Agonizing Over Diagnosis--Any Thoughts?

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Evening all. I stumbled on this site when I was doing some research on AS, and I'm really glad I did. Maybe some of you will be able to help me figure things out, or at least offer some advice, as I'm at a pretty confusing point in my life right now.

I was diagnosed with ADD when I was ten years old, and being homeschooled was able to manage the learning implications of that fairly well. Of course when I got to college, things started going downhill so I was tested again, this time with ADHD. (Big difference!) Been having a lot of meltdowns and panic attacks in the past couple of years, and several things including Bipolar Disorder and Borderline Personality Disorder were suggested but not confirmed. I was told that OCD or OCPD was almost a definite (I was even medicated for it). I went to several therapists, but due mostly to money issues, I never really got to see anybody for any length of time. So recently I started making use of the counseling program at my school, which is free, mostly due to needing meds for the ADHD. At my session with my counselor the other day, she suggested that she's been seeing a lot of Asperger traits in me and thinks I should get tested. Despite having a lot of friends with Asperger's, the fact that I'm working on a SPED major, and my keen desire to know what it is that has been causing me all these problems all my life and why I'm so different, this was the first time in my entire life that the thought had ever entered my mind that I might possibly fall on the autism spectrum. I just sat there with my mouth open.

I told her I'd think about it and do some research, and we could discuss it further when we meet next week. And I did think about it, all day. And I started noticing things. Things that I do, things from my past, ways that I think. It really started falling into place, but there were some things that just didn't seem to fit. When I got home that night I looked up a lot of different sites and focused on the more credible ones, and I came across a couple that listed and explained specific female traits and how they differ from male ones. At this point there weren't really any pieces that didn't fit. I was extremely cautious about jumping the gun and self-diagnosing, but I found that I had already started to identify and feel a sense of belonging with the "Aspie" community, and I had already started to think better of myself.

Which leads me to my dilemma. If I believed in self-diagnosing, that would be it. I would be free to assume the label and go on, at peace with myself and the world, like I have been the past couple of days, minus the fear and the unknown. But I don't. I am keenly aware that sometimes you create your own reality, and I might, by human error, exaggerate many of the traits that an average NT might posess to a much, much lesser extent. That I might shove the pieces together, make them fit, even if they really do not. My obsessive need for closure, ever a source of anxiety, demands that I either get an answer for certain or abandon the label altogether.

Please don't get me wrong, I'm not looking for an excuse for who I am or what I've done. I'm not looking for a free pass to continue being immature, self-centered, or to not work at being a better person. And I'm definitely not looking for attention, a label just to make me different. I just feel like you can't work with tools you don't have, and that is very liberating when it comes to accepting oneself. I also want to be able to understand myself and the way I think, so that I can know what I need in order to understand instructions and live life smoothly with as few meltdowns as humanly possible. I want the people closest to me, such as my husband and my mother, to be able to know why I think the way I do and why communication is so hard, and how to make it better.

I don't want to need this. I want to think that there is a way that I can be at peace with my past, and one day very soon finally grow up and be a mature, level-headed individual who doesn't need a label to like who she is. But since I have begun to catch myself, purely by accident, thinking of myself as an Aspie, and the relief it floods me with is unbelievable. I've already begun to actually like who I am, as I am, without wearing the chameleon mask I've been weighted by for so long. And I'm so afraid of losing that to the seemingly unremarkable moment when I'm told, after long waiting and annoying and intrusive testing, that I am nowhere to be found on the autism spectrum. That I'm perfectly neurotypical. That instead of being a square peg that can stop trying to fit into a round hole, I'm just a round peg with too many splinters.

What do I do?

Last edited by Dernhelm23 on 03 Jun 2010, 11:15 pm, edited 1 time in total.

Disclaimer--I'd prefer that those without an official diagnosis not attempt any advice, due to the nature of my dilemma.

Last edited by Dernhelm23 on 03 Jun 2010, 11:15 pm, edited 1 time in total.

I think part of your agony is your uncertainty. My advice is to seek a diagnosis. I, for one, lived most of my life like you did. No one knew what was wrong with me until I hit 5th grade. 3 years later, I got my diagnosis. I was shattered. But now, I am happy with myself and this site helps A LOT.

You might not have aspergers, but if you do, you will find people like you here. If you don't, you can still relate to us and we to you. I wish you the best of luck, friend. Stay with us here and you'll feel at home, aspie or not.

You are right to be cautious. A Cambridge University study found that only 20% of those who believed they had Asperger's actually had it strongly enough to qualify for an official diagnosis. (Which is not to say that the rest didn't have it, but they were at most sub-clinical.)

I would say that if you aren't afraid of having it in your medical/psych records, go for the evaluation. Many times I have been glad I have an official diagnosis because I have spent so much time in self-doubt and denial that I would be a nervous wreck by now if I didn't have the point of reference of my diagnosis. Oh, sure, sometimes that self-doubt extends to questioning the validity of the diagnosis, but it would be much worse on me if I were self-diagnosed and torturing myself with doubt and denial. (This doesn't apply to everyone, of course. Some people are very contented and relaxed with a self-assessment and I don't mean to disparage them or to disparage self-diagnosis in any way. People know who they are and people have the right to self-identify as who they strongly feel themselves to be.)

Do you have a link or reference for that study? I would like to read it. I have read some of the Cambridge University research, mainly their evaluation of the reliability of the AQ test. It might be relevant to some family members too...

I'm trying to find it again. I just switched computers a couple of weeks ago and my hard drive died in the process so I lost years and years of research notes on multiple topics, including all my autism notes. :-(

I'm in EBSCO right now, seeing if I can locate it again. I'll let you know if/when I find it.

Hi there,

I am female and was dx at 36 years. I was given the firm dx of BPD in the past as well as schizoaffective traits, narcissistic PD traits, anti-social PD traits, Major Depressive Disorder, Generalised Anxiety disorder, Bipolar II, "psychopathic anti-social problems" and so on. This soup of dx waxed and waned until the most symptomatic was dealt with and the core issues were left. It took 2 years of intensive therapy at the end of 2007, for it to be brought to light. I have been officially dx by my primary psychologist who is a CBT specialist so I was referred to a AS specialist psych. The specialist AS psychologist did not feel it necessary for me to be diagnostically assessed. Just by talking and asking the questions was enough for him.

Even with the official dx and a strong family history of members on various parts of the Autistic spectrum, I struggle with the concept like trying to wrestle an anaconda with my bare hands. I am on disability, I have fibromyalgia/CFS and feel like I have aged 20 years in the last 2 years. I just completely burnt out. I had to leave my job and defer my degree, spent 3 weeks in psych unit and I completely lost my mind.

I am also going for testing for ADHD. The jury is out on that one.

I totally understand your need to be officially dx, but just a gentle note, it can be painful, or it is for me. I would not have it any other way though. I need evidence as I am an evidence based thinker and my shrinks are well aware of that. They have had to argue their case to the bone. I cannot refute the outcome, but it has not married with my acceptance of it just yet. I am still suspicious of it and often catch myself looking sideways in the mirror and wondering why I don't look any different. Totally illogical I know, but that is how it is.

I have a friend who was dx recently and it took her a long time to accept it as well. Maybe it has to do with a lifetime of living in a frightening and unpredictable world, being dx and ostracised with goodness knows what and then going "Oh well it was AS all along. How about that (sigh). Does this mean I have been working on the wrong premise all along? Does this mean that after fighting for 36 years, I have to do more work?". It is always good to know the truth, but the truth can come with a cost. The truth for me has been liberating but also intensely dark, for despite the skills I have learn't over the years, I still have many issues.

Take good care. Whatever your journey, you will find good support here.

Mics

I know you asked for diagnosed people's opinions--- but I wanted to offer my reassurance.

You've put into words so well exactly what I am feeling also. It's this initial feeling of absolute identification with the AS community, and the resulting conflict... what if they don't diagnose me? what if they do? what if I'm not seeing this clearly? or what if I am but the evaluator fails to?

What I'm trying to do to solve it is find someplace I can trust as a recommended expert in Asperger's adult diagnosis, and just take the plunge.

Hi there

"I started noticing things. Things that I do, things from my past, ways that I think. It really started falling into place".

I had that moment a few years ago when a psychiatrist did a few tests on me the night after I beat him at poker. he then sat me down and explained all about AS and its implications and the scales fell from my eyes. Suddenly I knew why things had been going so badly wrong over the years. The only problem with this is that I had my diagnosis when I was 48 and before then my psychiatric history included a rather spectacular nervous breakdown just after my 20th birthday which put me in a secure mental unit. At that point in time Aperger's Syndrome was undiscovered and so I was just labelled as socially immature. Like you I did however do a lot of reading because the medical staff realized that I had a good head on my shoulders and the best way to heal my mind was to learn all about it.

So, some suggestions. Feel free to look around here and all the other places on the Internet devoted to AS but remember that not everything you see on the net is reliable. As you appear to have a good head on your shoulders it might be an idea to approach a psychiatric professional and get a formal diagnosis but feel free to show them your research notes and if you want to know something then ask questions. Trust me, for them a patient with a strong inquiring mind will seem like a breath of fresh air.

Vanilla_Slice

Well, I am diagnosed with ADHD-I myself, not Aspergers. I don't know if I have AS. I just want to say that if you need help at any point in college or in your career/life in general, having a proper diagnosis will be a very good idea. If you can get it now you will be avoiding some disaster later on. There are people who experience "burn out " later on because they have been trying to live as NTs and cannot cope any more- just exhausted. I have this experience.

If you find yourself in this situation and unable to work, dont have money to get a diagnosis, it would be terrible. Find out now and make it official so you have that to back you up in the event you need it. It isnt making excuses or blaming. If you find you are not AS, it will be one less obstacle for you.

And BTW, if you are ADHD, you are NOT an NT LOL. Not that there is anything wrong about being NT!

I found that ADHD has a lot of similarities to Asperger's and you can have both, so it isnt a waste of time to get a diagnosis. I was misdiagnosed with bipolar four years ago and the meds were just not right, really screwed me up. You are better off getting the right diagnosis, no matter what it is.

Before you try to get a diagnosis, I think you should ask family or close friends about this. Give them a sheet of the signs of Asperger's and ask if any of those fit who you are, preferably someone you've known for a while. I was formally diagnosed yet unsure if I had it, but when my parents said I had all of the signs of Asperger's growing up it was easier to accept. It's not a replacement for a diagnosis, but it can give you another opinion as to whether you are an Aspie or not.

First, you must understand that having letters after your name or a license does not mean you are always right. A problem with getting a Dx for AS is that all the "experts" are "practicing" an ART not a SCIENCE. It's easy to take a child who has AS and Dx them with a host of other problems because the symptoms match but the person doing the Dx is unaware of AS or fails to notice the factors that distinguish AS from other issues.

Never mind that AS wasn't even recognized as a Dx in the USA until 1994 (only 16 years ago...I'm 41, BTW).

So, a "professional" Dx does not = guaranteed. At the cost of "professional" services, I'm hesitant to pursue a formal Dx for AS because I don't have the money and if I chose to invest the money in a Dx, I need to be sure the professional I go to is proficient enough in dealing with AS in adults to have confidence that a YES or NO determination is likely correct.

In the USA, the options of Dx and treatment for adults with AS is amazingly pathetic compared to what is in place for children with AS.

Second, my honest advice is that (other than God), nobody knows you better than you do. If you research AS and find it is a mirror image of what you've struggled with your whole life, you are probably 95%+ correct to believe you have AS. You want the opinion of a "professional" to confirm what you already believe is true in your heart, and the professional disagrees, you want to know WHY they disagree.

This is illustrated in some people's experience where the "expert" says they don't have AS because they have good eye contact...something a person who is on the mild end of the autistic spectrum can LEARN to do as they get older. Focus on deliberately doing a good habit long enough and you start to do it without thinking. Doesn't mean you're cured...you just learned to adapt. This is why many people who do have AS go undiagnosed (especially if they are on the "mild" end of the spectrum). They learn to adapt; which is the primary "treatment" for people with AS anyhow.

Third, you are correct to be concerned about "self-fulfilling prophecies" where if you believe you have AS, you start acting it out to become what you believe you are. Mind-body dualism is a real bugger, but if you are sufficiently introspective, I think you will realize that you aren't so much "acting" AS as you are "aware of" your AS qualities when they happen. My personal experience is that now that I know about the symptoms/displays of AS, I am more capable of doing something to manage them rather than they just happen.

As an example, my college roommate broke me of a few bad habits by parroting them every time I did them. In a few months, I stopped doing them because I became very self conscious every time he did this. Before he did this little routine (which bothered me at first), I was unaware of my verbal habits. Likewise, learning about AS didn't make the AS symptoms appear...I just became more aware of them and how often I was doing them. Just like you, I do worry about whether I am "acting out" a disability in a hypochondriac-like manner, but I feel that is not the case for me.

Good luck in your endeavors to sort this out.

@ OP:

I know exactly what you're going through. I "discovered" AS after my son was diagnosed with atypical autism and spent a good six months agonizing about whether I had it or not. It takes a long time to get evaluated here (not enough specialists), but a close family member paid for a private evaluation and it did give me a sense of closure and relief. But it's not until now, another six months later, that I'm beginning to feel at peace with the diagnosis. After it was over I started questioning if maybe my own beliefs of having AS had somehow influenced how I did in the tests. Like you, I want closure, a definite answer, and the fact that autism is a spectrum and I'm highfunctioning means I have to accept that the answer is not clear cut and well defined the way I want it to be.

However, I was diagnosed by leading experts (specialized in ASDs and ADHD in adults) and I'm not arrogant enough to believe I could actually subconsciously deceive them into falsely diagnosing me.

So here's my advice: since you're a critically thinking individual, prone to doubting that which is not certain, make sure you get a proper specialist to diagnose you. Otherwise you're likely to doubt the diagnosis when you get it, and then it will serve no purpose in giving you peace of mind. Since you're female (if I interpreted you right) it's also likely that non-specialists wont know what to look for. The fact that you have had so many other diagnoses suggested indicates as much.

(Also, if you're prone to OCD, like me, the doubting never really stops, it just gets more manageable when you have reliable facts to lean on)

Thanks for all of your responses. I'm really glad I came across this site, as the support yall gave me and seem to give each other is really awesome.

I figured I'd let yall have an update, and see where everybody thinks I should go from here:

I went for my appointment with my therapist last week, and she suggested I go ahead and start making some of the changes that I would make after an official diagnosis now, while we got the ball rolling on that. Not for diagnostic purposes, to prove that I had it if things worked, House-style, but to see if any of the changes were positive ones that would help me make my life easier and better. After all, this is what it's about, not the diagnostic label.

So that was good, I had something to work on, but then she dropped the bomb on me that she was going to have to discontinue seeing me for at least several months if not years. (I never really understood well the reason, something to do with getting a more official license or something.)

So now I'm at a huge standstill again. As I alluded to in my first post, I have been on a roller-coaster with therapists for years now, and this is the first one who has made progress. I am always so exhausted by the intake/making an impression/them getting to know you and you feeling comfortable with them process and I'm not convinced I can do it again. Besides, I have had several therapists that were just straight up bad. So first finding someone, then getting to the point where it's doing any good just takes forever. I'm exhausted. I just want to live my life and be happy. The Asperger breakthrough in the past couple of weeks didn't just happen and now everything's fixed. I have to find out if it's true, find out how to deal with it and what to change, and then find out how my husband can deal with it (WHOLE different story altogether, way too exhausting for the moment). Even if I don't need the diagnosis, I (and my husband) still need a counselor, and it seems like it's just way too hard to find one that does any good or even halfway decently understands me.

Arghh!! I'm frustrated!! Will this never end??

Uhm...ok...sooooo...

I just found out today that my mom has known that I have Asperger's since I was a kid.

Is anybody familiar with that feeling you get when you just realized something that is old news to everyone else? Yeah.

I can't complain too much, because now I don't have to search all over the place for someone qualified to diagnose it in a female and spend the money and time and energy to actually acquire said diagnosis...and a lot of the confusion is gone now...and I feel pretty relieved in light of all that...and I'm not bitter or mad at my mom for keeping it from me because for one thing, she made accommodations in our family's lifestyle that made life easier for me without making me feel singled out (which would have been embarrassing cause I hate getting attention) and I understand a lot of the decisions she and my dad made now that didn't used to make sense. Plus, knowing then would have changed me. I wouldn't have been the same person. I know that's not the case for a lot of people, but I know how I was when I was growing up, and knowing would have been a bad thing. Plus finding out wouldn't have meant near as much then as it does now. So I'm not mad or hurt or anything...

But still...it's kind of an awkward feeling...

I think you should go in for the full workup. It's not invasive and you're sure to learn tons of things about yourself. As a teacher that will be helpful regardless of whatever labels come out of the process. A diagnosis doesn't change a thing about who you are, it just gives you some tools for making the most of it. You won't just get a label either, you'll get interesting details about how your individual mind works.