@hauchvonstaub@nrw.social avatar

hauchvonstaub

@hauchvonstaub@nrw.social

Spät diagnostiziert mit ADHS und auf absehbare Zeit(mindestens 20 Monate) nur selbst diagnostiziert autistisch.
Mein Profilbild soll ein Fenster sein, durch das Sonnenlicht scheint, in dem Staub sichtbar wird.
(he/him)
(Beruf,Hobbies, usw. trage ich nach, sobald es ein wirksames Mittel gegen ME/CFS gibt. /s)

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chevalier26, to actuallyautistic
@chevalier26@mastodon.social avatar

What are your thoughts on self-diagnosis being belittled by many in the autistic community?

For clarity, I’m not asking to start a debate, just a genuine discussion. I currently don’t have the option to get a diagnosis, but feel fairly confident that the research I’ve done over the past year and a half has been legitimate and credible.

I don’t feel comfortable saying that I am definitively autistic, but I am ok with saying I’m “self-suspecting.” @actuallyautistic

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@chevalier26 @actuallyautistic
I've barely seen any negative reaction on here for self-diagnosis and personally haven't gotten any negative responses.
My first assessment will probably be in a year from now and if it wouldn't potentially have an impact on my level of disability, I probably wouldn't bother getting an official diagnosis, especially because of all the negative experiences I've heard about the diagnostic process here in germany.

elmyra, to mecfs
@elmyra@wandering.shop avatar

#mecfs crowd, what is your experience with #adhd meds?

@mecfs
@adhd

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@elmyra

I have ADHD and I find them helpful(I wouldn't be surprised if undiagnosed ADHD is more common among people with ME/CFS).
I've tried MPH and Elvanse(LDX) and both helped me to sleep more, slightly helped with digestion problems and they helped with stress.
Both have downsides, MPH mostly the negativ impact on memory and creativity and Elvanse mostly that the physical exhaustion is more present and affects my way earlier.

@mecfs @adhd

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@elmyra

I would describe the effect of MPH as an "energy saving mode" for the brain, which makes recovery easier, but makes some mentally demanding tasks not even worth the efford and it also helps more to prevent stress and overstimulation than Elvanse.
Elvanse actually makes it easier to fokus and has a positive impact on my memory, but it's not that helpful when leaving the house.
So for me MPH is better for recovery and Elvanse is better to get something done.

@mecfs @adhd

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@elmyra

Also, if you're planning to take ADHD meds, keep in mind, that you probably need a low dose.
I tried speed as a teenager and needed a surprisingly large amount to even feel an effect, but I only needed 5mg of either MPH or Elvanse.
(The rule of thumb is to start 1/4 of the dose and for caffein, that seems to be accurate for me.
I only developed the oversensitivity for meds after a crash.)

@mecfs @adhd

ashleyspencer, (edited ) to actuallyautistic
@ashleyspencer@autistics.life avatar

For AuDHD:

Which terms do you prefer to use?

Do you use ‘have’ or ‘I am’ to describe your autism and ADHD?

Personally, I’m the first one and use ‘I am’ to describe both.

Just curious to see how common each one is. 🙂

@actuallyautistic
@audhd

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@zyd

There are autistic people without ADHD who feel the same way about autism, as you do about ADHD and there are allistic people with ADHD who feel the same way about their ADHD, as you do about autism.
So I think it's a matter of perspective and what you even define as autism/ADHD.

I personally think, if you could get rid of your ADHD, you'd also feel like it had been a part of who you were and you'd have changed as a person.

@ashleyspencer @actuallyautistic @audhd

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@ashleyspencer

I mostly use I'm autistic and have ADHD, because there isn't an established term for the property of being someone with ADHD yet.
I know about terms like "kinetic" or "pelagic", but I don't want to call myself something that I then always either have to explain, or risk people completely misunderstanding what I even said.
Another reason is, that saying "I'm ADHD" feels comparable to saying "I'm ASD", like I'm just identifying with a disorder.

@actuallyautistic @audhd

theaardvark, to Autism
@theaardvark@mastodon.me.uk avatar


How does everyone know how, when and how much they're masking?
As a late-diagnosed , I struggle to differentiate between "me but masking" and "me but in a diff situation".
Now that I know I'm autistic, I even miss the person I used to be in some situations before I knew.
I used to call myself a "social chameleon" - I just changed automatically to suit the circumstances.
But who actually am I and what is just a mask?
@actuallyautistic
@actuallyadhd

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@theaardvark @actuallyautistic @actuallyadhd
Before realising that I'm autistic, I realised that the more time I spend alone(up to a certain point), the less I am like others and the more I am like myself.
There were times, when I didn't even talk to people online, barely left the house and at least for a while, I prefered and enjoyed that.
I think I'm more the way I have been as a child, when I'm not adjusting my behavior to others.

rebekka_m, to ADHD
@rebekka_m@fnordon.de avatar

Hypothesis to be discussed with the @actuallyautistic:

The high prevalence of in Autistics might be just the symptoms of an overstimulated life, misunderstood communications and lots of trauma that led to cPTSD.

Would also explain why ADHD meds very often don't work for Autistics - but certain antidepressants do.

What do you think?

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@rebekka_m

I find that unlikely, especially since we already know, that there is a genetic overlap between autism and ADHD.
It just sounds like the "ADHD isn't real/overdiagnosed"-discussion, except for misunderstood communication.
I think that both in allistic and autistic people ADHD is exacerbated, but not caused by the environment and someones history.

@actuallyautistic

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@rebekka_m

The question is, how you want to define ADHD and according to what symptoms.
If you'd diagnose lactose intolerance like ADHD, a person that had a vegan diet couldn't be lactose intolerant, because they don't have any symptoms.
I find it more helpful to see ADHD as a neurotype, with a higher susceptibility for certain problems, that can often be adressed before they cause a person to suffer and seem obvious enough for a doctor to recognise them as impairing.

@actuallyautistic

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@rebekka_m

I also think that this is similar to the "can autism be cured"-discussion, where certain adults don't reacht the diagnostic threshold for ASD anymore, so depending on who you ask, they're officially "cured from autism".
Same with people who get diagnosed later in life, who officially only had "autistic traits" or no diagnosis at all until they reach burnout and suddenly have enough symptoms to be diagnosed according to current diagnostic criteria.

@actuallyautistic

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@rebekka_m

From what I know, ADHD meds often help autistic people with ADHD, just that they usually need a lower dose and they can have additional negative effects.
The first antidepressant I found, that is used to treat ADHD is Bupropion, which is basically an amphetamin.
Some non-autistic people with ADHD also claim that 5-HTP is enough to deal with their ADHD, so just increasing serotonin.
ADHD is more complex than just a lack of dopamin/noradrenalin.

@actuallyautistic

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@rebekka_m

I think it just means that ADHD and autism as a neurotype can both lead to similar promlems in some areas and can both have a synergy effect.
You can have lactose intolerance, but still get digestion problems from milk without lactose.
This is the case for me, milk leads to digestion problems for me, but it can become really painful without lactase pills, so it's lactose intolerance, but not only lactose intolerance.

@actuallyautistic

mayaisloading, to random
@mayaisloading@beige.party avatar

I don't know who needs to hear this but you're not a night owl, you just have the sleep hygiene of a 6 year old the night after Christmas.

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@mayaisloading This is such an ignorant statement.
People do have different chronotypes and not living acording to your chronotype is damaging to your health.
There even is a medical diagnosis for when your chronotype is too far off the norm and you can't "cure" your chronotype with sleep hygiene.
Spreading this is actively harmful.

https://en.wikipedia.org/wiki/Delayed_sleep_phase_disorder

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@mayaisloading By generally telling people they aren't "night owls", you implied, that there are no "night owls".
(btw. what you're doing right now is called a motte-and-bailey)

It is possible to "be joking" and still spread a harmful message, otherwise all racist jokes could just be excused.
Jokes have a message, your "joke" has a harmful(ableist) message.

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@mayaisloading It's not about getting medical knowledge, it's about perpetuating a harmful misbelief.
Just like making a racist joke doesn't make you the whole source of someone elses racist beliefs.
Let's say someone explained to you, they didn't mean all members of a racialised minority with a racist joke would you accept that explanation?
Would you accept "people shouldn't take me serious, I don't even have a degree in sociology" as an excuse?
Would it be acceptable "entertainment"?

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@mayaisloading You know what a comparison is, right?
I use racism as a comparison, because it's less socially accepted than ableism, but the behavior is the same.
There is no widespread harmful misbelief about people singing in the shower.
There is no minority of people being mistreated by society for involuntarily singing in the shower.
People are able to hear, if someone is good at singing, but most people aren't aware, that DSPS exists and is not just laziness(or bad sleep hygiene).

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@mayaisloading I read it in the context of our society, just like "I just moved into this new neighborhood, I hope my bike doesn't get stolen" could be a non-racist statement without widespread racist clishés.
The "joke" here did imply something without any group of people being named, so is it on whoever is "gonna read it the way they want to read it"?
I'd also disagree with your example, since everyone can call themself a singer, it's not a protected title like doctor.

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@mayaisloading I think you'd have already gotten my point, if you wouldn't try to defend yourself.

autism101, to actuallyautistic
@autism101@mstdn.social avatar

Watching the same show over-and-over again is one way I regulate the autistic side of my brain. But the ADHD side sure gets bored sometimes.

Do you watch any shows on repeat?

@actuallyautistic

image: @NoNonsenseND

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@autism101

I don't rewatch movies or shows regularly.
Even today with my memory problems, I rarely watch something more than once.
It's different with music or video games.
With video games the problem is, that at some point I'm reminded, that my lifetime is finite and that I also want to experience other games, otherwise I'd probably replay some games over and over again.
I don't know how often I've restarted games like Stardew Valley or Links Awakening.

@actuallyautistic

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@autism101

I think I don't like to rewatch movies or shows, because how my memory works.
When I watch something for the first time, I know what happened, but the more often I watch it, the more it feels like an "inflation of informations", like informations lose value and I remember less, the more often I watch something.
I want to keep the memory of something I watched, not lose it more and more, everytime I rewatch something.

@actuallyautistic

sebwhatever, to music
@sebwhatever@mastodon.social avatar

@actuallyautistic

What are your favorite bands/singers/rappers right now?

Mine in no particular order:

• Can
• Unknown Mortal Orchestra
• The Yeah Yeah Yeahs
• Tom Waits
• David Byrne

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@sebwhatever

Currently I mostly either listen to chillwave playlists, mostly without looking at the song names or video game soundtracks.
I couldn't come up with a top 5 of what I'm listening to right now, but also couldn't reduce musicians I generally listen to to a top 5.
So some of the ones I still like to listen to from time to time are:

  • Melos Han-Tani
    -Nada Surf
    -Krosia
    -Carpenter Brut

@actuallyautistic

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@sebwhatever

I had to look that up.
I probably don't know the full lyrics to any of their songs and the most I've listened to an individual song from them is probably 5-15 times.
They're a band I've only discovered, because I liked a song while I was high and it had the same name as one of their songs.
(The name is Ice Box, one from Omraion, but I was probably 14 back then and older than 20, when I looked up the song)

@actuallyautistic

RickiTarr, to random
@RickiTarr@beige.party avatar

If you have to do something you really don't want to do, how do you get yourself to do it?

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@RickiTarr I think about what stops me from doing it and then work on that.
So basically I try to make the task as easy as possible.
I've also realised that "getting yourself to do it" is the wrong mindset, it means working against yourself.
Most of us have been conditioned to be unproductive to some degree and believe in toxic ideas like laziness.
Knowing that being efficient and effective aren't hints at character flaws already helps to not "stand in your own way".

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@RickiTarr It also helps to look at the struggle to do something as an interesting, maybe even fun problem to solve.
Like it's an interesting challange.

undefined_variable, to actuallyautistic
@undefined_variable@mementomori.social avatar

I'm not sure if this is an autistic thing, but I'd bet it might be...

How many of you restart a game when you fail at something in it, even if you didn't have to. Or when you feel like you made a mistake or a wrong choice or whatnot. And I don't mean just loading the last convenient save, but starting anew all the way from the beginning. I do that, a lot, almost with every game (Yes, even casual ones, I restarted the original Life Is Strange I don't know how many times... You can imagine what a chore it was to get through XCOM, which is one of my favorite series). So instead of playing like 20 hours, I spend easily 80 hours going though the game. Provided that I ever actually finish the game.

Now, here's the kicker... Ready for it? Does that apply to other things in your life too? I just realized today, that for me it does. I get into something, something ungood happens, I drop it, get rid of my "save game" (that is, whatever I have acquired, tangible or intangible for said thing), then take it up again some time later, start from an empty table, other than the experience from the previous try, maybe get a bit further, something happens...

I've done it with trivial things, like learning a new skill I don't really need to survive. Today I realized I've been doing it with something fundamental about myself. And oh my that realization sucks. Unlike my game characters, I don't... I can't start a new game with the game world, or myself, in the same state every time, neatly rolled back in time. For me, a month, or a yeah, or a decade has passed. It is very ungood. I wanna restart and try again.

@actuallyautistic

hauchvonstaub,
@hauchvonstaub@nrw.social avatar

@undefined_variable @actuallyautistic The survival mode is buggy, if the values wouldn't sometimes go up, when you load the game, you would barely need to eat, drink or sleep, compared to other survival games.

I used to mainly play rogue likes for years, every game is a restart and there is never much progress to be lost.
I probably have 2000-3000 hours in Spelunky alone.

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