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r00tb33r
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13 Aug 2022, 11:30 pm

My mom told me today to go into groups and be social. I reminded her that I'm not a regular person and it just doesn't work for me, groups make me feel like I don't belong, I feel like I'm in a glass box, or an outcast, and I can't casually socialize. "Then just be a regular person then," she said.

...

Mom: "You're self-diagnosing yourself with that nonsense."
Mom: "...Besides, they don't even diagnose people with that here."

Ugh.

On a typical day I don't identify as "different" or "special", but I do know my limits well.


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temp1234
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14 Aug 2022, 12:43 am

My sympathy to you. That's very difficult. That lack of understanding makes an autistic person's life unnecessarily difficult. Particularly coming from your own mother.

If you haven't already got a diagnosis, you should get one. It's really handy because it officially proves that you have certain difficulties. I rely on mine. Otherwise, my life would be harder.



r00tb33r
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14 Aug 2022, 1:03 am

temp1234 wrote:
My sympathy to you. That's very difficult. That lack of understanding makes an autistic person's life unnecessarily difficult. Particularly coming from your own mother.

If you haven't already got a diagnosis, you should get one. It's really handy because it officially proves that you have certain difficulties. I rely on mine. Otherwise, my life would be harder.

Getting a level 1 ASD diagnosis as an adult in the states is very difficult. I sought it once years ago, it was next to impossible. Then I sought it again year and a half ago. Offices either didn't return my calls or put me on waiting lists to never be heard from again. There is not even a guarantee that it's possible, that's just to be seen by a specialist.

Years ago when I read literature on it, I re-experienced traumatic events in my life, accepting them and finding peace with the newfound understanding of why they happened the way they did. Later my mind just went blank on the past, and I could no longer assemble the intricate memories from my development for diagnostic purposes. I made a lot of progress during the past 6 years since I've been aware of my condition, I'm not even sure I can be diagnosed at this point. I'm just worried that if I sit across from a specialist now they'd just laugh in my face.

No, I don't mean that I'm worried that I'm fake. I just became comfortable with my past having understood it. It doesn't haunt me enough to recall it.


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CockneyRebel
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14 Aug 2022, 5:28 am

I can't stand it when people say that to me. I ask for advice on what to say to people and I get told to be a regular person and say what's on my mind.


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naturalplastic
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14 Aug 2022, 5:41 am

Your mom should be aware that you ...dont really know how to be this thing she calls "a regular person".

But on the other hand if I were your mom I would do basically the same sorta thing that she is doing: encourage you to be active in interest clubs, and to get out there and to be with other people. So you can learn how to be ...a 'regular person' - or a reasonable facsimile thereof.

Both you and your mom should be aware that you're gonna take some hard knox, and screw up the socializing game now and then, but that you have to just get up, brush yourself off, and keep on going.



timf
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14 Aug 2022, 6:15 am

There was a BBC comedy show called "Yes, Minister". In one episode a civil servant was commenting on the interest level of the public regarding foreign affairs;

"People just want to know who are goodies and who are the baddies".

This reflects what might be called uni-dimensional thinking. Sadly, it is true that perhaps most people can only see the world in binary terms. Attempting to communicate with such people is difficult. You might be limited to describing your reluctance to participate in social groups as simply a preference. It would be nice if we could communicate fully with others.



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14 Aug 2022, 12:03 pm

I am in the U.S. and would say the process of getting to having an ASD diagnosis...in 2019 at age 64...was "interesting."

My medical insurance includes some "Mental Health" coverage. When I telephoned them they said it would cover an Adult Autism Assessment. The problem I ran into was that, even though they wanted to be helpful, they didn't know how to help me. They gave me bad referrals and bad information. When I finally got correct information on how to get an assessment things went pretty quickly.

The correct answer, which the insurance company did not know, was:

I needed a licensed psychologist who worked with Autism and took patients my age.
I don't know that all psychologists who satisfy those criteria can do an Adult Autism Assessment but they will know if they can.

Note, I said "they" will know. Their web page and the person who answers their phone might not know! I did not find any psychologist whose web page said they did Adult Autism Assessments. When I first contacted the practice that did my assessment the person who answered the phone (not one of the psychologists) doubted they did Adult Autism Assessments but, fortunately, was conscientious enough to ask the psychologists.

I found the https://www.findapsychologist.org/ web page useful in finding candidate psychologists to call. I used it to find psychologists in my area who worked with autism and with patients my age. But I had to call the practice to find out if they would do an assessment.

Financial consideration: If you are using insurance for the assessment be sure you follow the insurance company's rules. Try to stay in-network, etc.


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r00tb33r
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14 Aug 2022, 2:21 pm

My insurance has mental health coverage. I went down the list of specialists in my insurance directory.
The representative filtered it for me by those who have listed autism as a keyword of their expertise.

Offices either did not return my calls or put me on waiting lists a year and a half ago, never to be heard from again. Not a single one to schedule an appointment at.


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r00tb33r
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17 Aug 2022, 3:07 pm

I have sent a message to a practice near my workplace requesting an appointment for assessment. They previously put me on a waiting list and never called me again.

We'll see what happens.


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ASPartOfMe
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18 Aug 2022, 1:02 am

From almost 9 years of reading stories from people here who have gotten an official diagnosis as an adult while an official diagnosis will increase your chances of your traits being accepted it is far far from a guarantee.


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r00tb33r
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18 Aug 2022, 2:13 pm

ASPartOfMe wrote:
From almost 9 years of reading stories from people here who have gotten an official diagnosis as an adult while an official diagnosis will increase your chances of your traits being accepted it is far far from a guarantee.

I feel like that's the right starting point before diving into anxiety and OCD. My understanding is that autism is a platform for other disorders, and I'd rather get the root cause right first.

Back when I learned of it in 2016, when I read the literature, the potential cost was prohibitive for me, I was a recluse living in a room like a lot of people here. I am now in a financial position to just do it.

r00tb33r wrote:
I have sent a message to a practice near my workplace requesting an appointment for assessment. They previously put me on a waiting list and never called me again.

We'll see what happens.

No call, no email. How professional of them.


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DavidJSNSW64
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18 Aug 2022, 4:51 pm

I’m not sure if I know what ‘a regular person’ is.



naturalplastic
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18 Aug 2022, 5:15 pm

DavidJSNSW64 wrote:
I’m not sure if I know what ‘a regular person’ is.


A person who takes Metamucil. :D



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20 Aug 2022, 2:05 am

In Japan, it is normal to maintain a "formal" appearance in public, similar to the way that a butler may have to exhibit a pretty narrow range of responses if he wants to keep his job.

In Norway, just before the Nazi occupation, all the inmates of the insane asylums, etc, were dispersed through the community, to save them from possible death. After the war, they couldn't be found again.

There was an insane asylum that had a sudden burst of cures on a chronic ward. It was traced to a hippie janitor who would talk with the patients who were up at night. After a while, they told him that he seemed just as crazy as anyone there, so why did he get to go home every day? He explained that he only talked about the crazy stuff with certain friends, and didn't puzzle the others.

My friend Steve is a very free-spirited type, so I was surprised that he had stayed with a very Bible-oriented couple for a stopover. He said that he just didn't argue or offend, and kept the conversation on common interests.

Not everyone can do these tricks, but it may not be as impossible as it first seems. In a society that worships actors, almost everyone may be indulging in some fakery.



CockneyRebel
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20 Aug 2022, 7:34 am

How is a regular person supposed to act?


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ASPartOfMe
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20 Aug 2022, 3:24 pm

r00tb33r wrote:
ASPartOfMe wrote:
From almost 9 years of reading stories from people here who have gotten an official diagnosis as an adult while an official diagnosis will increase your chances of your traits being accepted it is far far from a guarantee.

I feel like that's the right starting point before diving into anxiety and OCD. My understanding is that autism is a platform for other disorders, and I'd rather get the root cause right first.

Back when I learned of it in 2016, when I read the literature, the potential cost was prohibitive for me, I was a recluse living in a room like a lot of people here. I am now in a financial position to just do it.

While it helps a lot if others accept an official diagnosis, the decision whether to go for it is not about them, it has to be about your needs.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman