Did my Psychiatrist mess up? Was I misdiagnosed all this time?

[whyamistillalive]

Should it take 8 years of psychiatric care to diagnose Aspergers Syndrome?

I wonder if my doctor messed up and misdiagnosed me all this time. I was mainly told that I had Bi-Polar Disorder, ADD, OCD tendencies, Depression (and PTSD which is unrelated to AS and is only due to my childhood abuse) and my doctor never really got into the social issues, and she only recently talked to me about lack of empathy, no eye contact, social awkwardness and everything else that goes along with AS. Did anyone else have a doctor take a long time to specifically address having AS, or does this sound like my doctor messed up all these years and she was focusing on the wrong problem? It was claimed that it was known that I had AS, but I really don't remember any talk about dealing with my problems, she was only interested in medicating me to get rid of as many symptoms as possible.

I don't see her next for a few days, and I don't really think I can directly address this with he to start with because I don't want to compromise our Dr/Patient relationship. I am just curious to see what other people here think.

For anyone that has a professional diagnosis, is it normal for your psychiatrist to take a very long time to get into the details of living with AS and make sure you are aware of your diagnosis; or does it sound to you like she messed up and misdiagnosed me all this time, since I was in her care for the last 8 years?

 

[Butterfly_Lady]

I can't tell you from personal experience because i don't have an official diagnosis but it seems to me that she mess up your diagnosis all this time. if she truly knew enough about AS then she would have asked about those things a lot sooner. She obviously didn't do a thorough evaluation of you when you first started going to see her. I mean, how can you treat someone if you don't find out about all the problems the person has and instead is just interested in throwing medications at the person.

 

[poey]

I also don't have a diagnosis. I am currently new to my city and am looking for a doc. I have clinical OCD, and depression... and a few others, but, i sincerely hope i don't have to wait EIGHT years for a diagnosis. Sorry for what you are going through.
-p

 

[Spinning Compass]

The other day I went to a talk on autism by a researcher from Notre Dame and he said something that really made a lot of sense. He said that unlike many other conditions Autistic Spectrum Disorders are diagnosed solely by behavior. There's no blood test, no genetic test, no brain scan, that says yes, this is definitely what you have. Not only that but apparently autism as a formal DSM diagnosis has only been around since the 1980's though it was known about long before that.

If that is the case, then it is no wonder that so many of us go undiagnosed or misdiagnosed for so long and why it is so hard to get answers. The doctors themselves don't have the answers. If diagnosis is based on observing behavior patterns then it is open to all kinds of subjective interpretation. And what about some of us older ones who have learned to overcome some of the "red flag" behaviors used to diagnose? A 2 year old is easier to diagnose than a 50 year old who may have learned the hard way to hide these same "red flag" behaviors in order to fit in. So--am I autistic? If you were going by my behavior, and I was having a particularly bad day, you might say, yes, this person is on the spectrum. But if I am having a good day, and you know nothing at all about my history, then you would have a hard time believing my claim to be on the spectrum. I could go to several different doctors and get several different answers. My primary care physician told me she has no doubt that I do have Asperger's but I hide it very, very well. So I am not at all surprised people are having trouble getting diagnosed.

 

[Spinning Compass]

I want to add something I heard today from a speaker who came to my workplace to talk about cancer. She stressed that you have to become your own advocate. You need to do the research, you need to ask the questions--or have someone with you who can ask questions. She said all too many people put their care in the hands of their doctors and just go along with the program. In her case, there were indications that she had cancer before the mammogram caught it. She suspected something and the doctor noticed something but said that it was normal. And cancer is a relatively easy thing to diagnose compared to mental/psychiatric conditions!

This spring I started having trouble with my hands. This was very serious because I work on a computer for a living and I can't afford to lose the use of my hands. Next week I go for a formal diagnosis. In the meantime I have been going to a therapy clinic for the last six months and even though I do not have a formal diagnosis (the therapists are not legally allowed to diagnose) based on their experience with symptoms like mine they started a program of therapy that has been very effective in restoring the function of my hands. (They are now 99% back to normal).

What I am saying is that it is not always necessary to have a formal diagnosis to start getting help. If you have a pretty good idea of what the problem is you can start crafting a self-help program on your own. That is how I am learning to deal with my Aspergers. I'm not against doctors or counselors or therapists, but as today's speaker said, "nobody knows you like you."

 

[Spinning Compass]

One thing more, the speaker who came today to talk about cancer said, DO NOT BE AFRAID OF OFFENDING YOUR DOCTOR!!!! If he or she won't talk to you or won't answer your questions, then find a new doctor who will. She said, why is it that people will DIE rather than hurt their doctor's feelings? Don't be afraid. Be assertive. If things aren't working, SAY SO. It's your life and your health. If you don't speak up for yourself no one else will.

I think you can tell I lost my awe of the men and women in white coats a long time ago--I am not shy about speaking up. I have a reputation as a rather "non-compliant patient" which doesn't offend me in the least.

 

[Biblio-Love]

I think it is considerably easier to diagnose a toddler over an adult. I was told that it would cost $3k to get an official diagnosis from a psychologist who could oversee all the tests. Otherwise, I could go back to my MD and see if he could send me to psychiatrist, but I fear that this person will just want to medicate me. I was previously diagnosed with bi-polar and the meds made me a zombie so I stopped taking them. In the the end, I don't think an official diagnosis will change anything. I think I am doing ok, and for the most part I keep to my very small group of trusted family and friends. The rest of them can suck it. I don't have the energy for people who make me feel bad. I've been diagnosed and misdiagnosed my whole life. Why bother with docs. They have no clue most of the time.

 

[imagesbyholly]

I never met my maternal grandmother. She was an artist and diagnosed with bi-polar. She died very young, when my mom was still a teen. All my family on that side has "issues." Asperger's seems to fit me, and I see traits in my mom too, although it seems I am worse. I am afraid I am like my m. grandmother because I am an artist too, and I know my mom's family was "hell" as she put it, and I suspect she killed herself, though the official word on that is cancer. I wonder if she really had aspergers and was mis-diagnosed. My hope is in the fact that I married a great guy, and my dad let it drop once that my mom's dad was some kind of really bad guy. He died of cancer just before my parents married and my dad only met him once when he was a withered thing on his mother's couch. I am afraid of being medicated too, and have had bad experiences with docs/ psychologists, but I often wish for one of those golden phsychs that seems to help people so well. I could certainly use the help.

 

[Arashi222]

WhyAmIStillAlive: It sounds to me that you have a lot of issues that you have needed to work through due to childhood stuff. Now that being said talking as someone who has education and did do an internship as a clinical social work therapist it is not uncommon for a therapist or whatever to work with what they believe at the time to be the most cruical things to try to help to get you in a more stable place. That may have been her thoughts knowing full well that needing to have the conversation about AS would come eventually. Second it is possible that while you were building your relationship she was gathering data and came upon your diagnosis while dealing with other things. She is human they do make mistakes too I am just trying to give an honest answer. I hope that this helps.

 

[Dragon's Tooth]

I was 28 when I got a diagnosis ... I had suspected for about five years or more that this was the case but I was afraid of the label until I went "I've had enough I need to know so I can get help". I had to ask for it. Mind you my psychologist at the time was positive I had it she just didn't want to give me a label because she didn't think it always helped people to have a label (a lot of people use it as an excuse rather than as a point to start their journey to understanding and healing).

Anxiety and depression go hand in hand with asperger's from what I've read and I have both in spades. This is due to the fact that asperger's people don't understand why they can't communicate with people normally and they are hyper sensitive to getting things wrong. Both these combined mean the anxiety feeds the depression and the depression feeds the anxiety.

Asperger's people don't have OCD but they do have routines. They are often weird routines ... for instance I usually have a series of three or four light weight quilts and as the weather gets warmer I take them off and as the weather gets cooler I add them. Most people would just swap them out for weather appropriate blankets I guess. Or I have an order to how I wash in the shower and I get really upset if I can't do it in that order. I could see how this gets mistaken for OCD.

I think now days its easier to hand people a pill and send them on their way. Drug companies make money from it, the doctor gets another patient out the door to move onto the next one and so on. I used to take drugs but I lost a lot of things because of the drugs. I'm a highly creative person and without my creativity I may as well go kill myself. The drugs took that from me. They made me a zombie that didn't feel anything. And I think I would rather have the extreme ups and downs of depression and anxiety than give up the parts of me that are most important to me. I don't know you personally but for me the drugs stole pieces of me I didn't want to give up.

 

[Pella]

I have been in therapy for ten years now. I only recently discovered I have asperger's. I am not entirely sure my psych doc is on board with it, but I am certain now that I have it, everything I read about it makes sense to me. But asperger's seems hard for people to understand, and mental health stuff in general is difficult to diagnose, because there is no specific test, and with our troubles with communication it may be more difficult, its hard to put words to what we feel. There also is alot of overlap with symptoms of other mental illnesses and asperger's, and asperger's doesn't seem to be understood all that well. In aspergirls it says something about how we are the pinoneers, anything we learn and pass on to other aspies and NTs will help other aspies in the future.

 

[Aalo]

It makes me sad to hear all of your stories of unsuccessful treatment. Hopefully many could manage their situations.

Even that I now have a diagnosis my new therapist (psychologist, MA) that my uni provides me for free, does not take that into an account. He basically believes that I'm an "school refusal". (He does not think my AS as an excuse thou) He hasn't yet figured it out that I'm somehow strongly refusing going to school because I dislike failing with people, not that I wouldn't want to get a degree for pure laziness.
But I believe every person has some problems with their therapists anyway as thoughts are never that easy. I still go to him for he is free of charge, and pretty nice person.

 

[lostinspace]

I first sought mental health counseling for my condition in 1990 (age 30) after a series of friendships that broke up and left me devastated. This continued for about two or three years, but none of the therapists I worked with were able to help me. I was referred to a psychiatrist who diagnosed me with clinical depression (but not Asperger's or anything related to autism) and prescribed meds that had no effect whatsoever. No one had any clue of how to help me.

I went for help again in 2005 (age 45) for about a year after yet another close friendship blew up, nothing good came out of that either. The problem continues to this day.

 

[Loomis]

Should it take 8 years of psychiatric care to diagnose Aspergers Syndrome?

I wonder if my doctor messed up and misdiagnosed me all this time. I was mainly told that I had Bi-Polar Disorder, ADD, OCD tendencies, Depression (and PTSD which is unrelated to AS and is only due to my childhood abuse) and my doctor never really got into the social issues, and she only recently talked to me about lack of empathy, no eye contact, social awkwardness and everything else that goes along with AS. Did anyone else have a doctor take a long time to specifically address having AS, or does this sound like my doctor messed up all these years and she was focusing on the wrong problem? It was claimed that it was known that I had AS, but I really don't remember any talk about dealing with my problems, she was only interested in medicating me to get rid of as many symptoms as possible.

I don't see her next for a few days, and I don't really think I can directly address this with he to start with because I don't want to compromise our Dr/Patient relationship. I am just curious to see what other people here think.

For anyone that has a professional diagnosis, is it normal for your psychiatrist to take a very long time to get into the details of living with AS and make sure you are aware of your diagnosis; or does it sound to you like she messed up and misdiagnosed me all this time, since I was in her care for the last 8 years?

My wife and I knew there was something unusual about our son's behavior and we started bringing him to mental health professionals when he was about five. We went to the two best, and highly acclaimed, children's mental health clinics in Saint Paul and Minneapolis. Despite repeated attempts to identify his underlying problem he was not accurately diagnosed with ASD until he was 15! It took us 10 years to get it right.

So yes, I think you were misdiagnosed. It is far more common than anyone supposes. Not only Aspergers but many other ailments are missed or erroneously identified as something other than what they truly are.

I believe psychiatrists are especially bad at diagnoses. In my experience they do just what you say: they prescribe medications to address the symptoms you report. That also helps explain why they are so oblivious to ASD; there are very few reports of successful pharmaceutical therapies for autism.

 

[Minuet]

You may have been misdiagnosed - however, AS and autism are both extremely difficult to diagnose because of how much they vary by individual, as well as the fact that almost all of our symptoms could parallel other diagnoses, such as schizophrenia (I've been misdiagnosed with that before).

It's unfortunate that you didn't get a proper diagnosis earlier. If only there was more awareness and education regarding autism. It is better than it has been in the past, but as with many ailments it can be difficult to identify (as Loomis stated).

 

[Peace]

Upon having family troubles, we went to see a counselor. On the third visit, she said that although it was not a diagnosis, she was pretty sure that I had aspergers. This is what began the whole rest of my life.
Were you mis-diagnosed? Probably. But it doesn't much matter now. Learn what you have, and use it well.

 

[Mihael Keehl]

My primary care physician told me she has no doubt that I do have Asperger's but I hide it very, very well. So I am not at all surprised people are having trouble getting diagnosed.

Me exactly. I have only just been diagnosed and i am 18, but beyond a doubt Aspie. I merely know how to hide it well because I have tried to appear "quiet" rather than "different" all my life./

 

[paloftoon]

Hey whyamistillalive, as there are thousands upon thousands of diagnoses if not more, and millions upon millions of subsets, there's no way 1 doctor can think of the correct one(s) easily. This doctor may not have been good for your particular case, but that's not to say he's/she's not proficient in other fields.

Each doctor is going to specialize in some way, and if you have the money and time, you can see more than 1 doctor if necessary. Your other best bet is to do your own research and seek out people who specialize in what you think you might have to.