Autism and The MU* Community
I know there's a topic on ADHD and people's experiences with both it and MUs, and while there's some overlap between the two, I thought it might be worth while checking in with the community on Autism and their experiences.
Things I'd be interested in hearing about:
Officially Diagnosed? Self Diagosed? Your origin / diagnosis experiences. How long did it take? Was it positive?
How have you felt being on the spectrum has impacted your roleplaying and interaction with the MU* community?
How has roleplaying influenced your autism? Have you found it helps? Makes things harder?
Anything else you think relates!
Figure it's only fair I answer my own questions here.
My Autism Origin Story
I am the sole parent of a 14 year old son on the spectrum. I didn't pick up on it, it was the school that did. Half because I didn't notice, because he is so much like me. And half because I structure my life in such a way that there's minimal stresses for me so there were no triggers for him at home. So there were never any shutdowns or withdrawals or issues with sensory stuff. He's an amazing and smart kid, who loves science and has been having philosophical debates with me since he was 5.
He was diagnosed at the age of 7. And my family barely accepted it. Instead they had the view it was because he didn't have a man in his life. Because I was bringing him up wrong. He didn't have autism, it was me that was the mistake. Not all of my family felt this way, but enough that it hurt.
And from that point of diagnosis of my son, on meeting, introducing and explaining to people, so many would ask me: Are you on the spectrum too? People assumed I was because of my behaviour. And as I read more and more and learned more, I recognised that probably 80% of the things that qualify for my son being on the spectrum, I either experienced as a child/teen/young adult, and in most cases, still experience.
I've come up with so many ways to cope, to pretend. To fake eye contact, to hide the scratch marks, to limit my social interactions, noise cancelling headphones, quiet environment. To have a job freelancing as a developer so I don't have to navigate work places. To avoid using the phone. Using public transport (because I can't cope with cars). I have no in person friends. Not one. I have a couple of amazing friends online. I really struggle with anxiety and depression, sleep and taking care of myself.
This year though, I've been working hard on myself and my mental health. Setting up routines and just taking tiny baby steps. And once I took a few of those baby steps, and became more comfortable slowly dropping those masks, I got myself a new doctor, one that understood myself and my son a bit better and didn't give less than helpful advice like: He just needs to join a sport.
And from them, a referral to a psychiatrist. Because we're in lockdown we had the first meeting via zoom session last month and there will be a couple more before I get an official diagnosis. But he did state that I am almost certainly on the spectrum.
@clarity Thinking not so many are on the spectrum. O_O
Carma last edited by
I'll break the ice.
I started writing something, and it became way too personal about things I don't want to talk about, so here's an abridged and highly sanitized response.
Origin Story: I wasn't officially diagnosed as autistic until about 4 years ago. I told my therapist that I thought I may be autistic and she was surprised that I didn't already know.
Community: I would say my autism has greatly enhanced my IC experience, but also strongly impacted my OOC experience. I have to be incredibly sharp with the way I word things, because one innocuous response could be taken the wrong way. You've probably heard that we like to say what we mean without understanding how that could affect someone's feelings. It takes active effort to dress up every response to convey both what I want to say and the emotion I'm trying to send along with it. Over text, it's a fine art.
Roleplaying: I'm the kind of person who will often act in RL what my character is doing to get a better idea of how to write it. I find this helps with making sure it seems socially acceptable or realistic. It's a bit like practicing masking.
Ganymede last edited by Ganymede
I think that this may be a difficult topic to share on given the stigma surrounding autism that many of us probably grew up around.
It's no secret that my daughter is on the spectrum. She was diagnosed early with it because she started to exhibit superpowers at the same time (hyperlexia). She has difficulty wrestling with her emotions, and this is something I need to work on personally because I have been conditioned (I say this without hyperbole) to suppress those. It makes it difficult for she and I to talk about her feelings, something on which my partner finds necessary to intervene.
I think it is too easy for parents to fall into the same invincibility mindset we had when we were teenagers. We think that we know how to parent correctly, when the fact is that we probably don't. Copying our parents' methods because we turned out "okay" is also not necessarily the best option because the world that we grew up in no longer exists. Like many things, we probably should accede to the wisdom and suggestions of trained professionals. They aren't always right, but when they are their suggestions are hopefully based on studies that we can fall back on.
So, back to my little girl: yes, she has superpowers beyond being 4'6" at age 8 (she is tall, sturdy, and built to knock over offensive linemen). She won the Art and Spanish awards (given to the best student in the class) (second time for the Spanish award) last year. But she also exhibits palilalia (which makes her sound a little like Shrapnel from Transformers, something which I take much joy in because Shrapnel is awesome). Thankfully, the students and teachers at her (Catholic) school pay that quirk little mind, and she is a joyfully, caring, wonderful young woman in spite of what discrimination she would have faced when I was growing up.
Did I have autism growing up? I don't think so, personally. But that's why it is very important for me, I think, to be more sensitive to her needs. It's a trying time, and I feel like I'm failing sometimes, but the best I can do is give what I have, keep trying to be better, and stop beating myself up for not being perfect.
Naturally, to defy the stereotype that we are all a bunch of toxic asshats, if there's anyone that wants to talk about autism here, that's cool, and the mods here will monitor this thread specifically to make sure that it is as safe as can be.
@carma Yeah, I have a habit of way over sharing sometimes, and being too open about things I probably shouldn't be. But completely understand, don't want you, or anyone to talk about anything that makes them uncomfortable.
For myself, I notice that over the years, since I was a teenager actually, I've found myself using roleplaying on MU*s to... literally practise how to socialise in a way that didn't have any lasting impact on my RL friends and people I meet. I am not sure that this was the most healthiest thing to do, or whether it really helped or not, but I did it all the same.
I got formally diagnosed a couple of years ago (during Autism Awareness Week, entertainingly).
I'm in my 40s. There wasn't really a stigma around autism when I was a kid - it was just something that didn't happen to girls, and therefore I was forever being naughty and acting out, and had to be corralled back into what was socially acceptable even though it made absolutely no sense (and still doesn't). The word 'ladylike' still makes me twitch, because it was always what I wasn't and yet what I had to be whether I understood it or not. This is not an uncommon experience for women diagnosed later in life.
It occurred to me that it was a possibility when I attended a talk on neurodiversity in my then-new workplace, four years back, and a new presenter brought up a list of traits that people on the spectrum might display; I looked at it and went 'Well - I don't have those two? But other than that...' - and then a work-friend with two autistic sons said 'Sorry, I thought you knew'.
I did some background reading, then marched off to the doctor's and made them refer me. Attended a screening interview, then a diagnostic interview, and then after talking to my mother they made their minds up. During the formal diagnosis interview, the poor chap tried to gently break it to me that sometimes an experienced clinician can pretty much see it walking through the door, and that's what had happened at the screening interview. The interviews after that had been justifying the diagnosis rather than determining whether I warranted it; in some ways it was nice that it was so obvious, but I was left feeling a bit as though if it was that bloody obvious then maybe someone should have said something in the preceding decades.
So yeah. I'm on the spectrum, significantly so, and always have been. It would been nice to have known a few decades ago, to have had some coping strategies I didn't develop myself, to have understood that not everyone thinks like me and that not everyone can cope with difference. I only found out after I got my life on some sort of track, not when it could have made a massive difference to its prior path.
And then, talking to my little brother to let him know that it's in the family in case my nephews need the support I didn't get? It turned out he'd known it was likely for 20 years.
As to what MU* RP has done for me? Playing a charming character who was able to handle people let me learn how to deal with people in a friendly fashion myself. I got to test things out before trying them in reality, and I got to learn a lot about how people who aren't me think - and that helped me realise that it's not the same way I think. Not everyone has a branching code-like script for interactions with other humans. Who knew?
LARP helped hugely as well; when you've been in a battle with 3,000 people, when you've hopped up on a table to make a speech to fifty, when you've saved someone else's character with quick thinking and a spell that was never intended for that purpose, there's very little that can stop you grasping your courage in both hands and stepping up to do something that truly needs to be done.
RP teaches a lot of 'soft' skills, and without it I never would have learned to cope with people.
faraday last edited by
When I started doing research for my kids' ADHD (and realizing I had it too), I stumbled upon a crossover video about the differences between ADHD and Autism. It really changed my oversimplified/stereotypical/"Rain Man" view of what autism was.
Then I fell into a rabbit hole of other autism YouTubers like Yo Samdy Sam, and it was like everything in my life suddenly made sense. The obvious things (eye contact, sensory overload, hyper-focused interests, stimming), the weird things (oh so that's probably why I always walk on my tiptoes), and just the way that I've always seemed to think differently from everybody else.
Haven't felt like going through the whole diagnosis process, due to time and expense, but I've gone through umpteen screening tests and the DSM5 criteria and I'm sure.
Roleplaying has definitely helped my social skills. I was catastrophically bad at small talk before I started MUSHing. Now I've learned to fake it halfway decently by mirroring others.
The OOC stuff is hard, because I relate differently. I'm often blindsided by the things people get upset over, because it just doesn't compute for me.
@ganymede I think I was largely just curious too see whether there were others on the spectrum within the community to see if there were some shared experiences with how they felt roleplaying on MUs helped, or hindered and well, maybe try compare/contrast a little with stuff.
For myself, I feel with parenting I have no clue what I'm doing most of the time and just making it up as I go along. It's scary sometimes, well a lot actually. Most of the time it seems to be going okay. Curiously, it is through spending time with my son as he grows up that I find myself accepting myself more and more and masking, less and less and being myself. Home is our chill space.
The not beating yourself up for not being perfect definitely hits home for me. And something I've struggled with a lot. The idea that if I can pretend well enough, not make any mistakes, do everything just right, then I can pass for normal/make friends/not be criticised/avoid conflict/anything else negative that I struggle with. This is something I'm working actively working on.
@clarity Sod passing for normal; it's a one-way trip to stress, hatred, and bullying. Look for a space where you can be yourself, instead, and where people will cope. They're becoming more common.
Carma last edited by
- had to be corralled back into what was socially acceptable even though it made absolutely no sense (and still doesn't)
- a work-friend with two autistic sons said 'Sorry, I thought you knew'.
- sometimes an experienced clinician can pretty much see it walking through the door
- It would been nice to have known a few decades ago
- It turned out he'd known it was likely for 20 years.
All of this is so familiar. Thank you for sharing.
why I always walk on my tiptoes
And here I thought it was because I was into furries as a teenager.
I was diagonosised with autism when I was about 9 years old by the school system. I couldn't read at all until I was about 12. I still can barely write out things by hand, but my eye hand coordination is fine when not writing stuff out by hand. (I can sew, but not write!) I am also dyslexic and have dysgraphia which is part of that. I was non-verbal until I was about 5 years old. My mom was told that I would never reach the point where I would be able to live on my own and would need to be under her care or in a facility for the rest of my life. I have speech problem as well.
As a child most thought I was super dumb - I couldn't talk at all and then couldn't speak right. Then I couldn't read or write.
Eventually I reached the point of becoming very high functioning on the spectrum to the point where many who meet/know me in real life do not know. I didn't finish high school, but got my GED and did an RN program at a community college and now work without anyone noticing I am disabled. I didn't get special help through the RN program, but it was harder for me than many others.
Despite severe autism symptoms and being /low functioning/ in early childhood it took me a long time and being in the public school system to get diagnosied. That is likely largely because I am a female from a background of proverty. I didn't get the fancy therapies and etc.
Some say' especially who meet me online where I can be super chatty, that I don't seem autistic at all and even will doubt it is true. Is it true? Was a misdiganosised. I don't even know.
One thing I will say is that autism often looks different in females than men. Not all autistic people have all autistic traits. While I do have some social difficulities, my autism was more about severe around language written and verbal than anything.
I believe very strongly though that autism should not be used as excuse for bad behavior in real life and online. It is why when I socially fucked up in mushing, I didn't go, but I am autistic!! We are all responsible for our own behaviors and nobody is fully neurologically normal.
We also all develope at different rates. I didn't mean the childhood milestones at the right time, but I am well functioning now.
I used to write really badly when I mushed. So much so that people would ask me if I was English as a second lang and not always believe when when I said, I wasn't!
I started to mush before I went through nursing school and I think that mushing actually helped to get my understanding of the written word high enough where I could make it through said program.
Mushing has been overall good for me and helpful. I meant lots of understanding and wonderful people. I learned alot about language and the meaning behind words and etc. I came a long way in my understanding of words since I started to mush.
When I am really exhausted or babbling in ooc talks, my typing and word use sometimes get really really bad. Some of you have seen and tried to patiently read through it! Thank you.
I have had bad moments though in mushing where it was not the best for me, where I was taking it to seriously and getting too insecure. If that was autism or just me, who knows.
One could even argue I am not really autistic, but am instead developementally disabled or learning disabled around language. But I don't think the terms don't matter exactly. We all have our issues to overcome and differences.
I do find it interesting that some people with autism are hyperlexic. It seems that maybe autism can cause extremes in both directions. It is fascinating.
I also want to say this to parents with kids with autism.
The experts are not always right about it. They will say things like this child is low funcitoning and will never be able to xyz. They are often wrong. Autism is deeply complicated and many people on the spectrum understand more than many realize and will make sudden leaps forward.
I am not saying that if someone has a low funcinting autism child they will for sure reach the point of being able to care for themselves and work - but I am saying it is much more possible than many experts will lead one to believe. And that nobody really knows what their future will bring.
I was considered by /experts/ to be basically mentally retarded because I couldn't outwardly express myself in a way they could understand. But I did feel alot of pain and hurt, realizing that people were not able to understand me and believed I was dumb. I was grasping more than they realized.
So I def urge not to give up hope and to understand that many autistic children are more growing and learning differently and at a different pace, but that doesn't mean there is anything wrong with them.
I shoud stop spamming this board, but one more point!
There is alot about autism that is very wonderful.
My hoping and bouncing around hyperly while listening to the same song again and again, is considered and autistic trait.
But it is also a super fun autistic trait!
Everyone should hop hyperly around while listening to /Its raining tacos/ over and over again! You won't believe how fun it is to stim!
TiredEwok last edited by
My oldest was diagnosed as being autistic at the age of five. There were always hints to his being so from as young as several months old - disliked being held as a baby, motor skill and speech delays, etc - but it isn't something doctors are trained to diagnose, from what we were told later on. The Navy doctors were under the belief that he was ADHD but wouldn't medicate him because he was too young. It wasn't their fault, again they weren't trained to know how to diagnosed autism. Thankfully, when he entered kindergarten they were able to finally figure out what was going on.
Ganymede last edited by
One could even argue I am not really autistic, but am instead developementally disabled or learning disabled around language.
I do not argue with a person as to whether they are autistic or not. It is extraordinarily brave, I think, for any adult to admit their perceived weaknesses.
When I say that my daughter has a superpower, I mean it. And like many superheroes, she has her weaknesses. I think we are all like that, to some degree, and while your weakness may be in reading or writing, that does not mean you do not have other superpowers to boast of. For example, you seem very compassionate to me, you worked straight through COVID times as a nurse, and you took on so many shifts during that period that you admitted your exhaustion.
So, you've got superpowers, and the weaknesses that come with it. Own them both!
My father often told me how when I was a baby, he thought I was 'slow'. I didn't speak until I was about 2, was slow to get up and walk, etc etc. My mother had been put on an alcohol IV to prevent an early birth, so.. they had reason to worry.
Then it all turned around. I went from not speaking in words, to full sentences, just got up and walked, and before I was 4, I was reading some of my older brother's books.
But now? Yeah. My former therapist suspects I am on the spectrum, especially now that ADHD and autism are known to overlap. I can be overwhelmed with noise and just.. emotionally erupt, things like that.
Sadly, that therapist left the practice and I was never diagnosed, and now I'm fighting on just getting ADHD meds.
I received my diagnosis last month. I've known for years, I raised two boys that both fall on the spectrum. But it was nice to have it medically confirmed. I'm hopeful that therapy, and some light medication, will help take some of the burden of having to make all my own coping mechanisms all the time. Which would be nice, because after 38 years of self-coping, I am exhausted. I don't have the option of a job that allows me to be by myself, or just work quietly at my desk. So adulthood has been a nightmare of trying to explain to employer after employer why my work history is as everchanging as it is. I'm hoping this will help end that nightmare.
I am too old for a childhood autism diagnosis -- I predate "Asperger's Syndrome" in the US and Canada, and a speech delay was a required criterion for an autism diagnosis prior to that. I probably had a speech delay but nobody noticed; evidently I cried so much as an infant that family members feel they are still justified in ignoring me when I make noise forty-six years later.
So as a kid I was "gifted, but emotionally disturbed" and put in the gifted program and the one for the firebugs, the kids in foster care, the kids of colour who didn't grovel enough and the girls who got angry.
One day like fifteen years ago I made a MUSH character with a certain set of my own quirks, more of them than I usually do, and another player told me what a great representation of an autistic adult he was. I still don't have an 'official' diagnosis from a medical-expert-on-autism, but nurses, shrinks, my GP, other autistic people, my uncle's PT, etc keep giving me the casual one.
MUSHing, where people's social-signals are right there in text, allows me to play at being far more socially adroit than I am.
I am totally hyperlexic. It's not so profound now. When I was a kid it was probably hilarious. When I was in grade 3 I went on this Hemingway kick. I didn't understand Hemingway, of course, but when I re-read them in my late twenties I remembered the cadence.
@faraday I, too, am an "idiopathic toe-walker." You might be amused by this barefoot running trend thing, and the 'Born to Run' book and related stuff about the mechanics of the human gait, 'cause it kinda looks like not being a toe-walker is an artifact of wearing harder-soled shoes and shoes with heels. My mom used to hang out with this old Shoshone guy when I was a kid and he said I just walked the way people did when everybody wore moccasins.