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

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IsabellaLinton
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14 Oct 2022, 7:46 pm

Rotter wrote:
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



Neurodiversity also includes ADHD, Hyperlexia, FAS, Tourette's, and other neurodevelopmental conditions.
Is that what you're suggesting with the word Neurodivergent, or are you using it as a synonym for Autism?

From your list I wouldn't know which ones to choose.

Have Autism - Diagnosed ✅ (Level 2)
Family Member with Autism ✅
Autism Spectrum ✅
Neurodivergent ✅ (ASD, ADHD, Synaesthesia, Hyperlexia)

Are you suggesting people should get more than one choice?



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14 Oct 2022, 8:22 pm

Caz72 wrote:

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


This thread made me do a search on how many people on this forum have Aspergers but I couldn't find the answer I was looking for, but I did find this thread from 2013 and I'm a little confused now as you posted in that thread that you are self-diagnosed.


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Caz72
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14 Oct 2022, 11:38 pm

Doberdoofus wrote:
Caz72 wrote:

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


This thread made me do a search on how many people on this forum have Aspergers but I couldn't find the answer I was looking for, but I did find this thread from 2013 and I'm a little confused now as you posted in that thread that you are self-diagnosed.


i didnt know if i was officially diagnosed or not until i found out by my doctor that autism was on my medical records

i always knew i was autistic since i was a teenager but didnt know i had a official diagnosis


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IsabellaLinton
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15 Oct 2022, 1:28 am

Caz72 wrote:
Doberdoofus wrote:
Caz72 wrote:

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


This thread made me do a search on how many people on this forum have Aspergers but I couldn't find the answer I was looking for, but I did find this thread from 2013 and I'm a little confused now as you posted in that thread that you are self-diagnosed.


i didnt know if i was officially diagnosed or not until i found out by my doctor that autism was on my medical records

i always knew i was autistic since i was a teenager but didnt know i had a official diagnosis


I was just reading up on childhood diagnosis vs. adult as well. ^

I saw a thread where you said you were diagnosed at age 4.

Was it 4 or 12, or self-diagnosed?

viewtopic.php?f=3&t=398891&start=16#p8832663

Did they determine you were "Moderate" back in the 1970s?



Doberdoofus
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15 Oct 2022, 4:55 am

Caz72 wrote:
Doberdoofus wrote:
Caz72 wrote:

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


This thread made me do a search on how many people on this forum have Aspergers but I couldn't find the answer I was looking for, but I did find this thread from 2013 and I'm a little confused now as you posted in that thread that you are self-diagnosed.


i didnt know if i was officially diagnosed or not until i found out by my doctor that autism was on my medical records

i always knew i was autistic since i was a teenager but didnt know i had a official diagnosis


:o I don't know how I'd feel if a diagnosis was hidden from me, apart from initial anger.


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Caz72
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15 Oct 2022, 5:08 am

my parents recognised something was wrong at 4 because i wasnt talking

i dont remember its all confusing even for me

i didnt have a very close relationship with my family..apart from my dad when i was grown up but we didnt really talk about autism then
then he sadly passed away from cancer


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Doberdoofus
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15 Oct 2022, 6:32 am

Caz72 wrote:
i dont remember its all confusing even for me


I've been searching your post history and can see that. After thinking about it, I would feel that my parents gaslit me if they withheld a diagnosis. If I had been diagnosed as a child, my life may have turned out more positively.


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15 Oct 2022, 7:35 am

Double Retired wrote:
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.
Psh, no problems; discussion is fine. :lol:

With reference to the link you'd posted earlier, of a similar request, I'd compiled the following list at that time.
It's probably not complete, and my apologies for not naming the source of some quotes from that thread.

I don't feel inclined to cross-reference with this newer thread - the reason will doubtless become clear as the list is viewed and the scale of the request understood. :wink:


Quote:
Chronological summary of requested options to appear in the profile "diagnosis" drop-down.
See: viewtopic.php?t=393666

========

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

========

- Have Asperger's (diagnosed)
- Have autism (diagnosed)
- Self-diagnosed ASD
- Suspect I have an ASD
- Have some other neurological disorder/disability
- Neurotypical (no neurological disorders/disabilities)

========

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.

========

I forgot to add parents and family members of people who are ND, as a choice. ^

========

What about prosopragnosia?

========

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

========

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.

========

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.

========

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.

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?

========

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


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15 Oct 2022, 8:58 am

Mona Pereth wrote:
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.

If it is an discussion in a space like this I figure adding the word “autism” is not necessary. I rarely use “spectrum” in another context.


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IsabellaLinton
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15 Oct 2022, 9:17 am

Cornflake wrote:
Double Retired wrote:
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.
Psh, no problems; discussion is fine. :lol:

With reference to the link you'd posted earlier, of a similar request, I'd compiled the following list at that time.
It's probably not complete, and my apologies for not naming the source of some quotes from that thread.

I don't feel inclined to cross-reference with this newer thread - the reason will doubtless become clear as the list is viewed and the scale of the request understood. :wink:


Quote:
Chronological summary of requested options to appear in the profile "diagnosis" drop-down.
See: viewtopic.php?t=393666

========

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

========

- Have Asperger's (diagnosed)
- Have autism (diagnosed)
- Self-diagnosed ASD
- Suspect I have an ASD
- Have some other neurological disorder/disability
- Neurotypical (no neurological disorders/disabilities)

========

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.

========

I forgot to add parents and family members of people who are ND, as a choice. ^

========

What about prosopragnosia?

========

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

========

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.

========

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.

========

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.

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?

========

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




What about undiagnosed brain injuries? :lol:
I feel like I might have one from trying to read this list or pick a solution.



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15 Oct 2022, 9:30 am

Mona Pereth wrote:
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.


I must have missed this post, thanks for pointing it out ASPartOfMe.

I think 'commandeer' is a bit strong. As you said, words often have different meanings, and they can also get redefined with each new generation, remember when 'bad' actually meant bad :lol: I have no problem referring to myself as 'on the spectrum'. I do agree that, out of context, 'spectrum' could refer to any disorder/illness.


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15 Oct 2022, 9:52 am

IsabellaLinton wrote:
What about undiagnosed brain injuries? :lol:
I feel like I might have one from trying to read this list or pick a solution.
:lol: It's a bit of a monster, isn't it?

The simplest solution might just be a simple "describe it yourself" one-line text entry.
A pre-defined list is clearly not going to suit everyone, but the alternative should not be a 30-foot list containing every type, sub-type or variation known to humanity.


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15 Oct 2022, 10:47 am

Cornflake wrote:
A pre-defined list is clearly not going to suit everyone, but the alternative should not be a 30-foot list containing every type, sub-type or variation known to humanity.
My mind wandered through several reactions:

1. We would need a really complicated page to cover all the choices Cornflake found!

2. Fill in the blank would probably solve the problem.

3. Would fill in the blank lead to inconsistency? Inconsistency could be a problem for anyone trying to use the diagnosis info. (I don't know if anyone else has used it but I did when I created a graph.)

4. Would a combination of solutions be possible? An updated multiple choice list that includes the major choices and better aligns with DSM-5 plus legacy DSM-4 diagnoses and also the WP landing page. But add a choice of "Other" which comes with a fill in the blank field, a blank field only available if you choose "Other".


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15 Oct 2022, 11:57 am

Double Retired wrote:
3. Would fill in the blank lead to inconsistency?
Yes, unfortunately it would, along with duplication of the same things phrased differently.

Quote:
4. Would a combination of solutions be possible? An updated multiple choice list that includes the major choices and better aligns with DSM-5 plus legacy DSM-4 diagnoses
There would likely be calls to update that list too - like "why are legacy diagnoses still shown?". :lol:

Quote:
But add a choice of "Other" which comes with a fill in the blank field, a blank field only available if you choose "Other".
The capabilities of the drop-down in the profile are limited, without resorting to bespoke programming.
Personally, I'd prefer just the one-line blank field for a description - at least it would provide an opportunity to be precise..


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15 Oct 2022, 12:12 pm

An always-available fill-in field that was separate from the multiple choice?

And it occurred to me that if the multiple choices were retained then perhaps they should be pick as many as apply. Some folk here could use that.


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15 Oct 2022, 2:44 pm

Sorry...my mind wanders...

If diagnosis becomes just a blank field, there are probably folk who would need more than one line.

It occurs to me that replacing the current mechanism for self-reporting your diagnosis would likely invalidate all of the diagnosis info already entered. Existing members might not realize their information had been lost; long-gone members wouldn't care but anyone who is as fond of information as I am would hate to see data ditched and then never replaced.

The least disruptive thing might to do might be to do as little as possible while resolving the current deficiencies. Sticking to a mostly cosmetic modification could resolve those deficiencies without trashing all the data already in the system. For instance, this. Select-all-that-apply would be an improvement even if nothing else is changed—though it would also be an improvement with some mostly cosmetic change, like my suggestion.


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