Being diagnosed as an adult & neuropsychological testing

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Hello
So at age 54 I am going for neuropsycholgical testing/evaluation.
Now I have been "diagnosed" by 2 psychiatrists medical doctors and have had 2 therapists who have given me their opinion. I realize a therapist is not a medical doctor. A psychiatrist IS though.
However, I am told that a "proper" or "official" diagnosis requires neuropsychological test/evaluation.
This consists of a 1-2 hour intake interview w TALKING.
Also, I must answer some questions. (I don't like questions..yes/no..on a scale of 1-10 etc)
Then there are further questions. Motor skills. Puzzles. Games. Hand eye stuff. A lot of different ways to test my mental function.
This is being required by an MD who wants to do DNA testing to see what medications I may be able to take since I have been resistant to ALL medications I have tried over the past 40 years ! (SSRI, anti-psychotics, mood stabilizers, anti anxiety etc etc)

Here is my concern:
After reviewing the Drs credentials it seems they specialize in PEDIATRIC autism diagnosis.
1) I know AUTISM is categorized as a DEVELOPMENTAL disorder. I didn't have any speech delay. In fact I had EARLY speech.
2) I did not have poor motor skills or lack of coordination. In fact I have good dexterity and fairly athletic (I don't participate in team sports, but I am flexible, can run, lift weights, do yoga & have good hand eye coordination)
3) I have seen video of babies who do not make eye contact. It looks to me like this is a BIOLOGIAL/DEVELOPMENTAL problem..where they physically do not know where to look. As in, they look all over the face ..scanning whatever features catch their attention. Again, this is different from what I experience(d)
My lack of eye contact is more of feeling "alien"/disconnected. It is NOT shyness. It is the alien/estranged feeling of not being on the same page as people and really not understanding how to properly communicate which is vastly different from a baby not knowing where to focus their eyes.

Finally
The questions...
I am afraid of "fill in the oval" questions such as:
Are you experience a loss in joy in things you once had interest in?
Well, I wouldn't say that I "EVER" felt "JOY" as in that exuberant feeling I see on "NORMAL" people's faces.
So NO, I do not have a sense of LOSS as in..I used to wake up and enjoy the sunshine and lately since I lost my job I am not as happy or I don't enjoy music as much as I used to !
These are the type of WRONG questions that are not even correctly addressing my experiences.
If I say YES, then they diagnose as depressed. If I say NO, then they come up w something else.

Do you understand.
This is why I have been in and out of treatment and never had a PROPER diagnosis.
I am 54 years old.

When I was young like many/most posters here..spectrum and aspergers terms were not even known (or barely)
Then in the 90s almost every other "different" was diagnosed as such and I was already 30 and didn't feel I wanted to go and self diagnose/ask to be diagnosed as "that"
It seemed to me there was a huge sudden wave of OVER diagnosing.
So I stayed away for the past 20 years.
I didn;t know where to go.
Then they removed Asperger's from DSM

So, now what?

Has any ADULT at an advanced age or even anyone experienced a confusing time getting a new diagnosis?

please explain your experience w testing..what questions were like
could you talk about your experiences?

Is anyone else in my age range and experiences the same thing re: nobody knowing about thuis stuff back in the 70s-80s when we were kids or teens/twenties and leaving treatment due to frustration?

I am 39, and I had my third evaluation a couple of months ago. I understand your concerns. Asperger's is just considered autism now, at least in the U.S. I'm not sure where you are. No one I've seen has ever made a big deal out of the "developmental delay" label. It's kind of an inappropriate label since the "delay" lasts the rest of an autistic person's life. I assume the failure to learn to instinctively communicate and socialize like neurotypicals is also considered a developmental delay, and every autistic person has that, even if they spoke, walked, etc. on time.

The best you can do is find the most experienced psychologist you can, give as much evidence as you can, and be yourself as much as possible. Some doctors specialize in adult autism. Avoid places that evaluate mostly kids. Avoid places that mostly deal with severe autism. Do not go to a university or research facility unless they specialize in adult autism and you will be seen by qualified professionals (not grad students). Ask what the evaluation will entail before you make the appointment.

The psychological questionnaires can cause problems, but a professional knows that they are only one piece of information about you. You can also try telling the doctor that you need to know only whether you are autistic or not; you don't need an opinion about other psychiatric disorders you may have. That might decrease the amount of testing you need to do and help prevent the doctor misinterpreting your answers and test results.

Telling the doctor your concerns about being misunderstood would also probably be helpful. Give long answers if you feel the need to explain yourself better.

I can't stress enough how important it is to be the self you are when no one is around. That is truly when your autistic behaviors will become apparent. The doctor observes you in addition to giving you tests and questionnaires. Whatever mask you may have worn to get through life, stop at the doctor's door and consciously drop it. Don't be ashamed to act "weird" or a bit immature. Speak up if the lights, temperature, noise, etc. in the office bother you. Do whatever makes you comfortable because you are supposed to do your best on the tests. And if doing your best exhausts you, say so.

As for evidence, any old school records, previous evaluations, and information from other psychologists covering autism-related difficulties will help. The doctor will probably want to interview someone close to you, so try to get a friend or family member to provide observations about your behavior.

My experience with testing was difficulty finding someone who would evaluate an adult and extreme difficulty getting my medical insurance to pay (they wanted me to go through a regular psychologist first). My first evaluation was at a graduate school of psychology. Waste of time since grad students know nothing about autism that isn't textbook Kanner's autism. They screwed up tests and gave them to me twice, which affected the results.

I went to the psychology department of a large hospital and asked for an evaluation. The person I saw (a resident, not even a fully qualified doctor) just gave me a personality disorder questionnaire, told me I was too smart to be autistic, and lied in my records and said that I'd come in for a second opinion about a previous diagnosis.

My second was at a state organization for developmental disabilities. They only serve severely affected clients, and they have limited money amid rising autism rates, so of course they are motivated to say most potential clients do not have autism. Ridiculous and childish tests (run far away if the doctor says she will use ADOS), and I wasn't even given the full IQ testing.

The psychologist and grad student didn't listen well and wrote gross errors in my reports. Lack of attention to detail is something I've noticed over and over again with these psychologists. I seriously considered asking for my most recent interview to be tape-recorded so they'd have a reliable record of my answers.

I got a referral to another specialty autism clinic. Based on the test results I got from the graduate school, they would not even evaluate me.

In my evaluations, I was given IQ tests plus tests of executive function (planning, organization, attention switching) and some tests to rule out learning disabilities in one case. They asked me about my hobbies, my relationships, my future plans, my work experience, and my habits.

They tend to ask simplified questions, which can lead to them missing important information, so, if you can, try to elaborate on your answers if it's relevant. For example, one asked me whether I can drive and I just said "yes." It would have been better if I'd have mentioned that driving is stressful and gives me migraines. It's a real problem because interpreting questions literally is very autistic-like, but the answers can make you seem not autistic because you're leaving out important information. Maybe just think of all the autism-related problems you have and write them down ahead of time. That's what I should have done maybe.

I "failed" my questionnaires. IMHO that's a sign of our flavor of ASD, but I suppose it's a savvy (educated) assessor who can pick that up. An assessor experienced with adult ASD is ideal, if not available I would consider an experienced pediatric ASD assessor as potentially more qualified than an assessor of adults who does not understand ASD. FYI - I was encouraged to bring "documentation" and I did: my observations, quotes from written materials, etc.

Despite "failing" the Qs and ADOS-2, I was diagnosed with ASD (and a learning disability given the large disparity between my non-verbal IQ and my verbal IQ --- one genius level, one average).

1) ASD is a different brain structure.operation IMHO. Who's disordered? The majority or the minority? I don't expect my NT husband to be a whiz at spreadsheets and inferences. He doesn't expect me to be a whiz at human nature. We both can learn. Does he have a information developmental disorder? Clearly that part of his brain is "delayed". Hahahahaha.

2) I am very coordinated, and I am not. I could pick up any sport quickly, but during my assessment I knocked over my tea cup. Any "stress" and I'm Miss Dropsy.

3) I know notice I stare and then I don't. I seem to "miss" people's eye contact when walking around my workplace, or I am staring. People find my gaze intense. Seems normal to me! I watch my NT (non-ASD) son and it's so cute how he looks around here and there while he talks, coming back to my face, looking up, back, to the right. My ASD-like daughter is like me: stares, or doesn't. One doesn't seem "right" or "wrong" to me --- that is how each of them relates.

My ASD-like BFF has your issue: never felt joy or despair. I am the ASD polar opposite: I feel great joy and great despair near every day --- so likewise I had a hard time answering --- I also went with: it's not any less than more than usual! I took the Qs literally so was unable to answer "yes" when I know it "counted" ---- has anyone told me in the last six months that I am "rude" --- no, I'm a 50-year-old woman ---- I get looks, I get shunned by detractors, I am told I am "cute" by allies, but nobody has blurted out: "you're rude!". Although someone nearly did, but that was 10 months ago, so "no" (not w/in 6 mos). Of course now that I've talked about it with my husband, my son recently told me, straight to my face in a moment of upset "you're rude!", so can I take the test again?

My ASD assessor would say I don't need to, I have my diagnosis... but... you know, for thoroughness' sake.

Thank you both for your replies

First reply is 39 years old.
I am 54. 15 years older than you. I am in the US.
I had a neighbor. He was a few years older than I was. He was called "AUTISTIC"
This was when we were kids in the mid 1970's. The word AUTISTIC was literally UNHEARD of on tv, newspaper, mags or in common language. The ONLY time I , or my family EVER even heard this word was to describe my neighbor.
He did not even speak. He yelled in gibberish. He could not walk too well and was pigeon toed and his arms stuck out from his sides and waved in a wild flailing motion. He often banged his head against the wall or ground.
He threw feces and urinated in the house and in the yard.
He was put in what was then called "an institution"
*** The next I ever even HEARD the word AUTISTIC was the early 90's perhaps w few years AFTER RAINMAN had come out in 1987.
They said the character was Autistic.
I was confused, because I thought the kid who was my neighbor was "Autistic"
Remember there was no use of the term spectrum or apsperger's when I was a kid or teen.
Not only was there not a term..there was NO SUCH THING. There was no discussion...I just thought I was crazy.
I thought there was something wrong with me or maybe everybody couldn't tolerate lights, heat, noise, restrictive clothes: underwear (I'm a male..tighty whiteys/./NO WAY!)...seatbelts, tucked in shirts, mittens, socks, hats, sweaters..itchy & around my neck!..sheets tucked in at the foot of the bed...NO!
preference for bland foods...not spicy. not too hot, not too cold etc
on & on
I thought maybe I was just "picky"...at least my MOM gaslighted/invalidated me into thinking that..
oh, i was just difficult or demanding. I needed to "buck up"
I was exaggerating...or the worst..."Oh, I'm like that too..I don't like it when it's too bright either..I just wear my sunglasses..etc etc"
I'm sure you have all experienced these things
as if what we experience are "choices" or "Preferences"

So, then the docs and diagnosis...again with the inappropriate questions...I would leave knowing that I was not "depressed" or "bi-polar" but I would leave w these meds that never worked and these totally inaccurate diagnosis that frankly felt insulting.
How could they assess me by asking the WRONG questions and speaking the wrong language ?
and then expect improvement by given me a medication for something I didnt even have??

lol..sheer insanity !

I would become more and more depressed and hopeless.
Lost jobs, dropped out of school, lost girlfriends, woefully underemployed, etc etc
eventually disabled and not functioning on any significant level.
I need help.
I have pretended and adapted as best as I could for half a century and it is time to give up the charade once and for all.
I am not "depressed" , I am not "bi-polar"
non of the dozens of meds I have taken have done sh i t and that's why
so now I want some DNA testing to see what meds may actually benefit me and get some housing assistance where I can set up an environment that I can cope with that won't over stimulate me that I can keep orderly etc
Finally..and thanks for reading and replying if u could feedback more that would be awesome!

Since back then we only "autism" to be kids like my neighbor...to ever say "I think I am autistic"
I would never even dare say that once I learned about ASD etc
because I had my experiences invalidated and also back then autism meant kids so severe like my neighbor
i thought people would think that would be shocking or outrageous...to claim to "be autistic" or even SAY that word
also i was quite handsome and not the media's fictional geeky kid w 3 inch thick glasses studying caterpillars!
ya know?
the media has done such a bad job of creating caricatures for NTs..that people think.."oh you don't LOOK" or
"but you CAN'T BE" etc etc
So I shut up and kept it to myself for decades and suffered

I knew about autism in the 1960s. I was diagnosed with it, then. I was a research subject when I was 5. That’s when I started talking.

I knew an “autistic” kid like the kid you described. He was a friend’s older brother.

Good luck in your pursuit of a diagnosis.

see kraftie
you knew about it and were lucky to get a diagnosis in the 60s because you talked at age 5
regarding speech etc
I was early....
outwardly I appeared normal if anything
perhaps "shy" and "didn't like to play with others" on my report card
that's where it ended.

the rest i kept inside and struggled to adapt..dropping in and out of school, jobs, etc etc
becoming more and more withdrawn etc
now at a dead end and disabled livng w parents in their 80s while i am mid 50s & unemployed
needing help

I’m sorry you’re in this rough situation.

I hope you get a diagnosis, so maybe you can get help getting a job.

You are not useless. You are helping your elderly patents, I’m sure.

I have a lot to say because I was just diagnosed ASD in 2018, and also tested for ADHD just two months ago. Both sets of assessments were by neuropsychologists and neuropsychiatrists. I'd be happy to answer your questions but I'm half asleep so I'll write more when I can.

There aren't really fill in the bubble tests, in my experience. All of those types of tests are administered verbally and I was able to expound on my thought process to the doctors. For example, "Would you rather go to a theatre or a museum", took me about ten minutes to answer because it depends on whether it's live theatre (a play), vs a cinema, vs crowded museum, vs a solitary visit to a museum, and also factoring in my agoraphobia (e.g., in a dark theatre I might feel less vulnerable and exposed than in a brightly lit museum with lots of tourists). Every question was challenging for me in that regard but because they were verbal questions I was able to share my personality and impart the elements of my neurodiversity.

I will write more when I can. Just wanted to say hi, and reassure you that it will be OK!

I was diagnosed at age 61 by a pediatric psychiatrist because there was almost no one in my city who did adult diagnosis. So sometimes you make the best of what's available.

You're somewhat like me in that you suspected you were on the spectrum and didn't try to get evaluated (until now). The only evaluation I had was around age 5 and I have no idea what they told my parents. School complaints about me were consistent with being on the "spectrum" that was an idea still 24 years in the future: won't sit still, daydreams. I don't know the details of my speech delay but I would guess a year or two. I was able to handle school despite never being very engaged in the classroom. In college, studying engineering, I had an interest in Psychology and while reading a book in the library I discovered Asperger's and knew that was me. I had known about autism before this and thought they were usually institutionalized. When I was in college was the time of de-institutionalizing, but I didn't know much about that. Picking a career that was sufficiently tolerant of my issues, I was successful and always avoided management jobs that would have been an end to my career. I had one boss who tried to put me in management . Even though I suffered terribly socially, I eventually started dating more and got married. Somehow I missed most of what went on with the evolution of the spectrum diagnosis, which only started nearly 10 years after I knew I was on the spectrum . Even after I had a daughter who I thought was ASD at a young age, I didn't take much interest in understanding ASD. Then she was diagnosed at age 18 and I still didn't take much interest in understanding ASD. She was doing a lot better socially than I was at that age. It was actually Greta Thunberg's aspie pride that made me realize that I had missed the whole neurodiversity movement. I'm still self-diagnosed, now by the online quizzes, but have never had any doubts after reading about AS in the late 1970s.

Anyhoo, I don't understand your concerns about getting evaluated. Sounds like 3 pdocs already think you are ASD. Why would the experts think differently. The DSM-5 doesn't mention either speech delay or poor motor skills. Your eye contact feeling sounds right for ASD.

I don't know that there was ever an over diagnosis. The latest number is 1-out-of-54 kids, and in my experience they had seemed to be trying to avoid labeling my daughter with what was obvious to me.

Thank you everyone.
I would love to hear more thoughts on this and what the tests are like.

I am glad I will hopefully be able to explain my answers. I was afraid of yes/no answers may appear that I do NOT have ASD or that I am diagnosed w something else.
I have some symptoms and don't have others so I thought maybe I would appear inconsistent and therefore be dismissed
Example: I was never ADHD: I may be ADD, but absolutely never "H". I was quiet. Played by myself. Well behaved.
Did not "act out" etc etc
In the 90's when the diagnosis of the day was ADHD and lots of kids were being given ritalin is when I started reading and hearing Asperger's and ASD for the first time and the two were being mentioned together.
Again, I was never H and not even sure I was ADD, so again I was put off in my mind from seeking a diagnosis.
And that is why I thought perhaps there was overdiagnosis.
Because I had gone from NEVER even hearing the word in the 70s to 20 years later and suddenly a whole generation of kids had ADD *AND* ASD comorbid (seemed to me)
Left me confused and feeling I once again didn't fit in.

Anyway, as you can see I joined in 2010 and only made few posts until last night regarding my diagnosis.
Thank you for feedback.
I plan on writing my biography and taking notes and report cards, work history etc etc so I can be sure she gets the complete picture when I go

wow

going back and looking at replies and post counts
you guys are downright prolific !

i've been here a decade and have 40 posts !
lol
again, not knowing where the hell I fit in
and only now finally seeking "official" diagnosis & guidance so I can get place to live and finally "move on" w my life
I have been "trying" to be "normal" the past 10 years..and again failing miserably.

Enough already. I am not a failed NT. I am plenty enough intelligent. I just struggle living day to day and holding
school or jobs for EXTENDED lengths

so at this point in my life (54)
my goal is to set myself up to live out my life without any serious backsliding
thanks..can't wait to read more.

Pency Prep was Holden Caulfield’s boarding school, ironically.

If you don’t mind me asking, Pency, what is your primary “special interest”?

Mine is Neanderthal Man and whether he is Homo sapiens, or a separate species of Homo.

Hi Kraftie

Pency & PencEy prep is not a coincidence.
It is the reason I chose the name.
& I live in New England. Close to where Salinger lived. A locale rife w prep schools and names like Pency.
He had recently died in 2010 when I registered and had been thinking of him,
always liked the name and so I chose it when I registered.
It is spelled PencEy (with an E in the book)
I chose to disguise the reference a bit by dropping the E and also personally I always felt it read/looked a bit more "prep" as Pency (no E)

I have actually had a few interests over the years.

My first as a kid was baseball. As a New Yorker, I am sure you are aware of The Red Sox and that they are a big part of New England culture. It has been said baseball is a game of "discrete events" which is what has always attracted me. The subtleties and nuances of the game. The detail and minutiae.
Also, it is the one sport (I have no interest in other sports and I consider baseball a game) that lends itself to numbers, counting, statistics, memorization etc.
Even most casual fans (not even the most obsessive) have some knowledge of some of the iconic #s of the game:
Babe Ruth: 714 Home Runs, Joe DiMaggio: 56 game hitting streak, Jackie Robinson #42, Ted Williams: Last Player to hit.400, Roger Maris single season HR record 61 in 1961 breaking Babe Ruth's of 60 etc etc etc
(I don't count the steroid fake Barry Bonds stuff in these mythological #s)
remembering uniform numbers and games etc

Also as a kid I had many allergies and asthma. I stayed home from school a lot.
I took a liking to colors and women's clothes. Looking at fashion and "ladies magazines" specifically mags of that time period. I still on and off throughout the years have amassed a rather large collection of vintage fashion magazines: Harper's Bazaar, Vogue, Glamour, etc
This really took off w the advent of EBAY in 1995. It has gotten out of hand at times as I have spent far too much $$ on it. Those magazines do have an audience and some sellers ask quite a bit of $$. especially if they are in great shape and are news stand issues (no mailing labels)

Also, I developed an interest in cults & off beat religious movements of the 60s & 70's everything from:
The Moonies, Patty Hearst, Charles Manson Family, Jim Jones etc etc
I focused on Manson since I also liked the Beatles. Also it was most interesting because it had so much detail:
names, dates, connections to movie stars & musicians, the beatles, sex, drugs,
i found the case fascinating and read every book and saw every film i could dozens of books have come out over the years.
this past summer of 2019 a slew of tv shows and books came out since it was the 50th anniversary. also freedom of information act and some fbi files became available and then there was the Tarantino movie Once Upon A Time In Hollywood which featured the Manson family as a small part of the film...so that brought out even more articles.

Sorry to write so much

It’s okay. What you wrote is interesting.

I’ve read some on Manson and on 60s popular culture in general. I have a decent knowledge of the Beatles. One of my first memories was listening to “Ticket to Ride” on the radio.

I should have known it was spelled “Pencey” in the book. I had some Holden tendencies as a teenager. I outgrew most, but not all, of them.

I have followed baseball, football and basketball (though not football and basketball in recent times) since I was about 6-7. I had a Mickey Mantle-signed bat once. I saw him play in the old Yankee Stadium.

thank you for responding to me
it is nice to see someone in my age range and general geographic area
i registered here in 2010 and never posted much
maybe a few here and there but most of the posters at the time were much younger and i didn't reach out and post a question like my initial post in this thread because at the time everyone seemed to be talking about what tv characters they identified with, cell phones, pop culture and (to me) trivial things and concerns of younger people !