Need advice on Adult Female Diagnosis

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Hi all,

I'm looking for some advice. Next week I am to be evaluated for ASD. Bear with me on the length: After many years of being hyperfixated on trying to "figure myself out," I was ultimately introduced to Asperger's Syndrome and all the of proverbial light bulbs went off. I don't mean to make light of claiming that the label fits--it was a seriously long process that made me come to that conclusion; lots of in-depth research on my part and constantly trying to prove to myself I was likely wrong, but it just... fits. I finally decided enough is enough and scheduled an appointment to be evaluated by my city's Center for Autism. The appointment was scheduled months ago and has been an increasing source of anxiety as the date comes closer. Now that it's almost here, my anxiety is peaking.

I see three outcomes:

1) I am diagnosed with ASD 1, which is what I suspect. I would finally have confirmation and validation.
2) I am diagnosed with ASD 2. I would still be validated but conflicted that it is, for lack of a better term, "worse" than I expected. (Please note, I do not think being autistic is in any way bad... I'm just conflicted over the whole situation).
3) I am told that I am not autistic. I will feel completely invalidated. I do not want to insist my self-diagnosis is right, but I cannot express how much of my life makes sense when viewed under that lens.

Two years ago I was in therapy. I had suspected ASD for some time by then, but it was having an extreme meltdown triggered by anxiety during gradschool that had me take the step to talk to someone. The clinic moved me between a few therapists with the first two focusing solely on my anxiety (the third specialized in ASD and said it was highly likely, but I'd like to address here the result of the first two). Here's where I have my issue: the first two therapists worked together (trainer and trainee); I was told that they don't "see" my anxiety... I'm friendly, charming, charismatic... the thing is, I had been told that same thing years before by a professor of mine to whom I had opened up. It is wholly invalidating.

One of things that resonated with me when learning about ASD is how females can be particularly good at finding coping mechanisms and ways to avoid triggers. I know what I feel. And I know that I am exceptional at being able to internalize everything. E.g. I'm an optimistic person, but probably 80% of my smiles are pure muscle memory to illicit positive reactions from people. My meltdowns won't hit critical max until I am alone; as though my survival instinct will suppress everything (I basically freeze up and muscle memory takes over) until I get somewhere safe and secluded (which was another tactic I read about; another light bulb). During this process of trying to sort out my mental health and issues, I have begun opening up to a select few friends who are very supportive and think ASD fits when I beat the proverbial horse explaining it, but on some of the larger issues they've given me the same response: they just don't see the extent of it. One friend told me that although I do get worked-up, I don't freak out as much as I believe I do and that I should give myself more credit. I love my friends but, again, I feel invalidated.

I had started a video diary a while back. I hadn't experienced any meltdowns for quite awhile, so I was determined to try and document the next time I got upset. It happened, and I got myself stable enough to hit the record button so I would have something to review later. It was a hot mess but I got what I needed and later, when I reviewed it, I saw what everyone else did. I know that during those moments I felt like I was falling apart. My senses were going haywire, I could hardly speak, my very skin hurt; I was having a full blown attack and it took every ounce of willpower not to throw my computer across the room just to get it, and everything else, away from me. What I saw on the video was me, speaking slower than normal and perhaps a little choked up, but otherwise appearing fine.

If I can't even see the behaviors when watching myself in a recording, how are the clinicians supposed to?

I'm tired of this process. I just want a clinical, confirmed answer that explains why my brain works this way. I almost don't even care if there's follow-up assistance to help remedy my issues. I recently learned of the term "alexithymia" and I think it certainly applies to me. I fail at communicating my feelings. Not just physically but I don't have the words. Regardless of situation, I never understand what I am projecting and have to go through a step-by-step process to even begin understanding why I am reacting a certain way.

I'm afraid I am going to go into my appointment and that they're going to see the same friendly, charismatic person, tell me I probably just have mild anxiety or that even my stress is normal, and then send me away. One of my friends said this is the clinic's specialization, that they'll see it if it's there. I don't trust they will. I've considered calling ahead of time to express my concern but, frankly, I find people incompetent (I had to correct one of their coordinators during the paperwork process on what sort of information the printed directions were asking for).

I'm expecting the worse-case scenario and thought it might help to come back to the community forum to ask for advice from... I don't know... any women that went through this during their diagnosis? Or anyone that was under risk of being misdiagnosed? Hell, maybe I'm just looking for advice or encouragement.

Please and thank you, guys.

Why do you have such an overpowering NEED for an Asperger's diagnosis? If you know what your problems are, what does it matter what name they're referred to by? Could it be that you're simply attached to the idea of being an Aspie in the same way that people are attached to their favourite football team or religious denomination? I don't think this is a healthy state to be in. If you know what your problems are, don't rely on a doctor's opinion; doctors seldom know what they're talking about anyway.

Buddha stated that suffering arises from attachment - the suffering arises because nature, being in a state of constant flux, makes it inevitable that we will be physically separated at some point from that to which we are EMOTIONALLY attached. The key is, don't allow yourself to become emotionally attached - and whatever you do, don't start "acting up" to the stereotype of Asperger's (or any other mental disorder). I know what a can of worms this is, because I did it myself as a teenager - and its source was always attachment to a given label.

After I had self diagnosed as a teenager, I was desperate to get a diagnosis, but one didn't come until sometime later, by which point I had begun to loathe the label. Careful what you wish for.

Whether or not you get the diagnosis you are looking for shouldn't stop you from using this site to finding ways of coping with whatever you have. Many of us have discovered ways of reducing stress, like shopping when the stores aren't so busy or getting a silent office clock. Sometimes it makes a big difference, sometimes it doesn't matter one bit.

A doctor won't be able to tell you what you should do, you will have to find out what works and what doesn't, diagnosis or not.

ASD can be a reason for an anxiety disorder if it's related towards people but not even few NT people develop any kind of anxiety disorders too. Except you have a Munchausen syndrome and want everybody tell to have ASD what are the benefits for you of being diagnosed having ASD?
Only if you don't even have friends to tell them the diagnosis then it's very likele that you may have ASD.

_________________
I am as I am. Life has to be an adventure!

I am being evaluated next week too. I am anxious, but feeling like very good things will come of it. All the best and good luck.

I understand that getting the diagnosis does not resolve my issues. And like I said, there are numerous other factors outside of anxiety that have pushed me towards this conclusion.

I completely agree that it's not necessary or particularly even healthy to cling to a label, which is why I have tried to consistently to approach every one of my issues from the perspective that it has nothing to do with ASD. The third therapist I briefly mentioned said the same thing, that it doesn't matter if the label applies because I have to learn to cope regardless.

I suppose I don't particularly care if the diagnosis is ASD. What I DO care about it is understanding what's wrong. The extent of my issues, which I have not gone into any detail about here, are debilitating and I can't cope on my own anymore. I have adopted many strategies that help but the constant regulation of my anxiety, my emotions, my social interactions, etc. is burning me out and I shouldn't have to live like this. I know there's nothing that could "make it go away," but I have done my research and know that there are certain therapies and medications that help some people; I would like to at least be able to have that discussion with an informed professional.

I don't want the label to use as an excuse. I feel the label will help because, right now, I essentially have no way to communicate what is actually wrong. I need to be able to communicate if, for one example, issues arise at my new job and I need to explain to HR what is wrong.

@Prometheus18: Thanks for your reply. You said you went through the same process. I'm not trying to be antagonistic, but I don't understand why then you're so critical of my desire to do the same. And I would certainly never begin to "act up"... I don't understand why someone would. I'm not looking to match my behaviors to the label; I am discovering that the label helps explain the behaviors I already have. You say you now regret being associated with the label. Why?

@BTDT: I appreciate the reply and I agree in that this site has been quite helpful. But the issue is that I don't actually know for certain what's wrong. For me, it's kind of like having a bruise that I have no idea how I got. The bruise keeps coming back; I keep adopting strategies to avoid repeatedly injuring the area; the bruise keeps coming back. I know the issue is the bruise, I understand how bruises are formed, and my strategies of avoiding further injury to the area are successful in that they are preventing me from exacerbating the issue. But at the end of the day, the bruise keeps coming back. I've learned to cope with the bruise being there and the frustration of constantly managing the strategies I adopted, but the pain is still there and something is inherently wrong because it shouldn't keep coming back. In that instance, it makes sense to me that now it's time to go to a doctor. Again, I agree. I don't trust them and I often think they're wrong, but my own efforts are just not enough.

@quite an extreme: Thanks for your reply as well. Like I said, it goes far beyond just anxiety issues. As I just wrote to BTDT, the benefits are that I would be able to communicate what is wrong and hopefully be able to identify more appropriate ways to manage my issues. There are some behaviors that I have that I later learned were making things more difficult for me--but I had no idea they were part of the issues. Some of those behaviors, I then learned, were also symptomatic of ASD. I feel if I had a confirmed identifying label, I could then work through the label to identify related symptoms, isolate unrelated/co-morbid symptoms, and try out solutions that are customized to those issues.

For example, I have a friend that is bipolar. I asked them how, when they were diagnosed, it wasn't misdiagnosed, considering how similar its manifested symptoms can be to schizophrenia, depression, anxiety, OCD, etc. They told me part of it was that particular behaviors of their's stood out as being most commonly BPD related. The other, and more cementing evidence, is that my friend was prescribed particular medications that would only work if they had BPD. The medications don't work for everyone with BPD but, if they do work, it only helps those with BPD. It was a trial and error, but it worked one because my friend was originally diagnosed by competent professionals. Does that make sense? Even if I won't know the exact solutions to my issues, having a solid diagnosis will tell me what I'm working with and which "medications" (or strategies) to start directing my attention towards.

It is good to know that you understand the importance of proper diagnosis for treating disorders.

The difficulty with ASD, is that it isn't actually a disorder like bipolar. Instead, anxieties result because people get upset when we exhibit behaviors common to people with autism, like flapping our hands. If other people just accepted it as normal, we would be OK. But, as one poster exampled, a Rabbi (no less) excluded her from activities unless she stopped flapping her hands and displaying other autistic behaviors! So we are forced to hide our "true selves." There aren't medications to control ASD that you would want to take, in the same sense of taking a medication to control mood swings by changing the chemistry of the brain.

I think diagnosis can help to understand oneself better and so one can learn to live accordingly, avoid stress best as one can and thus improve quality of life. It can be a relief to understand that one's not crazy or bad person, just different. I should probably get official diagnosis but I don't want it in my medical records...

All the best to you.

https://autism.sesamestreet.org/video/meet-julia/
Julia has autism.

I got my diagnosis 2 weeks ago. For me it made me understand myself so much better and so much of my life makes sense now. I feel such a relief, and that in itself makes it worthwhile. I can now take better care of myself without feeling bad about it. It is also important for welfare and such, I have a reason for my struggles on paper, rather than just my opinion which I think makes me sound just lazy and weird.

Good luck!

I got my diagnosis (high functioning autism aka aspergers) this year as an adult female.

I was also in regular therapy first but my therapist knew little to nothing about autism and couldn't help me much with those issues of mine. She did have me take an online test though and she also helped me find a company that could carry out the tests needed for a diagnosis without me having to wait for literal years as she could tell I was very certain that i'm on the spectrum and that I was suffering without the right support.

I am good at hiding how I feel too. I wasn't a couple years ago and after my first date with my first partner he made fun of how nervous i'd been (he wasn't very nice to me ever) but since then i've learned to hide how uncomfortable I am among other people. I smile a lot and sound confident while talking. I've never had meltdowns but instead I shut down.

It's good that you're talking to people. I had two friends with aspergers before I got my diagnose and it felt good being able to talk to them, we are very similar to each other. You don't have to "freak out" in situations just because you're on the spectrum, people handle things very differently and on most people you could never tell they're on the spectrum for example NTs never think there's anything odd about me other than that i'm very quiet and there are NTs who don't talk much as well just like there are autists who are quite extroverted.

I can't express my emotions with words either which is very common with autism and one reason why some people believe autistic people do not have empathy. In a relationship if my boyfriend asks me to talk about how I feel I will always panic, get annoyed and want to leave the room. This is because it's one of the most difficult things someone can possibly ask me to do.

When I went to my first meeting with a psychologist during which he was going to determine wether I need to be evaluted for autism or not I was also worried he'd think I have no problems as it's not visible on me in any kind of way, my family worried about that too. I had prepared a long, long list of experiences and feelings I have and gone through it many times so I could explain to him in detail how my possible diagnose affects me and how it's complicated my life for me socially but in the end I didn't even need to bring up half of the list, he had many questions on his own and I got to fill out 3 or 4 papers with questions as well. All in all it took less than an hour and then he told me I could probably be on the spectrum and he set me up for my first appointment to start the full evalution. So don't worry these people are professionals and they don't just look at how you come across like regular people in your life do, they look much deeper at body language, motor skills all the little things and of course you get to tell them how your problems affect you and don't be afraid to do that or hold back because they need to hear how you experience and react to things. They also talk to your parents or other relatives but that's optional if you're an adult but I would recommend letting them do that as they can give valuable information about how you were as a small kid already and also how they see you from the outside.

Good luck to you. I was also really nervous before I was gonna get diagnosed.

I sought a diagnosis as an adult female (almost 60) for the sake of the young school, pre-school age children in my family. I knew I had depression and a few neurological problems but never suspected autism until an occasion when I had a major public meltdown and a young woman with Aspergers helped me calm down. When I saw a young female family member reacting to something like I had at her age I wanted to help. She, and others, in the family can get assistance in school if necessary. They can get counselling that wasn’t available when I was young. We can show a history of confirmed autism in the family, rather than just suspecting as we do for my brother, father, aunt and great-aunt. And I like to “know” things. I like facts, not guesses and suppositions!