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AutisticSciencePerson (They/Them) Profile picture
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30 Jun, 4 tweets, 1 min read
Me: My ear is in acute pain and I think it's because of X/Y/Z.
Do you think it could be A?

My audiologist parent: No it wouldn't be A, you'd -know- if it was A.

Me: How would I know?

Parent: Well you'd be in a LOT of pain.

Me: Do you think I'm not?!

Parent: Oh.

Me: -_-;
Me: sitting in a very specific position for several hours because moving my head or breathing heavily elicits sharp pain through my ear and also into my jaw.

Do people not understand that having hyperacusis means being in pain all the time? This pain is worse meaning high pain.
I'm not taking questions or advice at this time.

Leaving this here for anyone who is confused by this thread -

autisticscienceperson.com/2021/03/29/aut…
To be fair, it was not in fact A (which is a good thing).

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More from @AutSciPerson

AutisticSciencePerson (They/Them) Profile picture
2 Jul
This thread is why I have very complicated feelings about talking about autism to kids as "a superpower."

I worry that when kids run up against something they can't do, they will feel bad and feel shame because they are not taught that disability is okay.

1/4
My generation growing up was always fed a "you can do anything you want/put your mind to!" mentality.

And that's just not true. That's not reality. I can't go for a walk and not be in pain. I can't go to loud concerts/conventions without managing my time and energy.

2/4
Like yes, my brain does work differently than neurotypical people. And I think that's fine to say. But also, there are some things I cannot do that NTs can, even if I wanted to & tried really hard.

And that's important to let kids know too.

3/4
Read 9 tweets
AutisticSciencePerson (They/Them) Profile picture
1 Jul
I'm just remembering the time when there was a really really loud sound at a seminar and everyone around me grabbed their ears and I thought to myself, "oh so it's okay to do that?"

And then realized I taught myself to not do that for every single day for my entire life.
If your patient is autistic and you're assessing their pain, treat their responses like you would someone with chronic pain.

I literally have a pain-with-walking disability and my hyperacusis pain is worse than that 95% of the time.
And it's not to say my pain with walking is actually completely fine or easy to cope with - it's not.

That's how bad my hyperacusis eardrum pain is. I went to work and walked for 1.5 years in pain and only the pandemic made me realize it was at least 6/10 pain daily.
Read 4 tweets
AutisticSciencePerson (They/Them) Profile picture
30 Jun
Update on this thread -
I did something I don't normally do,

I actually typed up all of this info to send to them (they had a review form I could type in that they sent me).

If you're wondering why autistic people often don't say anything, this response is why:

1/7
First, they said they try to be inclusive (that's the only mention about the deadname thing and misgendering at all, absolutely no response).

Second, they said I should remind the staff that I have hyperacusis when I go in next time! And tell the staff to lower their voices!
2/7
Now, in my 29 years of being alive, I can tell you that asking someone to lower their voice never goes well 100% of the time. Plus, the people who talk the loudest often have no idea they're doing it!

So yea, the fawning patient should remind them to lower their voice. 🙄
3/7
Read 9 tweets
AutisticSciencePerson (They/Them) Profile picture
28 Jun
"the autistic participants with high levels of sensory responsivity had higher heart rates following the unpleasant stimuli than the controls or other autistic participants did."

I can't believe they said this:
"They exposed all the participants to mildly unpleasant sensations"
Sorry, if they think (per the article) that the autistic kid is going into FIGHT-OR-FLIGHT MODE after touching them with a cloth or playing white noise (most painful for me) stimuli to them,

it's not "mildly unpleasant."

Autistic children shouldn't have to do this to prove pain
And we wonder how autism research is lacking ethics.

This is the "mild" version -
Putting autistic children in an MRI and playing stimuli to them to literally show that it causes anxiety, overwhelm (and very likely pain!) to autistic children.

Why not ASK THEM?
Read 5 tweets
AutisticSciencePerson (They/Them) Profile picture
28 Jun
Diagram to clarify that "Auditory Sensitivity" isn't just 1 thing.

The left 2 boxes are (anecdotally) very common in a lot of autistic people. Right boxes: Hyperacusis is likely prevalent in 50-60% of autistic adults & I'm not sure about misophonia prevalence, could be similar. 4 boxes with titles. Diagram Title: Common Auditory Sensitiv
cont. alt text: Unrelated to volume. Only bothered by other people who perform the sound, not when they make the sound. People chewing, People slurping, Pens clicking, People breathing, People lip smacking, People clearing throats, People typing on a keyboard. 1/2
Top right grey box: Hyperacusis. Physical eardrum pain/discomfort/too loud. Related to volume, complexity, and pitch of sound. Vacuums, Hair dryers, Toilets flushing, Talking loudly, Buses stopping, Dishes clinking, Doors slamming, People coughing. 2/2
Read 13 tweets
AutisticSciencePerson (They/Them) Profile picture
28 Jun
PSA:

Your Child Will Not Tell You That Loud Sounds Hurt Them if They Do.

If your kid is upset and/or cover their ears when:
toilet flushes, hair dryers going, vacuuming, lawnmowers, buses stopping, shouting,

They probably have hyperacusis and loud sounds are painful!

1/8
Kids aren't going to say "that sound hurts my ears" because it's the equivalent of an NT telling another NT that "the sky is blue."

It is assumed that everyone's brains work the same. We grow up with this assumption. It is hard to know how to describe it when it's different.
2/8
And from a very young age everyone else Seems Fine with it and there is pressure to Be Okay so the only way I had was "that's too loud" and I got told "No" and when you get told "No" enough,

you know that people aren't going to care, so you stop saying it.

3/8
Read 10 tweets

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