Official dx How do you feel about it/How has it affected you

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I believe that I have asperger's syndrome. I am also bipolar and mental health professionals have also tried to attach a diagnosis of personality disorder NOS (PD-NOS). This because they think that I have characteristics of some personality disorders (like obsessive, schizotypal), but not enough to warrant the diagnosis. I am not officially diagnosed with asperger's.

I have been very frustrated by the PD-NOS dx, because first of all, it just doesn't seem to fit, and it certainly hasn't helped me to understand myself. This has been very hard to take for someone that spent the first half of her life trying to understand why I am the way I am and why others are the way they are. I always thought that if I could thoroughly understand these things they would somehow become lest painful. It is untenable to me that I should be expected to accept a diagnosis that is ill-fitting, and does nothing to assist me in understanding myself. Also, if I were to accept this vague diagnosis, I would need to accept that I was already personality disordered when I emerged from my Mother's womb. I doubt that was the case.

Asperger's is often misdiagnosed as personality disorder by mental health professionals that fail to rule it out in their diagnostic evaluations. In my own case I wonder why this has not been considered when I've had such a top heavy preponderance of asperger's characteristics since I was age 2. I really have no doubt that asperger's fits and is an accurate self-diagnosis.

I'm sorry if I seem to be going on and on. For a while now I've been going in circles with my mental health professionals over the issue of my diagnosis. They simply seem unable to understand the importance of, and how I feel about, having the most accurate diagnosis possible. Now they consider this issue to be an obsession. My psychiatrist says that it would make no difference in terms of how he treats my symptoms. My psychologist also feels that it would have little impact on our therapeutic relationship. Therefore neither understands my insistence that an evaluation be done to rule-out aspergers. Therefore I have scheduled myself for a neuropsych eval that my husband and I will pay for ourselves unless I am able to get a referral from my primary care physician (Internal Med).

I wonder how others out there feel about the issue of an official diagnosis. For those of you that found out when you were older, how did it feel? Was it a relief? Has knowing made a difference? Those of you that are self-diagnosed, do you ever feel a need for confirmation/validation? Am I just obsessed imagining that knowing officially could be such a relief/make such a difference? I'm going on too long.

I appreciate hearing from anyone on this topic on or off the forum, Thanks in advance, and thanks for your patience in reading this.

Ramoth/Debbie

My diagnosis at 19 was the first time I had even heard of the syndrome, but it was indeed an absolute relief to know that I wasn't a 'defective' human being like I had thought before ("other people handle social sitches just fine, why can't I, I must be weak" sort of thing). Almost anything can be made less fearsome through knowledge of it, and through the diagnosis it was as almost as if the lens of my mind's eye, being the 'default' model everyone gets, had been adjusted so that it fit me properly. There was really no downside to being diagnosed for me. If associates are sufficiently openminded, it helps them adjust their dealings with you so as to better accommodate your needs.

Of course, some people will be skeptical or outright disdainful no matter what, and that causes me pain every time I think about it, but it beats the alternative, and having the extra credibility a medical evaluation gives can help a lot when you're trying to explain your own needs to others.

I had this exact same debate with myself when someone I like to be around suggested I might want to look into AS as my diagnosis . . .
I have been diagnosed with avoidant personality disorder, bipolar disorder (I agree with this one), schizotypal personality disorder, antisocial personality disorder, obcessive-compulsive personality disorder, borderline personality disorder, and some form of dissassociation in my life - as the psychologist who diagnosed me said 'look at the symptoms of all those disorders and put them together and you get AS'

When I got diagnosed I was really pretty upset about it for two weeks or so (after all it is AUTISM) but then I started reading about it - specifically some of Donna William's books and Edgar Schneider's first book and 'Pretending to Be Normal' (I can't remember the author's name right now) - and discovered that it explained SOOOO much - I mean things that I'd been trying to figure out my whole life . . .
I also find it makes me more relaxed - for example, I just started a new job and usually it would bother me very much that things that stress other people out on this job don't effect me at all and also that I can't connect with my new co-workers on more than a superficial level . . . but as it is I now say 'That is no more than can be expected . . .' - however, it is important not to use AS as an excuse - I know I still have to be nice to people, but it explains why I simply can't connect on a deep level . . .
I am also working on my own book with one of the people I most like to be around (our unique perspective is that we go and do things together and then describe them from my point of view and hers (she is NT) and we are going to publish that - you would be AMAZED at how different they are - we might as well not be in the same room) - this is very theraputic and I love the idea of doing for other people what the books I read did for me . . .
The down side is that my parents will probably read it and that is not good . . .

But overall I'd say 'Go for it!' especially if you are young - if I had known when I was younger I would have done so much differently . . .

I just re-read your post and saw that you were bipolar, too - then it is particularly important, I think - there is nothing more 'fun' than being seriously depressed and having people offer you help and being too shy and suspicious to take it . . . trust me, I know!

Good luck!

I'm not sure how I "feel" about it as I would need more information about your particular circumstances. It appears you are expressing your "need" to be wanting correct "treatment". Of which in my personal experience would be Occupational Therapy and Social/Communication Skills training.

When I took my child to a pediatric neurologist, we were told my son was "his first" with regard to his particular symptoms. He referred us to a clinic in Houston, TX, if I recall correctly, named the "Byrd Clinic". He said they specialize in the neurology of one who has many autistic traits like me and mine.

Fortunately, his issues are not of a mental illness. Trying as hard as the public school psychologists have been to prove it to be. In spite of numerous outside source diagnosis to the contrary of mental illness. The HORROR is how much manipulation has taken place in public schools of various states to "force medication". I was almost unaware of the "real motivations and intentions".

Thankfully, I've been able to keep these manipulations at bay with close scrutiny and supervison. Managing his public education very much like one would do so with a business. I've been shocked by the possibilty of "dirty deeds" by seemingly nice caring people. Therefore, thus far we've been able to get at least his minimum primary needs met. This without having to endure the travel and expense this kind of evaluation would warrant.

Love, Peace, & Auspie Rock,

LadyBug

I am 51. My concern is not so much about correct treatment as with being correctly labeled. I have a background in occupational therapy. I went to school for training as an occupational therapy assistant and worked as a COTA for a number of years. (I applied the OT techniques that I learned to myself. These did help me to at least function while my children were growing up.) I've worked in a nursing home as an activity director, in an institution for profoundly physically and cognitively disabled persons, on a hospital rehabilitation unit, psychiatry unit, emergency room, I took a position on float staff to try and force myself to become more flexible, and finally, before I transferred to work on the UW campus, I worked for three years as a dialysis technician. All but the first two were at the University of Wi Hosp and Clinics.

I've seen again and again how important an accurate diagnosis is for various reasons, but in the area of mental health I think that it is particularly important. Most people, even medical and mental health professionals themselves, have little understanding of the problems they attempt to treat, and in my career, I've seen countless people with disabilities disregarded and treated disrespectfully by the professionals and ancillary staff that are suppose to help.

When I worked at UW Hospital and Clinics in-patient treatment of people with mental health issues, particularly personality disorders, was appalling. In my view these labels and diagnoses that we seek are a very mixed bag. Some of us have struggled our whole lives alone and in pain trying to understand why we are different , why we seem not to fit anywhere. It seems like if we could just know why if we could just name it, perhaps we could vanquish it or release some of its power over us. But recieving an official diagnosis may come at a great cost. A label may become a greater handicap than one started out with, so before seeking one out, it is wise to do a cost/benefit analysis. I believe that is what I'm doing by asking this question.

That is why I am interested in hearing from people about what having an official diagnosis means/has meant to them.

By the way, I hope that you are making some progress with your son's school. I know what that's like. My husband and I had so much trouble with our public schools that we were at our wits end. We were fortunate, because the parents of another child here in town were quite well off and started a school for children with "learning differences" in our city. It cost $6000/yr back then(more now). I worked two jobs and some kind anonymous soul donated a $2000/yr scholarship so that Jonah could attend. Unfortunately he could only attend for four years. They didn't have a middle school program, so Jonah returned to the public schools, and despite our best efforts, an appalling amount of abuse. It was a brutal environment, and I'm deeply regretful that we didn't sue the school district for the harassment of Jonah by other students, and even teachers, that they allowed. I was afraid that the publicity would be harder on Jonah than the abuse. (Jonah is 6' 6" , and his great height made him stand out.) He is 24 years old now, and there are new challenges, but thank God those years are over!

My diagnosis, which I received when I was 15, has been really beneficial for myself and has not caused any problems. It finally explained why I was so much less social than everyone around me and much more into science, which I had wondered about since I was in middle school. Since then, I have improved dramatically and now feel ready to attend college without my parents nearby. In fact, last summer I was told by a neuroscience undergraduate from the prestigious Smith College that it didn't seem like I had autism, and that I seemed relatively normal.

I was diagnosed when I was five. Back in those days, it was known as High Functioning Autism. I didn't find out until I was fourteen when I found some reprots that were hidden in a green steel box in the basement of my house. I was thinking that there must be something seriously wrong with me, because I didn't know what Autism meant. I waited until a month after School started up again. My Mom beat me to it. She told me that I wasn't stupid, lazy, slow or adopted. That I have High Functioning Autism instead and that's why I sounded different from the rest of my Family and why I was in the Learning Centre for a couple of classes. It also gave me the answer to why I had all those obsessions over the years. I was wondering why my Peers were avoiding or picking on me and I got the answer that I was waiting for. It was a relief after thinking that I was adopted for three long summers in a row. I was feeling sorry for myself at the time, not because of the stuff that I found out, but because my younger sister was babysitting and I was quickly finding out that you can't just wear anything that you wanted to High School. I found myself waiting for the fashions of the 1960s to come into vouge so I could wear my Bell Bottoms to School the way that they are intended to be worn. Remember, that was back in 1989 and I was going through School wishing it was at least 1966. 1969 would have been better.

You've shared ALOT of good information and concerns, of which I agree. Do you think your experience and techniques are bountiful enough for a book or pamphlet to help other mother's or medical providers to function successfully?

Love, Peace, & Auspie Rock,

LadyBug

i was 23. i was in the midst of being treating by a psychitrist for a condition i was not made aware of.
i am complaining of not being able to think and having my iq drop. i get sent to a neuropsychologist and do a complete eval. i get a bipolar dx aspergers and adhd. didnt tell me what i allready did not know. i know for a fact im not bipolar and it stinks;the only piece of paper that says i have aspergers also say bipolar.

Ramoth, do you fully meet the criteria for AS (you don't need to meet all of the following in A and B but you do need to meet two of the following in A and one of the following in B).



I was 12 when I was diagnosed and I wasn't happy about it. But I didn't understand what it was. I just assumed what it was and I thought it was something I can get rid of if I just keep trying and working on changing the way my brain works but I kept failing, I still struggled with my school work. I actually have a learning disability. But I was 14 when I finally started asking my mom what would I be like if I had more AS and that’s when she started to tell me I Probably would be doing this, I probably be going that such as going around hurting peoples feelings and not caring, not caring about other people, wouldn't be able to be in activities such as choir, etc. Then one day she must have gotten tired of me asking her about AS so she went downstairs and pulled out a bunch of papers out of the filing cabinet and gave them to me to read. I lied down in bed with my mother and read them and I saw mine wasn’t all that bad because what I was reading didn’t sound like me. There was hardly anything underlined but it explained to me why I’m literal and why I have troubles understanding sarcasm and jokes. It also helped explain to me why I had troubles having friends and why I get obsessed with things like movies, Dalmatians, London, etc. So I started looking up AS online and the more I read, more it explained to me about myself and my problems. I can remember the time my school counselor brought a DSM-IV book to school and he opened it to the AS criteria page and read it to me and I saw it fit me and when came to the part about

(C)stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects


and he pointed them out to me. I happened to be playing with my fingers at the time and then he pointed out how I always take the battery cover off my game boy and put it back on.

Learning about AS has helped me become a better person. I worked on some things like learning not to talk about my obsessions, coping with my anxiety, etc. It has also made me a strong person. I read about it and tell myself “I don’t want that to be me” after reading about how aspies fail to have jobs or have troubles keeping them and about being unable to go to places such as malls. I don’t let the diagnoses stop me from trying new things, I do them when I feel comfortable but I don’t tell myself “I can’t do that because I’m PDD, I might be unable to do it.” I should try and see if I can. I just realized I let my learning disability stop me from going to college because I didn’t think I’d succeed because the work be too hard and if I can’t do the school work, then I can’t do the career I’m going for. I hated myself for the disability I had because I will never be able to be very successful and be able to live anywhere because I be only be able to make minimum wage. I can’t be afraid of not being able to learn something, I can’t be afraid of failing to graduate and get a degree.

I was even more happy this February when I found out I really don’t have AS because I didn’t meet all of the requirements in the criteria. I am higher on the spectrum in some ways and lower in other ways. I go up and down on it. It’s like I travel to different planets. I jump to HFA, then its AS, then it’s NT, and I’m back at AS, then I’m at higher than AS. I go all over. Then I’m an NT because I’m doing something normal people can do like I’m at a mall, I’m talking to someone, I’m looking at someone as I’m talking, etc. but it depends on what situations I’m in. But I can still show AS behavior er PDD-NOS.
Now here I am confused again about my diagnoses because I’m being told from different people the criteria isn’t meant to be taken literal, my BF is wrong, lot of aspies don’t meet the criteria, and I’m seeing on here lot of people diagnosed with AS or undiagnosed were slow in things like they tied their shoes late, some still can’t etc. Whoa what about no delay in self help skills and I see aspies being slow in some self help skills. I wonder if the criteria isn’t meant to be taken literal. If that’s the case, then do I really have AS? I don’t know but I still say I’m PDD-NOS. Now when people ask me if I have AS, I will say I don’t know or I dunno.


I also have other conditions; ADD, Language Processing Disorder and I was told I have cognitive problems (probably the higher on the spectrum part), I found out I have adjustment disorder when I was 18. I heard my mother talking on the phone when she was signing me up for SSI. I have been diagnosed with Dyspraxia, OCD, Depression, anxiety, Sensory Ingretion disfunction, all part of the autism spectrum.