Does This Count as a Diagnosis? Does It Even Matter?

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usagibryan
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28 Nov 2022, 8:29 am

I just recently started seeing a therapist and I would appreciate some feedback. I've only had two visits so far. The actual reason I sought out a therapist is for anxiety. I'm at a point in my life where I finally feel "happy" or at least comfortable and there are no glaring problems that need to be fixed but I still have intense anxiety and nightmares. I'm also fixing other issues I've neglected (dental, medical, etc) and the doctor said except for slightly high Cholesterol I'm perfectly physically healthy, all my symptoms are probably just anxiety, so here I am.

On the first visit she asked me to make a list of "things I feel were not normal growing up." After skimming the list she said it sounds like "a lot of trauma, OCD and Asperger's." She also mentioned she has a son with autism. I told her that when I was a kid they wanted to test me for autism but my mom refused because she was afraid they would put me on another medication. I don't remember who mentioned it first, I feel like if I mentioned autism first I may have contaminated her assessment. But I guess she would know better than me, being both a therapist and a mom of a child with autism? Does this mean I'm diagnosed or is a therapist reading over a list of your childhood oddities and remarking "sounds like a lot of Asperger's" not an official diagnosis? And what difference would that make? Do I WANT an official diagnosis?

On an unrelated note, I told her I had an online degree and had never physically been to college (something that always bothered me), my mom basically signed me up without my permission. She said "if I was your mother, and I'm old enough to be, I would have determined you are too socially inept to go away to college and would have you either go online or to a school that was close to home." Her use of the phrase "socially inept" felt like a whack over the head. Do therapists normally talk like that? Even if it's true I can't help but feel a bit offended.

Something else that is bothering me. Even though my purpose in seeking a therapist at this point in my life was not to get a diagnosis for aspergers, I used to want one. I thought being diagnosed would make me feel better, like "ah that's what's wrong with me, that's why I felt different and struggled so much in my social life compared to my peers, now I have an explanation." I've forgotten all about it but now that it's happened (sort of?) the opposite is true though, I actually feel kind of sh***y, like someone put a straight jacket on me. I feel labeled and restricted. Like the teachers who treated me different and put me in the "special class" for kids with behavior problems and made my lesson plan based on the assumption I wouldn't go to college were right all along.

I know it I need to give it more time but is it normal to feel this sh***y after going to therapy for the first time?

EDIT: I hope I didn't offend anyone with this post, it's not my intention to imply there is anything wrong with being on the spectrum, that's just the emotional reaction I had, and I think being called too socially inept to go away to college played a large part in it.


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Double Retired
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28 Nov 2022, 9:57 am

It sounds like you got an informed opinion from your therapist...not a formal diagnosis.

There is a standardized testing process for making a formal diagnosis. It should be administered by a psychologist who works with Autism and with patients your age...and, ideally, who fits into your insurance coverage.

Other unofficial ways to reinforce that opinion could be:
]>- Autism-Spectrum Quotient Test (AQ)
]>- Aspie Quiz Registering is optional!

Does it matter? That's up to you.

Do you think you need formal accommodations (for instance, at work or school) for being Autistic? I don't know much about that but I suspect a formal diagnosis would be appropriate for that.

Are you secure enough in life that gaining that label would not harm you? (Though note that the label would only be an issue if you tell folk you are Autistic. Would you have to tell anyone?)

Do you want to know?

I knew nothing about Autism until I was 64 and only by chance was lead to learn about it. I'd been happily, comfortably retired since I was 56 and in a stable marriage even longer. I had muddled through life just fine without knowing I was Autistic. The only accommodation I would like is for my assorted medical providers to give me stuff in writing (even when I tell them I need stuff in writing because I'm Autistic they still seldom give me stuff in writing, though). As near as I can tell there has been no practical value from my diagnosis of Autism Spectrum Disorder, Level 1 (Mild). Yet I am very, very pleased by the diagnosis! It explained so many things in my past.

P.S. The diagnosis process was kind of fun! I enjoyed it!


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usagibryan
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28 Nov 2022, 10:33 am

Double Retired wrote:
It sounds like you got an informed opinion from your therapist...not a formal diagnosis.

There is a standardized testing process for making a formal diagnosis. It should be administered by a psychologist who works with Autism and with patients your age...and, ideally, who fits into your insurance coverage.

Other unofficial ways to reinforce that opinion could be:
]>- Autism-Spectrum Quotient Test (AQ)
]>- Aspie Quiz Registering is optional!


I've taken online tests and they always say I'm on the spectrum, but I know that's not the same as a professional assessment.

Double Retired wrote:
Does it matter? That's up to you.


I was just wondering what difference it actually makes. If my therapist casually determines I am but I never get an "official diagnosis" at least I know and I'm getting therapy for it right?

Double Retired wrote:
Do you think you need formal accommodations (for instance, at work or school) for being Autistic? I don't know much about that but I suspect a formal diagnosis would be appropriate for that.


No, I don't even know what that would look like, and I would rather not be treated differently and hurt my career chances. I just need to survive in my current position until I can acquire one in a less triggering environment.

Double Retired wrote:
Are you secure enough in life that gaining that label would not harm you? (Though note that the label would only be an issue if you tell folk you are Autistic. Would you have to tell anyone?)


I don't know how it would "harm" me. As per my post above it seems I already reacted negatively to it, which is a reaction I was not expecting, but I'm not sure how much of that negativity is wrapped up in "too socially inept to go to college" which is the other thing my therapist said. If it's the truth though I will just have to get over it. I wouldn't tell anyone I wouldn't want to, only people who are close to me. Unless you mean my diagnosis would have to be disclosed for some legal reason? Does that happen?

Double Retired wrote:
Do you want to know?


Absolutely, why wouldn't I want to know? I want to understand myself. It would provide context for my struggles.

Double Retired wrote:
I knew nothing about Autism until I was 64 and only by chance was lead to learn about it. I'd been happily, comfortably retired since I was 56 and in a stable marriage even longer. I had muddled through life just fine without knowing I was Autistic. The only accommodation I would like is for my assorted medical providers to give me stuff in writing (even when I tell them I need stuff in writing because I'm Autistic they still seldom give me stuff in writing, though). As near as I can tell there has been no practical value from my diagnosis of Autism Spectrum Disorder, Level 1 (Mild). Yet I am very, very pleased by the diagnosis! It explained so many things in my past.


If there is any "accommodation" I would want at work it would be for users to follow procedure and make technology requests in writing, preferably the ticketing system (see my rant about work in the subforum "Work and finding a Job"). It would make my job 1000% easier. But that's what they are SUPPOSED to do anyway they just don't do it no matter how much I beg. Is needing things in writing a characteristic of being on the spectrum?

Double Retired wrote:
P.S. The diagnosis process was kind of fun! I enjoyed it!


It was "fun?" What made it fun?


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28 Nov 2022, 11:11 am

Quote:
Double Retired wrote:
Do you want to know?
Absolutely, why wouldn't I want to know? I want to understand myself. It would provide context for my struggles.
Perhaps you just answered the question of whether or not you should get a formal assessment.

Quote:
Double Retired wrote:
P.S. The diagnosis process was kind of fun! I enjoyed it!
It was "fun?" What made it fun?
Typically Autism is diagnosed in children and the assessment procedure has parts that appear to have been designed for children. I saw no reason that this would invalidate the result but the psychologist assessing me seemed slightly embarrassed about doing that step of the process with a 64-year old man. I found that part of the process amusing.

Also, I suspect the attention felt nice. After all, the assessment was about me. I had to respond to what the psychologist said but I was being asked to talk about myself. In other circumstances I get the impression I'm being rude when I spend much time talking about myself.

If you decide to get an official assessment I encourage you to not plan what you will do or say. It is the assessor's job to know how to do the assessment, your job is to act naturally, be honest and be cooperative. (I second-guessed part of my assessment and my guess was wrong...but I think it amused the psychologist!)

The preparation I did in advance was to collect any records that I thought might be helpful. (Resume, transcripts, report cards, etc.) The only record that I know the psychologist studied, though, was a journal my Mom had kept for my first year of life.

Also, my bride cooperated with the assessment. I gather the assessor would probably like cooperation from someone who knows you well and has known you for a long time.


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Fenn
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28 Nov 2022, 1:27 pm

If you live in the united states the diagnostic criteria is in the DSM.

goodreads.com - book - Diagnostic and Statistical Manual of Mental Disorders
cdc.gov - Autism - DSM

Any "tests" are not part of the diagnostic criteria. The are meant to add additional information.
If your therapist is willing to put her opinion in writing, and this is acceptable to someone you need to convince that you have a diagnosis, then it "counts". For example, if you want accommodations in college, you might need a diagnosis in writing. If they accept the diagnosis in writing from your therapist, then it counts. If you want a job with a company that only hires people on the autistic spectrum, and they accept the written statement from your therapist then it counts.
If you want to be accepted by people on Wrongplanet and you add the diagnosis to your signature - and people accept it then it counts. If you want to convince yourself that Autism is real, and you really "have it" and you are willing to take your therapist's word, then it counts. Same goes for if you want extra time on the SAT or MCAT.

For each of these situations you may or may not find that the word (in writing) of this therapist is enough. If not then it "doesn't count".

For example, if your therapist is a grad student without a license or a degree, people may not take it very seriously. If your therapist is a PhD and teaches at a well known teaching hospital, and has published books, written peer reviewed journal articles on Autism, is a frequent guest speaker at Autism conferences, it may "count" more.

In my experience, some schools are skeptical of professionals who are known to say (or suspected of saying) anything as long as they are payed to say it.

If you feel like you need tests to be "sure" then ask for the tests, or find someone who does the tests. If you need to present paperwork to someone, ask them for clarification on they exact criteria they will be using.
There are statistical instruments ("tests") which are a list of questions for you to answer, or for your parents (yes even for adults) to answer. There are also biomarker "tests" like SPECT scans, or EEG, MRI, fMRI, and genetic tests. Frankly there is little agreement on how these biomarker tests match to the DSM - but they can still give information to help with a diagnosis.

In Europe it is the ICD, not the DSM that matters.

goodreads.com - book - International Classification of Diseases (ICD) 10

If you only want to convince yourself - it may not matter what anyone else thinks.

More Links:

cdc.gov - Autism - Screening
autism.org - Screening Assessment
ncbi.nlm.nih.gov - Biomarkers in Autism
ncbi.nlm.nih.gov - Investigating Potential Biomarkers in Autism Spectrum Disorder
cdc.gov - Autism - American Academy of Pediatrics (AAP) Recommendations
ncbi.nlm.nih.gov - Functional magnetic resonance imaging of autism spectrum disorders
oatext.com - Functional SPECT distinguishes autism spectrum from healthy subjects
ncbi.nlm.nih.gov - Electroencephalographic (EEG) Abnormalities in Autism


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usagibryan
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02 Dec 2022, 9:06 pm

I just had my third session, this time she said a lot of what we discussed sounded like autism, but she doesn't think I would have gotten this far in life if that was the case, so she's just going to call it anxiety. :?


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03 Dec 2022, 6:20 pm

usagibryan wrote:
...this time she said a lot of what we discussed sounded like autism, but she doesn't think I would have gotten this far in life if that was the case...
I think they just established that they do not know what they are talking about.

Autism is a Spectrum. Some people get milder symptoms, some people get more severe symptoms.

Some people are seriously disabled by Autism but, for instnce, Elon Musk, Dan Akroyd, and Anthony Hopkins have all reported that they are Autistic. They have all gotten far in life despite being Autistic.


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When diagnosed I bought champagne!
I finally knew why people were strange.