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Update Autism diagnosis status options in profile

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ASPartOfMe
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15 Jan 2021, 6:44 pm

IsabellaLinton wrote:
Abstract_Logic wrote:
I'm sure I'm not the only member who has suggested this, but the Autism diagnosis status selection in the user profiles needs an update to reflect identity-first language and current consensus among the neurodiversity community regarding the Autism spectrum. Since this is a site for all neurodivergence, maybe include options for other conditions as well?

Here are possible suggestions for options. Feel free to critique or make suggestions!

- Autistic (diagnosed)
- Autistic (undiagnosed or self-diagnosed)
- Other neurodivergent
- Not sure if autistic or not
- Neurotypical

Another suggestion is to allow users to enter our own options with a text box the same way we can specify our interests.



It seems like it would be very difficult to change the program, but this would be my pick:

ASD:

- Autistic: formally identified
- Autistic: self-identified
- Unsure or awaiting diagnosis

Other:

- Brain Injury
- PTSD
- ADHD
- OCD
- Tourette's Syndrome
- Dyslexia / Dyspraxia / Hyperlexia


There should be the option of selecting more than one response.

Basically, I like that but people who still identify as Aspie or have an Asperger's diagnosis probably would not like it.

Add to "Other" as these are common comorbids
- Depression
- Bi-Polar


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16 Jan 2021, 7:19 am

ASPartOfMe wrote:
Is not saying there are only two genders considered hate speech on WP?

Are you asking if "it's hate speech to not say there are two genders" or "it's hate speech to say there are two genders"?


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Blue_Star
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16 Jan 2021, 8:20 am

ASPartOfMe wrote:
Basically, I like that but people who still identify as Aspie or have an Asperger's diagnosis probably would not like it.


I'd appreciate it if Asperger's stays an option. I was diagnosed with it, not ASD. & my medical files are still coded with that from the DSM4. (My docs wanted me diagnosed before the DSM5 came out.)



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16 Jan 2021, 8:45 am

Blue_Star wrote:
I'd appreciate it if Asperger's stays an option. I was diagnosed with it, not ASD. & my medical files are still coded with that from the DSM4. (My docs wanted me diagnosed before the DSM5 came out.)

When they diagnosed me in the UK, Aspergers had been removed so I got ASD but they told me it would've been Aspergers if they could still call it that. Since this is what the whole site is about perhaps it would be a good idea to have both. It might also be good to have seperate boxes, one for autism, Aspergers, etc and one for diagnosed, suspected, etc instead of one box for all possible combinations.


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IsabellaLinton
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16 Jan 2021, 10:10 am

ASPartOfMe wrote:
Basically, I like that but people who still identify as Aspie or have an Asperger's diagnosis probably would not like it.

Add to "Other" as these are common comorbids
- Depression
- Bi-Polar


I agree. I thought of adding Asperger's diagnosis on the list, and I must have forgotten.


Other comorbid or neurodivergent conditions:
- Mutism
- Agoraphobia
- Sensory Processing Disorder
- Synaesthesia

I think it's preferable to have a list of choices for "Other" instead of just a blank box. The choices might prompt members to identify a range of conditions they may have forgotten to add on their own.

At the end of the list there could still be a box for Other / Please Explain.


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bcousins
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05 Feb 2021, 12:48 am

Fnord wrote:
First, it is unlikely to happen.  Any such updates would require an overhaul of the website software, and the owner has show little interest in anything so drastic


It's a custom profile field. That's it. Easily modifiable in the Admin panel.


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14 Mar 2021, 2:18 pm

Late comment...

I agree with Abstract_Logic that the WP "Your Profile" Diagnosis field list of choices does not correspond well with the "About Wrong Planet" section at the bottom of the WP home page. I agree fixing that would be desirable. Unfortunately, I also think it would have to be thought through very carefully to address some complexities:

 -- kraftiekortie pointed out the issue of comorbidities. Covering them would likely require a very complicated choice list for the Profile's diagnosis field, or a multiple-choice list (as IsabellaLinton suggested). I won't suggest just excluding comorbidities from the Diagnosis field because of ADHD, which is a comorbidity that also happens to be a type of ND. Perhaps there could be a selection list for Autism Spectrum choices and a separate multiple choice for ND non-AS comorbidities? And any comorbidities that fall outside ND could go in the "About Yourself" section of the Profile.

 -- DSM-5 vs pre-DSM-5 vs not DSM-5 creates complications that even surface in some threads and would complicate the Diagnosis field. Kanner's Syndrome and Asperger's Syndrome are both within the scope of the DSM-5 Autism Spectrum, but discussions encompassing them both can get awkward and confusing when only some of the participants are from the DSM-5 world. Perhaps the Diagnosis field could include all of the pre-DSM-5 choices plus "Autism Spectrum" for folk with only a nonspecific DSM-5 diagnosis?

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Full disclosure: My Aspieness sometimes gets me playing with data for fun. I think I (and anyone similarly inclined) would enjoy the better data provided by a better Diagnosis field.


I personally hope the ability to scan another users' posts is retained. Like ASPartOfMe, I sometimes use it to get a better sense of the personality, issues, or even age of another user. Sometimes it can persuade me to steer clear.


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16 Mar 2021, 9:28 am

Obvious comment: There is no compelling need to make a change.


Offered for Optional Discussion:

          Have Aspergers/ASD-1 - Diagnosed
          Have Aspergers/ASD-1 - Undiagnosed
          Not sure if I have it or not
          Family member with Aspergers/ASD-1
          Other autism spectrum disorder
          Neurotypical
          Neurodiverse - not on the spectrum
   

Discussion:

(1) This would seem to be a minimal change that doesn't alter the list's focus.

(2) This addresses complications caused by DSM-5 vs. nonDSM-5 but allows a one-for-one substitution (or relabeling?) of existing Profile Diagnosis selections without invalidating them.

(3) Currently, someone with ADHD but who is not also on the spectrum really doesn't have a good diagnosis choice. This would give them one.

(4) If reordering the list is easy, it would make more sense to me if the final four were reordered to: {Other}, {ND}, {Family}, {NT}.


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