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Should I bother with a formal diagnosis?

mama_lotus

mama_lotus

Well-Known Member
I am in my mid-30s. I'm married, I'm a mom, I own and run my own successful part-time business. I am being treated for "bipolar disorder" with sub therapeutic levels of meds.

My AQ is 40. My RAADS-R score was 150. The other "Aspie Quiz" online scored me a 148 and a 120, because I took it twice trying to downplay some things.

I am wondering what others have gained (or not) from a formal dx.
 
So, to be obnoxious and talk to myself here, I read over the new DSM-5 changes last night and I don't know that I'd even qualify for a formal diagnosis. How has the removal of a true "Asperger's Syndrome" diagnosis changed (or not) your life?
 
The changes implemented by the DSM-V haven't affected me at all. I may be one of the more fortunate people, but nothing has really changed for me.

I was formally diagnosed fairly quickly, so I didn't spend a whole lot of time wondering whether I was on the spectrum. I wasn't even aware I had autism before the diagnosis. I've gained that much, anyway---being able to understand that many of the awkward moments in my life didn't happen because of anything I purposefully did helped me cope with some emotional baggage.
 
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Were you diagnosed before or after the changes? As I understand it, to get a diagnosis of autism, your life has to be severely impacted. Am I wrong in that? I don't know that right now my life is severely impacted. It certainly has been in the past, but currently, on the surface, I got it together. More or less. You know, as much as anyone ever does, once you get down to it. The stemming bulletpoint? Yeah. I got that one covered. I am the queen of that.
 
mama_lotus said:
I am wondering what others have gained (or not) from a formal dx.
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That's a good question.

Whether or not being formally diagnosed has impacted them in seeking employment, or holding onto the job they already have. Or how a formal diagnosis might relate to eligibility of government benefits.

Beyond these issues, I don't see critical reasons for seeking a formal diagnosis other than personal gratification or perhaps better understanding from spouses, families and friends who might only accept confirmation from a medical professional. Even then, there are no guarantees of how loved ones will take such news.
 
My dad thinks he might be an aspie as he can relate to what I go through, but he says it's not worth a diagnosis at his current age because there's nothing he'll gain out of it ...

Also he has this idea that he missed out on a diagnosis because just consider it as "having character" back then. I wish the world would start seeing us as unique characters :)
 
mama_lotus said:
Were you diagnosed before or after the changes? As I understand it, to get a diagnosis of autism, your life has to be severely impacted. Am I wrong in that?
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I was diagnosed before the new edition of the DSM was released. It happened after I had some social and emotional trouble at college, so . . . you could say that my life was severely impacted. I'm probably understating it for the benefit of the thread (and also because that period of my life was quite frightening).
 
I completely understand. My life was in significant trouble in college, too. :( That's why this whole diagnosis thing kinda seems like a crock to me. Using the current DSM, I could have been diagnosed in high school or college. But not now. Using the DSM-IV, I could have been diagnosed now. Stupid.
 
I self diagnosed myself by an online test while in my early 60s--I am now 70. I am not able to spend the money for an official diagnosis but I still would like one. I would appreciate a professional tell me I am correct in my self diagnosis and I would also like to be able to tell others that my diagnosis is official and pronounced by a professional. I am an Aspie and want official answers and diagnoses. I am retired and don't need a confirmed diagnosis to protect myself from discrimination. However, I would feel better about myself with a professional diagnosis. I simply want proof.
 
I have just got an official diagnosis last month in the UK. I am "ASC" which stands for "Autistic Spectrum Condition". But, the doc who diagnosed me carried on using the term Aspergers Syndrome, and I dont think the DSM is a rule book, more a guideline. So it seems that the real world professionals also see the stupidity of dsmV removing a well established descriptor!!

Has it helped me? Yep. I've already had 40 years of disasters relating to not knowing why I was different (and assuming all the wrongs things as to why). At least now I know. It is very very liberating to know my own mind. I've lost my job, my house and all my money because of not knowing. At least now I understand why this has happened. Small consolation, but a consolation nevertheless. :)
 
My story is somewhat interesting, at least to me. Years ago I was in one of my conspiratorial moods and playing around the Web for info on vaccinations and came across information on Autism and then Aspergers. I was interested in this because of my newborn son. I didn't buy the connection but started to suspect that I was an Aspie. I told my wife about this and didn't get much reaction, I just assumed that she kind of blew it off as me trying to come up with an excuse to explain my social issues. Fast forward 7 or 8 years and my son is having issues with ADHD and focusing and the doctors on our insurance plans aren't getting anywhere with him. We took him to someone who was recommended to us and my wife takes him there and tells me that the specialist suspects that my son may have "that thing you think you have." I didn't even remember researching Aspergers, I had kind of forgotten about it. I asked her "what thing I thought I had?" anyway we went back a few times to the specialist and hundreds of dollars later my son had a diagnosis and the doctor believed that I was probably an Aspie too. I haven't pursued an official diagnosis for myself, perhaps some day I will, I'm in my 50's so I don't see it as a priority, I have taken all the online self tests and am convinced that I am what I am. I may go to a therapist to do something about my work related anxiety and if it comes up, I will pursue it. Anyway that's my story, which is still a work in progress, I'd like a diagnosis, but only if I can get it through my insurance, I don't see it as important enough to spend lots of money on as I did with my son.
 
Your story is very interesting. My sons are 3 and 5 but I see ADHD in one's future and AS in the other's. My husband is ADHD and I'm whatever I am so there you go. I also get in conspiratorial moods. ;-)
 
mama_lotus: "I am in my mid-30s. I'm married, I'm a mom, I own and run my own successful part-time business."

I asked myself what might be gained and what might be lost by pursuing a diagnosis. I 'discovered' Asperger's Syndrome by accident in 2012 while reading online blogs, found and took online tests, am satisfied with the results. I am 70-something, am retired and have a functioning life. My answer for myself is that a diagnosis would cost much money and there is nothing to gain. There are possibilities of things to lose. It is more than enough for me that I finally have an answer to why I had so much difficulty getting along in life. It also helps me to readjust to improve my interaction with people.

I would think that for yourself you have sufficient answers. Your children might benefit from a diagnosis while they are in school. I don't know about your Bipolar. That is something to discuss with your doctors. Otherwise, it sounds like your life is working as well as anyone's and perhaps better than many who are not on the Spectrum and who do not have any definable causative factors limiting their ability to do well. Blessings.
 
Tarragon said:
Has it helped me? Yep. I've already had 40 years of disasters relating to not knowing why I was different (and assuming all the wrongs things as to why). At least now I know. It is very very liberating to know my own mind. I've lost my job, my house and all my money because of not knowing. At least now I understand why this has happened. Small consolation, but a consolation nevertheless. :)
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I would agree, too, that it might have helped me to know twenty or thirty years ago what I was dealing with. I've been married and divorced twice, I've floated from job to job, and one place to another, in an effort to find somewhere to belong. But I don't think that will ever happen in this world. Today, I live on the street and have creditors waiting to swoop down the minute I start earning a paycheck again. Most people wouldn't opt for homelessness, but as I explained to my therapist, it is the one way of life that seems to "work" for me.
 
You say you are diagnosed bipolar but maybe you are not bipolar just on the autism spectrum instead. The elimination of Asperger's, in my opinion, was a mistake and I suspect more political than reality based. Just like the elimination of narcissistic personality disorder; how can that have happened? I have heard it said NPD was eliminated because so many shrinks are narcissists.
 
Loomis said:
You say you are diagnosed bipolar but maybe you are not bipolar just on the autism spectrum instead. The elimination of Asperger's, in my opinion, was a mistake and I suspect more political than reality based. Just like the elimination of narcissistic personality disorder; how can that have happened? I have heard it said NPD was eliminated because so many shrinks are narcissists.
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This is what my husband thinks, and he has known me for 13 years.

I really wonder why they eliminated Asperger's.
 
Hi I got my diagnosis today. Yes, it is worth the hassle. I feel releived and content that I have finally got some validation for my struggles and some recognition for my (unusual) strengths. Now that I have the label, I also have access to more appropriate support for sensory issues, learning issues and other stuff that I dont really know about yet.

For me, the diagnosis means that I can rest at long last and after much soul searching and years of investigations, years and years of feeling trapped in circles within the mental health system, each psychiatrist giving me a different diagnosis.
 
S0093679 said:
Hi I got my diagnosis today. Yes, it is worth the hassle. I feel releived and content that I have finally got some validation for my struggles and some recognition for my (unusual) strengths. Now that I have the label, I also have access to more appropriate support for sensory issues, learning issues and other stuff that I dont really know about yet.

For me, the diagnosis means that I can rest at long last and after much soul searching and years of investigations, years and years of feeling trapped in circles within the mental health system, each psychiatrist giving me a different diagnosis.
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That's great, I'm happy to hear that! Maybe you've given me some motivation to get my own diagnosis.
 
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