Worried about wrong diagnosis

[veryconfused]

Hi,

I am 36 year old female. I went to look for help for my chronic fatigue syndrome and other physical problems. Autism runs in my family. My granddad was extremely autistic, my mother has serveral traits and recognising herself in the spectrum. All het brothers and sisters have the traits, and some of their children have gotten diagnosis because these days teachers can tell something is wrong, they got referred for futher investigation and got a diagnosis.

About myself: I had certain interests as a child. Learning by heart the bird book, knowing all birds by name and features. Same for airplanes, which is still a interest. As a child I was quite insecure, afraid to make mistakes at school. I always felt different. A little serious. Intelligent and sensitive. I never really fitted in. I am a very anxious person. There were times I had friends. And times where I did not fit in.
On the other hand I am friendly and open. I learned how to make contact with people. On the first hand you wouldn't have a clue. I am very carefull person. Not impulsive. No drama. No anger outbursts. I have a long steady relationship and friends. I am very tidy and need structure. I easily overstimulated.

The first shrink I got, saw some traits in me. But not enough to put a diagnosis on me. Rigid thinking was one of them. I was looking for analytical therapy and she could not offer me. So I went to look for one which suited me better. I found one. But the problem is: this one thinks I have Borderline!! I am in shock. I don't think I fit this label. And I am scared to death for the stigma which accompanies this diagnoses.

Let me state very clearly: I dont have mood swings, no impulsivity, no aggresion, I am not manipulating anybody, no angry bursts, I have long steady relationships, I dont cut myself, never tried or threatend with suicide (although that is now the only think I can think of, having this diagnosis). I am very honest. Respect and justice I find very important vallues. This is just not right.

The reason the shrink thinks this is because I did not have secure bonding with my parents when young (with autistic mother) and he thinks I have trouble defining who I am (identityproblems). I told him I dont agree with this diagnosis, because I clearly don't fit the criteria. But he thinks he is right, he is the expert! He said for him it is just a word and for him there is no stigma. I totally lost trust in him. It is not a bad man, but just so stubborn in his ways. He doesn't seem to see what this is doing to me. I had very stressfull weeks because of this. Feeling depressed and anxious. Don't know where to turn. The biggest problem is that he told the doctor deciding over my disability benefits. This doctor does not like borderlines (in the rapport it stated that he saw manipulative and dependant features) and I am afraid that I will lose my benefits next time. The docter already wrote in his rapport that he sees traits in me like manipulation and dependancy, when I tried to convince him my physical problems are serious and real. Now I have even more trouble getting my chronic fatigue syndrome validated.

My parents, my friends, they all say this diagnosis is ********. Nobody agees. I am a nice person, not causing any trouble in my social environment. I am friendly, understanding, and the opposite of impulsive!!

I am terrified going to my GP with this story. I am afraid he believes him and than think I am a liar and a fraud now! What if it comes in my file.....than I am stuck with this wrong diagnoses for life.
I am afraid to go to another therapist. And I would not know to which one. There are only limited numbers of therapists and they all know each other. I seriously need help for my physical and now also mental problems. I am also very afraid to lose my benefits, as I am currently not able to work. The doctor deciding over my benefits also now thinks that the next year I will be having treatment. Which I am seriously thinking to quit....I also lost hope I ever going to find a therapist who sees all the connections and is able to understand what is going on.

Since I have been seeking help, things just got worse.

What should I do?

Any advice would be highly appreciated......

 

[ancusmitis]

I've heard that borderline is a common misdiagnosis for autistic women. This is unfortunate, but that's what you get from people like a certain self-styled autism "charity" flooding the airwaves with pictures of little boys. Out of all the things in the world, that seems to me like one of the five or six that may actually be helped by an "awareness campaign."

He said for him it is just a word and for him there is no stigma.

This is actually a very ignorant thing to say. Stigma is the response of society to a thing. One person is irrelevant. The fact that he doesn't know the definition of stigma is a huuuuuuge red flag to me. Whether he realises it or not, as a psychiatrist he is in a position of authority and his actions have consequences for more people than just himself. This person may be a bigger threat to you than benefit, even if he does do a therapy you are looking for (and no therapy is 100% for autism anyway)

The biggest problem is that he told the doctor deciding over my disability benefits. This doctor does not like borderlines (in the rapport it stated that he saw manipulative and dependant features) and I am afraid that I will lose my benefits next time. The docter already wrote in his rapport that he sees traits in me like manipulation and dependancy, when I tried to convince him my physical problems are serious and real. Now I have even more trouble getting my chronic fatigue syndrome validated.

Sounds like you need to ditch both of these guys. Why is there a doctor who doesn't like borderlines in charge of assigning people benefits anyway? Even if the diagnosis is wrong, that is still discrimination. Do you know of laws in your area that protect you? Do you have a means of seeking legal assistance?

 

[Progster]

I would look further afield into finding an autism specialist with experience with diagnosing adult women to ask for a second opinon. Adult women with mild autism or Asperger's can be very good at masking or hiding their symptoms, and come across as more social and friendly by learning social scripts. Here are a couple of sites which may help you:
http://www.help4aspergers.com/pb/wp_a58d4f6a/wp_a58d4f6a.html
http://www.taniamarshall.com/

 

[Beverly]

I was misdiagnosed and having BPD, mostly because my father did in fact have BPD. That turned out to be one very bad experience with a shrink. I got my records form him and, eventually they were lost in a move, or I'd still have them. I knew it was wrong and didn't want it getting anywhere else so I quickly requested my records.

It may be harder now with everything being on computers but, that experience turned me off to any sort of therapist for good. I never got an official correct diagnosis but, I don't need a shrink to tell me that I am on the spectrum.

As it troubles you so much, I agree with Progster finds a specialist and get that diagnosis corrected. The head strong shrink sounds stubborn and very insensitive to me. A lot of people become shrinks due to their own problems, he may have some disorder that causes him to be a poor one for you.

 

[Nisk]

My wife had a breakdown 7 years ago and ended up in the hospital, she was diagnosed with bipolar. She continued to see the same psychiatrist for 3 years as he kept getting her to try different meds to find the right concoction. She finely decided to stop taking the meds and started feeling better. When she wanted to see another psychiatrist the previous one refused to give her file saying it was lost. She went to another Dr. And was rediagnosed as ADD/PTSD and giving the proper meds. She now feels better and isn't being drugged with the wrong pills. She also never mentioned to me or anyone else that she stopped taking meds for 3.5 years and that made it so that when she did say she was no longer bipolar no one believed her. Long story short if it doesn't feel right it probably isn't, and always be honest with those closest to you about what's going on.

 

[veryconfused]

Thanks guys for your replies!! Very much appreciated.

He said he "knows all about the stigma", but for him it is a neutral term. Great! That helps!

He seems to be involved and generally speaking a friendly guy, but indeed stubborn and unaware it seems of what it is doing to me. It seems to have become a fight between two ego's. Him using his power. Which is not helping me in any way. Isn't that why I went there in the first place? for help?

I can 'ditch' this shrink, but the other one I can't unfortunatelly. Insurance doctor's are ****oles and we can't choose them, unfortunatelly. I most probably go with your advice and find a shrink to correct te diagnoses, specialised in autism.... My current shrink is going to 'clearify' to the insurance doctor what he said before on the phone (appearantly this doctor drew his own conclusions due to vage terms from my shrink) and get it in the file more properly formulated. He promised. But I am not sure what is going to come out of this. He says he still has the right to say what he wants to say, even if I don't agree. He is the expert.....Maybe his letter makes it even worse!! Off course, then I will not give permission to send it.

 

[Nisk]

My wife had to get a lawyer involved when the insurance company were going to cut her off due to "their" doctor saying she was perfectly fine and could go back to work at anytime. Lawyers really scare insurance companies if you have the money for one

 

[Tom]

You can't really go anywhere until you get the correct diagnosis and know/believe it is correct (or at least on the correct track and being narrowed down further).

You have to forget personal feelings about doctors to an extent and focus on the problem at hand -getting an accurate diagnosis. You also have to try and keep your mind open and accept the truth when you find it.

You probably need to switch to a different doctor now. Btw you use the term 'shrink' and 'therapist'. Have you seen a psychiatrist, psychologist or a therapist?

 

[Rocco]

Welcome aboard

 

[camerartus]

Welcome!