matty,
@matty@blahaj.zone avatar

Can we not drag self-diagnose Autistic under the bus? I don't get why some Autistic hates it as to get diagnose as Autistic, you had to assume you are (meaning you had to self-diagnose yourself) and it is a lengthy process to officially get it!

Also stop projecting the hate you got from neurotypicals to them, you are not helping yourself either! Sorry for this mini-rant, I'm just fed up of people policing others and as well as mocking them

@actuallyautistic

18+ Dr_Obvious,
@Dr_Obvious@chaos.social avatar

@matty @actuallyautistic
That looks like typical reddit autism group stuff.

Not only is that subreddit toxic. Moreoften there is no discussion taking place.

18+ Susan60,
@Susan60@aus.social avatar

@Dr_Obvious @matty @actuallyautistic
I’ve never seen anything like that here & am quite shocked by the hatefulness of it. Just goes to show that we’re not all nice people.

FinalOverdrive,

@matty I don't know. I think there is actually a point there. I'm not going to throw them under the bus, but I see it more as a demonstration of the meaninglessness of the label since it seems to be in a continuity of other behaviors. I think there are distinctive things that have to be present, such as sensory issues and a genuine inability to interact with others, and of being tormented directly for it etc. I'm not saying they aren't autistic, just that I don't know. It comes with both good and bad. And the bad has to be present. Autism is equal parts joy and misery, just like queerness is. @actuallyautistic

qlp,
@qlp@linh.social avatar

@matty That is the reason why I have been so freaking hesistant utter that I think I am autistic with people who either sussed it out or when I try to explain (what I feel is) my broken self to people... because I haven't been officially diagnosed as such.

Also, I've been afraid of using #ActuallyAutistic and having someone attack me for using it when I'm not officially diagnosed. 😓

@actuallyautistic

melindrea,

@qlp @matty Gatekeeping sucks. And anyone who thinks that they've got a right to say who is #ActuallyAutistic and who isn't (especially based on the criteria of diagnosis) suck.

You're valid, and you're welcome in the group and on the hashtag.

vanquesse,

@matty @actuallyautistic I struggle to see why anyone would apply a highly stigmatized label ( and one that holds no privilege, no less!) to themselves without serious thought and research.

ugh.

marshant,
@marshant@mastodon.scot avatar

@vanquesse @actuallyautistic @matty there seems to be this bizarre idea that the label is a social 'get out of jail free' card and why wouldn't everyone want that? I assume it's the same folk who think ADHD is merely an excuse for laziness.

foo,

@matty @actuallyautistic I have more than 3 year wait for an assessment. What the heck am I supposed to do in the meantime? I label myself probablyASD. By the time I see the assessor, the list of my "idiosyncrasies" is gonna be pretty long

servelan,
@servelan@newsie.social avatar

@matty @actuallyautistic There is nothing invalid whatsoever about self-diagnosis. We are the most knowledgeable person in the room about our individual selves...and there are a lot of self-diag tools out there. Self-diag is the start of the process for many; for some, that's all that's needed.

However, if you do need accommodation at work or school, a formal diagnosis gets you something official.

Phoenixrisen82,

@servelan @matty @actuallyautistic where I live in Canada there is no publicly funded program for adults to be formally diagnosed with autism. You want to see someone to get a diagnosis for anything else (adhd, anxiety, depression etc) it’s no problem, but if you are over 18 and want an autism assessment it will be about $3000.00 out of pocket. I can’t afford that so self-diagnosis is what I get right now

PeteLittle1970,

@matty @actuallyautistic I 100% stand behind self diagnosis. I am officially diagnosed now, but for a long time I self diagnosed in private, I'd never tell anyone in case of ridicule.

When I got my diagnosis it didn't really change much except I was open to telling people. I came to the conclusion if self dx was more accepted then the two, self and official diagnoses would have the same end result.

therefore the official dx isn't worth the paper it's printed on!

tausierra,

@PeteLittle1970 @matty @actuallyautistic 100% agree. I would only let myself be "99% sure" until official diagnosis, partly out of fear of those people who are against self diagnosis. (Honestly the people who didn't "need" me to have a diagnosis were probably not causing me issues anyway.)

CatHat, (edited )
@CatHat@mstdn.party avatar

@matty @actuallyautistic self dx IS a diagnosis.

A voluntary that has different legal considerations from a formal one

Formal diagnosis is often a sword of Damocles or a gateway to losing your human rights.
Especially when it was done to you in childhood.

This is a two way street. Dont assume that your words are harmless. You shouldn't project your imposter syndrome onto the people who dont have it.

CatHat, (edited )
@CatHat@mstdn.party avatar

@matty @actuallyautistic you need to take a step back and think about what assumptions you are making about the majority of other autistic people.

Always remember that being marginalized IS traumatic.
Being in the closet isnt a privilege but being OUTED is frequently a survival risk.

Formal diagnosis, especially as a child is a HUGE problem for a lot of people. Its anything but a privilege.

CatHat,
@CatHat@mstdn.party avatar

@matty @actuallyautistic jn terms of "is this autism butterfly"

Its an autistic butterfly.
EVERYTHING is autism because autism is not separate from who we are.

Asking the question is self exploration.

Everyone should be asking themselves questions about how their own mind works, and the same questions should be asked regularly to see if the answer has changed.

CatHat,
@CatHat@mstdn.party avatar

@matty @actuallyautistic some aspects of the gap between childhood dx and a dx you acquired with your consent are very real.

Self DX and voluntary formal adult dx both have a different personal impact than dx imposed without consent
Unpacking your own internalized ableism is something i can sympathise with but don't have the spoons to deal with when it includes making assumptions about the experience and attitudes of individuals labled in childhood.

CatHat, (edited )
@CatHat@mstdn.party avatar

@matty @actuallyautistic all of this is said with the understanding that self dx is a diagnosis.

Regardless of how someone figured out they are autistic.

A diagnosis of autism is a diagnosis
Self dx is absolutely a valid diagnosis

Any diagnosis of autism is a description of something people are born being. It doesn't start being true because its diagnosed. Its a description of fact.

logrh,

@matty @actuallyautistic

I'd self diagnosed a lot, using DSM.

The introduction is capital, no problem, no trouble.
You can always find yourself in symptoms and description. Does it really make your life difficult.

I'm on the schizophrenic side of the force with painstakingly diagnosed ADHD . A lot of overlap with autism, but not the core issue.

It takes time to process and fully understand where we are.
It's kind of hyped to be different, reality is that you'll face discrimation and fear.

sentient_water,

@matty @actuallyautistic I have lived, worked & dated mental health professionals. I've spent a lot of time around them & not one in all those years knew until I told them.

Self DX is desperately needed. Oh if you are feeling insecure I can help build your confidence in your self dx as I offer free "unofficial" autism diagnoses. I've already done it for people on Twitter (later confirmed) a friend who works for the NHS (later confirmed). I've also done it for a man I'd never met but heard about him & saw photos.

Hit me up if you want to deepen your certainty with a set of simple questions.

Nobody wants a delayed developmental condition. Some people may be wrong but big whoop . Many more have found an identity & a community & a culture & friends.

matty,
@matty@blahaj.zone avatar

@sentient_water
I have been diagnosed as a kid but I would boost it and hopefully other potentially austistics that follow @actuallyautistic will see it as well!

cgbrooding,

@sentient_water @matty @actuallyautistic

My imposter syndrome is very real and if anything, getting worse

Me to myself:

  • you didn't struggle enough when you were younger
  • you're fine with people (ignoring how exhausted they make me)
  • you were such a go-getter/high-achiever (via umpteen shutdowns/burnouts)
  • you're not Autistic, just anxious and/or depressed
  • it's your PMDD, not Autism
  • it's burnout, not Autism
  • it's trauma, not Autism

Then I do a stack of ASD questionnaires, score highly (despite questioning every question and wanting extra reply options), decide I maybe AM Autistic (sub-clinically because I'm way off DSM-5)
Rinse
Repeat

Send help!
🤦‍♀️🤓😂💜

sentient_water,

@cgbrooding @matty @actuallyautistic Nearly every one of those has or currently applies to me & many more people who I know. You can dm me if you want some semblance of privacy but they're simple questions. I'm working with an autistic geneticist & a group of amazing scientists but we're looking at using certain physical statistical probabilities that are common. I ask a few questions you check & get pretty much answer yes or no. It's got a good hit rate but I am not a diagnostician & can't give dxs but I can give you some language & stats that increase your likelihood of seeking a professional dx if you want one.

Claire,

@sentient_water @cgbrooding @matty @actuallyautistic Can you expand? Are you saying physical traits? (My son sees a genetecist and she picks what tests to run based on his fingernails and gums and stuff...I was shocked but of course it makes sense.)

sentient_water,

@Claire @cgbrooding @matty @actuallyautistic As far as I know there's no genetic testing in this working group. So yes it can be things like mobility in teeth & joints caused by connective tissue conditions which are more common among us. Things like gangly, floppy gait can be a good indicator. Like I say it's more a compliment to the person's own work, deep dives, talking to others & maybe seeking a certificate from a dr if desired.

It's more looking at physical manifestation of common comorbid conditions of autism & give a conservative estimation for each in percentage.

Sounds like a good doctor if they're checking those physical aspects. It's often overlooked.

cgbrooding,

@sentient_water @matty @actuallyautistic

Thanks for this

I'd be curious to know yes, but I'm not sure how to DM on mast'

JoBlakely,
@JoBlakely@mastodon.social avatar

@cgbrooding

please note they are not truly private and the interface should tell you that. Be careful what you share.

@sentient_water @matty @actuallyautistic

sentient_water,

@JoBlakely @cgbrooding @matty @actuallyautistic Yes that's why I said a semblance of privacy they're not invasive or personal questions really. They can be deleted but I understand they're not encrypted. I found I can only DM through Tusky. I need to think of a better way tbh.

sentient_water,

@cgbrooding @matty @actuallyautistic Tusky or some other version of mastodon I guess. I'll have a think of more private way to message.

sentient_water,

@cgbrooding @matty @actuallyautistic I've sent you a short DM.

cgbrooding,

@sentient_water @matty @actuallyautistic

Can’t see your message in my DMs - maybe a typo in my handle?

I did see the DM from another mast’er replying to your toot so I’m guessing my DMs ‘work’... 🤷‍♀️

PipOfHampshire,

@cgbrooding @sentient_water @matty @actuallyautistic

If you go to a persons profile, you’ll see a message option in the same road as follow, notify etc.

It initially confused me as it looks like a single person Toot.

sentient_water,

@PipOfHampshire @cgbrooding @matty @actuallyautistic Thanks. I still can't find it except on Tusky.

PipOfHampshire,

@sentient_water @cgbrooding @matty @actuallyautistic

I see what you mean. The alternative is, you write a Toot and just include the person and change the privacy setting to mentioned people only. There’s an explanation here but let me know if it doesn’t help! https://mstdn.social/@feditips/108199555394449509

sentient_water,

@PipOfHampshire @cgbrooding @matty @actuallyautistic very useful thanks. I really need to take more time to get to know the platform better but you're all so much more interesting.

PipOfHampshire,

@sentient_water @cgbrooding @matty @actuallyautistic I only worked out DM’s earlier this week and I’ve been here since late 2022. Often your server admin has great posts with useful info.

ratcatcher,

@PipOfHampshire

There is a "gotcha" with PMs, though: If you tag someone, they will also get the message. An easy, and potentially awkward, mistake to make.

@sentient_water @cgbrooding @matty @actuallyautistic

ScottSoCal,
@ScottSoCal@computerfairi.es avatar

@ratcatcher @PipOfHampshire @sentient_water @cgbrooding @matty @actuallyautistic

One of those "Oh, wait, did I say that out loud?" moments.

PipOfHampshire,
nellie_m,

@PipOfHampshire @cgbrooding @sentient_water @matty @actuallyautistic

I think there’s an option in the settings that requires you to be a follower before you can send a DM. If that’s activated, I think that option is hidden for non-followers. Could be the reason why you don’t see it?

cgbrooding,

@nellie_m @PipOfHampshire @sentient_water @matty @actuallyautistic

Weird because @sentient_water and I follow each other so it should show already
🤷‍♀️

sentient_water,

@cgbrooding @nellie_m @PipOfHampshire @matty @actuallyautistic Hi Clare noticed you were on an Australian instance & was wondering if you knew the work of Dr Wenn Lawson who lives there. They're an autistic Dr of Psychology.

cgbrooding,

@sentient_water @nellie_m @PipOfHampshire @matty @actuallyautistic

Just back now from my instance being on the fritz

The name does ring a bell, I'll have a look-see, tnx
💜

wakame,

@cgbrooding @sentient_water @matty @actuallyautistic

"despite questioning every question and wanting extra reply options"

This opinion is IMHO a big indicator.
Sometimes I suspect that this is what the test is actually testing. :blobcatgiggle:​

PipOfHampshire,

@wakame @cgbrooding @sentient_water @matty @actuallyautistic

Yes, the autistic trait of dismantling tests created to diagnose autism 😁

wakame,

@PipOfHampshire @cgbrooding @sentient_water @matty @actuallyautistic

" I would rather go to the theater than to a museum."

In what kind of situation? Always? Most of the time?

Independent of what is currently playing in the theater and the exhibition in the museum?

This question is almost dadaist in nature.

"If you were a toroid banana, how would you feel about Impressionism?"

PipOfHampshire,

@wakame @cgbrooding @sentient_water @matty @actuallyautistic

Interestingly I wasn’t asked that one. Though I would have made the same complaint. What museum? What show?

wakame,

@PipOfHampshire @cgbrooding @sentient_water @matty @actuallyautistic

Baron-Cohen's AQ30 in full effect :blobcatgiggle:​

cgbrooding,
zeolith,
@zeolith@autistics.life avatar

@wakame @PipOfHampshire @cgbrooding @sentient_water @matty @actuallyautistic

It's funny /s, it's almost like you have to understand the subtext in the question in order to answer it "correctly"...

But guess what? Autistic people are not really good with everything subtext...

PipOfHampshire,

@zeolith @wakame @cgbrooding @sentient_water @matty @actuallyautistic

Oh, I get subtext in some contexts. My report says I ‘wanted the assessors attention during the break’, when what I actuallysaid was, “but this isn’t really a break is it? You’re still assessing.”

zeolith,
@zeolith@autistics.life avatar

@PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic

I do get it sometimes too... But that question is really depending on context. Is the museum the Louvre on the 14th of July Vs the last screening of an unknown beloved movie on a Thursday morning? Then movie it is.

And of course they were still assessing. It's not like they won't write anything significant enough if they notice it... Your question was valid.

wakame,

@zeolith @PipOfHampshire @cgbrooding @sentient_water @matty @actuallyautistic

I mean, sure. I can mentally change the question to "do you in general prefer cultural activities with more human interaction, more talking, louder?"

Why don't they write that down then? :blobcatsweat:​

PipOfHampshire,

@wakame @zeolith @cgbrooding @sentient_water @matty @actuallyautistic

I trained as a healthcare professional and I honestly think so of these questionnaire are genuinely just badly designed. I’ve seen others for mental health and they much clearer and better structured.

wakame,
CatHat,
@CatHat@mstdn.party avatar

@zeolith @wakame @PipOfHampshire @cgbrooding @sentient_water @matty @actuallyautistic we are MUCH better at questioning it.

Thats an advantage for questioning unconscious bias.
I haven't taken any of the online tests but i remember being asked open ended questions when assessed.
I definitely didn't give the "proper" answer according to the person doing the test
It was phrased as me probably getting the right answer while also providing a lot of irrelevant thoughts.

CatHat,
@CatHat@mstdn.party avatar

@PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic never fails!

Also ask other autistic people if you seem autistic
The answer is almost always surprise because DUH.
We self recognise

zeolith,
@zeolith@autistics.life avatar

@CatHat @PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic

"I thought you already knew, it seemed so obvious..."
Well, no. Never been as much as hinted at or suggested. Gifted kid, yes. A lot. But autistic? Nope.

To be clear, I'm genuinely grateful to have the people who said that to me in my life, because that's thanks to them that I started to understand myself better.

CatHat,
@CatHat@mstdn.party avatar

@zeolith @PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic what im getting at is it doesn't occur to people that you don't know.

Its where the double empathy problem can bite autistic people in the butt when talking to one another. At a level of instinct WE KNOW the other person thinks properly. It isn't questioned whether that knowledge is shared because the LIKE ME is instinctively shared

zeolith,
@zeolith@autistics.life avatar

@CatHat @PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic

Oh, right, okay. Thanks for clarifying. It's not really instinctive for me, but I guess it is due to decades of trying to think like a NT?

It's more over the course of a long time, if there's something that clicks or not. But it's not instant at all.

CatHat,
@CatHat@mstdn.party avatar

@zeolith @PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic im going to guess that it might have to do with lack of self confidence of your own identity as autistic?
It isn't instantaneous no.
But it doesn't require much time at all. Autisic people tend to be good at pattern recognition and one of the patterns we pick up best is "this person makes sense"

CatHat,
@CatHat@mstdn.party avatar

@zeolith @PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic we all second guess ourselves on far too much. And we probably give greater weight to things said by other autistic people. This is one reason find that it eats spoons to talk about mutual miscommunication between myself and adult dx. Self dx and voluntary formal adult dx doesn't make much difference. (I don't know much about involuntary adult dx)

matthewtoad43,

@CatHat @zeolith @PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic I second guess myself to the 27th degree, although I'd always put that down to anxiety. I guess it's both autism and anxiety.

CatHat,
@CatHat@mstdn.party avatar

@matthewtoad43 @zeolith @PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic anxiety the way autistic people do it?
Is it autism...

does it include thinking about something? If so then being autistic is relevant.

matthewtoad43,

@CatHat @zeolith @PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic Anxiety tangled up with special interests tangled up with identity issues / mental health worries gets nasty.

CatHat,
@CatHat@mstdn.party avatar
cgbrooding,
zeolith,
@zeolith@autistics.life avatar

@CatHat @PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic

Oh. If it's "This person makes sense", then yes. But I very often second guess myself and look for "tangible" things, if that makes sense?

CatHat,
@CatHat@mstdn.party avatar

@zeolith @PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic thats actually a lot of the miscommunication between childhood dx and adult dx i think.

Feeling like an imposter about being autistic doesn't occur to me without having to think about it.
Ive rarely met anyone who speculates that doesn't vibe as autistic

CatHat,
@CatHat@mstdn.party avatar

@zeolith @PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic i don't question that people are aware of being autistic because i pretty much know it.
Theory of Autistic mind. "This person thinks properly" which really trips me up because HOW you think may be similar but WHAT YOU KNOW can be totally different

CatHat,
@CatHat@mstdn.party avatar

@zeolith @PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic i think its happened about 4 times at most. All include very noticeably being ND in a way i do not experience so i really don't think that my vibes are automatically accurate.
It would take someone who experiences what they do to be a qualified judge i think

jens,
@jens@social.finkhaeuser.de avatar

@PipOfHampshire @wakame @cgbrooding @sentient_water @matty @actuallyautistic When I spoke to a therapist about how I was doing that, she replied that, more than the results themselves (I scored high enough) tells her I might be.

cgbrooding,

@jens @PipOfHampshire @wakame @sentient_water @matty @actuallyautistic

This is me (but not had a therapist tell me so)
💜

sentient_water,

@PipOfHampshire @wakame @cgbrooding @matty @actuallyautistic The end of every assessment should be Criticisms of this assessment. If it's full add 40 points.

Claire,

@cgbrooding @sentient_water @matty @actuallyautistic

You don't have to prove your Autism to anyone! And if someone challenges your self-dx, it's fair to just file that as a them problem. Claiming your Autism is for you to be able to take your mask off and live authentically.

For me at least, seeing my Autism helped me find strategies that actually helped with my burnout, figure out my regulation needs and boundaries that would help me avoid meltdown.

🧡 ✊ Solidarity.

sentient_water,

@Claire @cgbrooding @matty @actuallyautistic Absolutely zero need to prove. It's always about better understanding of the self.

ReimanSaara,

@cgbrooding @sentient_water @matty @actuallyautistic

Here's a free and reliable test: do you feel at home among people? Do you feel like you get what we are talking about or are we a bunch of weirdos to you?

If yes & yes, congrats on autism & welcome to whanau!

I have very difficult time imagining that a Deeply Neurotypical person of any variety would feel at home among us (any more than we can be truly comfortable while surrounded by deeply neurotypical people).

matthewtoad43,

@ReimanSaara @cgbrooding @sentient_water @matty @actuallyautistic Well that depends. Everyone's autism is different and some autistic people, who I care for very much, can nonetheless be draining in larger doses. Often because of e.g. insufficiently close special interests etc.

ReimanSaara,

@matthewtoad43 @cgbrooding @sentient_water @matty @actuallyautistic

To clarify: I'm not saying that all autistic people are equally likeable. Some can definitely be draining. We are large and diverse group.

I meant the #ActuallyAutistic community in general, as in "is the stuff we discuss relevant to you?" "Can you relate with what we are talking about?" "Do some of our lifehacks work for you while neurotypical advice often does not?"

autisticbookclub,

@ReimanSaara @matthewtoad43 @cgbrooding @sentient_water @matty @actuallyautistic Tbh I agree. The same way I feel wildly uncomfortable in a group of neurotypicals small-talking about what they have 'planned for the weekend' is the way a neurotypical would feel in a group of Autistics in full flow, sharing our joys and passions, full of excitement and intensity!

I think it's an excellent test!

cgbrooding,

@autisticbookclub @ReimanSaara @matthewtoad43 @sentient_water @matty @actuallyautistic

That's a really good comparison actually

These conversations/threads are great for me, despite being 'deep' and about complex things

Small talk about weekend plans is ugh

I think I'm answering the test, aren't I?
😂😂💜

autisticbookclub,
LeatherCubAndrew,

@ReimanSaara absolutely! Some people in the community actually make me want to disengage from it, but others I completely relate to.

I think some are the for a lack of a better term "toxic vegans"... the ones who go out of their way just to attack nonvegans. I was actually harassed by two such people last week on a post that I marked with a content warning for something that would completely go against vegan beliefs. I put it in a content warning because I know that some people are sensitive to certain things, but that wasn't sufficient. One of such people proudly posted a "baited" graphic in response to my expression of being upset that they went out of their way to attack me and the photo I put up of myself.... while at the same time claiming the need for safe spaces on a separate post. Seemed awfully hypocritical in my opinion.

We may even have conflicting interests like what I highlighted and when interests get attacked then we are probably more prone to shutdown.

@matthewtoad43 @cgbrooding @sentient_water @matty @actuallyautistic

LeatherCubAndrew,

@ReimanSaara such people might end up playing the DARVO game like we endured when we were growing up with our bullies for those of us who dealt with that.

Side note: I was introduced to a nonvegan neurodivergent person on discord I believe last year and the way this individual communicated with me, I almost thought this person was going to take their own life after mentioning having experienced similar harassment from a neurodivergent discord that was primarily populated by "toxic vegans" as described above.

@matthewtoad43 @cgbrooding @sentient_water @matty @actuallyautistic

dpnash,

@LeatherCubAndrew @ReimanSaara @matthewtoad43 @cgbrooding @sentient_water @matty @actuallyautistic Yep, saw that, looks like a nest of trolls there (despite people claiming to be ND there was at least one ableist anti-#ActuallyAutistic meme in that thread). Blocked the whole server and recommend everyone else do the same.

infmin,

@dpnash @LeatherCubAndrew @ReimanSaara @matthewtoad43 @cgbrooding @sentient_water @matty @actuallyautistic yup, I also saw that. Most vegans (I am one) wouldn’t be confronting you like that even if they’re activists. I also noticed that their instance ended in “cel” (presume derived from incel) which instantly set off alarm bells, enough to have given me the “leave social media heebiejeebies“ at the time. Trolls aren’t averse to lying about themselves in order to troll.

matthewtoad43,

@infmin @dpnash @LeatherCubAndrew @ReimanSaara @cgbrooding @sentient_water @matty @actuallyautistic Agreed. I've experienced such people on the other site. While they are mostly right in the long run, that's no excuse for victimisation. And becoming a vegan as an autistic with a whole family full of allergy problems is somewhat more difficult than as most able-bodied neurotypicals. So I do what I can.

ReimanSaara,

@LeatherCubAndrew @matthewtoad43 @cgbrooding @sentient_water @matty @actuallyautistic

I'm sorry to hear that this happened to you.

Autistic people can definitely be toxic, for a bazillion reasons. Autism does not make anyone a saint, or even a decent person- in fact, thinking so is in its own way just as othering as portraying autism as source of every flaw one might have.

We are just a bunch of human beings.

sentient_water,

@ReimanSaara @LeatherCubAndrew @matthewtoad43 @cgbrooding @matty @actuallyautistic Good motto for an autistic research community "We are just a bunch of human beings".

tausierra,

@ReimanSaara @cgbrooding @sentient_water @matty @actuallyautistic definitely know what you mean, but for me, masking has made it difficult to feel at home among any people that I don't already know. So many things I'm doing because I've learnt I "should". I'm definitely working on it though.

ReimanSaara,

@tausierra @cgbrooding @sentient_water @matty @actuallyautistic

I think what you describe is a feeling well understood and shared among autistic people. 😀

Digging up our real selves from under layers of mask, even (re)connecting with our true feelings, needs and even trusting our own senses after all the "shoulds" is hard work and a long project...still, finding yourself and finding that this person is not "wrong" but likeable and worth all the goodness in the world is important.

cgbrooding,

@ReimanSaara @sentient_water @matty @actuallyautistic

Love your test 💜😂

There’s absolutely no doubt I’m ND and I’ve loved the Autistic community here and on other SM

I think part of where my imposter syndrome trips me up is when I compare myself to the pathological dx criteria (a la DSM-5) - i.e I’m not THAT thrown by social/communication situations or by eye contact etc.

Or when I think I’m not THAT different (not sure I’d ever be described as ‘weird’, but have been told ‘that’s such a funny xyz thing/habit’ and ‘you’re too sensitive’)

Suppose it would help to remember that Autism spans lots of areas/skills and spans a wide spectrum of support needs and challenges so there’s likely a spot where I fit within that
(and where I don’t want to encroach on others’ space)

(But I do love it here!) 💜💜

cgbrooding,

@ReimanSaara @sentient_water @matty @actuallyautistic

P.S thank goodness for higher character limits 🤣🤣💜

sentient_water,

@ReimanSaara @cgbrooding @matty @actuallyautistic Absolutely! The most stable, supportive & long lasting friendships I've had have been autistic (or weird NTs). That feeling of belonging. That sense that directness & honesty aren't some cardinal sin. It feels like home.

cgbrooding,

@sentient_water @ReimanSaara @matty @actuallyautistic

This!

I rate directness and honest tops, seriously
🤘

servelan,
@servelan@newsie.social avatar

@cgbrooding @sentient_water @matty @actuallyautistic I don't think most questionnaires ask about sensory processing disorder - I could be wrong, but that's how I figured out I'm #ActuallyAutistic (the list of symptoms left it off). There are colors I hate and foods I won't eat because of texture, as well as clothing textures, and the counselor who helped me with my diagnosis said she'd never run into anybody who didn't have SPD.

Phoenixrisen82,

@servelan @cgbrooding @sentient_water @matty @actuallyautistic I definitely have SPD especially with sounds and touch. If it’s too loud or there’s just too much ambient noise I get really frustrated and overstimulated. I need white noise to sleep. Some clothing I can’t wear and sometimes I have to take jewellery off halfway through my day because it is nothing me.

jenandra,

@Phoenixrisen82 @servelan @cgbrooding @sentient_water @matty @actuallyautistic
I haven't worn jewellery in decades. I should wear a teeth guard at night, but try as I might, I can't get used to even the softest material. Wearing anything wool drove me crazy when I was a kid - once I could decide for myself, I never wore wool again. Clothing tags, seams, a crease in my bed sheet ... UGH. And then there's the misophonia, uncontrollable aggression when I hear someone take a bite of an apple ...

And still, maybe I'm not autistic, just overly sensitive? I really would like to get a diagnosis, but the waiting times are terrible right now, and that's not even taking into account my ED that makes it hard to pursue anything.

servelan,
@servelan@newsie.social avatar

@jenandra @Phoenixrisen82 @cgbrooding @sentient_water @matty @actuallyautistic There are online diagnostic tests, not formal ones, mind, but enough to give you some idea...that's probably a good step seeing as how counselors are scarce as hen's teeth these days. And you could have SPD as a stand-alone thing - I'm no expert on it and can only talk about it anecdotally related to my own #autism - something you could check out as well.

jenandra,

@servelan @Phoenixrisen82 @cgbrooding @sentient_water @matty @actuallyautistic
I've done quite a few online tests, but I've only recently realized that coping and masking is so ingrained into me that my replies are masked as well. I'm currently trying to untangle that.
I am diagnosed with ADHD, which often enough comes with sensory issues as well, so there's that. My first ND "diagnosis" was HSP, for that matter, back when afab folks weren't diagnosed with autism yet :-)

untemperedsteel,

@jenandra @servelan @Phoenixrisen82 @cgbrooding @sentient_water @matty @actuallyautistic

I some times feel a lot of dis-quietness or anxiety if I am doing nothing, which pairs badly with depressive apathy making me want to do nothing also. Also I have no idea if I mask my ND attributes well or not; I am sure I have "improved" in my masking since my childhood but I don't know of online tests that could detect it.

sentient_water,

@servelan @cgbrooding @matty @actuallyautistic It's almost comical how these are ignored during diagnosis. It fundamentally affects my behaviour in terms of where I go, what I can do. Our "erratic" behaviour is often just needing to escape from overwhelming sensory input. I had to diagnose myself with SPD because it was a very obvious co-occuring condition. I have audio sensitivity which means I can't hear someone talk if a tap is running. I've not met one autistic person who doesn't have some sensory issues.

mavu,
@mavu@mastodon.social avatar

@cgbrooding @sentient_water @matty @actuallyautistic please pay rent if you live in my head.

cgbrooding,
flowerpot,
@flowerpot@mas.to avatar

@sentient_water @matty @actuallyautistic I'd love to know these questions. Are they from a webpage & if so, can you provide a link? If not convenient, no worries. I continue to read about autism by Autistics. It's from these sources that I feel most comfortable in saying that I am autistic.

sentient_water,

@flowerpot @matty @actuallyautistic they're not on a Web page as yet as I'm aiming to have them peer reviewed before publication & I haven't exactly formalised the process.

I can give you a seemingly silly sample question.

Do you have an astigmatism, or a slightly wonky eye? It may be minor & easily corrected with glasses but it's there. Should have made a poll.

flowerpot,
@flowerpot@mas.to avatar

@sentient_water @matty @actuallyautistic Yes. Wow, that's interesting there is a correlation between autism and astigmatism.

nellie_m,

@flowerpot @sentient_water @matty @actuallyautistic

„In Europe and Asia, astigmatism affects between 30% and 60% of adults.[4]“ Wikipedia

https://en.m.wikipedia.org/wiki/Astigmatism

flowerpot,
@flowerpot@mas.to avatar

@nellie_m @sentient_water @matty @actuallyautistic That's a lot of people with astigmatism. I wouldn't mind 30-60% of people being autistic but it seems more than what I've read others estimate. I have heard of a correlation between toe walking and vision. I would be interested in reading research that correlates autism with astigmatism.

setmeravelles,

@sentient_water @matty @actuallyautistic Oooh, I could use a follow up to my self diagnosis since the person who assessed me told me it was just severe anxiety because I was able to have a conversation with her and didn’t act like Rainman…

benjamincox,
@benjamincox@writing.exchange avatar

@setmeravelles @sentient_water @matty @actuallyautistic I’d hope that as we become more aware of autism, they’d get better at understanding it. Feels like frontier medicine at the moment for some. 🫤

setmeravelles,

@benjamincox @sentient_water @matty @actuallyautistic It was a recent grad too. She used the tests they used for children in the 80’s on me and didn’t bother waiting to get the questionnaire back from my friend. I wasn’t Rainman so I just have severe anxiety…I had an autistic meltdown then and there but “severe anxiety” 🤷🏻

benjamincox,
@benjamincox@writing.exchange avatar

@setmeravelles @sentient_water @matty @actuallyautistic The other thing with increasing awareness is that uninformed quacks like them will hopefully get their marching orders. 😠

sentient_water,

@setmeravelles @matty @actuallyautistic Sometimes I despair at the prevalence of ignorance Pablo. Happy to answer questions you may have. Armed with indisputable data it's harder for them to ignore (but they often do anyway). I can often give citations for certain understanding using texts more familiar to NTs (basically stuff by NTs). Get in touch anytime.

foolishowl,
@foolishowl@social.coop avatar

@sentient_water @matty @actuallyautistic My partner convinced me to take seriously the suggestion I might be autistic. I thought it would be worth consulting a professional for a diagnosis. I quickly found out that most of the professionals who would do diagnoses, worked only with children, and worse, were all ABA specialists, so untrustworthy.

But I have enough experience with medical and mental health professionals to know that they will often simply affirm a self-diagnosis anyway.

JoBlakely,
@JoBlakely@mastodon.social avatar

@sentient_water @matty @actuallyautistic

SAME.
Both my cousins are married to clinical psychologists, one of whom is a specialist in Autism Assessment in schools. I've known them both almost 40 years. While they were at university! Never knew I was autistic, when I self dx'd & told her...she said 'we are all a little autistic'. FWIW, I am pretty sure at least one often non-speaking daughter, along with maybe my cousin, her husband is undiagnosed autistic. And our grandmother.

🙄 experts

JoBlakely,
@JoBlakely@mastodon.social avatar

@sentient_water @matty @actuallyautistic

what I think annoys me the most though is her complete lack of curiosity to fill in what she may have missed so she could assess better. Maybe not miss girls.

She had zero interest. That's what bothers me. The unwillingness to learn from an #actuallyautistic #autisticadult and an elder at that. These are not people interest in the healing or health of autistics or the understanding of autism. AT ALL.

Sometimes it looks so benign, but it isn't.

autisticbookclub,

@JoBlakely @sentient_water @matty @actuallyautistic I just replied to someone about that...

When I'm talking in Autistic spaces we give and receive respect to each other, I am always wanting to listen because I learn so much from my fellow Autists.

BUT, when I'm in an NT space, it's almost as if I am invalid and invisible.

Nothing I say carries weight, especially if it's about Autism!

It's so insulting and ridiculous!

JoBlakely,
@JoBlakely@mastodon.social avatar

@autisticbookclub
exactly!!!! I learn so much from other autistics.

@sentient_water @matty @actuallyautistic

Tooden,
@Tooden@aus.social avatar

@JoBlakely Yes. That lack of curiosity, or any interest in expanding their clinical knowledge, is deeply upsetting. It's complacent arrogance. I have had GPs actually research hypothyroidism, to expand their knowledge of my condition. Why is it so bloody hard for so-called specialists to admit that their understanding of something that could affect one quarter of the world's population might just be enhanced by 'asking' autistic adults what to look for?🙁@sentient_water @matty @actuallyautistic

yourautisticlife,
Dr_Obvious,
@Dr_Obvious@chaos.social avatar

@sentient_water @matty @actuallyautistic
Let me know, when you are going to publish your questions. I am curious.

I have a friend training to become a therapist. She saw signs in my son, but never was suspicous about me. But she stated that these kind of diagnosis are challenging for her.

Susan60,
@Susan60@aus.social avatar

@Dr_Obvious @sentient_water @matty @actuallyautistic

I think the field has been changing so quickly. I keep feeling resentful of one former therapist (and I do still have some very good reasons) for not recognising autism & ADHD in me. But the traits that he commented on 20 years ago weren’t recognised as traits then.

jade,

@matty @actuallyautistic This ticks me off so damn much. The same goes for a lot of mental health issues and I don't get why people gatekeep when they know themselves how hurtful it is to not receive the help they need, because people tell them that they certainly do not have "that" and to get some label to stick onto themselves before being allowed to participate. And that pecking order that's so often enforced...​:blobcatangry:​

Also, that image is atrocious. My mind just wanted to rearrange everything just so it wouldn't keep on assaulting my eyes. Who the heck made this?

Micheleyee,

@matty @actuallyautistic

This feels like an image created by an NT tbh.

ashtardeza,
@ashtardeza@mas.to avatar

@matty @actuallyautistic

Oh ugh... that picture is just plain horrific. 😕

matty,
@matty@blahaj.zone avatar

@ashtardeza
Yeahh, I thought it was best to least add an Content Warning for this. But damn... 😬

@actuallyautistic

ashtardeza,
@ashtardeza@mas.to avatar

@matty @actuallyautistic

To be fair: I also get annoyed when people say "I'm a bit autistic" to mean they're a stickler for details or like things being "just right".

I try to see that as an opportunity for education though. This on the other hand, is straight-up gatekeeping and ableism.

benjamincox,
@benjamincox@writing.exchange avatar

@matty @actuallyautistic As someone who has only recently identified as autistic, I'm terrified about proclaiming myself as such. I hate the idea that I'm stepping on other people's toes and this is why I've started the process towards getting a proper assessment. "Self diagnosed" sounds so dismissive and frankly, I wouldn't trust myself to diagnose my symptoms correctly anyway.

matty,
@matty@blahaj.zone avatar

@benjamincox Don't feel like you're just stepping on people's toes. People who get angry about this are either don't understand Autism or are projecting the hate they got and lash out to others.

@actuallyautistic

FrankBautist,

@matty @actuallyautistic @benjamincox
"People who get angry about this are either don't understand Autism or are projecting the hate they got and lash out to others."

Maybe also parents of autistic children who think that by saying you are autistic you are not taking autism seriously?
There are ofcourse those who say "everybody is a bit autistic" which is not taking it seriously.

But when someone really thinks to be autistic, that should be taken serious too.

yourautisticlife,

@benjamincox @matty @actuallyautistic After having rejected a diagnosis of stroke, and then a diagnosis of multiple sclerosis, both provided by "doctors" in favor of a correct diagnosis of cancer from which I almost died due to delays caused by the earlier misdiagnosis, I feel entirely qualified to self-diagnose my autism.

YMMV.

kawazoe,

@benjamincox @matty @actuallyautistic I felt like you at the beginning. As more of my friends and co-workers turned out self diagnosed or with an actual diagnosis, they all told me they were convinced I must be a bit spicy too.

It turns out neurodivergence is just like other physical illnesses. If you feel like something's different, then it's probably true. We don't expect everyone to get a diagnosis for a cold to believe them. We should do the same for our brain.

Private
philpem,
@philpem@digipres.club avatar

@matty @actuallyautistic There does seem too a bit of gatekeeping in neurospicy. Almost a pecking order. Some ADHDers see themselves as above those with ASD, those with diagnoses see themselves as above those who 'have a suspicion but at age 5x or 6x there's little point'... etc.
The words I've heard from the 'anti' side have been truly vicious, and always along the lines of "faking it".
There's enough prejudice without inflicting it on each other.

18+ EVDHmn,
@EVDHmn@ecoevo.social avatar

@philpem @matty @actuallyautistic
Ok I don’t really know how anyone else is.

But it’s no secret we have communication issues with people on a good day, so instead of judging, and comparing our battle wounds and achievements try to be kind to each other.

Some people are new yet,old. FYI if you want to understand how easily people think about things the way they learn them. Almost like trained ai. Check out framing.
It can happen to us.

https://www.cip.uw.edu

18+ EVDHmn,
@EVDHmn@ecoevo.social avatar

@philpem @matty @actuallyautistic
Not trying to be a vent killer, or invalidate how people feel. But show you how easily we follow our own implicit bias, which changes with locus of experience and emotion and nature . how we can help ourselves and help others?

Be collaborative, have an open minded. Chime in. But most of all be kind. It’s planet friendly and resource friendly, especially to your spoons.

Love you♾️❤️
Gtg. Lots to do and I’m only 6 hours late.

18+ Susan60,
@Susan60@aus.social avatar

@philpem @matty @actuallyautistic

I’m AuADHD (officially ADHD, self realised Au.) I suspect that ADHD is simply a subset of Autism traits. When it’s those traits that are most obvious, especially the more well established traits, the ADHD diagnosis is more likely.

There’s been research (don’t have a link, sorry) showing that 85% of self reported autistic folk who undergo assessment are diagnosed autistic. Figures are problematic. Maybe the dodgier self diagnosed are less likely to get assessed. OTOH, there’s probably still a bunch of autistic people who don’t match narrow outdated criteria who are not diagnosed, incorrectly.

The insistence on formal diagnosis sounds like a narcisstic trait to me. They’re more special.

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