Hope for the undiagnosed: Dx doesn't *have* to be hard-going

[Slithytoves]

I've always thought I was just a weird NT, but for the last month or so, Harrison, Nadador, and Vanilla were convinced I was likely an Aspie. I have Major Depressive Disorder, but I always knew there was something else going on. Doctor after doctor could never put a finger on it. But the Aspiedar of my AC associates was apparently right on target.

At Harrison's suggestion, I took the RAADS-R at home. To my surprise, my score was 185/200, a little higher than his own score of 180. For the sake of settling the matter "for the record", I called the psychiatrist who has been treating my MDD for the past couple of years, and she agreed to assess me immediately. I spent some hours with her today, presenting my reasons and supporting documentation for suspecting I have AS, taking a digital test, sitting through two hours of interviewing, and going over the DSM-IV and V criteria in exhaustive detail. Less than a week after I took the RAADS-R just to satisfy my curiosity, I am now officially diagnosed with Asperger's. She put it on my master diagnosis list before I even left the office. What. The. Heck?

Now, bear in mind I didn't go in with an eye toward seeking benefits for ASD-related disability. Had I done so, the process would have been more involved. I did, however, expect to get much more resistance than I found about getting assessed, as I'm an extrovert, so I don't align strongly in terms of the all-powerful Section A diagnostic criteria for the DSM-V description of Autism Spectrum Disorder. Luckily, my doctor is a very smart woman. She realizes that my age (44) and my extrovert nature are important factors in determining how I compare to the current criteria. She gave me a very thorough grilling, but she was not such a slave to the popular perception of Asperger's that she couldn't make her own, well-informed judgment.

My doctor gave me hope today, which is why I have posted this here.

There are clinical professionals out there who aren't lazy, apathetic, or dismissive, and who believe that patient self-report is an essential component of diagnosis.

There are clinical professionals who believe that the extrovert Aspie exists, and is neglected by the medical profession and the current diagnostic criteria.

There are clinical professionals who have the sense to realize that an adult Aspie (introvert or extrovert) has had a long time to develop a "mask" of adaptations that may cause them to appear NT when they aren't.

What's more, while she had to use the term "Autism Spectrum Disorder" for coding purposes, the diagnosis reads in my file as "Asperger's Disorder" ("Syndrome" is falling out of use). She isn't satisfied that just lumping us all together is wise or accurate. She wanted to allow me to be what I am.

If anybody has any questions about what information I brought to help get me diagnosed, I'll be happy to answer. Other questions and comments are also welcome, of course.

So when do I get my Aspie card?

 

[zurb]

If anybody has any questions about what information I brought to help get me diagnosed, I'll be happy to answer. Other questions and comments are also welcome, of course.

My GP is starting to push for me to get official diagnosis - her job is to find the good clinician. My greatest fear is because I am introverted, and suffer performance anxiety and selective mutism, all my reasoning for thinking I am an aspie will stay outside the room when I step through the door. Anything further you can share about how you prepared, and what you presented would be appreciated.

 

[Slithytoves]

My GP is starting to push for me to get official diagnosis - her job is to find the good clinician. My greatest fear is because I am introverted, and suffer performance anxiety and selective mutism, all my reasoning for thinking I am an aspie will stay outside the room when I step through the door. Anything further you can share about how you prepared, and what you presented would be appreciated.

Sure!

I printed out not only the results of the RAADS-R that I took online, but also the page (linked at the bottom of the results) that describes the metric. The second part helped my doctor understand the score since she wasn't familiar with RAADS-R. She went online and reviewed the questions while I was in the office. She said having my results and information about the test itself gave her good reason to investigate further.

In my case, I brought an article about extrovert Aspies, in case she wasn't familiar. I also brought in a few photocopies from Tony Attwood's The Complete Guide to Asperger's Syndrome, with especially relevant items highlighted and some brief, typed notes on how I fit the things I featured. I also typed up a bulleted summary of my experience of AS symptoms in childhood as well as present-day life, what adaptations I have made that may make me seem a bit less "obvious" now, and a photocopy of the DSM-V criteria with personal notes on how I fit. Since I know children are generally given an IQ test as part of assessment, I brought a copy of scores from the two tests I'd taken in the past (Weschsler and Stanford-Binet), though she didn't really end up needing them. She did say some doctors still want that sort of thing, though. The "why" is a mystery to me.

My doctor said the fact that I had brought her evidence, demonstrating the work and thought I'd put in, made a very big difference in her taking me seriously and helped her a lot in her determination. If you go to someone you haven't seen before, you may want to send or hand-deliver your data ahead of the appointment with a cover letter explaining why you've done it. I know this doctor well, so she was fine with me just bringing everything to the assessment.

I really hope your experience goes well for you, Zurb. I know a lot of adults have a very hard time getting diagnosed. I was very nervous that I would be dismissed or discounted, even though I've known this psychiatrist for years. Letting your evidence speak for you might be the very best strategy you can use. Good luck!

 

[MicroWeiss]

I've always thought I was just a weird NT, but for the last month or so, Harrison, Nadador, and Vanilla were convinced I was likely an Aspie. I have Major Depressive Disorder, but I always knew there was something else going on. Doctor after doctor could never put a finger on it. But the Aspiedar of my AC associates was apparently right on target.

At Harrison's suggestion, I took the RAADS-R at home. To my surprise, my score was 185/200, a little higher than his own score of 180. For the sake of settling the matter "for the record", I called the psychiatrist who has been treating my MDD for the past couple of years, and she agreed to assess me immediately. I spent some hours with her today, presenting my reasons and supporting documentation for suspecting I have AS, taking a digital test, sitting through two hours of interviewing, and going over the DSM-IV and V criteria in exhaustive detail. Less than a week after I took the RAADS-R just to satisfy my curiosity, I am now officially diagnosed with Asperger's. She put it on my master diagnosis list before I even left the office. What. The. Heck?

Now, bear in mind I didn't go in with an eye toward seeking benefits for ASD-related disability. Had I done so, the process would have been more involved. I did, however, expect to get much more resistance than I found about getting assessed, as I'm an extrovert, so I don't align strongly in terms of the all-powerful Section A diagnostic criteria for the DSM-V description of Autism Spectrum Disorder. Luckily, my doctor is a very smart woman. She realizes that my age (44) and my extrovert nature are important factors in determining how I compare to the current criteria. She gave me a very thorough grilling, but she was not such a slave to the popular perception of Asperger's that she couldn't make her own, well-informed judgment.

My doctor gave me hope today, which is why I have posted this here.

There are clinical professionals out there who aren't lazy, apathetic, or dismissive, and who believe that patient self-report is an essential component of diagnosis.

There are clinical professionals who believe that the extrovert Aspie exists, and is neglected by the medical profession and the current diagnostic criteria.

There are clinical professionals who have the sense to realize that an adult Aspie (introvert or extrovert) has had a long time to develop a "mask" of adaptations that may cause them to appear NT when they aren't.

What's more, while she had to use the term "Autism Spectrum Disorder" for coding purposes, the diagnosis reads in my file as "Asperger's Disorder" ("Syndrome" is falling out of use). She isn't satisfied that just lumping us all together is wise or accurate. She wanted to allow me to be what I am.

If anybody has any questions about what information I brought to help get me diagnosed, I'll be happy to answer. Other questions and comments are also welcome, of course.

So when do I get my Aspie card?

I'm mainly wondering where to get diagnosed. I called one psychiatric assessment office in town and they said they only assessed children. I feel stupid telling people I "probably" have aspergers, or something like it. I scored 144 on the test you mentioned. But I also spend hours stimming. I've never really felt normal. A diagnosis might help me to have something to say to people who get annoyed at me for behaviors which feel completely normal to me, but to them appear to be willfully acts intended to tick them off.

 

[Leej07]

I'm wondering if I should get diagnosed... I scored quite high on a test myself, but no one I try to tell in my family gives me any serious consideration of the possible.

 

[Leej07]

I just took the RAADS-R test. Unsurprisingly, my score was high like always. The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R)

 

[Spiller]

My GP is starting to push for me to get official diagnosis - her job is to find the good clinician. My greatest fear is because I am introverted, and suffer performance anxiety and selective mutism, all my reasoning for thinking I am an aspie will stay outside the room when I step through the door. Anything further you can share about how you prepared, and what you presented would be appreciated.

I took every test on-line I could find, spent some time writing up a personal history and detailed what I've done to help myself and the medications, prescribed and otherwise I've used. I printed two copies, one for me to refer to and one for them.. also, I take fresh copies every time I go, as they have a tendency to lose them.
My Community Mental Health Assessor was impressed by my knowledge.. and I'll see what the psychologist says tomorrow

 

[Slithytoves]

I'm mainly wondering where to get diagnosed. I called one psychiatric assessment office in town and they said they only assessed children. I feel stupid telling people I "probably" have aspergers, or something like it. I scored 144 on the test you mentioned. But I also spend hours stimming. I've never really felt normal. A diagnosis might help me to have something to say to people who get annoyed at me for behaviors which feel completely normal to me, but to them appear to be willfully acts intended to tick them off.

Where are you located, MicroWeiss?

I can see how having a diagnosis in your back pocket could be helpful if you feel uncomfortable explaining your behaviors to people without one. That's an excellent reason for getting diagnosed that hadn't really occurred to me.

Something else I was wondering about today, for people living in the U.S., is how hard it is to get insurance companies to agree to pay for diagnosis. It might be easy enough to get a referral from a GP, but then you have to justify it to your third party insurer. I got to skip that step by having an existing relationship with a psychiatrist who is qualified to do the dx.

I'm wondering if I should get diagnosed... I scored quite high on a test myself, but no one I try to tell in my family gives me any serious consideration of the possible.

I'm so sorry your family hasn't taken the possibility seriously. I wonder why that's such a common problem, especially when family members must surely witness behaviors that don't seem entirely "normal".

I haven't had any obvious "classic" symptoms of AS in adulthood, but my family does know I've been struggling to understand myself for a long time. They had no trouble accepting the idea that I could be (and now am) an Aspie. I kind of feel bad that this all went so smoothly for me. My stepdad is a physician and my mom is a nurse, so perhaps that helped them be open to the idea of any diagnosis as an explanation for behavior. I guess a lot of less-informed people must have a problem with the "medicalization of deviance" that had become so common in recent years, for ideological or philosophical reasons. They'd rather just think a person has a weak character and needs to just "get over it" and conform. How nice!

Good luck with whatever you decide to do.

I took every test on-line I could find, spent some time writing up a personal history and detailed what I've done to help myself and the medications, prescribed and otherwise I've used. I printed two copies, one for me to refer to and one for them.. also, I take fresh copies every time I go, as they have a tendency to lose them.
My Community Mental Health Assessor was impressed by my knowledge.. and I'll see what the psychologist says tomorrow

Great idea about bringing two copies of everything. I got the same response from my doc; she was impressed that I knew what I was talking about. I think that makes a huge difference. If I were a doctor, I wouldn't be as quick to take a person seriously if they just came in with a question and no evidence of having done any personal research. I asked my stepdad about that, as he's an Internist who is often faced with patients coming to him with suspected illnesses, with varying degrees of preparation. He said it does have a psychological impact on him as a physician when a patient has done some legwork to investigate their own suspicions. It also provides a very good basis for doctor-patient discussion.

What is your appointment tomorrow about?

 

[MicroWeiss]

Where are you located, MicroWeiss?

I can see how having a diagnosis in your back pocket could be helpful if you feel uncomfortable explaining your behaviors to people without one. That's an excellent reason for getting diagnosed that hadn't really occurred to me.

Something else I was wondering about today, for people living in the U.S., is how hard it is to get insurance companies to agree to pay for diagnosis. It might be easy enough to get a referral from a GP, but then you have to justify it to your third party insurer. I got to skip that step by having an existing relationship with a psychiatrist who is qualified to do the dx.

I live in Tulsa, OK. It's a big city, but fairly redneck. I think many people go undiagnosed for mental health issues here. I'm happy that you could get a diagnosis. I know I really respected one guy who had ADHD when he used to tell everyone that he was diagnosed, because otherwise it would have been easy to get frustrated with him in many aspects of his work. In fact, some people got frustrated with him anyway. But I think he did his part in offering the information, if someone wasn't going to accept him for who he was, then it was on them. And I've seen a guy who I suspect had ADHD who never said anything, and I think he went through hell trying to cover for himself. Openness seems liberating.

 

[Slithytoves]

I live in Tulsa, OK. It's a big city, but fairly redneck. I think many people go undiagnosed for mental health issues here. I'm happy that you could get a diagnosis.

Thanks.

Have you contacted Autism Center of Tulsa for a list of ASD-friendly doctors? ACT appears to provide services for both kids and adults, so maybe they some ideas for who you should see: Home

I'm from New York, but I now live in South Carolina (moving to the UK soon). There's a lot more stigma here around mental illness, learning disabilities, and developmental disorders as compared to where I come from. Local branches of organizations like NAMI, etc. are small and poorly run, and there is very little advocacy happening. Location is everything, sadly. I guess the resistance to seeking diagnosis for mental health issues goes along with the "bootstrapper" mentality/Protestant work ethic that prevails so strongly in red states. It's great if you're doing well in life, but if you have any significant problems you can't solve by sheer force of will, you're kinda screwed living in those places. From what I've seen, anyway, there's much more social pressure to keep differences hidden.

Having made that b r o a d generalization, Autism Center of Tulsa looks like a great resource!

 

[Progster]

I was diagnosed fairly quickly and easily too. I was expecting a long and hard battle, but I was diagnosed in the UK after one referral by a GP to a psychiatrist for a diagnostic assessment. He seemed to be satisfied that I met the criteria after the first session. I was told of my diagnosis straight away, and a written report followed.

 

[Ellylldan]

Great idea about bringing two copies of everything. I got the same response from my doc; she was impressed that I knew what I was talking about. I think that makes a huge difference. If I were a doctor, I wouldn't be as quick to take a person seriously if they just came in with a question and no evidence of having done any personal research.

Hehe, this was the reason why a psychiatrist nearly made fun of me when I tried to get diagnosed a few months ago, in September... I brought my online tests results printed out and a list of my own traits that I thought could indicate a possibility of my belonging to the spectrum. Well, I was accused of reading too much on internet and making up a diagnosis for myself, and also told that, as I am "an intelligent person and I feel everything very deeply", I cannot possibly be an Aspie. Sad story. Ironically, I was so "non-Aspie" that I had a major meltdown when I came home after that visit.. Needless to say, I got totally afraid to see any other doctor out of fear to be ridiculed again, even if I still thought I could be an Aspie.

At last I took all my courage and yesterday went to a psychologist to talk about a possibility of having an assessment. He was very nice, listened to me and when I mentioned my first unlucky experience, said that actually it would be very helpful for him to have that kind of information. He also was positively surprised about my knowledge on the subject. He said that he already noticed some traits in me and agreed to do the assessment. So next week I'm having a first session! I don't know how it will go, I'm afraid a little (well, more than little, to say the truth..) to turn out to be not an Aspie but some freak.. I just know that for now I feel happy and excited: the first step is done!

Slithytoves, congratulations on your diagnosis! I'm happy that everything went so smooth for you, don't feel bad because of it! It's good to know there are real professionals in the world able to actually think and do their job. It means there is hope.

And I want to say to everyone who is planning to be diagnosed: don't hesitate taking your test results and any other information that you think can help, and if your doctor tells you something against it or makes fun of you - don't get discouraged and change the doctor without a second thought!

I wish you all to meet only good and nice doctors on your way!

 

[MicroWeiss]

Thanks.

Have you contacted Autism Center of Tulsa for a list of ASD-friendly doctors? ACT appears to provide services for both kids and adults, so maybe they some ideas for who you should see: Home

I'm from New York, but I now live in South Carolina (moving to the UK soon). There's a lot more stigma here around mental illness, learning disabilities, and developmental disorders as compared to where I come from. Local branches of organizations like NAMI, etc. are small and poorly run, and there is very little advocacy happening. Location is everything, sadly. I guess the resistance to seeking diagnosis for mental health issues goes along with the "bootstrapper" mentality/Protestant work ethic that prevails so strongly in red states. It's great if you're doing well in life, but if you have any significant problems you can't solve by sheer force of will, you're kinda screwed living in those places. From what I've seen, anyway, there's much more social pressure to keep differences hidden.

Having made that b r o a d generalization, Autism Center of Tulsa looks like a great resource!

Well now I have. I am also contacting a university psychology department. I will see if I get any response. Reaching out to people isn't something I do naturally, so thank you for the encouragement. I am actually protestant and have that type of work ethic, but my life seems to be more and more leaning toward periods of hard work, followed by breakdowns. A flip gets switched from a state where nothing bothers me to a state where everything bothers me, I've developed a 'c'est la vie' attitude about my breakdowns. Most of my coworkers still respect me and will communicate with me or recommend me at whatever company they are at, though I've burned a few bridges on purpose.

 

[Leej07]

With regards to my family not believing me, I cannot fault them, alas. As I was professionally diagnosed with ADHD at a young age, all my eccentricities are naturally blamed on ADHD. I know I have ADHD. I have the inattention, the hyperactivity... but there's so much more I see in myself that does *not* fit ADHD.

 

[Spiller]

Great idea about bringing two copies of everything. I got the same response from my doc; she was impressed that I knew what I was talking about. I think that makes a huge difference. If I were a doctor, I wouldn't be as quick to take a person seriously if they just came in with a question and no evidence of having done any personal research. I asked my stepdad about that, as he's an Internist who is often faced with patients coming to him with suspected illnesses, with varying degrees of preparation. He said it does have a psychological impact on him as a physician when a patient has done some legwork to investigate their own suspicions. It also provides a very good basis for doctor-patient discussion.

What is your appointment tomorrow about?

The prelude to an official diagnosis, I hope.. I finally impressed my 3rd GP with my initial research into AS/ASD, who then referred me to the Mental Health team.. I knowledgably intimidated one Mental Health assessor into denying anything was wrong with me.. a month later a second assessor totally agreed and referred me to this psychologist or psychiatrist (not sure).
So bear in mind that knowledge is a mixed bag, depending on who you get to see, but plug on! As the girl in the Loreal advert says, "You're worth it!"

 

[MicroWeiss]

With regards to my family not believing me, I cannot fault them, alas. As I was professionally diagnosed with ADHD at a young age, all my eccentricities are naturally blamed on ADHD. I know I have ADHD. I have the inattention, the hyperactivity... but there's so much more I see in myself that does *not* fit ADHD.

I don't fit into having ADHD, though I wasn't a bright kid and I ignored a lot of people. I've seen people who not have ADHD display a similar lack of focus when they are going through stressful periods. Even myself. Last year I had a lot of work stress, including one of my panic attack triggers, leading me to a breakdown in which I lost all focus. I think I acted like I had ADHD. I couldn't sit still at my desk, I would jump up and talk to coworkers, pace around the office, trying to calm myself. I also couldn't sleep. Maybe I was actually focused on looking for external sources of danger that I couldn't make room in my mind for anything else. Anxiety and stress are probably not unfocused states, but the symptoms can remind me of ADHD.

 

[Spiller]

The prelude to an official diagnosis, I hope.. I finally impressed my 3rd GP with my initial research into AS/ASD, who then referred me to the Mental Health team.. I knowledgably intimidated one Mental Health assessor into denying anything was wrong with me.. a month later a second assessor totally agreed and referred me to this psychologist or psychiatrist (not sure).
So bear in mind that knowledge is a mixed bag, depending on who you get to see, but plug on! As the girl in the Loreal advert says, "You're worth it!"

Update, for the sake of completeness.. I have to talk to the Drug Addiction dept. as I use medical cannabis, stop all my self-medications for two weeks and if I'm still alive after that, they'll talk to me about an AS diagnosis I can but try!

 

[Slithytoves]

He seemed to be satisfied that I met the criteria after the first session. I was told of my diagnosis straight away, and a written report followed.

I smiled when I read this, because on one hand, it's like, "GREAT! That way easy!" On the other hand, it's like, "Whoa! I'm that obvious?" I had a moment like that, at least. It seemed like my doctor couldn't wait to get me on the books.

"There's one! Quick, label it before it gets away!"

Well, I was accused of reading too much on internet and making up a diagnosis for myself, and also told that, as I am "an intelligent person and I feel everything very deeply", I cannot possibly be an Aspie. Sad story. Ironically, I was so "non-Aspie" that I had a major meltdown when I came home after that visit.

I've had this happen with other doctors for other things, both physical and mental. It's a catch-22. Come in with no idea of what's going on and your doctor can miss something or blow you off. Come in prepared, and you're a hypochondriac who spends too much time on the Interwebs. Can we get a happy medium, please? I'm happy for you that your second try is yielding better results. Thanks for the congrats on my diagnosis. I didn't think it would change anything for me, but I was wrong. It changes everything! I've been able to go back through all of my failed relationships, bad job experiences, social failings, etc., and I see it all with such clarity now. It's an incredible relief.

Reaching out to people isn't something I do naturally, so thank you for the encouragement. I am actually protestant and have that type of work ethic,

You're very welcome. I apologise if I offended you in any way with my comment about the Protestant Work Ethic. I'm a Jew, but I have it, too. It's not the personal principle that bugs me; that's admirable. It's the way it's used as a social and political tool by some people as a group.

I really hope you get a response soon so you can get going with an assessment.

With regards to my family not believing me, I cannot fault them, alas. As I was professionally diagnosed with ADHD at a young age, all my eccentricities are naturally blamed on ADHD. I know I have ADHD. I have the inattention, the hyperactivity... but there's so much more I see in myself that does *not* fit ADHD.

I'm sorry it's been so complicated. It seems like that happens to a lot of people with comorbidity. I hope eventually they will see you more clearly.

The prelude to an official diagnosis, I hope.. I finally impressed my 3rd GP with my initial research into AS/ASD, who then referred me to the Mental Health team.. I knowledgably intimidated one Mental Health assessor into denying anything was wrong with me..

"Prelude to an official diagnosis". Is that Mozart? Bach? It really should be a piece of music, truly; the anthem of adult Asperger's.

Knowledgeable intimidation of a medical professional feels awesome, doesn't it? We should all have a chance or two at that. It's terrific for the self-esteem.

So how is your little "quit" coming along?

 

[Spiller]

.."There's one! Quick, label it before it gets away!" ..

In the UK, I think, rather than collecting us, they're scared of us.. or at least, of having to acknowledge a condition they don't want to admit they know nothing about

I've not started the 'quit' yet, gotta make the appointment, talk to the Drugs team & hope they appreciate the medical benefits of MMJ, rather than just referring to that old UK study that erroneously directly linked any use of cannabis with psychosis (sorry, I don't want to get into the old debate here that's another thread) that those clinicians 'in the don't-know' keep referring to.
I've tested it experimentally over several years, different strains, dosages including abstenance.. and the latter was not a pretty sight or experience
I'll keep ya posted though

 

[Leej07]

Aye, as a person with comorbid conditions, even I did not see it, for most of my life. I was just a guy with ADHD, living his life, dealing with my attention problems, and forgetfulness. I knew about autism and Aspergers, but I always thought, "That's not me", I'm "normal". But, it kinda just crashed on my head one day about two years ago. I'm still not sure if I'm right, though.