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barfing_skull
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26 Dec 2020, 3:32 pm

So, I'm an adult currently in the "Not sure if I have ASD or not" but leaning toward "undiagnosed". I've functioned pretty well but there are some hurdles I've become more aware of as I've tried to be more social in the last few years.

I recognize the human proclivity for reading a set of symptoms and then selectively choosing and perhaps unconsciously modifying memories in order to fit the perceived scenario, it's a permutation of the confirmation bias. So I'm wary of just listing a set of symptoms and blandly declaring I'm on the spectrum. From what I've read, though, I'd guess maybe 75% of them are applicable.

I read some of the material on lifeonthespectrum.net and it's all very familiar, though.

I went to my PCP recently, and brought up the idea of screening. His answer was that there was very little in the way of well-reviewed and scientific diagnostic tests for adults that were reliable and/or useful, and none for those over 40. I'm 46. But, after briefly describing my symptoms, he said it was likely the case that I have it.

I mean, I could go through an exhaustive list of traits and habits that fit the mold. Not being interested in other kids as a child, preferring to memorize the Guinness Book of World Records, or specifications of commercial aircraft. To this day I'm fascinated and can read Wikipedia articles about plane crashes over and over again, and have watched every episode of "Air Disasters" probably 5 times. I have this general feeling that I'm lacking in what I think of as social proprioception, too. More intricate social situations sometimes make sense to me - after a period of weeks to years. My parents have noted other traits that fit the spectrum, too.

One thing that stands out as from my understanding of the condition, though, is that I'm generally pretty even-keeled and don't get outwardly upset easily. That's not to say I don't have internal struggles about things changing underneath me, but the effect of those on personal and work situations varies but usually is modest.

So, I'm certain I do have some of the traits, but it's hard to get a diagnosis when there is no well established diagnostic criteria of what meets some (arbitrary?) threshold. Ultimately though a formal diagnosis is more of a potential psychological relief of not viewing these difficulties as personal failures, than it is practical - at least at this time. From a medical perspective, either way on the diagnosis, the outcome might be the same: find therapists that work with those sorts of issues.

Anyway...it's one of those "Where do I go from here?" sorts of situations, and I'm just exploring some avenues. Thoughts welcome.

Cheers!



jimmy m
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26 Dec 2020, 4:58 pm

Welcome to Wrong Planet.

Where to go from here? Well there is a wealth of material available in book, YouTube, message boards etc. So becoming more aware is always good.

Aspies experience significantly more stress than the average individuals. This stress can build up over time and causes many of the problems Aspies experience in later life. I will recommend a good book by Peter A. Levine called "In An Unspoken Voice". It is not about Aspergers but rather it is focused on how the human brain works and stress mitigation.


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27 Dec 2020, 1:15 pm

First and foremost: Welcome to WP! I think you will find some nice people here.


Then why the long-winded stuff below might interest you: In 2019 I was diagnosed as Autism Spectrum Disorder, Level 1 (Mild) and also as satisfying criteria for what was previously known as Asperger's Syndrome. I received this diagnosis in the U.S. shortly before my 65th birthday! Getting an Adult Autism Assessment was not a smooth process, however.


The long-winded stuff:

At the beginning of 2019 I became curious about Autism and whether it had any bearing on me.

My bride and I researched Autism on the Internet and both concluded that a lot of what we found out about High Functioning Autism sounded like me. I also took the "Autism-Spectrum Quotient Test" and my bride took it for me as well (she answered the questions the way she thought I should answer them)--and we both got scores that indicated "significant Autistic traits (Autism)." We both concluded I was probably a High Functioning Autistic. But, because I wanted to know definitively, I wanted an Adult Autism Assessment.

Unlike your Primary Care Physician, mine did not question my request for a referral, did not push-back at all, and did not even discuss it. She just initiated the referral process. (Hmm...I wonder whether I should read anything into that.)

That's when things got messy--because of my medical insurance provider.

I did get a referral from my insurance provider but along the way I learned they were incredibly clueless. Even though I live in a major metropolitan area they were considering providers up to two hours away, in different major metropolitan areas. The providers they suggested either did not do adult autism assessments or were no longer in the area. Finally, they told me to find a provider to do the assessment, but they said the provider had to be an ABA-certified psychologist. Their cluelessness delayed things by months!

WARNING: If you want an adult autism assessment, do not look for a licensed psychologist with ABA certification!!

After getting past the incorrect information the insurance provider gave me I learned that all I needed was a licensed psychologist who did adult autism assessments. I found one about five miles from my home that could and was willing to do one even for someone as old as me.

One test the psychologist applied to me is the one I most frequently ran across on the Internet when researching adult autism assessments: Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), Module 4. There were other tests, too. I do not know which tests are considered essential for an adult autism assessment but that's not my problem, I paid the psychologist because they are supposed to know that kind of stuff.


Whether you want a formal adult autism assessment is something you have to decide. But, if you decide to go that route, good hunting!


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barfing_skull
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27 Dec 2020, 2:50 pm

Thank you both!

I took the AQ test linked there and scored a 43. I guess even if there's some wiggle room for my cognitive biases embellishing things a bit, according to that test at least, it puts me firmly in spectrum territory.

Perhaps a formal assessment down the road. There's not a lot, at least in practical terms, that would do for me this instant, but I could see it being possibly useful in the future.

I got a chuckle at the remembering people's birthday question. Part of what prompted me to start looking deeper is that I've actually been trying to be more social over the last few years, and while I'd say I've been at least partially to mostly successful, there are still some significant difficulties I feel I need to address. But...I've learned a neat party trick (provided they gave the information to me previously) of rattling off everyone's year of birth, for maybe 20 people. Names, I'll forget a lot more easily.

I'm guessing that sounds vaguely familiar to a lot of people here.

Cheers!



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27 Dec 2020, 5:34 pm

I like your username :skull:



Double Retired
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28 Dec 2020, 10:02 am

barfing_skull wrote:
Perhaps a formal assessment down the road. There's not a lot, at least in practical terms, that would do for me this instant, but I could see it being possibly useful in the future.
Honestly, I have yet to get any practical benefit from my diagnosis. I'm still glad I got the diagnosis, though. When the psychologist informed my bride and I of my diagnosis, she asked how I felt about it. I identified four things I saw as possible benefits:
1. It explained so much. My trip through life made more sense.
2. My healthcare providers should be able to use the information.
3. Oooh! Maybe a new "Special Interest"?!
4. It might help friends and family understand me.

Well... #1 & #3 are accomplished but not really practical. I'll find out about #4 after the pandemic, when I can actually see my friends and family. And, sigh, #2--the one potentially truly useful benefit--has yet to be realized--I tell my healthcare providers and they don't care.

Here are two resources you can hang onto for use should you get an official diagnosis...

A link (for #2): https://autismandhealth.org/inc/content/pv_fac.pdf

A phrase (for #4): "I have a doctor's note for that!" (My bride was tired of hearing that before we left the psychologist's office. :lol: )

P.S. Some folk on WP apparently got negative backlash from sharing their diagnoses. I was comfortably retired when I got my diagnosis so I am less concerned about that happening (sigh, when I can see my family and friends again).


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barfing_skull
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28 Dec 2020, 2:44 pm

Udinaas wrote:
I like your username :skull:


Thanks!



barfing_skull
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28 Dec 2020, 2:54 pm

Double Retired wrote:
barfing_skull wrote:
Perhaps a formal assessment down the road. There's not a lot, at least in practical terms, that would do for me this instant, but I could see it being possibly useful in the future.
Honestly, I have yet to get any practical benefit from my diagnosis. I'm still glad I got the diagnosis, though. When the psychologist informed my bride and I of my diagnosis, she asked how I felt about it. I identified four things I saw as possible benefits:
1. It explained so much. My trip through life made more sense.
2. My healthcare providers should be able to use the information.
3. Oooh! Maybe a new "Special Interest"?!
4. It might help friends and family understand me.


I will admit there's a psychological benefit and possible relief at having an explanation for things, a benefit which is hard to quantify. I did poke around and there's apparently a group of licensed psychologists in town that does these kinds of assessments. I sent out a contact to them, we'll see what they say about doing it for adults. I think they take my insurance.

As I talk to more people and read more stuff, I can definitely see 1. and 4. being the biggest possible benefits to come out of it, at least at first.



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28 Dec 2020, 7:04 pm

Welcome to Wrong Planet! :D


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29 Dec 2020, 7:31 am

welcome! "where do I go from here". This forum is a great resource full of experienced people with great insights. Ask questions, watch youtube/ video sources, listen to podcasts, read books, studies, blogs, etc. Good info is out there, although you might have to dig a bit. There are over 5 million undiagnosed adults in the USA today ( US Gov't statistics). We far outnumber the diagnosed kids under 18/21.
I learned of my autism by watching a random netflix documentary several years ago and was amazed when I broke down crying ( I never cry!) saying, that's me, that is what I experienced. My daughter sent me the RDOS autism test and when I took it, the results said i was likely autistic and that I should check it out. I spent a couple of years studying every thing I could find about autism and by the end of that time was sure I was/am autistic. I started to seek diagnosis but in the rural and isolated community where I live, even in the state where I live, resources for adult diagnosis are rare, let alone diagnosis for a 67 year old woman. I eventually did get diagnosis after a few less than successful attempts, loads of phone calls, etc etc.
Diagnosis is often hard to find for adults, but unless you want to apply for aid and financial support/ therapy with medicaid or other insurance, etc you may not need "formal" diagnosis.

Self diagnosis is very well accepted in the autistic community because of the expense, unavailability, struggles to find proper diagnosing entities today.

The things we know about autism today were not taught even 10 years ago so unless a professional keeps up with current information there are still many misdiagnosis cases.

Autism being rare to begin with, unless you find somebody who works with adult autism a lot, you might never find proper or true diagnosis.

Welcome to Wrong planet. Stick around and ask questions. Read/watch/listen to everything you can about autism. It will take time to sort it all out, meantime be kind to yourself and enjoy all the "aha" moments as you learn answers to all the whys, pains and struggles of the past. Autism might cover a lot of that, once you can understand how it has worked in your life without knowing .



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29 Dec 2020, 10:42 am

If you have decided to pursue an assessment you might as well start collecting information. For my assessment I provided as many possibly-helpful records as I had. (I don't know that the psychologist was interested in all of them.) I took copies of: my Autism Spectrum Quotient test response and scores, results from personality tests I had previously taken, all my report cards and college transcripts, scores from standardized school tests and college admission tests, a resume, and a journal my Mom made for my first year of life. And I took my bride.

I used the Internet to find nearby psychologists who worked with autism and with "old" patients. Then I looked at the websites of the most-promising practices to see if they might do an adult autism assessment--though, as I recall, none of their websites specifically mentioned that (I guess there isn't much call for it). When I called the practice at the top of my list I got the Office Manager--and to her knowledge they didn't do adult autism assessments but she'd check (I guess there isn't much call for it).

It turns out one of their psychologists could do the assessment, and the reason the Office Manager didn't know that was, I guess, there hadn't been much call for it.

The assessment was actually kind of fun. And parts of it were clearly intended for children.


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barfing_skull
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29 Dec 2020, 3:10 pm

The idea that there might be something there has been in the back of my mind for at least 10 years, but I've really only started to look more deeply the last several months. A lot of the stories, and people, seem relatable in a lot of ways. I could produce a plethora of anecdotes and observations. But I'm also kind of a born skeptic, wondering if I'm just experiencing the confirmation bias, and molding memories to fit the hypothesis. I guess I just need a good body of evidence to make that determination, and that is, for reasons listed, difficult to come by in a formal setting when the diagnostic criteria, where they exists, are inconsistent and in flux. I'm getting the distinct impression that I'm far from alone with this frustration. A formal diagnosis, if available, might help provide some strong evidence, but regardless of what that might say, I'm not sure I'd consider that definitive. A good hypothesis requires falsifiability, and that's a difficult thing to define in this case - how would I know if I'm actually not on the spectrum, and these symptoms are just coincidence?

Just looking it up with a quick search, it indicates autism affects about 1 ind 54 children, which isn't all that rare. But that is just a raw number that doesn't take into account severity or anything.

I've pondered asking my parents about some elements of my childhood, considering they've remarked on some things that are definite traits, but I'm not sure what I'd have them compile as far as evidence goes? How do standardized test scores fit in? I took the SAT, ACT, and later the GRE back in the 90's. I think I have my college and grad school transcripts somewhere. I've already started cataloging some of my own observations, but again, they're only things that correlate positively with spectrum traits, since that's what I'm looking for.

One thing I am interested in is sharing experiences. I can read up on symptoms in a high-level context on a lot of sites, but I'd like to know how some of those high-level traits might manifest differently. For instance, I don't have a hard time looking people in the eye while I'm talking to them, but I absolutely hate making eye contact with strangers, and wish it were acceptable to wear mirrored sunglasses 24/7 in public, inside or outside. I also don't like having pictures of people on my walls. So, is this a variation on same spectrum trait that others experience, or something different? Perhaps there's a good area here on WP to talk about those things?

As an aside, I was in Alpena about 5 years ago. Went to a museum, National Maritime Sanctuary or something? I have a water bottle from there. I enjoyed the visit.

Thanks all, and cheers!



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29 Dec 2020, 3:12 pm

Welcome.


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technicallyedible
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29 Dec 2020, 3:43 pm

Welcome Barfing Skull! I just joined too and I feel like I am listening to myself right now. Your skepticism is palpable in your posts. When skepticism stalls you out I find the best thing to do is treat it like a young puppy and give it more evidence to chew on. The main thing that has allowed me to have some peace of mind is asking people close to me about their recollections of events or behaviors (I don't lead with autism in soliciting their input). I can then ask pointed questions as to how they perceived that event (Did you think it odd? Did I provide a reason for this at the time? What did it look like I was doing in x situation?) When I couldn't get a clear or illustrative response, I might insert a mutually known person into my role in the scenario and ask them if they would have found it odd for that person to do 'x'. I realize this explanation is convoluted so I will cut it out.
The point I am trying to make is that finding discreet points of reference within your "social environment" will be helpful in reviewing your memories. Keeping a diagnosis as a subject out of these interviews is imperative. I approached it as "catching up" which in hindsight is pretty out of character for me but I am sure you could improve on my approach!

Best of luck! It's great to find folks going through similar situations with this.


T.E.



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29 Dec 2020, 3:52 pm

technicallyedible wrote:
Welcome Barfing Skull! I just joined too and I feel like I am listening to myself right now. Your skepticism is palpable in your posts. When skepticism stalls you out I find the best thing to do is treat it like a young puppy and give it more evidence to chew on. The main thing that has allowed me to have some peace of mind is asking people close to me about their recollections of events or behaviors (I don't lead with autism in soliciting their input). I can then ask pointed questions as to how they perceived that event (Did you think it odd? Did I provide a reason for this at the time? What did it look like I was doing in x situation?) When I couldn't get a clear or illustrative response, I might insert a mutually known person into my role in the scenario and ask them if they would have found it odd for that person to do 'x'. I realize this explanation is convoluted so I will cut it out.
The point I am trying to make is that finding discreet points of reference within your "social environment" will be helpful in reviewing your memories. Keeping a diagnosis as a subject out of these interviews is imperative. I approached it as "catching up" which in hindsight is pretty out of character for me but I am sure you could improve on my approach!

Best of luck! It's great to find folks going through similar situations with this.


T.E.



I mentioned "not leading with the subject of autism" because I am aware that many folks (NT or otherwise) are wont to dissuade others from "troubling thoughts". You don't want them falsely refuting your memories EITHER. To some this might come off as having a lack of trust but I think being transparent when asked is sufficient. <----- Not the best judge of this kind of stuff = P. Taken with a grain of salt, anything can be palatable.



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29 Dec 2020, 5:08 pm

barfing_skull wrote:
Just looking it up with a quick search, it indicates autism affects about 1 ind 54 children, which isn't all that rare. But that is just a raw number that doesn't take into account severity or anything.
I can't put my finger on where I got the data but my understanding is that about 1 in 250 have Asperger's Syndrome or ASD-1.
barfing_skull wrote:
I've pondered asking my parents about some elements of my childhood, considering they've remarked on some things that are definite traits, but I'm not sure what I'd have them compile as far as evidence goes? How do standardized test scores fit in? I took the SAT, ACT, and later the GRE back in the 90's. I think I have my college and grad school transcripts somewhere. I've already started cataloging some of my own observations, but again, they're only things that correlate positively with spectrum traits, since that's what I'm looking for.
I have to emphasize that I don't know which of the records I gave to the psychologist were useful to them. I know she looked at that journal my Mom kept of my first year. I know she talked to my bride and had her take a written test. I know she gave us questions to ask my still-living-but-very-old Dad. I think she may have looked at my resume but I don't know whether it was used for the diagnosis or just to pad the written report. I don't know if she even looked at the other stuff.

If your parents are alive I'm guessing the psychologist might want to ask them questions. If you want to approach things a little more carefully than I did, you could leave it up to the psychologist to tell you which of the available records they'd like copies of. I worked in IT, not psychology; I can give as honest a confused face on this stuff as you can.

Trivia: My Dad is still alive and I have a sister who lives near him. She works as a nanny for special need kids; on one of her visits with Dad she had one of the special needs kids with her, a kid thought to be autistic. The report I got was that several times Dad said the kid was doing the same "weird" things I used to do. I have been unable to get a clear report on what the "weird" things were but that kid was doing them in 2018 and Dad remembered me doing them back when Eisenhower was president--apparently I made quite an impression! That was the hint that got me looking into autism.


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