Finally a diagnosis that fits (Only took 50 plus years)

[Greigharts]

Hi Everyone my name is Julian

I'm finally out of the fog of a 3 year depression and got a handle on my other "issues". Being on new meds and working with good doctors at last, is great!

But ...

Finally knowing I'm on the spectrum is the BEST!!! (To bad Aspergers is no longer in the DSM V, it really fits.) Up until last year, if you said Autism I would see an image of Temple Grandin in my head and say that's not me.

Note: The irony is I had been joking for decades that if you took and autistic and turned the volume way down on their autism, you would get me. I didn't have a clue.

I am now on the journey of education and hopefully understanding on why I don't see things like everybody else. Never have.

What makes going down this path of autism exploration even harder is that I'm over 50. Nobody in my area really knows what to do with me or they think I'm trying to get financial aid.

The Autism has brought back a real blast from the past. I'm minority and like many women, my Autism, ADHD, Depression, PD, mild OCD and dyslexia, was seen as other things when I was young. (Now all but the Autism has been "Officially" diagnosed.)

My parents were told I was being intentionally uncooperative, bad or retarded. (In spite of a high IQ.)

As an adult I was finally started to get diagnosed, but had to work for each one. Could never get across what I needed.

Quote: "Clues, Watson. I need clues! Without them my mind is like a racing engine, eventually cracking itself to pieces!" ~ Sherlock Holmes

I just wanted information on what was going on inside my head. I need to "see" everything before I can solve puzzles. For example: I need you tell me your address, BEFORE you give me directions on how to get there. Do it the other way around and I can't make sense of what you are telling me.

Anyway, I've been around long enough to know how to come across "normal" and when I'm overwhelmed and the mask slips (which happened only yesterday) I have a job where I can "disappear" for a few days when needed. (Artist/Computer geek)

But my ability to "fit in" has caused problems for me now, when talking to doctors. "You're not on the spectrum, You don't have a problem with eye contact, you have a sense of humor. You've not been unemployed........etc."

Maybe that's because, I don't know... I have a high IQ and have been on the planet for over half a century.

My last psychiatrist said I probably was on the spectrum but, "...It's now negatively affecting your life, so you probably won't get the diagnosis."

Of course I was so flustered--by what I saw at the time as an illogical statement coming from a doctor--I couldn't process the moment fast enough and respond verbally so just shut down and went silent, nodding my head like an idiot.

I couldn't tell him that for me knowledge and understanding is as powerful as any drug or medication. That it is by the use of my reason, that I have made it this far in life; how I figured out how to "kinda" read how people want me to emotionally interact in specific situations. How I created scripts of what to say, practiced in the mirror to "fix" my expressions, found new ways to stem (didn't know the word when I was a teen) and to melt down without it being seen.

I wanted to say "...so I'm being punished because I was smart enough to "simulate" being like everyone else? Because I didn't want to live down to the stereotype of being mentally ill?

Anyway Sorry, I started reliving that event in my head and the frustration came back

I need some advice:

1. Anyone have advice on getting an "official" diagnosis as an older adult?
   
2. What process did you go through and how long did it take?
   
3. Should I even try? I've met other Aspies who say I'm and "so on the spectrum".
4. I think I need one for credibility, because I would like to create a series art projects around the issue of adults with neurological issues who hide in plain sight.

Thanks
Julian


Postscript: please forgive length, spelling, and the general meandering of this introduction.

 

[StephF]

Hi Julian,

I'm in my mid 50s and I only recently got my diagnosis. For years I had been "bouncing" around the mental health system and ended up with a psychologist who suggested Cognitive Analytical Therapy (CAT).

By the end she said "I wonder if you might have Asperger's" and asked me if I wanted to take the Baron Cohen "Autism Quotient" test and I scored up in the fourties.

She referred me and after a looong waiting list I got seen, assessed over two whole days and here I am.

The mental health NHS trust in my area does not use the DSM-V, instead they use the ICD-10 (International Classification of Diseases). This meant that I got a diagnosis of Asperger's instead of the generic Autism Spectrum Disorder.

If you want an idea of whether you might be on the spectrum then perhaps google for "autism quotient test" and also " Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R)".

I hope this helps. Good luck and welcome to the forums.

 

[clg114]

I was diagnosed with Asperger's Syndrome 8 years ago when I was 62 years old, so my story is similar to yours. I had known since I have had memories that I was different from most people. I just did not know how or why. I first heard of AS while watching a documentary about it when I was 60 years old. Much to my surprise, it sounded like they were talking about me. I researched AS for two years and was pretty much convinced that I had it. My life style was pretty well set by then and I did not need any kind of help, but I really wanted to know whether or not I had AS. I got my GP to refer me to doctor with experience with AS. I went to see him three times, the first time he just talked with me and asked questions. After that I was given several tests. On the third visit I was given my diagnosis of Asperger's Syndrome, using the DSM-4 which was the current criteria at that time. I does not sound like you need a diagnosis, but if you want to know for sure then get one. If you are in the US, you will be diagnosed with the criteria from the DSM-5. If so, your diagnosis will not be AS. It is likely that it would be ASD, level 1. Good luck and welcome to AC, I think you will like it here.

 

[Vinca]

Hi Julian/Greigharts, and welcome

That it is by the use of my reason, that I have made it this far in life; how I figured out how to "kinda" read how people want me to emotionally interact in specific situations. How I created scripts of what to say, practiced in the mirror to "fix" my expressions, found new ways to stem (didn't know the word when I was a teen) and to melt down without it being seen.

I can really identify with what you have said. My brain works overtime assessing others during social interaction and formulating responses as though it's a puzzle, rather than being able to naturally read people and interact.

I haven't practiced in the mirror to fix my expressions, but think I may try this!

 

[Astroganga]

Welcome I am 34 and just been referred for assessment now. A lot of your experiences resonate with mine. As for seeking a formal diagnosis, how to go about this varies in different countries. I am in the uk and am seeking diagnosis as well, mainly for closure and peace of mind.

 

[Elemental]

Welcome to our community Greigharts, can relate to a lot of what you wrote, being one us vintage spectrumite on here

 

[Greigharts]

Hi Julian,

I'm in my mid 50s and I only recently got my diagnosis. For years I had been "bouncing" around the mental health system and ended up with a psychologist who suggested Cognitive Analytical Therapy (CAT).

By the end she said "I wonder if you might have Asperger's" and asked me if I wanted to take the Baron Cohen "Autism Quotient" test and I scored up in the fourties.

She referred me and after a looong waiting list I got seen, assessed over two whole days and here I am.

The mental health NHS trust in my area does not use the DSM-V, instead they use the ICD-10 (International Classification of Diseases). This meant that I got a diagnosis of Asperger's instead of the generic Autism Spectrum Disorder.

If you want an idea of whether you might be on the spectrum then perhaps google for "autism quotient test" and also " Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R)".

I hope this helps. Good luck and welcome to the forums.

 

[Greigharts]

Thanks for the feedback. You have made my day. I totally forgot about the ICD-10.

Thanks for the online test recommendation. I took it a year back and every other one I could find. Then I gave these test to my friends and co-workers (without telling them what the test was about) to see how NT's would score. At first I was not happy because I scored so far into the red, so to speak (46 out of 50 on the one you recommended. 143 out of 150 on Aspie-Quiz and it goes on and on), and my friends were barely a blip on the scale.

It felt surreal because my image of autism was the same as everyone else. But I couldn't ignore the results. Thus began my journey. It has been and continues to be amazing!

 

[grommet]

Anyone have advice on getting an "official" diagnosis as an older adult?

I saw a neuropsychologist. She does testing. She tested me for three months with one visit each month, a couple of hours each. I saw her one more time to have her tell me the results. My insurance paid for it but as I understand, it was several hundred dollars and in my opinion that is an amount that a person could save up for and pay themselves. I do not mean to be unfair to anyone who could not do that, I just think that it is a more attainable amount than thousands of dollars.

I do not want to discuss the tests themselves because I would not want to influence how someone might respond to them. I will say that I was very surprised by my reactions to some of them, one in particular. My brain simply would not do what I wanted it to or what I ordered it to.

Good luck

 

[shinkansen]

Anyone have advice on getting an "official" diagnosis as an older adult?

1. What process did you go through and how long did it take?
   
2. Should I even try? I've met other Aspies who say I'm and "so on the spectrum".
3. I think I need one for credibility, because I would like to create a series art projects around the issue of adults with neurological issues who hide in plain sight.

Hi Julian and welcome to the forum.

I was diagnosed with ASD (autism spectrum disorder) at the age of 49. This was here in the UK by the National Health Service (NHS). Docs said to me that ASD is now covers aspergers syndrome, too.

What process did you go through and how long did it take?
Back in the summer 2014, I was referred to an ADHD doctor to discuss the possibility that I might have ADHD. As well as diagnosing me with ADHD, he also said I had symptoms suggesting ASD. So he referred me to see his colleagues in the same London hospital. 9 months later, I had an ASD assessment and was diagnosed a month after that. The ASD assessment covered the report from ADHD diagnosis, interviews, tests and a interview with a close relative. I never considered that I couyld be on the autism spectrum until the ADHD doctor suggested it to me.

Should I even try?
What would a diagnosis mean to you ? And what would you do with a diagnosis ? When the ADHD doctor offered me the opportunity for an ASD diagnosis, I hesitated and said 'what difference does it make, I still have to go to work and pay the bills' . Nevertheless, the diagnosis has highlighted areas where I might be able manage things better. So you might see as an opportunity for help.

I've met other Aspies who say I'm and "so on the spectrum".
Since being diagnosed, I've met other Aspies and this has been a rewarding experience.

I think I need one for credibility, because I would like to create a series art projects around the issue of adults with neurological issues who hide in plain sight.
That's a noble ambition. After being diagnosed with ADHD and ASD, I asked the doctors how I'd got to the age of 49 without diagnoses. It's about coping mechanisms. I reckon there's a lot of adults out there who struggle with stuff they don't understand and need professional help.