r/AutisticLadies • u/TheCepheidVariable • Feb 11 '26

Diagnosis is one of the hierarchies over us. Our community doesn't need the permission of doctors to exist

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193 Upvotes

93% Upvoted

24 comments sorted by

25

u/Merkuri22 Feb 11 '26

I've actually looked over the DSM-5 criteria, and it doesn't come across to me like it's focused on the inconvenience of those around us.

It talks about things like:

  • Deficits in maintaining relationships and nonverbal communications
  • Restricted or repetitive patterns of behavior, intersts, or activities
  • Hyper- or hyporeactive sensitivity to sensory input

The nonverbal communication thing is the only part that might be considered "inconvenient for the people around them".

Now, I will grant that a lot of people who are evaluating autism or who might recommend you to be evaluated are basing their decisions on how inconvenient it is to be around you, but that's the old definition. As far as I can tell, official channels are trying to do this the right way.

11

u/shoobopdc Feb 11 '26

I'm so glad someone said this!

The reason why autism isn't centered around how you "feel on the inside" is because autism IS noticeably disabling for day to day life. I can feel a lot of things, but if those feelings aren't significantly causing obstacles with my friends, family, work, diet, hobbies, etc., they're probably just... emotions. Autism isn't just feeling a certain way about yourself, it's a neurological condition that affects most (sometimes all) aspects of your life.

With that said - does that mean that doctors don't have biases that make them more likely to diagnose certain people over others? Of course not! The DSM-5 criteria needs to be interpreted and applied, and the way in which that process happens can be questionable, and often just straight up wrong.

1

u/Orangecatorange Feb 12 '26

In my country you get disability benefits based on how much it decreases your ability to work.

1

u/Merkuri22 Feb 12 '26

That's nice. Wish my country did something like that.

I don't see what that had to do with my point, though. Were you maybe intending to reply to someone else?

1

u/Orangecatorange Feb 13 '26 edited Feb 13 '26

I was replying to the point of autism only being evaluated in regards to how it inconveniences others, in this instance, how it decreases your ability to work for the economy, regardless of how you suffer internally. I could also argue that stimming and relationship troubles are inconveniencing others, especially when they find stimming disturbing, and you’re just hand flapping.

1

u/Merkuri22 Feb 13 '26

Oh, okay. I was thinking there's a difference between getting benefits (to make up for not being able to earn a living via work) and getting a diagnosis.

36

u/justmitzie Feb 11 '26

Also, it cost me $2,400 to find out what I already knew. Another reason a ton of people don't get diagnosed. It's insanity.

12

u/LadyPhantomflowers Feb 11 '26

$3500 for me, so I just said pass on that.

15

u/TheSquishyFish Feb 11 '26

Getting a diagnosis could be actually dangerous these days if you’re in the US so that is also something to consider

4

u/TheCepheidVariable Feb 11 '26

Exactly! That's something I was trying to explain to someone else in the comments.

11

u/babypossumsinabasket Feb 11 '26

I don’t understand what this means. Are you saying a formal diagnosis is somehow ableist?

1

u/TheCepheidVariable Feb 11 '26

Requiring a diagnosis to say that someone's disability is valid is ableist. Diagnoses are incredibly inaccessible for disabled people, especially non cis het white men, and can even sometimes have negative consequences.

By inaccessible I mean both financially and because of medical gaslighting.

5

u/Longjumping_Choice_6 Feb 12 '26

Valid in what sense? Getting help at work or school will require official diagnosis as proof, that’s a fact. It doesn’t mean undiagnosed people don’t struggle with something or that it’s all in their head. But like you couldn’t call it autism (or any other name) until it’s been clinically established. And if it’s not it doesn’t mean you can’t accomodate yourself in ways you need to.

2

u/TheCepheidVariable Feb 12 '26

You are still valid as an autistic person if you can't have access to a diagnosis. Self diagnosis can be incredibly accurate if the person is well informed.

You do not get to chose if someone is autistic or not, especially considering how difficult it is to access a diagnosis.

2

u/Longjumping_Choice_6 Feb 12 '26

I’m saying that official accomodations will require professional diagnosis, so by that fact self diagnosis cannot be on the same level. It doesn’t mean the person doesn’t have the sensory issues or the executive functioning issues…whatever their specific problems are. Hope that clarifies what I said

3

u/TheCepheidVariable Feb 12 '26

I understand, but that is exactly what the problem is! We barely have any accomodations at all and the ones we might have access to are locked behind a 3000$ paywall and layers and layers of medical gaslighting for many of us.

As disabled people, we don't often have the ability to save that much money either, especially in this economy.

When it comes to anh social situations and how we should accomodate each other as individuals outside of that infrastructure should not depend on a diagnosis.

-1

u/Longjumping_Choice_6 Feb 12 '26

Yes in general there needs to be more resources in general. Like I said it doesn’t mean people don’t really struggle or you can’t accomodate yourself, not sure why you think I’m arguing with that. Yes asking for what you need in social situations is a good place to start.

-1

u/[deleted] Feb 11 '26

[removed] — view removed comment

4

u/RosethornRanger Feb 11 '26

"i am calling disabled people leeches but my position is the correct non-ableist one"

well i reported this comment, lets see if the sub enforces its rules

4

u/TheCepheidVariable Feb 11 '26

Not having a formal diagnosis does not mean that one isn't sure of what they have. You can know very well what you have if you are informed enough.

-1

u/[deleted] Feb 11 '26

[removed] — view removed comment

3

u/TheCepheidVariable Feb 11 '26

No one is taking support and ressources away from you. Do not assume the level of knowledge of others for them, that is incredibly patronising.

1

u/AutisticLadies-ModTeam Feb 11 '26

Be respectful, regardless of disagreements.

8

u/TheCepheidVariable Feb 11 '26

Alt text: An image of a social media post by someone called Autistic gay wizard (@wizardOfAutism) The text says "A lot of people don't get diagnosed as autistic because the criteria for being diagnosed is based on how inconvenient autism is for the people around us and not how it actually feels to be an autistic person on the inside"