Diagnosis with "Mild Asperger's": Thoughts?

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r_omega
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25 Feb 2022, 1:24 pm

Double Retired wrote:

r_omega wrote:

However, and I was afraid to admit this earlier for some reason, when he "tested" me on autism, it seemed like he just Googled "autism test" or had a link in his web browser, maybe it was some sort of official exam on his computer but it didn't seem that way. He asked me maybe 20 questions, and then IIRC just declared that I have Asperger's.

I kind of get the impression you were "diagnosed" because it was kind of the impression they got.

As QFT noted, "Asperger's Syndrome" is no longer an official diagnosis in the U.S. It got dropped in 2013 when the U.S. switched from DSM-4 to DSM-5. Additionally, I think diagnosing Asperger's requires information about your early development of language skills—like before you were two—did your therapist get that kind of info about you?

I know of two online tests for Autism traits:
>=>- Autism-Spectrum Quotient Test
>=>- Aspie Quiz ^{Registering is optional!}

After my bride and I concluded I was probably a high-functioning Autistic I found the AQ test when I searched the Internet. It declared that my score indicated significant Autistic traits. Not a declaration that I was Autistic, just an impression I resembled one. That is what convinced me it would be reasonable to get a formal assessment—which involved a lot more than a few questions.

Your therapist's impression may or may not be correct but it doesn't sound like an official diagnosis. If you're happy with that then, well, you are happy with that. Getting a formal diagnosis might be an unnecessary nuisance for you.

If you decide to seek official accommodations for being Autistic you should probably seek an official diagnosis. But if you're old enough you've probably been muddling along reasonably well. In which case a diagnosis might be a wonderful enlightenment but perhaps only marginally useful.

I retired in 2011 and first suspected I was Autistic in 2019. I was delighted to finally understand so much of my life but the only practical benefit, so far, is that when my bride bumps up against one of my Autistic traits I can say: "I have a doctor's note for that!" Note: This amuses me more than it amuses her.

I have tried using the diagnosis to adjust how my medical providers handle me. First and foremost, I want them to give me stuff in writing. But, I was asking for that before I knew I was Autistic. Before I was known to be Autistic some providers gave me stuff in writing, some didn't; now that I can cite my official diagnosis some providers give me stuff in writing, and some still don't.

r_omega wrote:

Side note: Have any of you seen the show Love on the Spectrum on Netflix? Without knowing any better, I would have never thought Kassandra was on the spectrum. So I guess I'm bringing this up because I think I'm a lot like Kassandra in that way, so maybe I need a more formal assessment?

I have not seen Love on the Spectrum [2019– ] but others on WP have. You might want to visit this thread.

On the theme of Autistic characters on TV we did enjoy The Bridge [2013–2014]. There has been more than one "The Bridge" but the 2013–2014 one on U.S. TV had the benefit of a good Autism consultant to help them get it right. (Oh. He previously co-founded Wrong Planet.)

And we are currently working our way through The Big Bang Theory [2007–2019]. We'd seen a lot of it before, but now that we know more about Autism...well Sheldon certainly gives kind of an impression.

Thanks for sharing those quizzes. The first one I got 35 out of 50, here are the results of the second one, which said I am likely neurotypical:

The more I take these quizzes, the more I gain a sense that I have these common NT traits:

- I think I have a good ability to empathize and read others
- I am not terribly afraid of social interaction; I often feel it is a chore but I know it is good for me and as a result I often pursue others because of this
- I love math and am a math teacher but am not obsessed with numbers or patterns
- I do not have any repetitive physical behaviors
- I am not spontaneous but I also do not need very rigid routines
- I am very verbose and like to talk and lay my thoughts out in great detail but I think I am also a good listener and generally a decent conversationalist (though I often say things that surprise people and might make it seem that I lack social skills)
- I have no interest in fantasy; I only read nonfiction though I do enjoy regular movies i.e. not just documentaries and biopics

One other random thought: I am an INFJ, I wonder what percentage of INFJ's are on the spectrum.

Double Retired
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25 Feb 2022, 3:19 pm

AQ=35? Did the score come with a note that "Scores in the 33-50 range indicate significant Autistic traits (Autism)?"

But the other test said NT.

I'll have to defer to the experts (and I am not one of them) but it sounds like either you're somewhere in the blurry lower edge of the Autism Spectrum and it would take an expert to determine whether or not you were on the Spectrum—or you fell into some other condition that had many of the same traits as Autism.

For instance, when my bride and I were learning about Autism to see whether or not we thought I was Autistic she was surprised because she had many of the Autism traits, too. She is ADHD, however, and strong ADHD happens to share many traits with mild Autism. ADHD is not the only thing that overlaps Autism.

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r_omega
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25 Feb 2022, 6:14 pm

Double Retired wrote:

Yeah in the 33-50 range for that test. I am diagnosed OCD, pretty sure that's an "official" diagnosis, so I think it's quite possible that I'm neurotypical with OCD.

Thanks for your feedback! I'm following up with my new clinic to see about having a more formal test done.

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25 Feb 2022, 6:40 pm

Good luck! And you get to decide whether that means you are or are not on the Spectrum.

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CarlM
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25 Feb 2022, 7:03 pm

Did he ask you about your childhood? Having difficulties is childhood is required for a diagnosis. If you are uncertain you could check school records, ask parents, etc.

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r_omega
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25 Feb 2022, 8:58 pm

CarlM wrote:

Did he ask you about your childhood? Having difficulties is childhood is required for a diagnosis. If you are uncertain you could check school records, ask parents, etc.

Hi, thanks for replying.

No, he didn't. Someone upthread mentioned accommodations for a diagnosis, even as an adult, and that would make sense that one would need evidence of difficulty as an adolescent. Well I have to say, before college, I can't say I ever really felt all that "different" than other kids and I can't say I ever felt I had any unusual struggles (when I told my Mom about my "informal" 2019 diagnosis, she said the same thing). All my adult life though, my difficulties have indeed threatened my ability to remain employed and thus be independent.

That said, I don't know what kind of accommodations exist for adults with autism but I am not looking for any here, just the peace of mind to have an expert confirm that this is why I have had these troubles in my (adult) life.

The main thing that I think has been causing problems for me is this kind of extreme attention to detail and intensity that I think makes it hard for some people to have relationships with me, be it social or professional. I work on that with my therapist regardless of an ASD diagnosis, and at this point I'm not entirely sure how important a formal diagnosis is to me. But I already asked about it and am now just waiting for a response.

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26 Feb 2022, 1:29 pm

Your characteristics are a lot like mine. A lot. I relate to all aspects of your first post as well as your post about NT traits. I find the ASD part is that our "NT" traits are more intense (hence an ASD manifestation). NTs read books - but not as many or for as long. NTs write emails, but not for 30 min for a "quick" one. NTs like math - but (given my personality ENFP --- INFJ when in recovery) they are not bubbling over with it. NTs feel, but have more options between shutdown or overwhelm. My ASD mom and I are both empaths. My mom is not diagnosed. My daughter has ASD and I am having a hard time getting her diagnosed, in part, I've supported her too well and also my reporting is ASD-biased (the world as I know it) ---- "when I say she's 'flexible', it's relative to my experience --- you (NT-evaluator) would call this 'rigid'".

I lived 48 years undiagnosed and thought I was normal. Now after 2 years I can see how very Autistic I am. For me that's the hardships are a bit of Sensory Processing difficulty, a bit of ADHD, a bit of OCD, etc. and a lot of Anxiety. The easyships are genius-level visual processing, making connections in massive amounts of information or systems, rapid crisis response, compassion, etc.

This ASD list was helpful for me. http://www.myspectrumsuite.com/samantha ... checklist/

At first I was like: I am not a prolific writer, I haven't written even one book, and then I realized my childhood letters, my journal during a difficult time, and work feedback would indicate I am. Also, it's from an NT's perspective: comfortable ASD communication is when one speaks as much or as little as necessary or desired -deeply, but NT communication is 10-30 second turns -shallowly --- which is uncomfortable to navigate. It's not that I struggle to communicate "correctly", it's awkward to communicate like NTs. When my (likely) ASD BFF and I sit down, we talk for hours and it's "right as rain". At work, I was once in conversation with another seemingly ASD person (a spouse) and the NT person (a co-worker) was the awkward one. Of course, we adjusted to make the NT person more comfortable. It's fun to reverse the ASD criteria and make it NT: struggles to speak deeply and at length about a subject. :wink:

ToughDiamond
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26 Feb 2022, 2:32 pm

SharonB wrote:

Your characteristics are a lot like mine. A lot. I relate to all aspects of your first post as well as your post about NT traits.

Mine also. Those are the very things I'd quote off the top of my head if somebody asked "what's ASD about you?"

It's been mentioned that early developmental delay is essential to a diagnosis. But I was diagnosed with ASD by a qualified diagnostician who had done research on ASD, and early developmental delay never came up - or if it did I was unable to provide any information about it, as my parents were dead and I couldn't remember any such childhood problem. The DSM wasn't used - I think it was ICD-10 (whatever it was, it was said to be more stringent than DSM). I probably mentioned that I had problems in later childhood, i.e. after the age of 8 or so, but really before that I can't remember much being "wrong" with me.

Whoever mentioned Aspergers and then removed it from your records seems to me like they were acting rather subjectively and informally, and didn't fully understand ASD. I've seen some odd behaviour like that from health professionals, and there doesn't always seem to be very good consensus among them about how to do things, so their individual personalities may have a greater bearing on their actions and conclusions than they ought, when I'd have hoped they'd be more tied to scientific principles.

It's long been my feeling that the question of "have I got ASD or not?" isn't as important as it might seem. If you have certain ASD traits, as you clearly have, then the overarching label might prove less useful than simply studying the traits themselves and figuring out whether you need coping strategies for them, and if so, what they might be. The ASD label's main value (to my mind) is that once you've noticed that a number of your traits match this ASD thing, it's probably worth looking into the other traits, as there's a fair chance that some of those will be there in you as well, and self-knowledge like that can be very useful of course.

r_omega
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27 Feb 2022, 10:13 am

SharonB wrote:

Your characteristics are a lot like mine. A lot. I relate to all aspects of your first post as well as your post about NT traits.

For some reason, feedback like this where "officially" diagnosed people can relate to my life's challenges is comforting. I think the diagnosis is important to me because, if so many other people in my life are going to be apathetic regarding my talents that seem to be inherently connected to the difficulties I have (see my OP), it would be nice to at least be recognized by the medical establishment that I'm not just making this all up. I guess that's not easy to admit but that's how I feel.

SharonB wrote:

This ASD list was helpful for me. http://www.myspectrumsuite.com/samantha ... checklist/

I checked this list out. I started making a note of everything I identify with but wow, that list is long! This is was I identified with in section A:

A deep thinker
A prolific writer (not drawn to poetry thought my sister was a poet)
Highly intelligent ("highly" maybe is a matter of others' opinion)
Analyzes existence, the meaning of life, and everything, continually
Serious and matter-of-fact in nature

I feel "serious and matter-of-fact in nature" really nails it. Reading this makes me realize this is a key component to what sets me at odds with most NTs. NTs typically break up conversation with small jokes. I think it's easy for me to do that with friends I trust and whose sense of humor I know, but I rarely do this with acquaintances. And when I don't react to peoples' injections of humor with a smile or chuckle or annex of their joke, I think that's when they start to question how "normal" I am.

I also think this makes e-communication especially hard. Everything has like buttons and reactions now, and people seem so humorous and sarcastic online, I feel like I never get the reactions other people do because I don't play that sarcasm game.

SharonB wrote:

...comfortable ASD communication is when one speaks as much or as little as necessary or desired -deeply, but NT communication is 10-30 second turns -shallowly --- which is uncomfortable to navigate.

This is a revelation and I think it is so true!

Thanks for the thoughtful comment!

r_omega
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27 Feb 2022, 10:17 am

ToughDiamond wrote:

It's long been my feeling that the question of "have I got ASD or not?" isn't as important as it might seem. If you have certain ASD traits, as you clearly have, then the overarching label might prove less useful than simply studying the traits themselves and figuring out whether you need coping strategies for them, and if so, what they might be.

I agree with this, my therapist has expressed agreement with it also. I am prepared to live my life while continuing to develop coping strategies without a diagnosis if necessary.

Double Retired
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27 Feb 2022, 10:59 am

r_omega wrote:

...it would be nice to at least be recognized by the medical establishment that I'm not just making this all up.

Sigh. I wish you better luck than I've had with that.

My ASD severity is mild. I muddled through to age 64 not even suspecting Autism.

The one area where I would most like some minor accommodation is my interactions with medical providers. I shared my diagnosis with my other medical providers. Mostly they seem disinterested. None have asked for formal documentation.

Even before I was diagnosed I knew I wanted my medical providers to give me stuff in writing. Some did, some didn't. Now when I request getting stuff in writing I mention the Autism diagnosis...still, some do, some don't.

Generally if a provider doesn't give me stuff in writing my bride accompanies when I see them. Mostly that is to improve the odds that what the provider says will be remembered by someone (her or me). There was one (now retired) Primary Care Physician that I always wanted to see with my bride along because I was concerned we might need a referee—I found that PCP to be very aggravating.

One I-like-it-but-they-ignore-it resource I found is the AASPIRE Healthcare Toolkit. (And I don't understand why the stuff in their toolkit is targeted just to Autistic patients. It sounds to me like it is stuff they should do with everyone!)

Also, I get confused when they ask me the "Level of Pain" in terms of 1 to 10. Huh? I don't have a gauge I can look at to get the correct answer. And the chart with the smiley faces doesn't help me. I did find a pain chart that is useful, though! The "Comparative Pain Scale"—I tend to print a few copies of it when I go for medical care. (I recommend downloading a copy and keeping it yourself because I usually have to go searching for it whenever I want an on-line copy.)

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27 Feb 2022, 4:23 pm

Welcome to Wrong Planet r_omega!

Each of us is exactly one person with exactly one brain. No matter how many diagnosis you have or do not have you are still you. The "labels" from the diagnosis for autism, anxiety, OCD, dysthymia (mild depression-like symptoms) are just labels.

You are still you.

The labels can help to understand more about yourself - self knowledge it important and can help with self acceptance - or with making good decisions - my ADHD diagnosis helped me to not beat myself up so much with I do typically ADHD things.
It can also help to read about neurological studies and brain scans that have been done on other people with your same diagnosis. This is true for a diagnosis of Autism in the U.S.A. under the DSM or or Autism or Asperger's in Europe under the ICD. It is also true for a self diagnosis via a free self test. BUT Autism is a spectrum thing - if you have meet one person with Autism you have met one person with Autism. In the U.S.A. official diagnosises of Autism are possible in the current DSM 5 but not of Asperger's - a person who once was diagnosed with Asperger's would now be given a diagnosis of Autism with "quantitative levels" at or near "1" for two different measures. I am not sure of the exact situation in ICD but I think that the latest version of ICD has Asperger's as having moved under Autism and/or being an alternate name for some Autism diagnosis subcategories. It was one thought that Autism and Asperger's were two different things but increasingly most people think they are two flavors of the same thing - with Autism including Asperger's. Some people still prefer "Asperger's" as a name and still want to make distinctions but they are increasingly in the minority.

In any case you are still you - and you can learn more about yourself and others with similar diagnosis and/or self-diagnosis but you are still one person with one brain and you are uniquely you (as you have always been).

And you are welcome here!

Fenn

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28 Feb 2022, 6:33 pm

r_omega wrote:

But they took out Asperger from DSM 5 and ICD 11. What diagnostic criteria were they using to diagnose you, and what country are you at?

Aspergers was still able to be diagnosed in the UK until the end of 2021

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01 Mar 2022, 3:55 am

r_omega wrote:

- I have a very, very hard time with electronic communication. I tend to read too much into comments people make, worried that they are privately thinking negatively of me.

Given your worries about electronic communication, it's good that you had the courage to post here on WP!

Hopefully you will continue to post here and find some nonjudgmental friends.

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Last edited by Mona Pereth on 01 Mar 2022, 4:39 am, edited 2 times in total.

Mona Pereth
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01 Mar 2022, 4:27 am

r_omega wrote:

I just spoke with my therapist, she said she took "autism disorder" off my file mainly because she feels it's a "grey area" for me and that as a rule she takes a less-is-more approach to diagnoses (paraphrasing). I guess at the end of the day, whether I have a diagnosis or not, I can still participate here.

Certainly you can. A diagnosis is not required to participate here.

If you have doubts about your diagnosis and these doubts are worrying you, perhaps you might want to go for a more formal autism evaluation. Possible options include various practitioners at Spectrum Services. See also AANE's list of Asperger/Autism Diagnosticians. (Note that many of the practitioners on this list deal only with children. Only some of them deal with adults.) Unfortunately, there tend to be long waiting lists for adult autism evaluations.

Anyhow, I certainly don't agree with your therapist's "less is more" attitude regarding autism diagnosis. I think it's important to know whether one's social difficulties are the result of an intrinsic innate developmental disability or whether they are just, say, a result of anxiety.

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