read. She was also much less expensive than most of my alternatives.) Before my appointment, she had me fill out 30 or 40 pages of questionnaires, medical and developmental history, essay questions, etc. So, I think she had a pretty good idea of who was going to show up. It probably didn’t help my cause when she caught me investigating her office sprinkler system in the waiting room. The process was interesting; but, honestly, it had the feeling of being just a formality – if that makes sense? More like a “confirmation” for her than a totally open “exploration.” I guess that’s what the paperwork was for. When she gets a patient who scores in the low 40s on the AQ and in the mid-teens on the EQ, she probably can’t help but form a hypothesis.

She asked me about three hours worth of questions -- all the usual stuff you'd expect – putting me mentally into situations and asking for my reactions. She also seemed interested in the possibility of any Aspie "superpowers," and I'm afraid that I largely disappointed her. So, we're talking and talking ... and finally after a few hours I said: "Am I totally dense? Did you diagnose me with AS at some point along the way, and I just completely missed it?" She looked at me like, where have you been for the last three hours??? Typical. This was important to me, though, and I wanted to hear those exact words, I guess. She said, "You have nearly every single possible characteristic. And almost no counter-indicators. Not even a close call." Also, executive functioning is basically non-functioning. And OCD made a strong showing as well. It was interesting: she was clearly much more concerned with the executive function and OCD stuff than she was with giving me the AS label and a gold star for my efforts. She thinks the way those specific things are manifesting is having a much more significant impact on my day-to-day life than is some nebulous AS concept.

She did confirm that both my psychiatrist and therapist (who said “no way” to AS) should have their licenses revoked. For them to have been seeing me for three years and to have totally missed this -- and then to have decided against it when it came up -- was unbelievable, she said. I presented all of the arguments why those two concluded I didn't have AS. She said, "no, it's exactly the opposite. They were pretty much dead wrong. They were diagnosing you based on some caricatured movie version of AS." It's a different experience, I guess, going to someone who has seen a few (or a few thousand) cases of AS in her office. As opposed to ... I don't know ... none?

One thing was completely unanticipated: the diagnosis was actually pretty traumatic. I thought I’d just waltz out of there having confirmation of what I knew all along. Instead, I barely slept last night, thinking, “OK, what now?”

Awww, hugs. The entire process sounds kind of traumatic; it seems counter-intuitive to subject Aspies to several hours of in-depth personal questions as well as 40 pages of essays about themselves. I'd imagine a lot of people would have difficulty with that alone.

I've been mis-diagnosed so much that I actually have around 6 wildly different and contradictory mental illnesses as my formal diagnosis given by practicing, licensed psychiatrists/psychologists. And each one of them claims that all the previous ones should have their licenses revoked for gross incompetence. Because of this I've learned that I know myself best and to approach any diagnosis as just a possible starting point for self-education.

Nothing about you has changed because someone said they agreed with your perception of having Aspergers. You're exactly the same as you were on the previous day. It sounds more like a mental shock than anything else; but after hours of being interrogated I'd probably feel shocked no matter what they said to me in conclusion.

I've seen the same psychiatrist for almost a year now. I was the one suggesting that I might have Asperger's in the very beginning the treatment, but he couldn't see any signs of it. Then, just last week, he suggested to me that I might have Asperger's afterall (but not doing a proper diagnosis). Even if I was the one who originally had the idea, even if he says it's an Aperger's "light", I felt really, really low when I walked out of his office. I went home and cried and cried and cried, and haven't been able to do any work lately (I'm a mathematician). After discussing my "diagnosis" with a couple of my closest friends, reading all kinds of things (good and bad) on the internet, I now feel much more comfortable possibly having Asperger's.

So, it was really hard for me too the first week, but if you're any similar to me, it will lighten up.

Cheers.

I'm personally inclined to agree with her that the executive dysfunction and OCD are more of a concern than the AS, as the former are probably the areas that interfere(?) with your quality of life.

I empathize with your feelings about the diagnosis. When I was originally diagnosed 7 years ago, I had very mixed feelings about it - in fact, I still do, even after a second opinion confirming the AS. I'm glad to know "why" my life has been apparently more difficult than most, but since there's no "solution" (and I hate not being able to find solutions ), sometimes I feel at a loss as to the purpose of getting it.

I try to remind myself that I sought diagnosis for greater self understanding. I try to use that understanding to develop better coping strategies where I can, and to be a bit kinder to myself when I have trouble coping.

The only advice I can offer is: Be kind to yourself.

I'm sorry the process was a little painful, but congratulations on getting there

Shadi

It feels weird congratulating someone for a diagnosis. But what the heck. Congratulations.

When I think about it, it makes sense that the process would be somewhat traumatic. If I'd spent three hours being interrogated on the way I behave, process information and see the world, I think I'd want to crawl into a cave and hide there for a while.
I can also imagine that it would feel strange and somewhat disconcerting to feel like you're being scrutinized under a microscope, especially when the focus is on traits you've probably expended a lot of energy trying to mask over the years.
As for "What now?" I can't answer that, as I haven't been through the diagnostic process. It's possible that your life won't wind up changing very much, other than the fact that now you have confirmation of what you've known all this time. As I said before, you are still the same person you were before you had the AS diagnosis.
That said, one of my many reasons for not seeking a diagnosis, is that I don't know how many resources are really available for adults with AS, which makes me question how useful it would be for me to seek a diagnosis. It probably would have been helpful if Dr. Geller had recommended something in the way of a follow-up. Could you call or e-mail her for guidance?
I hope the initial shock wears off soon.
Take care. Whenever you want to talk, my inbox is always open.

You must have this feeling of relief right now. You know yourself that you're on the spectrum. Things will ger easier with time. I try to refrain from congratulating people when they first find out, because everybody feels differently when they hear the news.

I was dx'd a few weeks ago completely by surprise to me (I went in for grief counselling not AS) I still am not sure how to feel about it but it is better now than it was then. Time will make the label feel more natural and more okay. You are the same person today that you were yesterday (before the label)

RainingRoses,

I was kind of diagnosed 2 years ago and officially diagnosed a year ago. I still feel like I'm in a "what now?" stage.

I think the biggest change over the past two years was becoming more "comfortable in my own skim." I'm more conformable actually being myself now. There are a lot of memories that don't bother me as bad now too. I now feel good about how I adjusted or dealt with some things that I previously was ashamed of.

Maybe continuing to gain a better understanding of yourself, with an aim at recognizing reasons to love and be proud of yourself, would be a good goal for your "what now" stage.

j0sh

Hope you're ok RainingRoses and congratulations.

Raining Roses: Take some comfort in finding out at age 38. I am 56. I just found out (in May) of this year that there was such a thing as Asperger's. I was officially diagnosed in September of this year. As far as "what do I do now?".... When I read / learned about Asperger's, it explained SO MANY things in my life, especially my school days (elementary through college). I always knew I was different. By the age of 56, I had figured out on my own how to navigate a Neurotypical world. I wish that diagnosis and help had been available before or shortly after beginning school, but it was not. Things would have been SO much easier. I honestly felt at times that I was on the wrong planet, that I had been left here by aliens or something.
When I went to be assessed, I had a "I have to know" attitude. When the diagnosis was finally made, it was a huge relief. I felt vindicated in some way. Like someone falsely convicted of a crime and then exonerated. I was almost giddy for three days. There are times when I feel.... what... regret...that awareness of this and help was not available when I was a child. It could have made life SO much easier. I would suggest that you seek out support groups in your area. There should be several in the NY area. Find one where you feel most comfortable. You are not alone. If you have trouble finding one contact me. I have some resource books that list web sites that can help you find such groups.

That brings up another point. It helped me to read about this condition and others with it. This site lists some excellent books of this type. You will do fine. Congrats on the diagnosis.
And remember, you are still the same person as before the diagnosis.
Mollytroubletail: I liked your reply. Thanks for extending some understanding and support.

AS had been suggested by my psychologist and speech therapist so that was how I was taken to get diagnosed.

I can't imagine going through 40 pages of questions and answering questions for three hours. I might not be able to do it. I have a hard time already answering about myself. I guess that's why they have other people like your partner or parents or anyone that knows you.

I don't think I was ever at the "what now?" stage because I was young when diagnosed and didn't even know what it was then. Then by the time I found out what it was, I never thought "okay what now?"

At least you have been officially diagnosed after many, many years. I feel sorry for all of you who were diagnosed well into adulthood. I was diagnosed when I was 9 so I've known all about it for a long time. Also your psychiatrist and therapist who totally missed anything wrong all these years should have their licenses revoked!! Because this asperger's is undoubtely the biggest thing in your life, it is in mine.

Also I would absolutely love to go to New York one day!

Congratulations on finding some answers. (I agree, it is odd to congratulate someone on a diagnosis). Hopefully now you can get access to helpful therapies, programs, etc.

Wait, I thought she didn't get the AS diagnoses?

What are we congratulating her about?