Update list of "Diagnosis" choices to include ND etc.

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Rotter
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14 Oct 2022, 8:27 am

The name "WrongPlanet" was a wise choice of name because it's future-proof and cannot become incorrect in the future when the science of autism is better understood. In contrast, if the name of WrongPlanet included "Aspie" or "Aspergers", then it would've already become incorrect or obsolete because the word "Aspergers" has been dropped from autism in recent years.

Even the word "autism" itself isn't safe from changes because the science of autism is poorly understood and will surely change in future, thus the name "WrongPlanet" is better than something like "AutismPlanet". Another problem with a name like "AutismPlanet" is that it excludes neurodivergent people.

So the name "WrongPlanet" is wise. However I suggest the time has come to make a few improvements to the "Diagnosis" item in the account profiles in WrongPlanet.

In the "Your Profile" area of WP...
https://wrongplanet.net/your-profile/

...there is a mandatory item labelled "Diagnosis". It requires everyone to choose one of:

* Have Aspergers - Diagnosed
* Have Aspergers - Undiagnosed
* Not sure if I have it or not
* Family member with Aspergers
* Other autism spectrum disorder
* Neurotypical

I suggest that "Neurodivergent" be added to the list of choices, because it would make WrongPlanet more inclusive to a relevant group of people, and because the science of autism is poorly understood, and the meaning/definition of autism is changing over time.

The word "Neurodivergent" is a wise choice like how the name "WrongPlanet" is a wise choice. For example, if person says, "I'm autistic", then this could become incorrect in future, because of future changes in the scientific understanding of autism, or because of misdiagnosis. In contrast, if a person says, "I'm neurodivergent", then it's future-proof and won't become wrong.

The risk of misdiagnosis is high regardless of whether a person is self-diagnosed or professionally diagnosed. 18-37% of children diagnosed with ASD eventually end up being recognized as incorrectly diagnosed with ASD. The risk of misdiagnosis is much lower when a person says "I'm neurodivergent" rather than "I'm autistic", but WrongPlanet does not allow anybody to choose "Neurodivergent" in their profile.

I also suggest that the item "Other autism spectrum disorder" be changed to something like "Other autism spectrum condition" or just simply "Autism spectrum" like in Wikipedia. Many people say that autism should be recognized as a neural difference, not a sickness.

The Wikipedia article avoids discrimination by naming the article simply "Autism spectrum" without the word "disorder":
https://en.wikipedia.org/wiki/Autism_spectrum

Even if your opinion is that you do have a disorder, it's still wise to stop using the word "disorder" because of the widespread discrimination against autistic people. Even if it is a "disorder", saying "disorder" makes autistic people suffer more/worse mistreatment, discrimination, prejudice, ostracism.

The item "Family member with Aspergers" could be changed to "Family member with autism" or "Family member in autism spectrum".

I suggest that "in the spectrum" is better than saying "on the spectrum". This is a subtle but important difference. Unfortunately the word "on" contributes to the common problem of NT's getting stuck in the incorrect and harmful way of thinking in terms of linear scales (straight lines) and ranks. Many autistic people have said that it's wrong to try to place people somewhere on a line between "low functioning" and "high functioning".

Likewise the concept of IQ is incorrect and harmful because it says that someone with an IQ of 130 is smarter than someone with an IQ of 100, but that's clearly wrong. Intelligence is like a map not a line. Everyone has different strengths and weaknesses. Likewise autism is like a map not a line from low to high. Unfortunately too many NTs seem to be obsessed about ranking people from low to high, which is very harmful to society and encourages fighting and cut-throat competition.

The list of choices could be updated to something like this:

* Have autism - Diagnosed
* Have autism - Undiagnosed
* Not sure if I have it or not
* Family member with autism
* Autism spectrum
* Neurodivergent
* Neurotypical



Caz72
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14 Oct 2022, 8:57 am

i had this trouble too

they updated the gender options with a gender no.3 so why dont they update the diagnosis choices to more relevant choices

like im autistic not aspergers but theres no option to say autism so i just chose other autism spectrum disorder which doesnt suit me really..as an autistic person on an autism site i should be able to choose autism diagnosis as an option

weird


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14 Oct 2022, 10:16 am

Many people here are older and were diagnosed under the old manual and thus were diagnosed with Aspergers. Your proposal takes away that option.

If you want to be updated to the manual the diagnoses is “Autism Spectrum Disorder”. That said, “Autism” is fine with me.

Why “have autism”? Many people dislike people first language such as “have autism” and prefer identity first language such as “autistic” Using “autism” sidesteps that dispute.

Rightly or wrongly the question asks about diagnoses not identity. Misdiagnosis is baked into that. Should that change is another discussion. Neurodivergent is an identity not a diagnoses. That said “other neurodiverse condition” is sort of ok in that neurodiverse is at least a scientifically accepted description.

This following is an outlier opinion. The name “Wrong Planet” is a very popular one but not a wise one. “Wrong Planet” implies we are not human. Not only are that we not human, be we don’t belong here. You do not like “disorder” because it makes people “other” us. Fine, but a term that implies we are aliens that don’t belong here is wise?

“In the spectrum” is more grammatically correct but the idea that it is causing NT’s to harm us is a stretch. Many NT’s dislike us and worse because we are different. The terminology does not matter. They don’t spend all day thinking about it. What terminology should be used should be about us not about them, and what they think.


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14 Oct 2022, 11:08 am

See: https://wrongplanet.net/forums/viewtopic.php?t=393666#p8692198


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14 Oct 2022, 11:14 am

Double Retired wrote:

You could ask that the two threads be merged.


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Rotter
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14 Oct 2022, 12:48 pm

ASPartOfMe wrote:
Many people here are older and were diagnosed under the old manual and thus were diagnosed with Aspergers. Your proposal takes away that option.

OK, that's a reason to keep an Aspergers option in the list.

ASPartOfMe wrote:
Why “have autism”? Many people dislike people first language such as “have autism” and prefer identity first language such as “autistic” Using “autism” sidesteps that dispute.

It's hard to say which causes more problems: "I have autism" versus "I am autistic". Both can be criticized.

For comparison, the wording "He/she is disabled" is now considered to be discriminatory, and should be replaced with "He/she has a disability" or "with a disability". That's clear-cut. The issue of "I have autism" versus "I am autistic" is more difficult to resolve.

ASPartOfMe wrote:
Rightly or wrongly the question asks about diagnoses not identity. ... Neurodivergent is an identity not a diagnoses.

"Neurotypical" is already listed under "Diagnosis", but Neurotypical isn't a diagnosis, so I'd agree that maybe "Diagnosis" should be renamed to something like "Diagnosis or Status".

ASPartOfMe wrote:
“Wrong Planet” implies we are not human. ... a term that implies we are aliens

I was not offended by that when I first saw it. I interpreted it as a compliment :-) I wouldn't be surprised if aliens arrived one day and told us all, "We use the word 'human' as an insult."

ASPartOfMe wrote:
“In the spectrum” is more grammatically correct but the idea that it is causing NT’s to harm us is a stretch.

It doesn't cause NTs to harm autistic people, but it does contribute at least somewhat to discrimination and the incorrect harmful thinking that people should be ranked in a straight line from low to high.



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14 Oct 2022, 1:34 pm

- I immediately liked the name "Wrong Planet" when I heard it. I don't think it describes me, I think it describes what it feels like for me to be an Aspie.

- I still like my comments on the earlier thread.

- I see no reason for the Mods to merge the threads. It would probably be a waste of time. Discussions like this usually get us reminded that Wrong Planet's software isn't really getting any support and is "as-is". I can't complain, even if it is a bit quirky (as am I), it is free—at least for us. It is very generous of Alex to leave this up and running for us to crawl around in. Though I'll admit I would think the folk who use Wrong Planet might be able to stir up some advertisers willing to pay (not much) to get an ad on it.

P.S. Cornflake, I do not know if I've gotten into a touchy topic. If so, my feelings will not be hurt if you redact, edit, or delete this post.


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14 Oct 2022, 1:48 pm

Rotter wrote:
ASPartOfMe wrote:
Rightly or wrongly the question asks about diagnoses not identity. ... Neurodivergent is an identity not a diagnoses.

"Neurotypical" is already listed under "Diagnosis", but Neurotypical isn't a diagnosis, so I'd agree that maybe "Diagnosis" should be renamed to something like "Diagnosis or Status".

For the most part Neurotypical is not an identity but a descriptor that has been accepted among Autistics and Autism professionals. It is describing a non diagnosis similar to saying I tested negative for cancer(Having dealt with both I am not comparing cancer to autism)


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14 Oct 2022, 2:48 pm

Double Retired wrote:
Wrong Planet's software isn't really getting any support and is "as-is". I can't complain, even if it is a bit quirky (as am I), it is free—at least for us.

I thought the list of choices under "Diagnosis" would be easy to change (I presumed it's simply a matter of changing settings or a config file), but I could easily be mistaken about this. Maybe it's more work than I presumed.



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14 Oct 2022, 3:55 pm

So there are two key people:

- Alex, the owner-operator, absent, and unlikely to make changes.

- Cornflake, the administrator in lieu of Alex, who physically can change things but is under instruction not to.

I agree that the current options are inadequate. I don’t, however, think they have the same impact on the site as gender markers. The lack of an NB gender was impacting on user experience in a way that diagnosis markers are not. I may be missing some of the subtlety, but I think that’s why Cornflake thought it was worth him exercising his ability to act despite not having permission.

The least controversial way to refer to autistic people is to say “on the spectrum”. It swerves the identity/person debate. That said, it also uses a metaphor which some find confusing.

If I was designing the system from scratch, and didn’t want to include a very large number of options, my system would be something like:

- On the spectrum
- Questioning whether I am on the spectrum
- Non-autistic family member of someone on the spectrum
- Not on the spectrum



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14 Oct 2022, 5:15 pm

I really dislike "on the spectrum" as a euphemism for "autistic."

Occasionally I will say "on the autism spectrum," but never just "on the spectrum."

After all, the word "spectrum" has many meanings, most of them totally unrelated to autism. IMO we have no right to commandeer that word as referring only to ourselves.


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14 Oct 2022, 5:28 pm

From the Wrong Planet "landing page"...

Quote:
About Wrong Planet

Wrong Planet is the web community designed for individuals (and parents / professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences. We provide a discussion forum, where members communicate with each other, an article section, with exclusive articles and how-to guides, a blogging feature, and more. Read More >

My bride is ADHD. Even though that is specifically listed on the landing page the best choice she had when creating an account was "Family member with Aspergers" Me!. Except for being married to me she wouldn't have any appropriate diagnosis to list because she is not Neurotypical and how!.

I'm an Aspie and I studied Computer Science, this affects how I think.
An unqualified "Neurodivergent" option would overlap all the Autism Spectrum choices.

But I will be surprised if anything changes. This topic has been discussed before. Since WP is free, I don't think I will complain.


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14 Oct 2022, 5:58 pm

Caz72 wrote:
i had this trouble too

they updated the gender options with a gender no.3 so why dont they update the diagnosis choices to more relevant choices

like im autistic not aspergers but theres no option to say autism so i just chose other autism spectrum disorder which doesnt suit me really..as an autistic person on an autism site i should be able to choose autism diagnosis as an option

weird


It means "Other: Autism Spectrum Disorder" rather than "Other Autism Spectrum Disorder", if that makes sense.

Why doesn't it suit you?

Are you diagnosed?



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14 Oct 2022, 6:44 pm

IsabellaLinton wrote:
Caz72 wrote:
i had this trouble too

they updated the gender options with a gender no.3 so why dont they update the diagnosis choices to more relevant choices

like im autistic not aspergers but theres no option to say autism so i just chose other autism spectrum disorder which doesnt suit me really..as an autistic person on an autism site i should be able to choose autism diagnosis as an option

weird


It means "Other: Autism Spectrum Disorder" rather than "Other Autism Spectrum Disorder", if that makes sense.

Why doesn't it suit you?

Are you diagnosed?


well i rather just say autism because thats what it is

yes.im diagnosed with autism

other autism spectrum disorder feels like its implying kanners or rhetts or whatever

it makes sense now when you said it as other:autism spectrum disorder


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14 Oct 2022, 6:47 pm

I agree it seems strange that Autism or ASD aren't more clearly labelled on the list.

I'm not positive it's supposed to be "Other: ___" with a colon, but that's the only way it makes sense to me.

Were you dx as a child or adult?



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14 Oct 2022, 7:32 pm

IsabellaLinton wrote:
I agree it seems strange that Autism or ASD aren't more clearly labelled on the list.

I'm not positive it's supposed to be "Other: ___" with a colon, but that's the only way it makes sense to me.

Were you dx as a child or adult?


i was about 12 when i was diagnosed with autism even tho i was non verbal up until i was 8 but it was the 70s and my parents were also in denial


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