five-thousand-loaves-of-bread:
One of the things I don’t like is people saying they have suspected ID (intellectual disability).
It might be a personal problem, it might be a community problem, I’m not sure. However, I do know that it just gives me an icky feeling. The ID community has asked that people without ID, don’t self diagnose it.
ID is such a complicated thing, with a variety of severity. Saying suspected, means that you suspect you have it. But you don’t know what severity. You don’t know how it affects you. You don’t even know if you have it. And I think I get the icky feeling, because a lot of times, people who say they suspect they have ID is for the wrong reasons.
“Well my comprehension skills are bad” “well I’m stupid” “well I never did good in school” “well I never did this or that” and all of this just makes my skin crawl, because none of these automatically scream “I have ID”.
Comprehension problems can be from many things, like autism, Auditory processing disorder, brain damage, a different processing disorder, learning disabilities, etc etc. none of it screams ID. Why? Because Mild ID(what most people believe they suspect they have) doesn’t have a definitive thing that screams it. It’s like a spicy add on for most people with Mild ID. It’s something that makes your life harder but you just can’t usually pinpoint. Know what I mean? Although it does greatly affect my life, and there’s no doubt about that.
I don’t like people saying they suspect they have ID, because in the long run, you TRULY don’t know unless you get the testing. It’s not a disorder that comes with a book that says “yeah this is definitely this” like autism or ADHD. It affects everyone differently, and that needs to be talked about.
I’m not saying stop saying it, I’m just saying really think about it.
if may…
don’t have ID, but here list summarized from hear friends & others with ID talk about why from hesitant to against self diagnose ID (EDIT: for other people who not know about it. not at OP). (say suspect have slight different from say self diagnose but same points apply)
- like said above: reason say for suspect/self dx ID not automatic mean ID, & instead often come from not fully understand ID (that it disorder that affect *general everything* functioning) or from own stigma ableism against ID (like the “i’m stupid”). not do differential diagnosis (which need do for any diagnosis professional or self)
- there not much self diagnosis guides for ID like there is for (low support needs/level 1/mild/whatever language use) autism. there not much first-person-account lived experience information for ID. there not much info about ID in general. this “have LOT less (lived experience) information” difference between ID & (LSN/level 1/etc) autism reason why self diagnosis should be approached differently.
- ID very serious thing that again affect everything. “even” mild ID very serious. if really genuinely wonder about ID, reallly need see someone professional.
- you or people around. really Would Have Known Something Wrong before you see tumblr post about ID n suddenly Everything Click. now, are there people with borderline & mild ID who never been diagnosed ID even as adult, because inequalities or severe abuse neglect? maybe, yeah. except again, it not comparable to (LSN/level 1/etc) autism not diagnosed until adult, because once again “even” mild ID affect general everything functioning in giant way. these people with undiagnosed ID am talking about *that still alive as teen or adult (many aren’t)*… most of them illiterate, low/no education, in prison, institutionalized, or gotten some level of at least bare minimum support through other diagnoses or like, extreme family privilege. n select few who not any of that, still would have realized something different before see tumblr post (there plenty people w ID who not have self awareness realize. but they tend not be in this group). if you ever had full neuropsych assessment (way to Officially Diagnose autism ADHD etc) which 99% time include full scale IQ n some amount of adaptive functioning assessment, & ID n intellectual functioning concerns never been brought up in it, then there pretty much no chance have ID
No cause you explained this perfectly and this is such a good addition. Thank you so much!!
Yes. I think that’s why I get so defensive at times. I don’t think people who see my posts that talk about ID and go “omg..wait..” really understand ID. It affects everything.
When I was younger, my mom KNEW something was wrong. Said so to multiple doctors. Saw MULTIPLE doctors. Finally saw a doctor who was like “oh yeah, something here is wrong”.
When people meet me, they know something is wrong. Sometimes they can’t pinpoint it, sometimes they can. But they do. Even though I have Mild ID, it affects everything. It’s not just brain, it’s everything.