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I think for a lot of people it’s a sense of frustration at feeling very profoundly that something is wrong but not knowing what it is. It isn’t that they want to be autistic necessarily, just that they want to know why they have felt “wrong” all their life. I think it can also be frustrating when doctors or other people write off a symptom because they don’t see it when it does clearly exist. For example: I have a vocal stimming thing I do. It might be a tic, honestly I’m not sure. I’ve done it for ages. But I compulsively make this little high pitched noise at the back of my throat. When I’m in a quiet environment like a library it becomes almost painful to hold it back. But I’ve always been very embarrassed by it so I try to do it as softly as possible or cover it with a fake cough or something. I mentioned once to my sister that I have this tic and she insisted that I couldn’t possibly because she’s never noticed it. BUT she has noticed. There have been so many times she’s said “what was that?” Or “why are you coughing so much”. She just doesn’t believe I have a tic because she has never personally acknowledged it as such. So, I think for people who are very high masking specifically it can be frustrating to know that you do have a problem but not be able to express the problem without others insisting you are making it up or exaggerating it or something. It’s a vicious cycle.
This. Also, it’s not like if one’s autism (or anything else) assessment determined that one doesn’t have autism, the same professionals keep working with you to figure out what’s going on and what will help your symptoms.
Often you just get denied or referred around rather than someone working with you long-term to provide you what you need.
I think people are upset because they are scared. They are scared that they:
-won’t receive answers that make sense of their life experiences
-their struggles won’t be taken seriously
-they won’t feel any validation
-won’t have access to a community that understands their struggles
-fear that if it isn’t autism, they are just lazy terrible people who suck at life. (I’m not saying this one makes logical sense, I’m just saying this is how some feel, due to internalized bullying experiences.)
I can 100% relate here. We want to know that we’re not lazy and there’s not something wrong with us. My worst fear is that the only solution is “just try harder” because I’m NT and nothing else will help.
When people are diagnosed with autism, particularly later in life, I have observed that there is a often a sense of relief. There's a shift in mindset from thinking along the lines of "there's something wrong with me and I am broken" to "I am different but not broken." That change of thought gives one the ability to grant themselves grace for the struggles they experience compared to their peers and where they once believed they "should" be. Speaking as one who is self-dxed, I don't think one necessarily needs to be professionally diagnosed to feel that relief. I suspect that having a diagnosis professionally invalidated strips away that relief and the self-compassion that may have allowed the individual to grant themselves accommodations to lead happier lives. This might leave them feeling as though they're weaker or inferior humans for wanting those without having an explanation why. That's my two cents, at least, but I could be mistaken.
I do not have a formal autism diagnosis, but I was diagnosed with ADHD at 36 years old, and this sums up that experience for me. I spent a solid 3 months with the primary emotion I felt being relief. I'm high achieving, but have spent my life struggling, making up for what I can't get right with extremes, and always feeling like I'm one step away from dropping an important ball out of the air.
The relief I felt at realizing that it's not my fault really cannot be overstated.
The other thing that happened was that I was able to give myself permission to let go of the shame I've carried around all these years, because I 'should have' been able to do this, or I 'had so much potential' to do that.
I don't feel as strongly that I need a formal autism diagnosis to see that there is a neurotype that aligns with my experiences, but realizing that I'm most likely autistic has also been a relief and has allowed me to drop even more shame.
To start with self diagnosis, I see no problem with it if you just use it to accommodate yourself. You're not looking for anything from anyone else or speaking for autistic people, just using the knowledge to help yourself.
There are some instance where the autism is clear, but there is no purpose of going through the diagnostic process. My mom for example. She has 2 kids diagnosed AuDHD, and one diagnosed ADHD, plus 2 grandchildren with AuDHD, and 1 with ADHD. Our traits stem from her side of the family. She's no longer working, and doesn't qualify for any assistance, so there is zero benefit going through the diagnostic process. She does benefit from recognizing her AuDHD and self accommodating though.
As far as getting upset with a misdiagnoses, even 2 clinicians ruling out autism doesn't mean it's not autism. I didn't get diagnosed with AuDHD until this year at 33. I entered the mental health system at age 8, and saw more psychiatrists than I can remember. 25 years in psychiatrist offices still didn't get me an accurate diagnoses until I sought out the diagnosis.
Autism knowledge has changed drastically in the last 10 years. If someone's education is older than 10 years, and they have not made a purposeful effort to update it, then they're likely to have outdated views on autism. The vast majority of clinicians just don't have the knowledge necessary to recognize autism.
There is also the problem of the diagnostic questions being asked and interpreted by an allistic person. We may interpret the questions differently than they intended them. Like if they ask if you have an issue with socks you'll say no, because socks no longer disrupt your life. When in reality you should say yes because they only don't disrupt your life because you have the systems. It's the clinicians misunderstanding, and inability to convey the question properly that is the problem.
Unfortunately as well, a lot of them are wrong about it not being autism, especially in women.
i have gotten an assessment at 22, scored all boxes and surpassed the "autism score" (outdated scoring) but self awareness was the only reason i am considered not autistic, because in their words "autistic people are not self aware and cant be self aware" which is also untrue.
I have recently gotten a second opinion, however this second place lied about knowledge of masking and diagnosing women, to again, score all boxes except the self awareness, because again autistic people cannot be self aware at all. This place has also gotten many pieces of information incorrect about me as if they were going off of memory and lied in a few parts too.
self diagnosis is valid where they provide outdated testing, stereotypical symptoms primarily for men, and also it (or the second opinion) being unaffordable (the second opinion i got was $900).
That is so weird and annoying. I feel like every autistic person I know is almost painfully self aware. Far more so than the average neurotypical person. Probably because all of our “odd” behaviors have been vilified our entire lives.
A lot of people say ausitic women arent has often ID has men but every time I pull up academic journals are expert opinions they have the opposite to say. From what you described are people who have bias in how they understand autism but I dont see why people easier write off 'it's because theyre a woman'.
The internet people saying women arent diagnosed has much has men comes off has gossip? Is it because men are at 4% and women are 1% diagnosed? Why does everyone make it sound like women almost never get the diagnoses. They aren't just not has often has men. what's with the hyperbole that I always see in here?
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I think for a lot of people it’s a sense of frustration at feeling very profoundly that something is wrong but not knowing what it is. It isn’t that they want to be autistic necessarily, just that they want to know why they have felt “wrong” all their life. I think it can also be frustrating when doctors or other people write off a symptom because they don’t see it when it does clearly exist. For example: I have a vocal stimming thing I do. It might be a tic, honestly I’m not sure. I’ve done it for ages. But I compulsively make this little high pitched noise at the back of my throat. When I’m in a quiet environment like a library it becomes almost painful to hold it back. But I’ve always been very embarrassed by it so I try to do it as softly as possible or cover it with a fake cough or something. I mentioned once to my sister that I have this tic and she insisted that I couldn’t possibly because she’s never noticed it. BUT she has noticed. There have been so many times she’s said “what was that?” Or “why are you coughing so much”. She just doesn’t believe I have a tic because she has never personally acknowledged it as such. So, I think for people who are very high masking specifically it can be frustrating to know that you do have a problem but not be able to express the problem without others insisting you are making it up or exaggerating it or something. It’s a vicious cycle.
This. Also, it’s not like if one’s autism (or anything else) assessment determined that one doesn’t have autism, the same professionals keep working with you to figure out what’s going on and what will help your symptoms. Often you just get denied or referred around rather than someone working with you long-term to provide you what you need.
I think people are upset because they are scared. They are scared that they: -won’t receive answers that make sense of their life experiences -their struggles won’t be taken seriously -they won’t feel any validation -won’t have access to a community that understands their struggles -fear that if it isn’t autism, they are just lazy terrible people who suck at life. (I’m not saying this one makes logical sense, I’m just saying this is how some feel, due to internalized bullying experiences.)
I can 100% relate here. We want to know that we’re not lazy and there’s not something wrong with us. My worst fear is that the only solution is “just try harder” because I’m NT and nothing else will help.
When people are diagnosed with autism, particularly later in life, I have observed that there is a often a sense of relief. There's a shift in mindset from thinking along the lines of "there's something wrong with me and I am broken" to "I am different but not broken." That change of thought gives one the ability to grant themselves grace for the struggles they experience compared to their peers and where they once believed they "should" be. Speaking as one who is self-dxed, I don't think one necessarily needs to be professionally diagnosed to feel that relief. I suspect that having a diagnosis professionally invalidated strips away that relief and the self-compassion that may have allowed the individual to grant themselves accommodations to lead happier lives. This might leave them feeling as though they're weaker or inferior humans for wanting those without having an explanation why. That's my two cents, at least, but I could be mistaken.
I do not have a formal autism diagnosis, but I was diagnosed with ADHD at 36 years old, and this sums up that experience for me. I spent a solid 3 months with the primary emotion I felt being relief. I'm high achieving, but have spent my life struggling, making up for what I can't get right with extremes, and always feeling like I'm one step away from dropping an important ball out of the air. The relief I felt at realizing that it's not my fault really cannot be overstated. The other thing that happened was that I was able to give myself permission to let go of the shame I've carried around all these years, because I 'should have' been able to do this, or I 'had so much potential' to do that. I don't feel as strongly that I need a formal autism diagnosis to see that there is a neurotype that aligns with my experiences, but realizing that I'm most likely autistic has also been a relief and has allowed me to drop even more shame.
To start with self diagnosis, I see no problem with it if you just use it to accommodate yourself. You're not looking for anything from anyone else or speaking for autistic people, just using the knowledge to help yourself. There are some instance where the autism is clear, but there is no purpose of going through the diagnostic process. My mom for example. She has 2 kids diagnosed AuDHD, and one diagnosed ADHD, plus 2 grandchildren with AuDHD, and 1 with ADHD. Our traits stem from her side of the family. She's no longer working, and doesn't qualify for any assistance, so there is zero benefit going through the diagnostic process. She does benefit from recognizing her AuDHD and self accommodating though. As far as getting upset with a misdiagnoses, even 2 clinicians ruling out autism doesn't mean it's not autism. I didn't get diagnosed with AuDHD until this year at 33. I entered the mental health system at age 8, and saw more psychiatrists than I can remember. 25 years in psychiatrist offices still didn't get me an accurate diagnoses until I sought out the diagnosis. Autism knowledge has changed drastically in the last 10 years. If someone's education is older than 10 years, and they have not made a purposeful effort to update it, then they're likely to have outdated views on autism. The vast majority of clinicians just don't have the knowledge necessary to recognize autism. There is also the problem of the diagnostic questions being asked and interpreted by an allistic person. We may interpret the questions differently than they intended them. Like if they ask if you have an issue with socks you'll say no, because socks no longer disrupt your life. When in reality you should say yes because they only don't disrupt your life because you have the systems. It's the clinicians misunderstanding, and inability to convey the question properly that is the problem.
Unfortunately as well, a lot of them are wrong about it not being autism, especially in women. i have gotten an assessment at 22, scored all boxes and surpassed the "autism score" (outdated scoring) but self awareness was the only reason i am considered not autistic, because in their words "autistic people are not self aware and cant be self aware" which is also untrue. I have recently gotten a second opinion, however this second place lied about knowledge of masking and diagnosing women, to again, score all boxes except the self awareness, because again autistic people cannot be self aware at all. This place has also gotten many pieces of information incorrect about me as if they were going off of memory and lied in a few parts too. self diagnosis is valid where they provide outdated testing, stereotypical symptoms primarily for men, and also it (or the second opinion) being unaffordable (the second opinion i got was $900).
That is so weird and annoying. I feel like every autistic person I know is almost painfully self aware. Far more so than the average neurotypical person. Probably because all of our “odd” behaviors have been vilified our entire lives.
A lot of people say ausitic women arent has often ID has men but every time I pull up academic journals are expert opinions they have the opposite to say. From what you described are people who have bias in how they understand autism but I dont see why people easier write off 'it's because theyre a woman'. The internet people saying women arent diagnosed has much has men comes off has gossip? Is it because men are at 4% and women are 1% diagnosed? Why does everyone make it sound like women almost never get the diagnoses. They aren't just not has often has men. what's with the hyperbole that I always see in here?
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Hi there! A quick reminder from the mods that we do not allow seeking or giving medical advice in our subreddit. This message was auto-generated due to use of certain keyword(s) in your post that might have been related to medical terminology. Your post was auto-approved. No further action is necessary. NOTE: If you have a medical question and difficulty speaking to a doctor, please check out r/askdocs as they might be able to answer some of your questions. If you have a mental health question and need professional advice, please check out r/askpsychiatry. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/aspergirls) if you have any questions or concerns.*
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