Adult Diagnosis of Aspergers, seeking others' experiences.

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I am so bad at genuine social behavior that I am even having difficulty manufacturing a first post.

I am a working, independent living twenty-six year old who is under the process of assessment for Asperger's.

Due to new changes at work, and ongoing stasis of mis-identified symptoms, I am having exceeding difficulty putting my 'fake me' on to be able to go to work.

When I was eighteen I was mistakenly and briefly diagnosed as Paranoid Schizophrenic, which was induced by dehydration, starvation and insomnia resulting from the culmination of a few years of untreated major depression, reclusiveness and the age eighteen phenomena (I was 139lbs at 6'3").

From there the diagnosis was downgraded to a personality disorder with a number at the end. I was medicated for nine months and blew up in weight (I gained over 100lbs in six months), was mishandled and mistreated by my psychologist, and as a result of amplified Aspergers through being mis-medicated (I was being treated in the context of mental illness, and only in the last few months have fully realized the Asperger's connection) became an utter automaton. The only thing meaningful he ever told me was "Your personality is very artificial". It took me about three years to recover from that faux pas, the effects of the medication were lingering even after stopping treatment (risperidol and effexor) during part of which I ended up homeless, I lost my middle-school sweetheart at 19 when she could no longer stand the automaton I had turned into. It was so bad that during one conversation I told her she could cheat on me because I had been rendered impotent by my medication, was fat as f**k, and had zero empathy, understading or emotion, where otherwise I was able to 'love' her in the past.

Between then and now I have worked the last five years, and as I mentioned, live independently. Prior to that I had menial jobs and also a failed stint in the Air Force due to exacerbating a prior back injury (long story there). I had attained a waiver from the surgeon general on account of my mental health history, in combination with my stellar ASVAB score I was only in the delayed entry program for less than a month. I was originally guaranteed a job in Aeronautic and Space Systems, which was downgraded to Meterological and Navigation Systems because in their excitement they overlooked my waiver, which DQed me for the first job.. thats all history now. I never attended college due to my parents unwillingness to pay or save for any schooling, and my disqualification for aid based on their income. I need to go to school, but am stuck in my present 'sh***y circumstances stemming from the years of misunderstanding of my diagnosis'.

Fast forward seven years...

Most recently I have been mis-diagnosed as having 'Schizoid Personality Disorder' (several months ago). After having a discussion with a brilliant neurologist I have come to understand that my 'affliction' is Asperger's. It has had a profound impact of my perception of myself. I have always thought my issues were originated in my personality, that I was a damaged human. Now I begin to understand my behaviours more accurately and hope to seek a path of life that isn't built around mis-understanding of circumstance. I am in the preliminary stages of re-writing years of self torment. I understand that I cannot change who I am, nor would I ever want to, but I can change how I see myself internally, and in the context of the 'rest of the world'.

I have come to the forum to seek comradery, advice and learn of experiences of others who are late identified Asperger's.

Hello everyone!

Hola....

I'm afraid a lot of the posters on this board will not really be in the same position. Growing up with a misdiagnosis, or no diagnosis is tough. But the toughest thing is finding out (like I did too) that you may not be the person you thought you were.

I was diagnosed 6 months ago and I am still reeling from the realisation that I may not have been "real". Or maybe I was. I'm still thinking about..... This self doubt was massive and threw me into a head spin for a few months.

I wish I could give you some helpful advice but I'm still working through it all myself.

Substitute Navy for Air Force and leave out the middle-school sweetheart and you're pretty much writing the early part of my life story. Substitute gainfully employed and add SSI disability due to never being able to keep a job longer than 2 weeks, plus multiple stints of homelessness.

After being awarded disability (the case worker decided it was for "chronic recurrent depression" because I had no idea what to put in that space, due to too many different diagnoses.) add a visit to vocational rehabilitation where I told them I wanted to go to college and use my mind. They gave me an I.Q. test (on which I did so well I made the proctor's jaw drop open at one point and he just stared and forgot for a few seconds to turn off the stop watch. Then told me, "I've never seen anyone finish that section before time was up.") They gave me the MMPI and a manual dexterity test. After looking at the result of all three, I was told that I was very intelligent, very complex, and too sick to work or go to school. I was told to go get several years of therapy and come back. (This was 1994 - Asperger's was a brand new diagnosis so most professionals hadn't heard of it yet.)

It wasn't until 2001 that I ended up in the right therapist's office and my AS was recognized. She got the dx ball rolling for me and steered me toward helpful information to assist me in re-framing my life's experience in light of my new knowledge about AS. In 2003 I enrolled in university. In 2007, I got two bachelor's degrees and applied to graduate school. Now I'm in graduate school, wondering if my reach has exceeded my grasp. Having a hard time coping with stress and people exposure and exhaustion. General practitioner refuses to accept the AS diagnosis and still treats me like a mental health case (which is to say, badly. And, no, I don't believe that people with actual mental illnesses should be treated poorly, either.) Thanks to the way medicaid is run, I can't escape that stigma until I graduate, find employment, and get real insurance (unless Obama's plan to digitize medical records means those wrong diagnoses follow me for the rest of my life, continuing to impact the quality of health care I recieve (I frequently get turned away when I have a real medical problem and told that I'm "being OCD" or "being a hypochondriac" and given the number of a psychiatrist instead of getting the medication or procedure I actually need.))

I can't think of anything else to say. Welcome to Wrong Planet.

... and "Hello!" right back to you!

Whew. You said a *lot* in just that one paragraph, and it is great to hear you now beginning to unravel it.

Welcome.

Dave,

I had a feeling that late diagnosis would be little found. I am presently being seen by a child psychologist due to the lack of any professionals for adult Asperger's around where I live.

I am at a loss of what to do. Now that things are becoming clearer I don't know that I can carry on my life the way it has been. I work for a public school system in a very small town that does not appropriately follow IEP's for students, and are excessively corrupt through cronyism and pervasive misguided conservatism and bigotry. It would be unreasonable to expect that they would ever make considerations of my conditions, which make working in such a poorly run environment exeedingly difficult for me, particularly in the now full light of the concept that the me who goes to work isn't actually me. I had concept of this fact in the past, but it has certainly taken on a new light due to the association to Asperger's. While I know I will never be considerably normal, I can now begin to be the true me rather than being a fake projection of myself based on societal norms. The net result may be some alienation from differing aspects, but I am willing to make that sacrafice to not be so dead inside as a result of the mental energy expenditure required by a facade-personality.

I am an advocate by nature when it comes to children and students, I am constantly at odds with the administration where I work because they do not follow the education laws appropriately, and are effective imbeciles when it comes to being professional educators, and in all reality in general in their philosophies and beliefs (many administrators express "I don't know why we have to have these special needs kids in our schools, its going to bankrupt the district"!) never in open session of course however. I cannot change the "black and white" nature with which I see the world. I cannot "pick my battles" as my fellow union leaders try to tell me. There are multiple paths in any situation, but in my mind they are all under only two categories: Generally Right and Generally Wrong. I cannot partake in Generally Wrong activities and I am at constant threat of reprimand for my resistance in doing Generally Wrong things.

I hope to be able to take at least a month off of work so I can get things sorted out: the diagnosis, self-advocacy, further self-education, meaningful therapy if any even exists around this Valley, and the possibility of finding a better job in a more structured environment. Previously I have seen taking this last course of action as an abandonment of my "calling" to fix the school system from which I never matriculated appropriately, due in part to the strain of social interaction (I hardly even went to school but maintained honor roll, took all advanced placement courses and did exceedingly well on standardized testing) and in part because the classroom was so neglected and worthless in the context of gifted students such as myself that I dropped out and finished through Adult Education. Now I see that course of action (finding a better job in a more structured environment) as a likely imperative to my long term well being.

I wish you the best of luck in your situation, this is not easy.

Sparrow,

In regard to my 'middle-school sweetheart'.. I never would have had a girlfriend if she hadn't wrote me the 'circle yes or no' note. She was really a piece of work herself, and has shown herself in the long run to be attracted exclusively to weirdos, which was basically what I have always been. Her latest manifestation was 'older men', she is now married with two daughters and I haven't talked to her in years. I am happy for her. She was my first and only girlfriend. No other girls in school even noticed me outside of wanting help in class with their homework or to cheat off my tests... These days I enter into a process of wanting to meet girls, meeting one, going for a few weeks then either A) pushing them away by my eccentricity or B) regressing and ceasing contact, which in the case of A), B) would likely be the ultimate end result either way.

In work, I think I relate to your feeling of "reach exceeding grasp". If I were able to only function in the specific task oriented interactions of my position I would probably be alright, but I can't do that. I seemingly want to change the world from within the trenches. To help facilitate the 'revolution' factor of my nature for advocacy in education, I now feel a desire to enter into academia and become an education lawyer, which on the outside sounds even more complex and potentially inflammatory, but I think with the right support tools it would be a better course than I have currently laid for myself... or I could be totally off base in that thought process.

My only concern at this point is my debt in my ability to go to school, and of course how would I even pay for or get aid for education? If I quit my job I destroy my credit, lose my car, etc. How would I pay rent? I would be fine not having a car, using public transportation, becoming a minimalist, but the s**t I've built up over the last five years is going to be difficult in overcoming to persue a new and alternate goal in life.

Your words are helpful to me in seeing that there is hope for making a life change while appropriately maintaining the notion that there isn't a silver bullet, and no matter what, it will always be relatively difficult. Thank you.

Lee,

Thank you for the welcome. I feel that this site will be ultimately be amongst the most valuable resources I could hope to come across, whether in person or online.

Are night classes a possibility or would school and work at the same time overload you? As for paying for school, I'm using student loans. The U.S. government offers a consolidation loan that is income contingent and that's my plan -- the payments are based on my income and after 25 years if I haven't paid it all off, the rest is forgiven (although I need to save some money for taxes because I will owe them on the amount that is forgiven since at that point it changes from "loan" to "income.")



You're welcome and thank *you*. Thank you because people seem to either see "great success" or "you're still struggling?" and you are one of the few people who saw both at the same time. It makes me feel more whole when people perceive a more whole picture of who I am.

I tried the night class thing a few times and it was too overbearing. I feel dead inside each day after work, it was hard to get back out and to class, and I was attending a local community college with horrendous faculty. They weren't teachers, but rather repeaters, of whatever the text book would say. They brought nothing new or thought provoking to the table. The culmination, in both instances of entertaining the idea, was dropping out. I may be an academic delinquent or what have you for all I know at this point, probably have to take some type of remediation course before even being able to get back in. It is one of my deficiencies to not be able to see past others' deficiencies, particularly when those deficiencies directly impact my circumstances (in work, school, etc.)

I need to see a counselor that specializes in special needs students, to find out what I can do about my existing debt (credit card, car loan, 'student loan' for a garbage technical school) in taking on new debt. I just have this odd inability to do much good for myself. I can barely pay my bills despite having money to do so each month, they just sit and I often get late charges as a result, sometimes duplicate if I don't pay over the course of 45 days or more. My fantasy though would be just to roll it all in to one big student loan, including current living expenses, with a deferral and have horrendous debt by the time I am graduated., that way I could commit to education and not be inundated by having to work simultaneously.

I am glad that my words had a positive impact on you. I think it is essential to see success as a process, and not as an end result. You seem to be doing exceptionally well in your success!

Hi RomanceAnonimo,
Keep up the good job. Seems like you've had a fair share of suffering but you are on the right path to knowing who you are.
I myself still am in two minds to get a professional diagnosis because, as you said, at this age they will diagnose me with SPD or AvPD right away and if I try to explain that I've been odd and aloof since childhood, they'll just say 'Never mind your childhood, you are an adult NOW'.

Hello Severus,

It is quite a difficulty to have a clinician not take an easy path on behalf of their own comfortable zone, typically in the case of the sake of ease, or just in the circumstance of not being comprehensively aware of bleeding-edge information between the interconnectiveness of some developmental, personality disorder and mental illness type conventions. Considering that many doctors are neuro-typical, they don't have a fundamental insight into the true nature of the distinctiveness between what is 'displayed' and what is really going on.

As the best doctors will proclaim in a casual environment, very few doctors maintain a high level of excellence in keeping with the times, as in real-time, regarding diagnostic criteria or cessation of old improper beliefs. I'm sure out there somewhere are some doctors who think autism spectrum disorders are caused exclusively by bad parenting or vaccinations. It is also a natural limitation in any event, no matter how proficient the doctor is, to only be able to use what they can see or hear for a criteria of diagnosis. When it is difficult to captivate one's own circumstances to the clinician, they may be implicitly limited in the capability to make a diagnosis, even in guided diagnostic scenarios. Another issue that I have observed is where the clinician uses social instinct, whether intentional or otherwise, to pre-determine many factors based on a patients characterizations. It seems by the nature of Asperger's, for the unexperienced or under educated clinician in the realm, that it is seriously possible that the clinician may become jaded and relatively disconnected from the process after being offended at elements of our speech without us realizing or intending it. From there it becomes a process of fighting an already lost battle.

When I was eighteen I lost out with one doctor, I think that I mentioned in my original post, because I pointed out that a patient I had been hospitalized with was likely high functioning autistic rather than schizophrenic (I had become quite educated at a young age specifically about autism through reading on the subject as a result of my younger sister being diagnosed as autistic). He ended up conceding that he had never considered it and would look into the possibility after I rebuked his every menial attempt in justifying how the patient certainly was not autistic. In the end, I think I left him feeling belittled and I never got a piece of meaningful communication from him. In the case of the other patient, the doctor had effectively taken a leap of faith to one explination for the patients displayed behavior (he was very heavily medicated and was likely displaying schizophrenic features amplified by the mis-use of antipsychotic drugs). My major tip off was his language creation and heavy stimming, which was certainly not tardive dyskinesia. He also had super sensory for hearing and had conceptualizations that I knew to associate to autism, rather than the doctor's interpretation that they were paranoid delusions. At one point another doctor overheard a conversation I had with the other patient and told me 'Maybe you are here for a reason, he doesn't talk to other people like he talks to you'. In my own clouded and medicated state that was a bit creepy... I began to believe for a few days that I had been imprisoned as a medical experiment. Once the meds settled in the delusions stopped with intensity luckily, and eventually went completely away.

Another experience I had several months ago surrounding my diagnosis of Schizoid Personality disorder, the clinician I was seeing became very visibly shaken after a session where I described some of my conceptions of humanity and myself as an outsider. At the end of the session she asked me why I had to be so negative. She would always brag about how she was always on the ball for her patients when they needed her, never missing a return on a phone call or email. It ended up that she ignored several of my emails and calls before I decided to give up on seeking any additional 'help' from her.

I guess what I am saying is that to get a positive result it is almost a requisite to research diagnostic criteria and lay your circumstances out to the clinician based on the various levels of specificity in accordance with the academic elements of the circumstance. To express in 'your own words' as I did in my most recent prior circumstances allowed the freedom of the clinician to mis-interpret both the meaning of my expressions and the causitory elements of my explained behavior and thoughts. I don't think one can ever be too exahaustive in explaining the nuances of one's own behavior, so that it is not quickly written off as a simple personality disorder. Now certainly there are people who do have personality disorders that this would not apply to. It may also border on what could be construed as 'manufacturing a diagnosis', but the reality of the situation is that the better educated both the patient and evaluator are, the better information can be shared in a relevant format. Don't be affraid to educate your evaluator, just not in a condescending way. Don't be affraid to end communication with an ineffective doctor, and rather opt to seek someone with a higher level of specialization.

As the very intelligent neurologist I mentioned in my first post told me, and as you alluded to, in many cases the clinician overlooks the ramifications of a patient's childhood in the context of the possibility of a developmental disorder. Not 100% of cases are caught in early development and based on this fact nearly all circumstances should first be explored in the context of developmental disorder before considering mental illness or personality disorder. As he put it, it is the virtue of not being "Asperger's enough" to have it caught early on, whether that mean the person is considered by others to be 'just a little strange' or those around the child were not receptive enough to make any connection. If only a more astute observer had been present to give consideration of the circumstance, and the child evaluated early on, the same person would certainly have received a proper diagnosis as a child rather than improper as an adult. And of course there is denial, which can be the worse, as those who are in denial will actively sabotage bona fide diagnosis and evaluation processes, and take offense of any suggestion by others that 'there might be something wrong'.

I wish you the best of luck in working out your situation.

Hello and welcome! I could really relate to your entire post, but especially this last paragraph. When I was diagnosed back in '04, I felt this enormous inner shift happening. I like to call it my personal Defragmentation of my System. I am glad you found us! I too, had been diagnosed with Schizophrenia, Bipolar, and Personality Disorders. It is nice to finally find out who I am, and I am glad that you are having your epiphany too!

Welcome. I was diagnosed a little over a year ago after 33 years of existence and I've only just recently started accepting it. I spent a long time in a kind of bereavement, I was mourning the old me.

I too have arrived at the decision that I want to be at university and, like you, I was worried about how I would pay for it. Personally I've decided that to try and work and study at the same time is too much for me and the stress and anxiety would probably kill me. I also decided that the last 15 or so years of work have been terrible for me and will continue to be so. They only way to try and make a difference is for me to have a go at what I'm interested in, which is biological research (specifically molecular biology and microbiology). The only way to do that is to go through university. Logically, in my mind at least, the choice is obvious; be happy or not.

As far as finances go, I'm extremely lucky to have a loving and supportive wife who will help as much as she can and I'm getting student loans to cover the education and personal expenses. I will probably never pay the loans off, but I don't care. It's worth it to me if it helps me live a life closer to the real me. Besides, most people I know have mortgages they will never pay off.

I really hope that you can find a way of joining me on the path to self discovery and realising your dreams.

Late diagnosis is a rough deal. To have been so wrong about so much of life for so long takes a while to process. Finding a sensible path to move on along isn't much easier.

I self-diagnosed back in 2004, and completed formal diagnosis last year. I'm still a bit touchy about the whole business

While late diagnosis is a mean thing... would you rather have grown up with the diagnosis?

Us late diagnosed people had a rough deal, but on the whole we learnt to survive amongst the NTs. I'm not sure I would have liked to have known as a kid. Things would have been different.

I wish I'd known as a kid. Things that were confusing would have made more sense. The adults in charge of me would have (hopefully) understood that I was not just being a "bad kid." There would have been understanding that my high intelligence was not enough and that I really *did* need help with the things I was asking for help with and that I was not just being coy or pretending not to understand in order to manipulate people.

My parents would have understood my great vulnerability, sexually, and watched more closely. Maybe they would have been able to recognize the signs of incest if they had a better understanding of my neurology and stopped it instead of letting it drag on, undetected (and unspoken by me because of fear and because I knew that no one trusted or believed me -- which they might have if they'd understood what was underlying my behavior) for a decade.

Maybe my parents' reaction to the incredible verbal and physical bullying I faced every day would have been different. They believed I was "bringing it on myself" and so refused to do anything to stop it because "she's gotta learn somehow." Maybe when I begged over and over for years to be homeschooled my parents would have listened and done something to remove me from the torture instead of saying that they weren't going to "reward" me for being a "bad kid." Maybe my parents would have been given tools and frameworks for understanding me instead of growing disgusted by me and threatening to turn me over to the state because they didn't want me any more.

Maybe, having been removed from the bullying and torment, I would have been able to stay in school instead of becoming a drop-out. Maybe then, my parents would have helped make sure I transitioned to college. Maybe instead of trying to get me out of their house by any way possible -- leaving me homeless and even more vulnerable to predators -- my parents would have understood how difficult it all was for me and helped me to follow a path toward success and independence.

The naivete was not an act on my part. I really didn't understand all those things I said I didn't understand. But no one believed me when I said it. No one believed me when I asked for help. No one believed me when I said I couldn't help being how I was and I'd like to change but please tell me what to change and how because I didn't know what to do on my own. I was always told, "you're a smart girl. You can figure it out." But I didn't figure it out and I ended up homeless, raped, living with abusers because I had no place else to go except back to the streets.

Maybe if I'd had a proper diagnosis and my parents had proper education when I was a child, my life wouldn't have been thrown in the gutter. Maybe I would be where my neurotypical sister is -- she went through university on the normal time-table, all the way through to a doctorate, met a nice man and married, travelled Europe multiple times, has a strong circle of friends, owns a house in Denver and has two beautiful daughters. I look at her life and think "that's the life I was supposed to have, too. That's the life that was stolen from me."

I can never get those wasted and lost years back. My life has veered so far from "normal" that I can't even relate to most people any more. I don't even know where to go in a conversation -- not just because I don't do small talk but because I have so very little in common with the people around me. Because my life was broken and thrown in the trash heap. Because people didn't understand. Because I didn't have a proper diagnosis to explain me to the people around me.

I'm glad that you and others did. I did not. I am still living on government handouts and praying that the efforts I'm making right now to pull my life together will bear sweet fruit.

Yes, I would much rather have grown up with the diagnosis. You're not kidding when you say things would be different. And I so frevently wish I had that different life instead of the Road Warrior struggle I've had to endure.