Being diagnosed as an adult & neuropsychological testing

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How do you feel about the TV of the 60s and 70s?

Hi

oh yes...love it of course.
I think I am stuck in a cultural time warp for that period.
all the music, tv & movies.
I have tried to watch current shows & movies and I am only 54 (I don't think that's old)
and I honestly don't even get it. I don't understand the lingo (words & phrases they use), the jokes, the cultural references or music. I just watch the same things over & over thank you

I am older. Did the ten hour neuro testing. I would advise it. It showed indeed I do have it and I was astounded to see other things, too. Best of luck and let us know how it goes!

Thanks

My only issue with brining someone is my mother
She has been in denial. maybe some of you have experienced this.
If I have ever tried to express your experiences, have gotten invalidated with things like:
"Oh I have that too...I just wear sunglasses" or
"I like to eat the same thing every day too..it's just easier!" or
"You are just exaggerating..don't be so difficult!"

Also, I grew up in the 70s. I had an overachieving very succesful brother who is now a phD.
And I was physically attractive. And I was not at all ADHD. I think it was assumed I was "normal"
So I just sort of fell through the cracks and got pushed along.
Eventually failing at things as I got older.

** I was recently watching a PBS show here in the US called "ADD and loving it"
Has anyone seen it?
And the DR said when they try to go back to earliest years and speak to the mothers. The mother will always say..
"oh, he was such a a good boy"
My parents have been in denial my whole life.
THAT is exactly my concern. She has no idea of what my experiences were. Only of how I behaved right?
So she will make it seem like there was "nothing wrong"
The Dr on that show used the term "white wash"
The mothers white wash the history. The patients get frustrated.
Now I do not think she would deliberately white wash, as in cover up something intentionally, I just think she does not understand the turmoil I was experiencing. All my report cards have notes like:
Does not enjoy playing with others & things like that. But I was very quiet and organized. Not at all "typically"
adHd anyway..no hyper activity. So I had no "behavioral issues"
Again, I am thinking people would think there was nothing "wrong" looking at me.

Also, The Dr said once diagnosed patients usually go through the following stages:
1) relief that they are validated officially. with why they have struggled/failed and not just been "lazy" or under achieving.
2) angry. why wasn't this diagnosed earlier.

I have to say..at 54. I am already angry. I have been going to Drs and therapists on & off since my late 20s w NO results. I will go and then quit after 3 or 6 months with no improvements and then try a new provider when things get bacd a few years later.
And now I am 54. And it's not Alex' fault. But I was watchinga video of Alex on a panel w a young woman his age and an older woman and Alex was saying how he was diagnosed at 9 and it made me mad. I think the young woman next to him said she wasn't diagnosed "UNTIL" she was 19!
LOLOL! oh, really?
well, I grew up in the 1970s! The only "autism' then were severe kids like my neighbor who were institutionalized.
There was no "SPECTRUM" or "Apserger's" in the 70's. I mean, there may have been but it was not widely diagnosed.
Now kids are diagnosed at age 9 and she not UNTIL 19.

My whole life has been wasted.
Again, not their fault. My terapist has told me that people of my age and earlier got the shaft w this because they were not versed in this.
So, now I am just happy to be getting an official diagnosis.

thanks for the feedback.

last question.

At my evaluation place...

they have a few people.
Do you think it is important to speak to someone in my same ethnic and AGE range?
I have no problem talking to a woman, in fact the only therapists (3) I have ever stayed with for any prolonged period were women. I prefer talking to women. But the one they have tentatively assigned me to is 38.
I am almost 55.
I am afraid my cultural references and experiences she will not understand.
Also, since I do not really understand people or never socialized much, most of what I understand is from movies and situations in movies and tv shows (from my era of course)
she will probably NOT know culture from my time period.

So, they have a black Doc for black patients
A doc that specializes in geriatrics
A doc that specializes in pediatrics
and I am a 54 year old man...I am already having a fear (maybe unfounded) that again am not going to be understood.

Last edited by pency on 20 Apr 2020, 9:10 am, edited 1 time in total.

You don’t need your mother. You could have a friend as a substitute.

I'll try to answer one bit at a time pency.

I am roughly your age. In a nutshell, I had the same type of childhood in the 70s and 80s. I definitely had difficulties but didn't receive any type of help or treatment other than speech therapy when I was about seven. That was arranged through my school and not by my parents or doctor. I had the typical autistic experience of never fitting in and always feeling alien, being bullied, and spending most of my time alone. Fast forward to the 1990s and I started taking antidepressants, as well as seeing a psychiatrist for depression and anxiety. The word autism was never mentioned. I had one nervous breakdown at this time and was hospitalised for burnout but again, no ASD.


I fell off the world map for almost ten years and by 2009 I was being treated for CPTSD, agoraphobia, depression, generalised anxiety and mutism. I saw psychiatrists, a trauma psychologist, and several social workers or general therapists. Again, no mention of Autism but I still knew I wasn't the same as "other people", and that I had never been the same. I didn't know how to put all my internal struggles into words to even inquire for a diagnosis of "whatever that thing is" that I couldn't name. I had a severe nervous breakdown which led to my stroke, which led to more therapists for a year of treatment (PT / OT / VRT and SLP). It was the SLP who talked about the term executive function. I'd never heard the term before. I scored very low and she assumed it was because of my stroke but I knew I has been born with those deficits. Likewise, in my Neurology consults post-stroke I knew that I had never met the milestones they expected of me in stroke recovery. I knew something was "innately different" about me, but I still couldn't name it. The Neurologist could tell I wasn't "normal" (for lack of a better word -- sorry) and she was quite disrespectful because she expected better psychological recovery.

I went to a new psychiatrist for post-stroke depression and that's when I started doing my own research about my lifelong differences. It's a long story about how I realised I was autistic, but here's the scoop:

I referred myself for private ASD testing to jump the queue. I was tested by a neuropsychologist from my alma mater. In the intake she sent me a lengthy set of Developmental History questions (I can't find the email but I think there were about ten or eleven pages of questions, each very complex). I knew I wouldn't be fully articulate in my testing setting so I spent two months writing my DH answers in the form of a 188 page autobiography which I had professionally bound. It's absolutely huge because each page is the size of a printer page and they only printed on one side of each page. I included photos and captions of my life since birth as well as answering all the questions anecdotally. There was a Table of Contents and appendices with all my school reports and work evaluation reports. I even put old home movies onto DVD and managed to upload them from my computer onto YouTube, then provided links in the appendix. Yes, it was serious overkill but I did it for my own mental health as well as the doctor's consideration. The file was too big to email securely, so I shipped the bound Manifesto to her a month ahead of our appointment. I put a note with it saying I didn't expect her to read the whole thing. She could use the Table of Contents to find the answers she wanted most. I told her if she did read the whole thing, I would pay her additional fees for the time spent in preparation.

My Manifesto was very helpful and by the time I met her for our first session she knew my life history. I didn't have to speak much. I sat on the floor (my preference) and I stimmed through the entire session. I have a tendency to go mute but it wasn't much of an issue with this doctor because a) she understood my mutism and b) she understood my life so well from the biography that I felt comfortable enough to speak.

I mentioned before that the questions which would normally be "fill in the bubble" were administered orally and I was able to give long-winded explanations for each one. I never had to choose "yes-no" on the spot without giving anecdotal descriptions. I wouldn't worry about that.

I did the ADOS but didn't even know that terminology then. It wasn't until I read about other people's ADOS experiences on WP that I could reflect and say "Oh yeah, I did that thing". It was quite child-based, like looking at picture books and playing with a few little plastic toys. Just go with it. I wasn't insulted in any way by this part of the assessment.

The balance of the day was a multitude of computer tests for vocabulary and nonverbal reasoning. Looking at eyes and deciding people's emotions. Listing words that start with certain letters. Something that was like a dot-to-dot on the computer (I can't remember exactly but I think it was numbers and letters). Talking about my goals for the future. It really wasn't bad, it was just tiring.

When I left I got a lot of links for encrypted computerised testing I had to do from home, as a double blind measure. These tests were sent to a third party for verification against my test-day scores. The questions were similar to the RDOS. A family member was given a series of questions about me as well, to answer online. I have no idea what those questions were.

All in all, there was nothing to fear. As others have said, if you already have professionals recommending you for testing that's half the battle right there. I didn't have a doctor's recommendation and I did it anyway, but still came out with a diagnosis of Level 2 Autism Spectrum Disorder (with CPTSD, GAD, MDD, Agoraphobia, stroke damage, and mutism).

I have a lengthy report with all my scores and I feel so much better understanding myself, and knowing I was autistic all along. It was the missing link that I'd never been able to define.

Since then I've had lots of people act like your family by saying "Oh everyone is a bit autistic", or "I wear sunglasses too". Big deal. Just ignore that rubbish. You know yourself better than these people who have never researched autism and people who've never spent a day in your shoes. If you know that you're likely autistic, please go and find out. There's nothing to fear.

Good luck!

wow. incredible.
thank you so much.
maybe i will do just that.
i have been preparing notes...and it is absolutely huge.

and i was talking to my mom just today...and I was asking her different things and she said seemingly (to her)
innocent things like : they recommended me for early admittance to kindergarten (I was also sent to a gifted elementary school that had a curriculum patterned after something from California...no rows of desks, raising hands and doing multiplication tables etc,..we had pets, bean bags chairs, "rap sessions" and made a sun dial to tell time etc...anyway this was all "way out there and it was called THE PROGRESSIVE CLASSROOM" ..they picked kids ..one of each gender from surrounding schools)...anyway...
I suggested for early kindergarten, but the only concern was in playing "the circle game" (whatever THAT was) that i refused to hold hands!
I *JUST* found about this today!
Tat came from me prodding mum for more info...
it certainly would have gone UNMENTIONED to the interviewers.
So, I am going to spend a while going over all this stuff and preparing as much of a bio w experiences as I can

Thank you so much

I just searched again through my email accounts to find the Developmental History questions which I received by email. I can't find them at all. I found the email where I replied to her and said "Thank you for the questions", and there is a paperclip to indicate it's a reply .... but her attachment has vanished. I think it was time-sensitive and deleted after a period of time. Likewise when I received my encrypted report the passwords all expired and disappeared after a few days for security. I was using a different laptop then so I'll check and see if I did any screenshots of the questions or saved them to the hard drive in some way.

I definitely recommend that you write as much as you can, and don't be embarrassed! My doctor was very thankful and said my level of OCD preparedness was a positive sign of ASD before we even met.

I copied this from the intro letter I received from my neuropsych to explain the process, before I paid.

It's from PDF so excuse the spacing.

This isn't the list of Development History questions, but it will give you an idea what was included.


Disorder-Specific Evaluation:
Assessing characteristics of specific neuro-developmental
disorders such as Autism Spectrum Disorder, including but not limited to:

• Intellectual/Cognitive: assessing intellectual abilities; specifically, verbal and nonverbal/
perceptual processing abilities;
• Academic: providing information about individual academic ability and percentile;
• Memory and Attention: examining ability to remember or recognise information
in short- and long-term memory, as well as working memory, and determining
an individual's ability to attend;
• Functional: assessment of functional abilities or daily living skills, with
suggestions for areas in need of development;
• Executive Functioning: examining ability to plan, initiate, organise activities and
tasks, initiate and self-monitor, and regulate behaviour and emotion;
• Social Cognition: such as affect labelling; affect recognition from faces and
prosody; identification of sarcasm; the ability to verbalise intent of a speaker
and face and name memory;
• Mental Health: assessment of anxiety and depression relative to age-and
gender-matched peers, other mental health concerns, and emotional status;
• Sensory: gathering information around sensory seeking and avoiding behaviours
and specific sensory concerns (and may result in referral for an OT consultation).

[quote="pency"]My mother... has been in denial. maybe some of you have experienced this.
If I have ever tried to express your experiences, have gotten invalidated..."
YES.

1) My evaluator said at the beginning that he would contact family, but at the end did not have the need. I had advised that my (likely ASD) mom is in denial and my (NT) dad minimizes my concerns. For my mom my behavior was normal enough (her family is super ND and didn't acknowledge it). To my dad his was an NT attempt to comfort me ("everybody does/feels that" ---- now I say to him --- "yes, some; for me it's like...").

Is your mother is in denial about you? and/or herself?

2) It's ironic my mom invalidated me b/c she (and her mother) is likely ASD. At first when I suggested ASD for her, she said it didn't matter, she knows herself. Now, a year later, she's discovering herself anew. She survived her first 7 decades by suppressing emotion (apparently being ASD in the 1940's -her decade- was rougher than 1970s -my decade) and now she's exploring being feeling (unregulated) self.

I think in denial or just that is beyond her comprehension that something is severly wrong
mostly invalidated with statements like
"Oh, I dont like it when its too bright either.I just wear sunglasses." *OR*
"Oh yeah, you didn't like to play with other kids..I thought you were just "shy" "

I know she doesn't mean any harm. But our experiences our beyond any "normal" realm so normal people just frame our experiences with "I'm like that too"...OR..." You are being too sensitive...don't be so dramatic","You are exaggerating"
"You were a little bit shy" etc etc

So after years of hearing that crap, I just gave up ever trying to relate my experiences to anyone.
And again, I was a kid in the late 60's and 70's (born in '65)
People were not aware of any of this. And as a teen as things became increasingly unbearable and the difference between me and my classmates glarinlgly obvious as kids got older and became more social etc
well back then at that age..I did not say "Mom, I am struggling with sensory issues and I don't know how to talk to kids..I don't relate to them....I need my sheets UNTUCKED at the foot of the bed so NO restriction etc etc"
You don't ask to see a shrink for that stuff or complain about...I just went about my day at odds w my surroundings and people thinking I was "crazy"

Did folks actually call you "crazy"? I got called "strange". My dad called my mom "crazy". And then come to think of it, my (NT) husband may have dropped that on me a few times early in our relationship. I nipped that in the bud (as they say).

Most importantly, do you advocate or care more for yourself now, or think you will?

I'm struggling a bit about this, b/c I am accustomed to compensating for or covering my differences so I can "pass", but I am so very uncomfortable and I "pay" later. However, I have enjoyed my new found comfort provided by ear plugs, sunglasses and stimming for everyday activities. I do that now privately and in crowds, but I have yet to do so with extended family, friends or at work... (so still uncomfortable there). I am not sure I have the pragmatic language yet to explain my difference without sounding weird, er, "strange".

I can't stand my sheets tucked anywhere and my feet have to be uncovered at the foot of the bed. It's funny you mention that. I think our parents would be embarrassed to think that they made "autistic" children, because there was a stigma. In my case my dad was undiagnosed autistic so we got on quite well but didn't discuss any of those issues. They went without saying. My mother would have been horrified to think there were autistic genes in her offspring because it might reflect badly on her. I still haven't bothered to tell her I'm autistic, because why? (My dad has passed away).

I've heard from my older brother that I really was a difficult child. At the time, however, my (mother) just ignored me and pretended everything was fine, presumably so I wouldn't get a label. That would have been embarrassing for her.

hehe
yeah, i will be fine and didn't mean to write so much
but this has all been bottled up for 50+ years
so yes, put my foot down..getting neuro eval.
i already took some pre test questionaires that will enable them to give me more focused tests and know what to expect
my therapist said it was like this

you dont walk into dr and say..i dont feel good please fix me, help me feel better
this is why i have been misdiagnosed and mis medicated
they have to be versed in this and know that i am coming in w some background on me..
i wrote answers along w 2 British tests of fill in circles.
So at least tthat way I dont go in for a evaluation w no focus and they dont know where to start..like fixing a car
I have to go in with them knowing ahead of time i am coming in because my breaks dont work
not coming in an saying..whats wrong w my car

i was told there are a bunch of tests she can chose from and not to be worried about ADOS or taking any cookie cutter test that they give everyone that may be inappropriate for me
they will choose which tests to give based on my intake
I am free to talk as long as I want