So I'm autistic after all
Hey all, some of you may remember me from several months back saying that my psychiatrist put me down as "Asperger's coded" and how I was unsure what that meant.
Well I had another appointment since then where she did say I was autistic but it was left open ended as to whether or not I was diagnosed. At least that's how I interpreted it.
So at today's appointment I just asked point blank if I was diagnosed. And she said not with autism spectrum disorder but with Asperger's syndrome via the ICD 10. Which is weird because I'm in America but whatever. I asked if that was a type of autism and she said according to the DSM V Asperger's was turned into ASD 1 (if I remember correctly) but I was diagnosed via the ICD 10.
So yeah all that to say is that I think it's finally fair to say I'm autistic. I'm not a fan of the word Asperger's so autistic is what I'm going with. Please correct me if I'm being offensive.
It only took 30 years. Though I didn't have to go through any major testing which makes me feel like an imposter. I just answered a few questions.
Edit: I didn't initially clarify so I am doing so now, MY EXPERIENCES ARE MY OWN I DO NOT SPEAK FOR ANY GROUP, everyone is different, the things we're talking about are like rough constellations, not hard defined lines, and generalizations will ALWAYS be inaccurate for many people. Where I use offhand generalizations below, I only meant to do so off the cuff, and did NOT intend this to come off as a Spokesperson post and please do NOT interepret it as such. I only speak for myself, NONE OF THE BELOW IS UNIVERSAL. Every individual is unique
Nope, you're right on track. 'Aspergers' has been out of favor for some good reasons for a long time. "Autistic people," "people with autism," "folks on the spectrum" are all very acceptable.
Yeah. Things like having special interests or occasionally feeling shy or having strong preferences about cloth textures all strike me as incredibly normal, but add them up and apparently that's autism coded.
Allistic folk are the odd ones from my standpoint: [Edit: I'm sorry for saying odd. These were just supposed to be examples. I don't think I can properly express this thought ]what, you're just up for eye contact with an unlimited number of strangers all the time? You're just fine with talking to people in noisy environments? You have an unlimited ability to focus on mundane tasks? Good for you but how??
[Edit; not everyone is this way, everyone is different, I was speaking generally to express my perspective, NONE of these relatable/unrelatable things are supposed to be necessary or sufficient to be in this or that bucket, they're constellations of experiences]
To be fair, I don't think I'm autistic at all (none of the self assessment questionnaires give me even a remotely positive result), but neither of those things apply to me. I pretty much never make eye contact and I hate talking in noisy environments, and I have no idea why some people even enjoy talking to each other in places like clubs where it's so loud that you can barely hear each other. To say those things about allistic people is as much of an exaggeration as saying that autistic people never socialize and are always interested in trains
Agreed. I don't like making eye contact either, but I've learned how (or forced myself) to do it. But when I look at everything else about autism, I don't really check the boxes. Even when I compare myself to others like friends and coworkers -- I can't imagine we all have autism -- I don't see myself that different from them. I likely have some social anxiety, but that's about it.
Though I do like trains...but only because they're an amazing mode of public transportation that we need MORE of! I'm too lazy to do trainspotting and all that.
I think that it's generally very hard to distinguinsh neurodiversity symptoms from just things that most people experience. Both categories of people will think of that as a part of their normal life experience, so neurodivergent people may not know that something they experience is different from most people, while neurotypical people can assume some common part of everyday life is unique to them.
This is even more fueled by a lot of misinformation/self-diagnosis on social media, with posts like "did you know that recognizing the sound of your parents footsteps is actially a sign of autism/adhd/ocd/trauma/whatever?" (spoiler: no, it's not)
But it's also hugely caused by the fact that describing personal experience is really hard, and a neurotypical person's "I have troubles concentrating" is completely different from "I have troubles concentrating" of a person with ADHD.
I'm not a psychiatrist, but I feel like it must be EXTREMELY hard to diagnose neurodiversity or very mild cases of psychiatric issues where sometimes there aren't even any visible symptoms
I was trying to think of three somewhat representative things that I don't find personally relatable. I apologize that the result was overly reductive. I would really appreciate if you have some suggestions for what would have been better examples of relatively typical, but not stereotypical allistic things.
Maybe it's not that autistic people are so different, it's a matter of how much different things tire out or deplete someone, or how much time it takes for someone to learn an interpersonal skill and apply it easily enough until it costs nothing and is automatic.
None of us were born already having inside voices/thoughts, or knowing how to do small talk, or know all the metaphors of our culture. Heck, some grew up in cultures without direct and unbroken eye contact being required.
Maybe autism isn't just that some folks can't, it's also folks take much longer to learn these cultural things, or having to do them is much more exhausting. And for sensory process thing, maybe some folks just have a lower threshold differing by degrees instead of on/off: if one itchy scratchy tag on pants doesnt bother someone, what about a full body rub against a wall of itchy tags for 3 hours?
Well, the issue is that I can't really give an example of a thing that's typical for allistic people but not typical for autistic people, because that would in turn probably be reductive towards autistic people. But maybe small talk is a better example? Though I personally know a bunch of allistic people who are bad at small talk and a bunch of autistic people who can make small talk just fine, but I'd assume that allistic people generally have a much easier time with that
So far Ive found “bullied at any point during grade school” to be a pretty reliable autism flag.
It alone isn’t enough, but if someone claims to be autistic and wasn’t ever bullied that would be super weird to me unless they were home schooled or in some special school.
Every time Ive ever come across an autistic person that claims they weren’t bullied, it turns out they just didn’t know they were being bullied.
This reminds me very much of a popular Tumblr post on the subject:
Damn that hits hard lol
I got the ‘raised by wolves’ flavor of autism so I don’t fit a lot of the stereotypes, kids just didn’t like me cause I didn’t learn to shower every day until I was 15, I made inappropriate comments like 90% of the time and my reaction to confrontation was to punch them in the face.
Looking back I can totally see why I didn’t have friends. But it still hurt. I still have trouble relating to city folk cause I’m rough around the edges.
I didn't get diagnosed until recently (I'm 29) in large part because I don't fit many of the stereotypes, I think. I also definitely developed social anxiety disorder and what are probably in retrospect some pretty intense masking skills to avoid rejection by my peers. The autism diagnosis actually came after a session in which I basically roleplayed my own social anxiety, and ultimately a lot of it came down to trying to protect myself from fucking up and breaking rules I didn't understand or otherwise annoying or alienating people without meaning to.
I had the same problem with showering regularly growing up tho, fwiw. I still do sometimes if I let other aspects of my mental health slip.
I was diagnosed at 8 because I was struggling in school. Looking back, its because I didn’t understand the instructions the teachers gave and they thought me asking to elaborate was disrespectful. I also would get up and use the bathroom whenever I needed to and that was a huge no no in elementary school, where adults are meant to control everything you do down to your bodily needs, apparently.
I got a little bit of therapy for ADHD as a kid that helped, but all therapy for autism/aspergers just confused me and wasted everyones time.
As an adult Ive been learning about it from just reading on the internet and Youtube and thats helped a little but my progress feels like its stalling a bit. Ive seen one therapist as an adult and she was nice but didnt really help. I think its because, in my head, its always been that everyone else has a problem with me and I cant understand why, Ive never internalized it, so its hard to treat in 1:1 therapy.
Thank you for the insight! I appreciate your thoughts and I will try to avoid generalizations in the future.
See my other comment in this thread which better explains my thoughts on this
I was recently asked (agree/disagree) : I make friends easily in places where people don't usually make friends.
Me: wait, there are places where people make friends?
Disclaimer: I don't have an autism diagnosis, just ADHD.
I think there's a threshold. Like, under X amount would be just a dismissal, around Y amount would mean further testing necessary, over Z amount meaning instant diagnosis can be made.
It's not like questionnaires are law though. But psychiatrists see a lot of patients, so I guess they can use it as a guideline together with their own judgment and so I just want to say you are not an imposter at all, OP! They know it when they see it.
Friendly reminder that not all autistic people are the same either -- a lot of people are talking about how the description of allistic people doesn't really generalize well, but it's worth noting that the generalizations of autistic people also aren't perfect. I was diagnosed earlier this year and eye contact with strangers has never been a problem for me. It's worth keeping in mind how much variation there is within the autism spectrum when making generalizations, because there's so many things that can be different between two given autistic people.
I don't remember who initially linked me to this article, it was probably someone here on Tildes honestly, but it's by far the best presentation of how the autism spectrum works and how you get such a wide array of different experiences therein.
Very much agreed
I like the phrase "if you've met one person with autism, you've met one person with autism"
Hello fellow Autism enjoyer! Congratulations and welcome to the club. You no longer need to feel like an imposter: you're the real deal. However, I would like to take this opportunity to point out some of the features of your newly applied diagnosis. As a diagnosis it is, sadly, very vague, as you may have sensed. So, beyond a kind of social crutch for those plentiful awkward situations where you find out, all too late, what kind of inexplicable faux pas or slight you have just committed, it might have limited value.
The utility of a more in-depth assessment is not to provide some kind of more official-looking document for the occasional Autism Inspector, but rather to help you ascertain what it is that got in return for your particular flavor of interpersonal blindness. That is, you may have recieved a particular gift, which others do not possess. Now, you probably have an idea about what this is because you rely on it for your employment in one way or another. However, a more thorough test, perhaps indistinguishable from an IQ test, will tell you more about which skills of yours are particularly rare and by how much. One in a thousand? One in ten thousand? One in a hundred thousand?
For me I discovered that, yes, I actually am good at math, but I am actually much better at other things. The fact that math was harder for me than other things was not a sign that I was bad at it (as I had erroneously inferred) and I should feel bad about it, rather that I was just really good at something else and I should probably focus on that and leave the harder math to the people who were better at it and enjoyed it more.
It's been great. I tell people what I am good at and focus on being the best at that thing that I can be. They are very happy to know because (1) they have someone who is very good at this thing and (2) they know what it is and know whom to turn to if they need help with it.
So try to find it, then embrace it, then teach those around you to lean on you for it.
Also, communication disorders are real and do have adverse impacts on quality of life and relationships, so make extra efforts to let the people that you love know that you love them, because it will be easy for them to get the impression that you don't, even when you do, because that what happens when you have a communication disorder. "But don't take my word for it..."
I'm wondering if the ICD-10 dx is related to the absolute state of things in the US right now. It's always been a thing for doctors to avoid formalizing certain dxs for the safety of the patient, especially if there's nothing directly useful in having that on paper. For example, a friend was telling me recently about his former workplace wherein the stigma attached to mental health issues requiring meds was such that if you went to the on site doctor and said you were depressed, they'd be all "you're probably fine, but have you ever smoked? Oh cool, I'll prescribe some Wellbutrin to help you quit smoking," pretty much regardless of your answer. Wanting to quit smoking=good, being depressed=liability. Wouldn't surprise me if a similar thing is happening here.
Also, they didn't need to give you a bunch of tests, because a) see above, and b) you fixated, you ruminated, you went back multiple times and multiple times asked the same question until you got an answer that felt clear enough. Not to get "the answer you want," mind you; it was obviously the ambiguity that was the problem, and that's a very autistic trait. Combined with whatever else they've seen from you, I can't imagine there was much doubt.
So congrats, welcome to the club :)
Haha I never even considered my rumination as pointing to autism but now that you mention it, yeah haha.
And yeah I'm wondering if it is because of all the stuff going on with RFK Jr that she went for an Asperger's diagnosis rather than autism. I know she doesn't seem very fond of him, we've talked about him a bit in a prior session.
And see, this is why those tests aren't the end-all, be-all for diagnosis. By their nature the questions have to be broad, and by our nature they need to be specific for us to feel like we answered properly. IMO the biggest improvement that could (and should) be made to those tests is adding a comments section for the test taker, so we can fill in all those edge cases or "unnecessary" specifics in our answers (the desire for/use of which is, in itself, a pretty strong indicator, lol).
But yeah, I'll bet she was just looking out for you. Couldn't hurt to ask, though! Worst case you just look "more" autistic haha.
Heyo~~~~ congratulations on learning more about yourself! :D here's to the next 30!
Welcome to the club. I hope it helped with finding some answers to questions you may never know you had. :)