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kokokoko99
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22 Feb 2024, 12:19 pm

I am Korean and diagnosed with autism. But I was shocked to read an American book.

(Devon Price, Unmasking Autism: Discovering the New Faces of Neurodiversity, 2022)

Does the adult autism community in the United States recognize self-diagnosis?

and Does that include people who have been diagnosed by an expert as not having autism?

Isn't self-diagnosis pseudoscience?

I was shocked that Devon Price's book was so popular.



magz
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22 Feb 2024, 12:35 pm

Diagnoses are needed for things like state-sponsored support or official medical documentation.
Communities are for sharing experiences.
We consider it different areas.
This particular community does not require official diagnoses, only respect for autistic experiences all over the world.


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22 Feb 2024, 12:36 pm

Yes, this community approves of those who are self-diagnosed although it was more of a problem in the past. Many of us with autism diagnoses were diagnosed later in life. It doesn’t mean that we didn’t have autism before that. Getting evaluated can be expensive and isn’t accessible to everyone.


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22 Feb 2024, 3:05 pm

Depends which community.

The states themselves? No.
Medical community? No.
Local community? Learn their culture first, I guess? But majority may say likely no.

Autism community? Depends which.
Autistic community? May vary, but recently more likely than not; yes.

Support groups? Depends on their rules and dynamics; learn their culture.
Media? Well, again that depends and just as relative.


Here?
We do not mind apparently.


As magz say; it's a different matter.

There's your medical diagnosis status and how it is legally handled, and then there's your society's and your own attitude and the experiences with or without the diagnosis.


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kokokoko99
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22 Feb 2024, 3:44 pm

Edna3362 wrote:
Local community? Learn their culture...Support groups? Depends on their rules and dynamics; learn their culture


Did I use an offensive expression because I don't speak English well? If that's the case, I apologize.



Edna3362
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22 Feb 2024, 3:48 pm

kokokoko99 wrote:
Edna3362 wrote:
Local community? Learn their culture...Support groups? Depends on their rules and dynamics; learn their culture


Did I use an offensive expression because I don't speak English well? If that's the case, I apologize.

No. :o
You didn't say anything offensive.


There's just different communities came with different rules, making different cultures, different contexts...


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22 Feb 2024, 3:49 pm

A lot of people can't afford to pursue formal diagnosis, if they don't believe they have much need for support it might not be a justified cost.

Until everyone who needs evaluation can receive it regardless of their finances it's hard to act like self-diagnosis can't be valid.


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23 Feb 2024, 8:22 am

안녕하세요!

The research around the accuracy of Autism self-diagnosis is around 80% from what I understand. It shouldn't be too much of a surprise when you think about it; people diagnose themselves with mental health conditions frequently and accurately without it being questioned: anxiety, depression, OCD, addictions, PTSD, the list goes on.


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ezbzbfcg2
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23 Feb 2024, 8:27 am

There's an option when joining this site. Something like "I have Autism - Diagnosed" vs. "I have Autism - Undiagnosed."

So, this forum is open to the idea of people self-identifying as Autistic without having an official diagnosis.

HOWEVER, this forums also seems big on the rule that no one here can diagnose anyone else or even give an opinion on someone's status. So, if someone suspects they have Autism, they can join here, but can't directly ask anyone here to confirm or deny it.



autisticelders
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24 Feb 2024, 9:19 am

"self identified" is a better way to describe "self diagnosed".

Many people in many places do not have access to diagnosing professionals, especially those born before 1980. May professionals have not kept their understanding and information about autism up to date (so much new understanding of autism as being neurological and developmental today as opposed to "behavioral" when many professionals first obtained their education)

This makes it so difficult for those adults seeking professional diagnosis to obtain it. Most people who self identify as autistic/ self diagnose do so after sometimes years of seeking information and learning about autism .

Many autism support groups do understand these struggles and self identified autism is well accepted in many groups.

Self identification can not be used to gain support or accommodations from the government, employers, doctors, etc however, and "official diagnosis" is required for those uses.

There is very little "autism support" available in most places regardless, and autism diagnosis carries a stigma in many places, so sometimes self identified autistic people use this mode to help themselves understand their past and their struggles and make sense of it all, and never attempt formal diagnosis.


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24 Feb 2024, 9:48 am

Honestly depends who you ask.

I am in favor of well-researched self diagnosis. Almost went that route myself.


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24 Feb 2024, 10:27 am

kokokoko99 wrote:
I am Korean and diagnosed with autism. But I was shocked to read an American book.

(Devon Price, Unmasking Autism: Discovering the New Faces of Neurodiversity, 2022)

Does the adult autism community in the United States recognize self-diagnosis?

and Does that include people who have been diagnosed by an expert as not having autism?

Isn't self-diagnosis pseudoscience?

I was shocked that Devon Price's book was so popular.

Getting diagnosed is a pretty big deal in the US, and no it's not pseudoscience. Officially, I'm OCD, ADHD and Schizo. In reality, I'm almost certainly ASD rather than schizo. Psychotic disorders don't magically go away with a dose of ritalin.

As far as pseudoscience goes, you've got that backwards. The official diagnoses are given based on extremely shoddy science with the lines being drawn in ways that aren't based in any real science and largely done for the sake of consistency, even if it tosses a lot of people in need of support under the bus.

The self-diagnoses are typically more reliable as people don't typically self-diagnose without a lot of research and effort being put into it. Very, very few people want to be autistic if they don't have enough traits that they only fit in with autistic people.
ezbzbfcg2 wrote:
There's an option when joining this site. Something like "I have Autism - Diagnosed" vs. "I have Autism - Undiagnosed."

So, this forum is open to the idea of people self-identifying as Autistic without having an official diagnosis.

HOWEVER, this forums also seems big on the rule that no one here can diagnose anyone else or even give an opinion on someone's status. So, if someone suspects they have Autism, they can join here, but can't directly ask anyone here to confirm or deny it.


I wish there'd be a 3rd option for semi-diagnosed. I personally only lack an AS diagnosis because I had conflicting schizophrenia spectrum diagnoses that prevented it. It was pretty clear that I would have had the AS diagnosis if I didn't have the childhood schizo stuff on my record. But, at the time, neither I nor the neuropsychologist knew just how screwed up the DSM 5 would be. I sort of assumed that since there were no resources for adults and that I was functioning fine, that I'd have the option of getting a re-evaluation under similar rules with more information to work with. I was so very, very wrong. A few years later the DSM 5 came out and absolutely nuked the relevant diagnoses from high orbit without providing any sort of meaningful option to cover me. While grandfathering in a lot of people who were in the same boat as I was. but decided to push and get the diagnosis at that point.



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25 Feb 2024, 11:45 am

Self diagnosed or self identified are allowed to members of wrong planet. This is generally true for most support spaces for Autistics.

While not all members of wrong planet agree with self diagnosis at the present time there is a live and let live attitude about this issue.


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02 Mar 2024, 6:58 pm

There are reports of people who fake having a diagnosis in order to join online communities or to attract attention to themselves. Perfect example is Jerry Seinfeld (whom I'm a big fan) who threw the label around but there's no evidence he's ever been diagnosed.

This is why I always self-disclose that I am NT online so there is no ulterior motives on my part.

So in that respect I don't think people who self-diagnose should advertise themselves as autistic. It's not fair on members who are actually diagnosed.