Autism diagnostic differences | Nexus Mods | Page 1

glad ferry Sep 27, 2021, 10:04 AM

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No worries, sorry for my own late reply - i was asleep 😂 Halloween decor is important 😌

So, there's a bias in the way a lot of places diagnose autism that means that women and girls are extremely likely to go undiagnosed. For a long time, the way autism was recognised was by the really obvious outward behaviours that differed strongly from now neurotypical people behave. But "masking" is a thing where an autistic person figures out from an early age to emulate other neurotypical people and perform those neurotypical behaviours themselves to fit in, and this wasn't known/understood until relatively recently, so places that haven't caught up will miss all the people who mask well - there are a lot of subtler diagnostic criteria for autism that involve asking the person how they feel about things rather than noting how they behave, and its those that have to be used for people who mask. And the problem is, girls/women/people socialised as female mask way, way, way more than boys/men/people socialised as male, so they get wildly underdiagnosed in comparison. So much so that a statistic that's been floating around for ages saying that autism affects boys more than girls has been changing over time, the difference inching smaller in places where girls are getting diagnosed properly - and I, personally, am genuinely sure that it will end up with no difference: just an artefact of the different diagnostic needs.

(I say "socialised as female" because the differences seem to be due to the big differences in how people are raised and trained to socialise, rather than any inherently different brain structure/chemistry. I'm also certain that using the more involved criteria will also diagnose plenty of boys/men who are also masking.)

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Now, by places I mean both entire countries and facilities within a country - here in the UK, most of the general doctor population is (or was at the time) stuck in that older understanding of how autism presents, so I eventually went to the Lorna Wing center for my diagnosis. I'd been seeing posts by AFAB autistic people that just resonated so much, and I was getting really goddamn suspicious of myself 😂 Lorna Wing had recently released their "autism in women and girls" diagnostician training module for free, so I went through it with my mother (it's useful if you have a supportive relative who knew what behaviours you exhibited when you were small, but it's not a dealbreaker if not) and we both sat there reading it like "well shit". Sadly it's no longer free, £30 I think, but here's their general page on autism in women/girls: https://www.autism.org.uk/advice-and-guidance/what-is-autism/autistic-women-and-girls

And about ADHD - it's speculation on my part this time, but I'm again seeing a lot of posts like I did with autism where the traits commonly used for diagnosis are these obvious, socially disruptive behaviours, but people with the diagnosis report a lot of subtle internal differences in how their brains process things (executive functioning particularly). And it's another diagnosis that currently has a mysterious gender gap, and I just strongly suspect that there's a form of masking going on in AFAB people again, and that that gap is gonna close in the end with better diagnostic criteria.

Anyway what was my point again? 😂 I think it was that if you see someone for diagnosis and they say you're not that thing, it might be worth checking with somewhere/someone that's specifically trained to look for how these things present in women/girls - or go there to start with.

willow tulip Sep 28, 2021, 8:36 PM

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Always best to get a second or even third opinion. I think doctors sometimes overlook ADD because they're expecting to see the hyperactivity that comes with ADHD, but don't quote me on that.

glad ferry Sep 28, 2021, 8:38 PM

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well even adhd doesn't necessarily have hyperactivity, it's a terrible name for it tbh >:

willow tulip Sep 28, 2021, 8:39 PM

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My understanding is that it's an abbreviation for Attention Deficient Hyperactivity Disorder.

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Whereas ADD is Attention Deficient Disorder.

glad ferry Sep 28, 2021, 8:40 PM

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they're the same thing

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ADD is an older term

willow tulip Sep 28, 2021, 8:41 PM

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hmmm

glad ferry Sep 28, 2021, 8:42 PM

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ADHD is the official, medical term for the condition — regardless of whether a patient demonstrates symptoms of hyperactivity. ADD is a now-outdated term that is typically used to describe inattentive-type ADHD, which has symptoms including disorganization, lack of focus, and forgetfulness.

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https://www.additudemag.com/ is a nice resource

willow tulip Sep 28, 2021, 8:46 PM

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I've just been on the Mayo Clinic's site. 🙂

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They do still use the ADD diagnosis for adults, apparently, but the diagnoses has changed for children.

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I'm glad to know this. I like knowing stuff.

glad ferry Sep 28, 2021, 8:50 PM

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willow tulip They do still use the ADD diagnosis for adults, apparently, but the diagnoses ha...

i'm not seeing that on their adhd page; the only add reference there i see is an "adult add" page from 2014 with just a video on it

willow tulip Sep 28, 2021, 8:50 PM

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Right...that's what I meant. 🙂

glad ferry Sep 28, 2021, 8:51 PM

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i think that might just be an outdated page rather than that they still use ADD as a diagnosis for adults 🤔

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i imagine it still gets used as shorthand for inattentive-type adhd though

willow tulip Sep 28, 2021, 8:52 PM

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Could be. 🙂

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And some people are just high energy people.

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They seem to be like the Energizer bunny. 😄

glad ferry Sep 28, 2021, 8:54 PM

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well there's still a hyperactive type of adhd, confusingly

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there's inattentive, hyperactive, annddd something eeeelsssse

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inattentive type, hyperactive/impulsive type, and combined type
there we go

willow tulip Sep 28, 2021, 8:54 PM

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hmmm

glad ferry Sep 28, 2021, 8:55 PM

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so they're all adhd, but add still gets used to refer to the inattentive type

willow tulip Sep 28, 2021, 8:55 PM

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So....I'm also confused.

glad ferry Sep 28, 2021, 8:55 PM

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more layers of terrible naming 😂

willow tulip Sep 28, 2021, 8:55 PM

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amen

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Say what you mean, people!

glad ferry Sep 28, 2021, 8:55 PM

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/slaps desk in agreement

willow tulip Sep 28, 2021, 8:56 PM

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I have a nephew who's on the spectrum, and my BFF's younger son is also on the spectrum.

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Plus, I know an adult or two.

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It's interesting to see how differently they present.

glad ferry Sep 28, 2021, 8:56 PM

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i've seen some people say that adhd would be better named "executive dysfunction disorder" since that's a more relevant overarching issue

glad ferry Sep 28, 2021, 8:57 PM

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willow tulip It's interesting to see how differently they present.

yeah! it's quite the.... 😎 spectrum

willow tulip Sep 28, 2021, 8:57 PM

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snicker

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My formal diagnosis is "severe, refractory panic/anxiety disorder".

glad ferry Sep 28, 2021, 8:58 PM

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that's shit ☹️ 🫂

willow tulip Sep 28, 2021, 8:58 PM

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yeah, it's no fun.

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I'm on good meds, but am still disabled because of it.

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I would imagine that once you realize that you see/experience the world differently (with a spectrum disorder), it could be very frustrating.

glad ferry Sep 28, 2021, 9:01 PM

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in some ways, in others it's a relief to understand why nothing made sense before - even if it still doesn't

willow tulip Sep 28, 2021, 9:01 PM

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nodding

glad ferry Sep 28, 2021, 9:02 PM

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i'm sorry you're having to go through that >:

willow tulip Sep 28, 2021, 9:02 PM

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I'd been dealing with it since my teens until I just couldn't deal with it by myself anymore.

glad ferry Sep 28, 2021, 9:02 PM

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oh shit

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🫂 🫂 🫂 🫂

willow tulip Sep 28, 2021, 9:03 PM

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So, I had all the cognitive/behavioral techniques down pat.

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Well, when I was a teenager, we didn't know about PAD.

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We knew that some people were "nervous", but there was never any idea they had an actual disorder.

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I didn't know that what I was experiencing were panic attacks until I was in college and read an article in a women's magazine which explained what a panic attack feels like.

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It was like, "Oh! That's what that is!".

glad ferry Sep 28, 2021, 9:05 PM

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oh jeez, that must have been scary without knowing what it was

willow tulip Sep 28, 2021, 9:05 PM

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Well, I'm a practical person, so I just dealt.

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It became more severe as time went on.

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Which is why it got to the point where I couldn't deal with it any longer.

glad ferry Sep 28, 2021, 9:06 PM

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i see, yeah D:

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i gather panic attacks can feel disturbingly like heart attacks at their worst

willow tulip Sep 28, 2021, 9:06 PM

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I had to leave a profession I loved and go on disability at 40.

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The suckage was great.

glad ferry Sep 28, 2021, 9:06 PM

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that is pretty maximal suckage >:

willow tulip Sep 28, 2021, 9:07 PM

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And yes, people often think they're having a heart attack or that they're dying.

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Your breath gets short, your heart pounds, you may feel dizzy or light headed.

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The grand finale is bursting into tears and not being able to stop crying until it passes.

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I used to have them when I was taking swimming classes in college. I'd have to come out of the pool for a few minutes.

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Get out, sit on the side, wait for it to pass, get back in the pool. 😄

glad ferry Sep 28, 2021, 9:09 PM

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i was going to say bad timing, but there's never a good time, is there

willow tulip Sep 28, 2021, 9:09 PM

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nope

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I can mostly control what I do, I just can't always control how I feel.

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So, there's no point in people telling me to "just calm down".

glad ferry Sep 28, 2021, 9:10 PM

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oh god that is such a bloody mood

willow tulip Sep 28, 2021, 9:10 PM

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yeah

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pain in the ass, it is

glad ferry Sep 28, 2021, 9:10 PM

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be happy, be normal, calm down,

willow tulip Sep 28, 2021, 9:10 PM

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pfffttt

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I'd like to respond with "be gone, you".

glad ferry Sep 28, 2021, 9:11 PM

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we're cured! magic!

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😂

willow tulip Sep 28, 2021, 9:11 PM

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lol

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I once had a psychiatrist shake a copy of the DSM at me and tell me, "There's no such thing as panic/anxiety disorder in this book!".

glad ferry Sep 28, 2021, 9:12 PM

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wooooooooooooooow

willow tulip Sep 28, 2021, 9:12 PM

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I knew full well there was, because I'd read the entry.

glad ferry Sep 28, 2021, 9:12 PM

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omg what 😂

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i thought it was going to be a "there are more things out there than what's in the book" and that it was a while ago, but he was just straight up wrong?

willow tulip Sep 28, 2021, 9:12 PM

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I was sent to him for an "impartial" assessment as to whether or not I was actually disabled so that I could get my state retirement benefits.

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I didn't get them.

glad ferry Sep 28, 2021, 9:13 PM

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shit a brick

willow tulip Sep 28, 2021, 9:13 PM

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Oh yes...flat out wrong. He just figured it was people, especially women, who couldn't control themselves.

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At the end of the appointment, he sent me into another room to "...get yourself together."

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ass

glad ferry Sep 28, 2021, 9:14 PM

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i am so sorry you had to go through that

willow tulip Sep 28, 2021, 9:14 PM

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Was no fun at the time.

glad ferry Sep 28, 2021, 9:14 PM

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/incoherent noises of rage

willow tulip Sep 28, 2021, 9:14 PM

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yeah

glad ferry Sep 28, 2021, 9:14 PM

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the fng audacity

willow tulip Sep 28, 2021, 9:14 PM

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I think he was of the "hysterical female" school of thought.

glad ferry Sep 28, 2021, 9:14 PM

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stick him in a goddamn museum where he belongs

willow tulip Sep 28, 2021, 9:15 PM

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lol

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yeah

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I'm hoping that sooner or later he got hit with a malpractice suit.

glad ferry Sep 28, 2021, 9:15 PM

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jesus i am so angry on your behalf

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i'll hope with you

willow tulip Sep 28, 2021, 9:16 PM

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The two psychiatrists that I was sent to for "impartial" assessment felt that their jobs were to find a reason to deny me my benefits, so they looked for things that didn't support what I was saying.

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They felt that they worked for the state retirement agency instead of as an independent lab of sorts.

glad ferry Sep 28, 2021, 9:17 PM

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that's disgusting

willow tulip Sep 28, 2021, 9:17 PM

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It is.

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I appealed my case all the way to a judge, who wasn't allowed to rule on the preponderance of medical evidence, but only on whether or not the agency had followed protocol in my case.

glad ferry Sep 28, 2021, 9:18 PM

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oh wow o:

willow tulip Sep 28, 2021, 9:18 PM

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I hope that things are much different now.

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I thought getting my federal benefits would be harder. 😄

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I got those with no issues.

glad ferry Sep 28, 2021, 9:19 PM

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just the retirement benefits that were a shitshow?

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"just"

willow tulip Sep 28, 2021, 9:19 PM

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yes

glad ferry Sep 28, 2021, 9:20 PM

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well i'm glad one thing wasn't an uphill battle

willow tulip Sep 28, 2021, 9:20 PM

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And because of my finances, I had to apply for "early" retirement, so I won't get anything better when I get to 65.

glad ferry Sep 28, 2021, 9:20 PM

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it enrages me that these things are often still so difficult to get, for the very people who need them, for whom everything is already more difficult

willow tulip Sep 28, 2021, 9:20 PM

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nodding

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It's one reason I offer to go into appointments with people who have mental health disorders so that I can advocate for them.

glad ferry Sep 28, 2021, 9:22 PM

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that's so kind of you 🥺

willow tulip Sep 28, 2021, 9:22 PM

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I'm like you. I get pissed when people don't get the treatment they need.

glad ferry Sep 28, 2021, 9:22 PM

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afrigginmen

willow tulip Sep 28, 2021, 9:23 PM

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I imagine that there are places where folks on the spectrum have a similar problem.

glad ferry Sep 28, 2021, 9:25 PM

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i'm in a related position to you in that i'm pretty shafted by chronic medical stuff at the moment and can't work, but i never really....got going? I've been employed, but not for....8 years? and never in a field that i wanted a career in. So one day when/if i hopefully get better, i'm going to be horrifically behind, which isn't great anyway, and maybe doubly so in technical fields like programming. :/ I did some small self-employed stuff in that, but I got too tired for that too eventually. But at least there's the outside chance that me sitting on my arse modding could be relevant experience for that.

glad ferry Sep 28, 2021, 9:26 PM

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willow tulip I imagine that there are places where folks on the spectrum have a similar probl...

definitely >:

glad ferry Sep 28, 2021, 9:43 PM

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glad ferry i'm in a related position to you in that i'm pretty shafted by chronic medical s...

which isn't quite the same, since there's a prospect of getting better - i hope that didn't seem like i was diminishing your situation

willow tulip Sep 28, 2021, 10:01 PM

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not at all

sterile hound Sep 28, 2021, 11:08 PM

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Wait, so.. literally everything "wrong with me" (not meant in a negative way), could literally all be interconnected.

willow tulip Sep 28, 2021, 11:27 PM

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yes

glad ferry Sep 29, 2021, 9:22 AM

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sterile hound Wait, so.. literally everything "wrong with me" (not meant in a negative way), c...

could well be, depending on the things

dense burrow Oct 1, 2021, 11:31 PM

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beans

willow tulip Oct 2, 2021, 2:51 PM

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the musical fruit

glad ferry Oct 2, 2021, 2:51 PM

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/toot

#Autism diagnostic differences