Adult female diagnosis. Pros, cons, and process

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If doctors understood about women with Asperger's, I would be diagnosed already. Finally, I have found a psychologist who seems to know the female side, so I think I can get my piece of paper if I want to. It's a lot of money to me, and the process is unnerving to me too, and I have other doubts.

I would like to get input on what a diagnosis could achieve. I will share some of my thoughts so far, which are mostly against seeing the psychologist.

I feel that many doctors and counselors will continue to disbelieve I have AS, because they are so clueless that they think AS means monotone voice and no eye contact. When they speak to me for a minute, they would assume I was misdiagnosed. I know from other diagnoses I have, that doctors question what other doctors said. Then I would have to say it was by a PhD who specializes in AS and, essentially, I am telling the doctor they are wrong to their face.

I think schooling is one of the main reasons to get diagnosed. If someone is no longer in college/grad school, like me, what do you think? I think another reason is if the AS interferes in the workplace but that is not an issue with me. I rarely go outside of my home. I don't think a diagnosis will change how my family and friends relate to me. They all know about my AS traits and would not care whether I saw the psychologist. I feel like a diagnosis may help me in some kinds of future social situations, but I could always fib and tell people I was formally diagnosed when I haven't been.

I also feel like a formal diagnosis may get me some mistreatment. I am imagining situations such as, where someone makes assumptions because they know little about AS. I am unsure how to explain these situations I'm imagining. Perhaps I can explain later. In some ways, I feel lucky that I can pass for NT. If I get the diagnosis, then all future counselors and doctors would know upon meeting me, and even if they don't believe the diagnosis, I think they would treat me differently and start analyzing or using it as an excuse.

Thoughts please. Mostly I would like to hear about good and bad experiences after you got diagnosed, and anything I should consider before I decide. Despite all this negative I have written, I know I would feel relief if I had the official diagnosis. But I believe I would also have new negative feelings, like I had with other diagnoses I got.

I am also curious about how the diagnostic session went for you, if you are diagnosed.

I was just recently diagnosed. Best thing I ever did for myself. I found an inner piece that never existed before. All the wondering, panicking, confusion.. I understood its source now. I also don't try and hide my differences so much anymore and life is so much less exhausting. I ask more questions when confused and I am less hard in myself when I need to ask questions. I don't see myself as "stupid" anymore either.

My family have quit pushing me so hard and accept that I am different and that there is a real reason beyond wanting to sponge off my mother. My failure to launch has a name now.

As for other doctors claiming misdiagnosis... I am a bit confused by that. I could see it if some doctor sat down with you asked a few questions and declared you diagnosed AS. But you take cognitive tests.. tests that I feel you can't cheat on and why would anyone want to? As my diagnosis states very clearly - "testing has concluded a cognitive profile of Asperger's Syndrome" .... I don't see how that can be disputed

My life is much calmer now... I still have all my symptoms and issues, but my response is better and therefore lots of stress has gone out. I allow myself to stim more now instead of suppress it like I used to.

Best of all, I accept myself.

Good luck, I hope you find the answers you are looking for

I am glad it's benefited you so much. I know some other people never got formally diagnosed but they accepted it as their diagnosis, and still got those benefits.

You mentioned the cognitive test results matching. I know I match and I'm an Aspie female. I wonder if some tests might not show it. I may have too much practice with hiding, faking, or catching my own mistakes. I don't know what the tests are like but I wonder about that. For example, I take things literally sometimes, but after being teased about it, I try harder to stop and think, if the other person might be joking or meaning something different. I am practiced at that and the psychologist may think I am not Aspie since I understood it was not literal.

That is another thing I fear, paying for the test, and still not getting a diagnosis. But I know I have AS by the female criteria.

I am an adult female who fully believes she is an Aspie. I recently completed an assessment, only to be told that it's "all in my head." Instead, I was diagnosed with a list of other things that could account for some, but not all of my symptoms. The big issues they do not explain are my meltdowns, and sensory issues.

Needless to say, this was not only frustrating, but devastating.

I am into my thirties, and because of this, I have had a LOT of practice adjusting my behaviors to what is considered 'normal' by the rest of the world. Having a really good eye for detail helps in this area, and I too can mostly pass for NT, assuming I am not entering an environment that I hadn't anticipated or prepared for. For this I am fortunate in terms of interactions, but as far as what goes on inside, and the strength and effort it takes to project this each day, is a whole different story.

The doctors stated that even though I report, very strongly, that I have many social interpretation and interaction issues, they could not detect any. That because I came off as friendly, and endearing, it would not be possible for me to have AS because "no one wants to be friends with someone with AS." (Yes, this is a direct quote.) They also said I exhibited too much passion in my speech, instead of being distant and disinterested. That if I really were Aspie, I would have spent my entire assessment staring at the floor instead of expressing deep interest in my assessment. (What?! !)

All of these things that they cited as evidence against AS are, of course, the stereotypical traits that you'd find in most children, and many young adults. However, as an adult, and particularly as an adult female, I found their assessment to be very short sighted. I scored very well on all of my academic achievement tests. However, I scored lower on understanding intent (the test that determines if you are able to detect sarcasm, and figure out what idioms mean, and if your interpretations are literal), and on the reading emotions test. But instead of seeing this as a clue, they said "well that's just simply not your strong point," and wrote it off entirely.

Anyways, I'm trying to not go off on a tangent. What I'm trying to say is don't be surprised if you go through several misdiagnoses, or questioning of a prior diagnosis. It seems that proper adult assessments are hard to come by, and this is made even more difficult by the fact that you're female. My experience trying to get a formal diagnosis was horrible, and I spent the entire time presenting all my evidence, and voicing my concerns, only to be told that I was imagining it.

I hope to some day receive a formal diagnosis, because for myself, this is the closure I need to finally be at peace with myself. It's not for anyone else but myself. If you're the same, then keep looking for a proper doctor who will listen. I know that's the route I'm taking. If I do find a doctor that truly listens to my concerns and understands them, and gives me a fair, and thorough assessment, only to conclude I really am not an Aspie, then so be it. Until then, I'm convinced that the doctors I've spoken to so far either don't know what the hell they're talking about, or have never dealt with an adult assessment before.

Sorry you had clueless doctors. They were extreme in their statements. It is incredible how misunderstood AS is for women, especially adult.

I would only consider an assessment with one that knew how to diagnose women. I recommend you do the same and travel to a doctor who another woman recommends. I would make sure the doctor could answer questions about aspie women, before I agree to pay them anything if possible. A psychologist often agrees to a brief phone call, or possibly meeting.

I think I would score well on the emotions/idiom/sarcasm test, so I worried I might even confuse one who knows how to diagnose women.

I think many women only get their diagnosis because their child has autism or AS, and even then, they would be lucky to have a doc who knows how to diagnose women. I don't have kids.

When I say about cognitive testing... wearing masks.. I am an expert. With these tests.. masks don't work. So I sit there like a NT... That did not stop the tester declaring top voice scaring the crap out of me "WRONG!" with every wrong answer I got.

They tested me in spelling - math - Some weird puzzle building, visual memory... Some "figure out how it works" test (I got all of those wrong cause I never could figure it out)... Connect the dots that have numbers and letters (epic fail!)

There is no mask that can make you pass or fail those tests. Cognitive function can not be faked. If you suck at math (like me) then you suck at math. I aced the visual memory part with 100% though, and that was the only area I did super well on. They also had me listen to a story verbally and retell what I remembered in it. I thought I did super well until she reread me the story and I had forgotten more than half the important details! There is a click test that I was slow on and some other tests that have you finding all the 6'a in a sea of other numbers... row by row.. sounds easy? Naw.. not for me. They do assess your behavior during testing as well... so I think they are watching for "faking" and lack of effort.. because that is what they said.. they think due to this patients extreme anxiety at times testing effort was not optimal. No.. it was the sensory issues and freaks outs that she kept sneazing on me and slamming file cabinets behind me. Who can function like that? Not me.

So I don't know.. for me.. I think that these tests show them a lot about your cognitive profile. I worried I would come out not having an AS diagnosis... I got it.. but I also got a list of other ones as well... which I was not so super happy about.

@lexicon - I am sorry to read your post... I can't imagine how that feels... I am really sorry .. please don't give up.

Thanks for sharing those details. I don't want to go through that. Did you see that psychologist/psychiatrist just for testing for AS, or did you know they were testing other things? I already have other diagnoses, but I don't need more besides AS. Most likely they would give me more diagnoses that would confuse my doctors more.

I haven't sought diagnosis mainly because I'm afraid it would be a millstone around my neck in terms of future insurance and/or employment.

I have never experienced any of the negative things mentioned in this thread as a result of diagnosis.

Having said that, laws here may be a bit different. Here you do not have to disclose your AS to your work, college, or anyone else that you don't want to.

Also, when I got diagnosed, I went to a clinic that specialized in Autism. The psychologist who diagnosed me had specialized in young women with AS.
I am pretty sure those two things alone make a pretty massive difference to the process, and probably the outcome.

I would seriously recommend that if you plan on getting diagnosed, to go to a clinic that specialises in Autism, and to get someone who is familiar with AS in women if possible for the assessment.

If you go to an assessment, it is necessary to drop the "NT act" - if you don't it will make you even harder to diagnose.
As women with AS are already difficult to diagnose, I would not make it harder by doing the usual acting NT that many of us seem to do as a coping mechanism.

And just think! As of next month (which starts tomorrow) Aspergers Syndrome will be Autism.

I know the new DSM doesn't come out until like the 13th? So, we have until then. To do what? I have NO idea.

I just know from reading the posts in this thread alone....it will be a GINORMOUSE dis-service for us Women ESPECIALLY who suffer from this disease!

I'm so un-happy about this....have known it's comeing (we've talked about it here on these boards) but I guess I'd just hoped it wouldn't REALLY happen, ya' know?

I would like to be diagnosed. I cant afford to treat the chronic pain I have from ovarian cysts though much less a diagnosis for this, it is way down the list. I keep taking the aspie quiz now and then and each time I'm shocked my aspie score is so high. The last one I put "i don't know" a fair amount and it was still 168 out of 200. One thing I hate is the implication I'm not 'special' enough to have something like that. My mother as much as said so. The last shrink I went to, for help dealing with family issues concerning my nephews, said "i don't see that in you, it's probably just a little bit of PTSD". I have PTSD but it's not 'a little bit'. But clueless about asperger or autism spectrum. No I am not the female version of the rain man. But I do hit every characteristic of female aspie on the list. Ridiculously so. It would be a confirmation for me.

llel11,
WOW I can't believe some Psychiatrists!
The thing (before now; because now there is no Aspergers) was that there really isn't any kind of treatment for an adult w/Aspergers (or even a child) BUT a good therapist would help with gaining effective coping skills (for both the adult & child Aspie) but as I said--it's all a moot point now.
Now you need someone familiar with ALL aspects of the Autism Spectrum...I suppose that MIGHT be a good thing--Autism is much more "Mainstream" than Aspergers ever was. And Autistic Adults have many protected situations (w/the social services available--here I'm thinking of the 'typical' Autistic=a male diagnosed in his childhood now in adulthood)

Having said all of that, what I said up there about a good therapist helping you gain effective coping skills IS the best possible scenario. I'm sorry you found one of the idiots (I wonder if the fool ever thinks a woman can be "a little bit pregnant"?)

DO NOT DO IT.

My horror stories are all over this board-- and it can happen to anyone.

Diagnosis has done nothing for me. There was some brief warm fuzziness, hearing all about what a wonderful job I've done for being a mostly self-taught Aspie who grew up back when "autism" was still a non-verbal little boy lining up blocks and banging his head against a wall. How in my case it's really not much more than a personality trait (BS!! !) and I'm really very likable.

That's faded now, as I've had to interact with the real world.

Help coping with problems-- my tendency to shut down, the panic attacks that have become unpleasantly common since all the crap I've been put thru for disclosing my (at that time) self-diagnosis, difficulties with organization and time management, the all-consuming drive to fit in at any cost vis a vis the unwillingness to do it and the seething resentment when I try, the sexual dysfunction, self-hate and depression, the recurring belief that I must abuse my children into appearing perfect as perfectionism has always been my most effective defense mechanism-- has not been forthcoming.

All I have for my diagnosis is the same pile of books I could have bought anyway and a giant scarlet letter "A" for an albatross hung around my neck.

Getting a diagnosis was definitely one of the five worst mistakes of my life; of the five (not going to trade school, letting people pressure me into college, getting married, having kids, and getting my diagnosis), it is the only one that has brought nothing-- NOTHING-- positive into my life.

I read some other threads and I don't want the diagnosis anymore especially because they might try and pin others on me. In a few generations the stigma might be gone but now it's crazy either way you go, with or without diagnosis.

Sorry about your bad experiences, and thanks for posting in this thread. I know NTs who regretted marriage, kids, career too. I hope you don't beat yourself up too much for those because they are common paths and people will always push others into them.

Well, if it makes any difference, the marriage and the kids are my favorite mistakes.

I love the man and enjoy his company. Mostly I regret the marriage for his sake. He is a good man really; he has problems but most of them are from loving me. He deserves and could have had more, but he found me at a low point in his life and fell madly in attachment.

I probably should not be a parent, because I can't be a "normal" parent. Once upon a time I was young and naïve and believed that one did not have to be "normal" to be "good." I like my kids and like having them around. The only reason I regret them at all is that I cannot teach them how to be "normal" and that I want to just let them be themselves and deeply hate and resent forcing myself to jam them into some mold of desired behavior.

Brings me as close as I have ever been to going psycho on the world. I do not mind forcing myself into compliance and conformity half so much as I mind doing it to my kids. That just fills me with rage when they are such beautiful, loving, intelligent, inquisitive little human beings, and I end up telling them to squelch that for someone else's "should be."

Sorry about the rant. I get kind of wound up thinking about it.