Seren Sterling
@artistAuDH
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Moving through mess. Dancing back to myself. AuDHD. TBI. Long covid. Hypermobility. MCAS. Dysautonomia. Endometriosis. Pole dancer. Knitter.
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Joined April 2014
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I don't think people have any idea how many of my "vibes" are related to me just trying to make some damn sense of sensory input.
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If I said "I can't see without my glasses," people would interpret it as a fact. Not negativity.
So why am I always accused of being negative if I say that I can't do something or can't do something without supports due to other disabilities?
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If a rest day or day off makes you feel worse instead of better that may be a warning sign that you are way overextended.
If a drop in adrenaline feels like shit, there lies the path to burnout.
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If you are ADHD and/or Autistic and you used to read voraciously but now can't make it through a single book, I strongly suggest looking into MCAS because the brain fog from that flaring is a huge part of the reason I struggle to read now.
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Them: Why are you crying? What happened???
Me: Oh, I just had a moment where apparently, my body decided it felt safe enough to start the emotional processing module. I have no idea what this particular cry is related to.
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Brain: I want an apple
Autism: we don't like the sensory experience of eating a whole apple.
ADHD: absolutely no way are we cutting an apple
Brain: ok, no one gets an apple.
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Today I responded to "don't let the risk of COVID stop you from doing things you love" with "but every time I have it, it has stopped me from doing a thing I love for months." There was no follow up. I think it helped that I wasn't defensive, it was just a fact.
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@ADHDdesigner
I'd also love the freedom to say "I got a week's worth of work done in hyperfocus yesterday, but now my brain is sad" and take the rest of the week off.
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Imagine someone taking your glasses from you and saying "I believe in you!" when you say you can't see.
This is exactly what happens to disabled people all the fucking time.
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My pain scale:
1-2: weirdly restless
3-4: unexplained anxiety
5-6: unexplained anxiety, zero frustration tolerance and maybe a little pain if I check in with my body
7-8: ohhhh I'm in pain that's what is going on
9-10: well now this is awful
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The only reason we don't do this regarding glasses is because we have decided that glasses are a socially acceptable support need.
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Personally I'm increasingly realizing that it's not actually small talk I have a problem with. It's the feeling that it's a test that I always fail.
I don't avoid small talk because I don't understand what phatic communication is. I avoid small talk because I don't agree that if I fail the phatic exchange you get to think less of me.
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If anyone is judging themselves harshly because of the tweets going around about accomplishments after diagnosis. After my autism diagnosis
3 months - lost my job
6 months - lost my EI bc I couldn't apply to jobs without panic attacks
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The more that I consider my theatre training versus how society taught me to mask, the more I realize how cruel and gaslighting masking instructions were.
One of the earliest things I learned in acting was the importance of embodiment. 1/12
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Feels like a good day to send out the reminder that the idea of "good posture" came from eugenics, and the "norms" that are used to determine the best ways to hold your body definitely don't come from looking at people with hypermobility.
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@mckinleaf
I discovered this when I was doing an NT mindfulness class and the goal was to choose some part of your morning routine to stop doing automatically and I was like.... "Wait... you all are telling me that you do things automatically? Like you don't have to think about every step?"
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It seems more common in us, and things like stress and burnout can cause greater activation, leading to increasing brain fog symptoms.
One of the ways I can track my MCAS stability now is by my ability to read (or listen to) books.
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Most people can't actually describe why it's uncomfortable, but it is.
Yet this is what we teach autistic people when we teach masking and "social skills."
"Just respond in this way and with this language and move your body just so and then you will be successful!" 5/12
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I don't know why I chose the tense I did here lol. Because I've literally told people I can't see without my glasses and never been told I'm being negative for it.
It's not a hypothetical.
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There's some great info here, along with other co-occurring conditions:
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One of the most frustrating things about my brain in spoken interactions is how it somehow seems like I am agreeing with people even though I actually just haven't been able to process and respond in real time.
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This is not a sign that you should keep pushing because the rest day "didn't help."
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@mckinleaf
My next response was "that sounds so much less exhausting, why are you trying to change that???"
For me, I've kind of narrowed it down to my brain never automatically sequences motor movements. But I'm also dyspraxic, so I don't know how much that vs. ADHD plays a role.
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I'm pretty sure disabled people, even with a diagnosis, are more likely to get PTSD from their employers than any accommodations.
The whole process is basically set up where it serves the employer to undermine your capabilities and humanity to avoid having to accommodate.
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If you truly care about autistic safety, you would teach us about embodiment and character creation. You would teach us about the energy costs and help us come to our own decisions about when it might be worth it. 8/12
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Acting isn't just telling yourself to hit all the spots and move your body in exactly the right ways from the outside in. A large part of making a character successful is creating embodied feelings for the character that line up with the script. 2/12
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I'm increasingly feeling like ADHD/Autistic people are at a significantly elevated risk for LC. I'm guessing because of the high overlap with hypermobility & dysautonomia & MCAS and the way COVID can send that from relatively stable to disastrous.
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Eventually, we may lose all connection with our bodies and break down because we don't understand how we could possibly do things any more correctly. While others don't recognize they are responding to discomfort with our lack of embodiment and keep pushing more advice. 7/ 12
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I speak without judgement from highly personal experience.
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Then when it doesn't work, we are told over and over that we must not be doing it right. We obviously ignored instructions because they are still uncomfortable. And so we get even more concerned about behaving according to external instructions for even more discomfort. 6/ 12
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Undiagnosed neurodivergence is like being handed a video game that has been set to hard mode, but having people tell you over and over "it's on easy, why do you keep dying? "
Diagnosis is learning the game is on hard mode. It doesn't make it easier, but you can strategize.
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@W_Asherah
I feel like one of my biggest disconnects with allistic people is how I'm *always* talking about problems from a systems perspective, and they are always convinced I'm criticizing individuals no matter how much I try to clarify.
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I used to think I was understimulated a lot because of the whole ADHD thing, but now I'm realizing that I am almost always overstimulated, I just go into freeze (which is what I thought was understimulation) and movement helps regulate that.
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The blocking and lines are then delivered from that place. It's why someone truly in character can often seamlessly pull things back on track even if something goes wrong. Because they are *in* the character. 3/ 12
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My life would be a lot easier if people didn't feel the need for my emotions to have a reason.
They are just doing their thing. It will be ok.
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If you've ever watched an initial read-through or blocking rehearsal, you may be aware of how deeply uncomfortable it can be to watch someone going through the motions of a role. There's this sense of them being puppeted from the outside rather than internally guided. 4/ 12
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1 year - moved back to my mom's house
3 years - living on my mom's property still struggling with burnout and co-occurring health issues.
Having a diagnosis for information and support is great if you can access it, but sometimes it's not enough. You aren't a failure.
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It's Twitter, and I forgot to clarify. I'm not saying you all have MCAS. I'm saying it's commonly co-morbid, frequently overlooked, and can cause worsening symptoms. It's worth seeing if other things match.
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Realizing that my masking is less masking autistic traits (aside from a few big ones like holding still and pretending to make eye contact) and more like.. aggressively (and often unconsciously) masking that I'm ok when I'm not.
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You would teach us to explore our sensory differences and how that changes what our embodiment might naturally look like. You would allow us to explore from there and how we might work with or extend it. 9/12
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Unfortunately, I suspect this is a problem due to a lack of self-engagement and reflection on what exactly makes people uncomfortable. Even I'm coming at this from a theatre perspective because science seems to like to pretend that embodiment doesn't matter. 12/12
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You would teach us how people react to a lack of embodiment so we can make informed choices about things like suppressing stims. Where is my safety higher if I come across as weird vs coming across as uncanny and vice versa? 10/12
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I truly think that a lot of my rumination is because I've been taught that I need to justify feeling a certain way, so I dig through all the garbage to find a suitable story instead of just having a feel for no currently identifiable reason.
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And that it's never a perfect or guaranteed choice.
Teach us how masking from a place of external instructions can heighten panic and dissociation that further disconnects us from our bodies and that it may have unexpected consequences. Both for ourselves and others. 11/12
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One of the ways that I doubted myself being autistic was a voice that said "But you were good at retail. You managed a comic book store for longer than you've kept any other job." But the more I think about it, the more it makes complete sense.
That job was heavily scripted.
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@fochti
I'm always telling people that probably the safest thing for their kids is to be confidently and openly weird enough to find all the other weird kids because it's a lot harder for bullies to operate when you aren't all isolated and masking.
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@fochti
I'm fairly certain I answered "no. I just make sure I arrive places between 20 minutes and an hour early and bring a book to entertain me while I wait so I can't possibly be late"
And the assessor was like: "yeah, that counts."
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I'm so so glad for the people that are thriving post-diagnosis, and I also hope none of you are feeling less than if you are not.
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@fochti
Similar situation with: "do you forget appointments?"
Me: "No, my phone tells me about them. Look how many alarms I have set in my calendar."
Assessor: "Ok, so you don't remember them on your own."
Me: "Sounds fake"
Assessor: "Yeah... that counts"
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@On_An_Impulse
@ADHDdesigner
Oh my gosh yes. Having to make progress reports every week was awful because I tend to have an initial spike where things come together quickly, then a trough where I have to think, then a spike again.
My overall timeline is no different or even shorter than others.
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I also have co-occurring hypermobility, MCAS and POTS. Many of us do.
If we've been driven to burnout, and that's how we got out diagnosis those may conditions can be in enormous flares.
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@MauiMescudi
"Ok, but what is the context of this question??"
"Is the museum busy? Does the theatre have assigned seats? Is it a movie theatre or a theatre theatre? What is at the museum? What if I just wanted to make a day of it and do both?"
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Particularly if you have seen a significant change in your focus/health/symptoms over time.
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Petition to hire autistic people to write your instructions.
My sister and I just spent like 2 minutes staring at a "Remove the cap" step that did not specify that the referred to cap was on a different item than the rest of the steps referred to.
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@OverContentious
There's no easy answer here because this is a systemic rather than individual problem.
I guess what I'm trying to get at is not to prematurely give up any days where you might be able to rest because it feels worse.
I used to take on extra work to keep the adrenaline going.
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I didn't expect this to break containment so of course, I did a more offhand tweet of a thing that was on my mind instead of making sure it was clear. 🤷
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@kaelin_aether
I've had the experience in the SAME pole class where I'm like "sorry, I missed that because I had to take my glasses off to go upside-down" - no comment. But when I say "sorry, I understand this cue, but can't do it now because of shoulder instability" - believe in yourself!
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I'm back on the right stimulant dose for the first time in years and I have not once blacked out on standing today.
I can also do things without getting light headed. It doesn't feel like I'm wearing a concrete suit.
THESE ARE TREATING MY DYSAUTONOMIA.
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The worst part about this is that I literally can't get doctors to see anything but the anxiety and the assume it's the problem, not that it's how my body responds to pain. 🙃
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Me: "I don't know why I keep getting in trouble with my boss. I don't talk to them any differently than my coworker."
A friend: "You do realize that's the problem right?"
I never learned, nor was I born with the ability, to treat people in authority as being different to everyone else.
I just don't get it. I'll say the same stuff, expect the same behaviour from them, and get really confused by how others genuflect to them.
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NTs think my words have a hidden meaning, but what they are more likely to have is hidden puns.
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Now I'm not saying "keep doing things that hurt you," but there's lots of ways to adapt and support your body that are not "try to hold yourself in the way that others say looks correct."
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For example: letting my posture stay collapsed all the time does cause me issues over time. But "correcting" it just causes more pain and tension.
So you will find me doing chest circles and body waves pretty much everywhere all the time because that feels much better.
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I think the reasons that most mindfulness techniques fail me is because they assume that we need to find ways to bypass automatic sensory filtering to access mindfulness.
Filtering that I don't have. What I need is tools to help me tolerate my lack of sensory filtering.
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I've started telling people that "I'm sorry, but my brain can't process positivity or solutions right now," and it's been surprisingly effective.
And if it wasn't, it would still be effective at figuring out who isn't safe to process with.
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@chefhealthcoach
I apologize if I didn't word it clearly enough. I meant to look and see if other symptoms fit. Not to assign anyone a diagnosis.
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I just read a paper that mentioned that people who feel safe in their body find interoceptive practices easier to access. I'm very proud that my theory that some of us may need to start by creating feelings of body safety instead of starting with set practices is valid.
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@AutSciPerson
The first thing I said when my therapist asked how I was feeling about diagnosis was "so I'm not secretly a bad person?"
Most autistic people I have shared that with have similar stories.
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@fochti
I ended up finding an entire group of ND kids in high school, and we would hang out across the hall from the popular kids being loud and "embarrassing."
The popular kids hated it, but we had protection in numbers.
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I used to feel bad about myself whenever I came across body language advice, but now I have to laugh at the absurdity.
The other day I came across one about how a "lopsided smile is rude."
Lol tell that to my uneven facial coordination. Dear face muscles, you are being rude.
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I've mentioned this before, but I am absolutely begging someone to make an electrolyte drink without stevia or other sugar alternatives. Please please please please.
I was only a bit bothered by stevia pre last COVID flare, but now I'm not tolerating it at all.
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This is so important. Disclosing my disabilities and requesting accomodations was absolutely traumatic, cost me the mental health I had worked to recover, and ended with me resigning. If we don't address that this is common, it's not safe for people to disclose.
It's alive: "Disability in the new workplace: What companies need to know and do" is out. Read it to learn about the harmful ableist myths that are part of our norms and interactions. And importantly, what you and your company can do to dismantle them.
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@AutSciPerson
My therapist once told me "you are a human being, not a human doing" and I think this is so relevant here. It is not worth sacrificing your "being" for "doing" the PhD if it is no longer possible.
You know better than anyone else what you need to do.
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A big piece of unlearning shame about my neurodivergence has been through really exploring the ways that I move and can't move and realizing how many of the things I was told reflect bad personality traits are actually areas where I have physical barriers.
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Anyway, I would like for something to change about all of this so that I can feel like the risk isn't too much to join a choir again.
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@StructuredSucc
My greatest discovery here was command hooks. Does something I could hang always end up on the floor in a spot? Or in a pile in a spot.
Command hooks.
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@laurenancona
A friend asked me about my "thinking face" as it happened. Telling me how it made her feel, but not in a judgmental way. In an "this is what my brain is telling me and I need to check in so I don't interpret this the wrong way" way.
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You know what is extremely emotionally dysregulating even with excellent mental health tools? Chronic pain. Like maybe we should be asking if autistic people are in pain and figuring out why.
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In my experience: practicing interoception amd increasing supports and proprioceptive input >>>>> practicing constant external body surveillance to try to "fix" how you stand/move/sit/exist in your body
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@fochti
A guy once asked me what I was doing later, and I started listing out all the things I like to do in the evening.
I was later informed this may have been an attempt at finding out if I might do something with them, and that by listing my routine, I was saying "no" 🫠🙃
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@AutSciPerson
Dyspraxia frequently means that I know what my body is supposed to be doing, but I can't physically do it. Having movement instructors tell me over and over again what to do is less than helpful because it gets even more difficult under increased stress.
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Pain that I don't recognize as pain is my second most common meltdown trigger, after feeling trapped.
I feel like more health providers need to understand this. Because I can't go in and say "I keep melting down for no clear reason, I think something is physically wrong."
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I went down a rabbit hole on POTS last night and learned (probably relearned because I feel like I did know this) that methylphenidate is a peripheral vasoconstrictor so I was 100% right about it helping my POTS.
Hey how many of us are accidentally treating dysautonomia?
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Part of my autistic problem with employment is that I learned all the rules of cover letters and specific interview formats and then the last time I looked for work, the floor was ripped out from under me with this kind of hell.
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Or if I can't move that much, do things like add extra support by sitting backwards in a chair or propping with pillows.
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Fellow hypermobile friends, did you know that the primary goal of a cool down after exercise is not to stretch your muscles, but instead to bring your nervous system from a sympathetic dominant to a balanced state?
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@NegateTheChaos
@AutisticCallum_
One of the reasons I've burnt out at so many jobs is because I've known that any mistakes would be held against me more harshly because I wasn't "likeable."
And there have been times where even that wasn't seen as enough.
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@Saraheboon
It's hard to say this... But I have inflicted it on others. When I was masking heavily, I was incredibly ableist toward anyone who was externalizing the traits I was trying to hide.
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I'll note that before I started actively working on my interoception, 7-8 was unexplainable rage/meltdowns, and I often couldn't identify pain until 9.
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I'm learning very slowly and painfully that it actually saves me a lot of grief to not bring up the problem I've spotted and just let other people figure it out when they get there. Because they aren't going to believe me.
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But I never get to actually voice my opinion because people get weird about it when you bring things up later after they moved on.
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Now I get that we can't practically do this all the time because, in my opinion, a large degree of autistic masking is physical, *but* how can we at least learn to support ourselves and let our bodies be when it is possible.
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And learning how my body wants to move has actually allowed me to better mimic how others move with less damage.
I know enough about how my body works that I can change some of my physically or movement qualities now without feeling like I'm puppeting myself from the outside.
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@laurenancona
Super interesting. When I was at my worst post-COVID, and work trauma, finding the right B12 + magnesium supplements for me were I think what brought me back from being nearly bedbound.
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@mykola
The morning after my therapist told me, I cant officially diagnose, but you are probably autistic I broke down sobbing all because I had the sudden realization I still carried so much shame. And that so many of the traits we discussed I had associated with "bad person".
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Regularly scheduled PSA that hypermobility doesn't always equal flexibility. Especially as we get older, stiffness is one of the ways that our nervous system can attempt to protect our unstable joints.
My most unstable joints have the least mobility.
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I left 0 out because I don't even know what that feels like.
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@SNeurotypicals
All of this plus, yes, I did need the excessive number of adjectives because the sentence doesn't *feel* the same when it doesn't move to some mysterious rhythm that runs through my mind and body.
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The one thread that I do feel runs through both ADHD and Autism research that I find particularly disturbing is a persistent disembodiment. Where the more we are able to "overcome" unruly bodies, the more "functioning" or "valuable" we are.
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@SNeurotypicals
I've actually identified that I don't have an issue with small talk unless it feels like a test.
Friendly workers at my favourite shops where I know it's simply a phatic exchange. Absolutely fine.
Boss asking me how I am and judging my response? Not fine.
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