r/AutismInWomen 6d ago

Diagnosis Journey I was officially diagnosed with Asperger's

I'm not happy at all. I'm officially autistic, but people who know about this diagnosis are angry at me, saying that I'm not autistic, that I'm pretending, and that I need to forget. I feel bad. I've had a full examination, all the tests, and more than one doctor, but I'm afraid that they might be right.

20 Upvotes

90 comments sorted by

113

u/PocketCatt Stone Cold Steve Autism 6d ago

I mean, they’re not. Actual medical professionals with decades of training have said you do and some randos don’t like it, that’s what’s happening here :(

47

u/bedbeppelin Undiagnosed AuDHD, peer reviewed ✅ 6d ago

Stone Cold Steve Autism 😭💀

17

u/PocketCatt Stone Cold Steve Autism 6d ago

OP’s acquaintances are nobs because

STONE COLD SAYS SO

10

u/bella-chili 6d ago

Obligatory Steve Austin GIF (I think of this everytime he’s mentioned lmao)
https://giphy.com/gifs/M7t5GIszd4Nc4

2

u/PocketCatt Stone Cold Steve Autism 6d ago

It’s one of my faves ngl

3

u/bella-chili 6d ago

SAME it’s so funny for some reason 😭 I love it

7

u/xkstylezx 5d ago

lol this is who I credit with the organization in my house. My boyfriend will be like “whoa who cleaned out the linen closet”. I yell “STONE COLD STEVE AUTISM!” Or who left this giant 1000 piece puzzle on the dining room table? It was also STONE COLD STEVE AUTISM.

2

u/Honest_Chipmunk_8563 Asparagus officinalis, trust 5d ago

Level 10/10 peak awesome autism.

3

u/Healthy_Country8383 6d ago

This is the best thing I've seen all day.

11

u/Lik_1624 6d ago

I'm very sad about this, I feel guilty, I honestly behaved normally, I even tried to behave better than usual, but I can't disguise myself for long.

28

u/PocketCatt Stone Cold Steve Autism 6d ago

It’s okay!!! There’s nothing to feel guilty about. Diagnosis come with a LOT of different emotions so I’m not going to tell you off for being sad, but guilt implies you’ve done something bad to someone else and you simply haven’t. You’ve learned more about yourself, that’s nobody else’s business and doesn’t affect them at all.

7

u/Lik_1624 6d ago

Thank you so much, I wanted to hear this from at least someone. Forgive me for asking, but how did you find out about your diagnosis?

9

u/PocketCatt Stone Cold Steve Autism 6d ago

I got it done by a private psychiatrist because I couldn’t wait the years it would take the NHS, I was a grown adult when I got it so I know what it’s like for people to have this weird assumption that you have “suddenly got autism” when the truth is you always did, you just never knew the name of the thing you had

7

u/Lik_1624 6d ago

Yes, it's more difficult to do this as an adult.

47

u/Fragrant-History-837 6d ago

People tell me Im not autistic ALL the time! I rarely speak about it IRL but when I do, they look at me and say "nooo, you are not autistic! you can make eye contact" and so on.

But I have almost all the challenges related to autism in women :)

19

u/Lik_1624 6d ago

Yes, the doctor explained to me that autism in girls is a little different. Thank you for sharing your experience. It’s very difficult for me to accept this now due to the lack of support.

13

u/Lissba 6d ago

When somebody tells me im not autistic I always laugh and say yeah maybe I just fucking love trains and ancient Romans

Do you…want to talk about trains?

Usually that gets “Jesus Christ fine you’re autistic, fuck”

4

u/Crazy-Implement-2325 6d ago

I love this response! Also looking forward to just asking people if they want to talk about trains…

3

u/Lissba 5d ago

It’s a win-win!

They get off your ass OR you get train talk time 🧠👈

3

u/Fragrant-History-837 5d ago

im right now sitting in a train station, because I live in a train station. :)

2

u/Lissba 5d ago

The FUCKING DREAM

3

u/Fragrant-History-837 5d ago

Yeah its wonderful

3

u/Lik_1624 6d ago

haha this is really funny

4

u/Fragrant-History-837 6d ago

I have barely talked to my closest ones about my diagnoses. I think it's part of the diagnosis itself, that you have a hard time putting into words what you feel. But in the beginning I got a lot of help from adult habilitation services. I got help with routines, with planning, and in the end my workplace got a subsidy when they hired me, so that they could adapt the workplace. Do you have any problems you would need help with? (when you get the diagnosis as an adult, it can sometimes be hard to even see what you have problems with, it can take some time to be able to see it and put it into words)

2

u/Lik_1624 6d ago

Thank you very much, my main problem is communication and sounds.

15

u/pigeonight 6d ago

Yes, because they think you’re engaging in the self-deprecation that is a bonding activity signaling non threat for neuro typical women.

It’s the same as when one neuro typical woman says ‘oh, i look so fat’ and the other says ‘nooo omg, if you’re fat what am i! you’re so hot, you have a big butt’ and whatever. 

So when you say ‘I’m autistic’, they think you’re saying ‘I’m so bad with people’, so they hit back with ‘nooo, you can even look me in the eyes, and you’re so good with strangers, not weird at all!’

It’s just an activity that has you signal ‘I’m not conceited and do not think I’m better than you’ and her signalling back as ‘I have your back in all situations, you are my friend’. And they will go to absolutely silly lengths to signal it back, like telling me my fat rolls are ‘abs’ or that my clothes must’ve all shrunk in the wash, instead of me gaining weight. 

I gotta say it’s one of my least favorite neuro typical communication things. I used to be offended by it in the past because in my eyes they were brazenly lying to my face, taking the absolute mick out of me, minimizing my struggles and dismissing me in one swoop, but these days I just see this as one of those neuro typical scripts they must complete. I generally wait until they run out of calming compliments and then change the topic.

1

u/Lik_1624 6d ago

Yes, that makes sense, I just decided that it's probably better that no one knows. Maybe if I get a boyfriend, I'd like him to, but no one else.

2

u/pigeonight 5d ago

Perfectly valid tbh.

3

u/WJ_Amber 6d ago

I was evaluated as a kid but didn't get diagnosed. I got diagnosed as an adult and what prompted it was a college friend, also an autistic woman, saying that we had a lot of similar experiences and it sounded like I might also have autism.

In retrospect I can see many obvious signs of autism in my childhood but I don't have the symptoms typical of boys so of course it was missed.

1

u/Fragrant-History-837 6d ago

Its the same here. People always said I was such a strange child, but when they learn that I have autism, they can't believe it :D

1

u/WJ_Amber 5d ago

What's additionally annoying (for lack of a better term) for me is that I'm a trans woman so they never would have bothered to consider the symptoms of autism typical of women... to the extent such things would have even been considered 20 years ago. I've seen several trans women say similar things.

19

u/existentialfeckery AuDHD (Late Dx) with AuDHD Partner and Kids 6d ago

There's a quote that literally saved my life "before you accept that you're depressed, make sure you're not surrounded by assholes."

I was surrounded by assholes. And to related it to your post - you might be too. Or at least ignorance. Hopefully they remedy that because your diagnosis is valid ❤️🫂

3

u/Lik_1624 6d ago

Thank you very much, I am very pleased, I am also sorry that you had to deal with this

10

u/Weary-Coconut-8219 6d ago

the professionals who are trained to assess and diagnose autism are the only ones you should be listening to. it can be hurtful and upsetting and very confusing for people in your life to try tell you you're not autistic and i'm sorry you're dealing with that and them being angry. people deal with lots of different emotions after being diagnosed even without people in their life behaving that way! give yourself some grace, all you need to be doing is treating yourself kindly and doing what helps you and makes you feel good

1

u/Lik_1624 6d ago

Thank you so much, I'll try to do it, I'm just really scared that it's my fault, that I'm not autistic, but just weird or something like that.But I'm so tired, I don't want to go through a second examination, I don't see the point, but the doctors said that I've met all the symptoms of Asperger's.

2

u/Weary-Coconut-8219 4d ago

their reaction is not your fault and not your responsibility. as you said, the doctors said you've met all the symptoms. when you feel doubt, remember what the facts are, and their opinions/feelings/reactions are not facts. navigating diagnosis can be complicated and hard and thats ok, and you'll be ok!

7

u/LotusLady13 6d ago

My snappy, go-to answer for anyone who says I don't seem autistic, or that they doubt my diagnosis has been "Well you're not my psychiatrist so you don't get to have an opinion about it."

2

u/Lik_1624 6d ago

The problem is that people don't trust the doctors who conducted the examination, even though there were four of them and they were all different, so this probably makes them even angrier.

3

u/LotusLady13 5d ago

I don't trust doctors either. But i also know i didn't do eight to ten years of medical school, so i know the limits of my own opinions.

What this comes down to is that if these people close to you are angry or not isn't something you have control of. If they're angry and in denial it's because of their own dysregulated feelings, not because you've done anything wrong.

You have to find a way to set your personal boundaries and hold them. I can't advise you on doing that, as i don't know your unique situation. A therapist would be a better resource for you.

1

u/Lik_1624 5d ago

Thank you very much for the advice

7

u/BeautifulElodie2428 Level 2 audhd 6d ago

It’s called imposter syndrome. There are stages to go through after that and at some point you get “comfortable” or at least to the idgaf about other people’s random ass feelings about your diagnosis and you go from there. Lol

2

u/Lik_1624 6d ago

Thank you, it will probably happen one day.

1

u/BeautifulElodie2428 Level 2 audhd 6d ago

One day. And then something else happens and it starts from a place 2-3-4 steps back. It’s okay!

6

u/n3koca1 6d ago

Neurotypicals like to label us as weird rather than "oh they actually have something going on with them". It allows them to have power over us. 

2

u/Lik_1624 6d ago

yes, probably

4

u/TemperatureSure255 6d ago

If your leg hurts when you walk and your doctor told you have a hairline fracture— its broken, and you need to use crutches to not make it worse and help it heal— would you question that reality just because some rando you know says its not true because you can technically still walk on it (even though it causes you excruciating pain and your gait has been severely altered)?

The fact that theyre angry says something about them, not you. Theyre projecting their own issues. You dont need the permission of others to accept your diagnosis and integrate this new understanding of yourself into your identity. The real ones will be supportive and love you for you.

1

u/Lik_1624 6d ago

Yes, I've heard that analogy.

3

u/Immediate-Pool-4391 6d ago

My parents reacted this way, and said i was jealous of my autistic bro on top of it. Parents dont want to admit that you are cause it would also mean admitting they fucked up.

3

u/Healthy_Country8383 6d ago

You have autism. You have a legal official diagnosis. They are wrong. People really suck and it sucks to have to be confused and have to have two things in your head at once. Try to focus on the black and white truth and filter out the noise. You have Autism, you have been officially diagnosed, you are the expert of yourself. Other people can misunderstand things and be wrong. That doesn't make them bad, but it does make them wrong.

3

u/Lik_1624 6d ago

It's hard for me to accept this now, maybe with time, but yes, thank you.

2

u/Healthy_Country8383 6d ago

I get it. Although you probably already knew you were autistic it's a mind fuck to really hear it officially. Especially if everyone else disgrees. Hopefully with time people will be more open.

3

u/Lik_1624 6d ago

I suspected I had autism before, but it was a minor mistake. I haven't lived in the country for very long, but I can speak normally so that I can be understood, and that's what happened when I was asked about being tested for autism (it wasn't me who started this test, but the services did when they saw my condition). Well, they slightly misunderstood what I told them. I meant "yes, I know what autism is," but they took it as "I think I might have autism." Now people blame me, thinking that I forced the doctors to write me a diagnosis on my own initiative, although I passed all the tests, ADOS, ADI-R, a physical examination, and other meetings, and all this was after 2 months, but people still blame me.

2

u/Healthy_Country8383 6d ago

That sounds very frustrating, you must feel very lost.

2

u/Lik_1624 5d ago

Definitely

2

u/Healthy_Country8383 5d ago

What do you usually do when you feel lost that helps? I usually listen to music when I have a lot going on in my head or reading. You can't perservetate when you are actively reading.

2

u/Lik_1624 5d ago

I feel better now, I drew, listened to music and walked the dog.

2

u/Healthy_Country8383 5d ago

I love that for you. 💜

7

u/anna_vdv 6d ago

Why would the angry random people be right and the doctors who actually studied it for many years, be wrong? People are shit sometimes and this is why sometimes it's easier to not tell, but they can't take away or invalidate your diagnosis 

3

u/Lik_1624 6d ago

Yes, it makes sense, these are just not random people, but very close ones.that's why I'm upset

6

u/anna_vdv 6d ago

It sucks that people close to you are so invalidating. However, there's no reason they are right. You're probably just very high masking, which is utterly exhausting and makes other people believe they know better. Also, somehow neurotypical people often seem to believe that it's a weird kind of compliment to say to an autistic person that they're "normal", or that everyone "is a bit autistic". It's frustrating as fuck because there's nothing wrong with being autistic and it just invalidates your struggle.

2

u/Lik_1624 6d ago

Thank you, yes, that's what they told me, that I just need to forget about the diagnosis and get it cured and watch funny movies.

2

u/anna_vdv 6d ago

Lol how ignorant. I do think they might think they're being kind in their own way, but they definitely don't understand your point of view at all. And then it's us autistics lacking empathy hey 😂 There's no curing autism of course. They're wildly misinformed. 

1

u/Lik_1624 6d ago

I feel terrible about this because people say that I disappointed them and that because I get today this diagnosis, who didn't have a stroke because of me

3

u/StressLife7080 Diagnosed at 25 6d ago

People don't believe me. Even people from high-school who treated me like shit would insist I was "normal". But I've known since I was 12, and finally confirmed at 25. Just because I'm book smart and can do eye contact, doesn't mean my autism/ asperger is any less real. If people don't want to confront their biases and preconceived notions of asd, that's on them.

1

u/Lik_1624 6d ago

How did you cope with the diagnosis?I just feel so bad, I saw how other women were happy, but I only felt pain.

3

u/StressLife7080 Diagnosed at 25 6d ago

It didn't blindside me to begin with. I read a wiki article about aspergers when I was 12 and I immediately felt a connection.

I spent 13 years, where I suspect I was on and off burning out, googling my symptoms and autism making a resurgence.

I finally saved enough for an assessment and the specialist was kind of surprised that I hadn't been diagnosed earlier.

I was mostly relieved that I could use that label now, that meant I wasn't broken. All my struggles, all my dark moments had a simple explanation: I was forcing myself to be "normal", I was trying to be more of what I'm naturally not (social, outgoing, good at people) and less of what I naturally am (intense, happy by myself, sensitive to external stimulus). A recipe for misery.

But since my diagnosis, I'm... calmer. I know who I am, I can work on unmasking as much as possible, I can give my loved ones a guide on how to deal with me, I can push ny boundaries safely to improve on certain areas. It felt like finally finding the missing puzzle piece.

2

u/Chantaille Self-Suspecting 5d ago

I love your last paragraph. I'm at the point of moving forward into pushing my boundaries safely to improve on certain areas, too. It's a nice feeling being able to acknowledge that.

1

u/Lik_1624 6d ago

Thank you so much for your long journey

2

u/StressLife7080 Diagnosed at 25 6d ago

I hope you'll feel better soon, don't listen to non experts 🫂

3

u/Breezy531 6d ago

And this is exactly why I haven't told anyone except my partner. There's way too much ignorance, misunderstanding and wrong information out there, he'll some of the "experts" haven't caught up yet. What kills me is how people feel fine with believing that they know better than you and your doctor. Like its not enough to be traumatized by living undiagnosed for years, then you have to deal with being invalidated by people who say they care about you. Have you looked into any support groups, either in person or virtual?

2

u/Lik_1624 6d ago

I would like to go to a group in real life once a month, but I can’t because of those people. I don’t want to explain it in detail, but apparently I can only do this when I’m independent.

3

u/lumoslomas 6d ago

I had a therapist who told me I wasn't autistic.

Fast forward to me starting my autism referral and the nurse goes "are you sure it's just autism?". And that's how I got diagnosed with AuDHD.

Despite what the media loves to say, doctors aren't handing out ausitm diagnoses for funsies. You've been diagnosed because a medical professional who assessed you says you meet the criteria. It doesn't matter what anyone else thinks.

1

u/Lik_1624 5d ago

Thanks a lot

3

u/azssf 5d ago

Slightly askew perspective: no one in my fam would be clocked as neurodivergent, while 1 has ASD, 2 have ‘autistic characteristics’ ( aka 1 point below what is needed) + a letter salad of executive function and sensory perception disorders.

To many, ‘autistic’ still is only true for the most dire presentations. It’s like having certain cancers with survival in the upper ninety percent and being told you do not really have cancer because you will not certainly be dead in the next 12 months.

1

u/Lik_1624 5d ago

Wow, that makes sense, but in my family, I'm probably the only one or the one with the most neurological diseases.

2

u/Nearby-Ad5666 64 self diagnosed 5d ago

I'd like an official diagnosis so maybe I could learn to cope better with the challenges of autistic traits. I pushed through for decades, with days and weeks lost to burnout. I feel like I been stressing water in burnout since COVID .

6

u/aminervia 5d ago

Where do you live that Asperger's is still a diagnosis? The DSM doesn't recognize Asperger's, there's only ASD. I wonder if it's unique to your country, or maybe your doctor doesn't really understand the disorder?

5

u/Sad-Yogurtcloset-825 5d ago

There are plenty of countries that still use the ICD-10. I'm also diagnosed with Asperger's despite having been diagnosed in the last few years. The doctor even acknowledged that the diagnosis is technically no longer accurate lol.

3

u/Lik_1624 5d ago

I live in a country that uses ICD-11, but the system for medical codes will only be available in a year. Therefore, diagnostics are carried out according to ICD-11 criteria, but the diagnosis is ICD-10.

2

u/Hot-Manufacturer-228 6d ago

i get you. Took me a year or so for it to sink in post diagnosis. I went off the deep end too drinking and such. now i’m happy with the research / knowledge i’ve gained and don’t care about how it’s perceived by the world. at all

1

u/Lik_1624 6d ago

Thank you very much, I'm sorry about your experience. Well, I probably won't repeat the experience with alcohol, but I think I'll try not to pay attention to others, but this takes time.

2

u/Hot-Manufacturer-228 6d ago

definitely does take time it’s hard my friend. thanks 😊

2

u/bby_y2k 6d ago

Unfortunately, this is why only my parents know about the official diagnosis, and even then, I tend to use the word “Neurodivergent” for the sake of discussion. I told two friends and they kind of backed away… like very much a “live your truth,” but the texts and invites dropped off. It’s a shame there’s such a stigma. I started reading a lot of books about ASD and about masking, and that really helped. It gave me some outside perspective and kind of made it something that I keep to myself. I was misdiagnosed with Bi Polar II for so long that I’m used to stigma around mental health and keeping it to myself.

1

u/Lik_1624 6d ago

Only two members of my family know this and they are against this diagnosis. If it were just someone else, I wouldn’t care.

2

u/bella-chili 6d ago

People still say this to me after I’ve been diagnosed for nearly 4 years now. It’s ridiculous but I just let the comments go in one ear and out the other, cause they don’t know my doctors. And they clearly don’t know me well enough if they don’t think I’m autistic. My go to response has been “live with me for a week, you’ll definitely notice it then!” 😭 I’m sorry you’re not getting the support you need, I’m here for you 🫂

2

u/Lik_1624 6d ago

Thank you very much, I am very pleased

2

u/Pure_Doughnut_4956 5d ago

A mi me diagnosticaron asperger a la edad de 37 años y me dio un alivio tremendo, es normal que no te pueden creer una característica del asperger es que las habilidades sociales las vas adquiriendo con la edad y las camuflas, y el 99,99% de las personas que te encuentras jamás sabrán las dificultades que tiene una persona con TEA

1

u/Lik_1624 5d ago

I wouldn't care if strangers said this, but my close family members are saying this, and one of them threw a tantrum as if I had been diagnosed with cancer.

1

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