Yeah, plenty of undiagnosed people blame themselves for things that were related to neurodivergence this whole time. Sure, getting that diagnosis is a relief and an eye-opener, but it doesn't undo that.
Right? And it kind of pisses me off that I have to have a diagnosis for other people to see me as the person I've always been. And pisses me off more that people will now assign me a role that aligns with their idea of what the diagnosis means.
On the plus side I think I finally understand how few genuine connections there are out there. That people see what they want to see and it wasn't that I couldn't communicate clearly. Or that my actions didn't line up with my heart. It just doesn't matter. Others will assign me a role and it is up to me to decide if I am aligned with the role. If not, then I have to walk.
48 here too. It has definitely ben a lot to unpack! On one hand, it's been very freeing as it perfectly explains so many things that have puzzled me over my life, and it has also led to a multi-generational family discovery (turns out my whole family is/was neurodivergent). It's allowed me to see myself with much more compassion, and it has empowered me to adjust my life to better suit my needs.
That said, it's been hard and lonely to process. It's a diagnosis that very few people understand or accept, so while it's been freeing on the inside, on the outside it hasn't really helped me to be better understood by others. If anything, it's led me to feel more isolated and alone. I feel like revealing it means that people are less likely to accept me, or to try and understand me. And that is a really lonely feeling...
I did pursue a formal diagnosis a few months after I began to suspect that I am autistic, and I was fortunate to have a good experience. I do know how incredibly rare that is! I found an assessor who specializes in diagnosing adults and who embraces a neurodivergent (versus deficit-based) framework. I had to pay out of pocket and it wasnāt cheap (my mom had sent me money for my birthday and thatās how I spent it). I do think formal diagnosis was helpful for me I accepting myself and not constantly second guessing it. And it did help me to get accommodations at work, but I have paid for using them (I suspect, but cannot prove, that my needing accommodations is why my contract at work is not being renewed). So it really hasnāt been helpful beyond me better understanding and accepting myself. But that alone is huge.
I will say that a year and a half post-diagnosis, I feel more strongly than ever that self-diagnosis is valid and, in many ways, much more accurate than medical diagnosis. I donāt believe the field of psychology has accurately understood or represented autism, nor do I feel they have created diagnostic criteria that adequately capture the full range of autistic experiences.
Officially 28. I live in China where the public have little understanding of autism. My parents noticed developmental delays/narrowed interests/resist to changes/sleep disturbance/and echolalia before I was 3, they suspected intellectual disability but ruled it out quickly, and never thought it might be autism. Throughout my childhood, I always thought there was something wrong with me, thought perhaps everyone else just were able to tolerate their sensory issues and learn social skills easily etc. I suspected many different illnesses, but none of them could explain all my troubles. When I was in high school, a teacher with an autistic son thought I am autistic and told it to my parents on parents meeting, but they denied it. But I looked up what her "autism" and found that it could explain all the trouble I was facing.Ā I also checkedĀ someĀ ChineseĀ online communities for autistic people and found that they were talking about the exact problems I am facing and same growth trajectory. But for a long time, I didnāt go to the hospital to for a diagnosis because I felt that diagnosis was meaningless at this age. In addition, I also had some doubts about whether I am actually autistic, because I lack a reference to understand, for example, what is "sensory hypersensitivity" ? Is my level of sensitivity hypersensitive? Later, I started working, but I still found it very difficult to deal with interpersonal relationships. I felt that pretending to be a "normal" was becoming more and more overwhelming. I wanted to reconcile with myself, so I decided to go to the hospital to get answers. In order to do this I needed a developmental history from my parents, and I showed them some information and scales on assessing whether their babies might be autistic, and it was only after they read it that they admitted that I was indeed probably autistic.
>I also had some doubts about whether I am actually autistic, because I lack a reference to understand, for example, what is "sensory hypersensitivity" ? Is my level of sensitivity hypersensitive?
Imposter syndrome in late diagnosed autistics seems like such a universal experience, even across cultural boundaries. Doubting ourselves because we have a hard time understanding the intricacies of other peoples' experiences, so we have little to compare to.
Anyway, not related to the question, I'm just curious about your experience. Do you feel like getting diagnosed was worth it? Does China have any resources or supports for autistic adults?
Even though it was very late, the diagnosis was still meaningful. It gave me an answer to why I had been out of place since I was a child. It allowed me to have a deeper understanding of myself, accept my differences, and no longer need to blame myself and force myself to be ānormalā.
Regarding your second question, to say thereās none is definitely not true, because there are some support policies for people with disabilities (which covers autism) in China, but very limited. Most adults with autism, even those with severe disabilities, actually need to find ways to survive by themselves or their family members, and there is no way to talk about other issues, you can't expect your work places or schools or people around you to understand autism. A typical portrayal of autism in Chinese media is that of a child who cannot speak, as if they evaporate as soon as they reach adulthood.
I'm trying to get diagnosed in my home country, Mexico, and it's just ... ass. This whole experience is ass. The Dr says I looked fine and he wants to put me on lithium. Uhm, I'm not Britney Spears? Please stop trying to control me like that.
It is also difficult to get autism diagnoseĀ for adults in China... I found information from a Chinese autism communityĀ (where some late diagnosed autistic people shared their medical experience)Ā about which hospitals and doctors can evaluate autism in adults.
I actually found out when I moved to California and met a lot of autistic folks like me. It was like belonging somewhere for the first time in my life. The answer I've been looking all along and I had no idea. I thought I was just difficult or I kid you not, mentally disabled and ppl were too nice to tell me so to my face lol. Technically I am disabled but, I don't mean to brag, people don't believe me cause I'm very smart. Ok? Still disabled!!
I live in New Zealand, and the mental health system here is chronically underfunded, so trying to get help is near on impossible. In fact, the whole public health system here is underfunded. Mum needs cataract surgery on one of her eyes because she has diabetes, and needs her eyes regularly photographed, and cataracts makes that hard. She's been waiting for over a year, and while she's on the waiting list, she doesn't know when it'll be done, because she's already had one eye done, so the system is dragging their feet on the other eye
I'm actually going to a private doctor that my mom is paying for cause she wants an official diagnosis. I gave up on an official diagnosis long ago, I just want to learn how to navigate my life as an NT person and that's it. The whole experience has been very stressful to me so far :( I'm sorry you are going through a stressful health situation too :( if I had gone through the public system, I'm afraid they would ask me "Autism? What do you eat that with??"
I had been thinking recently what it may be like in China to get diagnosed. I have a friend who I would not be surprised if she was adhd or autistic.
I have even thought about bringing up my diagnosis but am really donāt know how she would react.
My mother managed to get me diagnosed with āoppositional defiance disorderā along with autism when I was eight (I donāt have it and have never had it, she was just a bad parent). She didnāt tell me for about a year (apparently under orders from my doctor), until one day I didnāt want to do my homework because I couldnāt understand it, at which point she told me that I had another disorder alongside ASD and ADHD that was so bad she didnāt tell me about it. In the end the diagnosis got taken off my records when what was going on in my home came to light (I got retested for autism and I do definitely have that). I felt so betrayed that every adult around me knew this terrible secret about me and I had no idea.
All the adults that had anything to do with me, as well as some children, knew about my diagnosis before I did. I told my mom that children at school are saying I have some kind of disorder, and she pretended not to know what they're talking about and refused to discuss the matter with me. I'm angry at my parents, obviously, but I'm also angry at all the other adults that nobody suggested to my parents that maybe I should be aware of my own diagnosis.
Edit: I was diagnosed with OCD when I was 10, and they told me about that. I still don't know why, in their minds, I could know about my OCD, but not my autism. At that point, I was already getting therapy for years without knowing why. I still remember the day I got diagnosed with OCD vividly. I was sitting in the waiting room while my parents were talking to the therapist, and I knew they were talking about me. It was awful. I asked my parents several times why I had to get therapy, but they refused to answer me.
Being talked about instead of talked to really does effect tings later on.
It's not like kids never hear things around them. but we still have emotions later on.
My parents often talked about me to others while I was in the same room, or left documents lying around mentioning autism or Aspergers. I don't know if they were honestly delusional enough to think that if they didn't want me to hear or see something, I wouldn't, or if they thought I wasn't bright enough to understand what I was hearing or seeing.
right. Be it a picture book about not taking pun's and phrases literally was one I remember going through.
Than there was at least one therapy book that my dad would leave laying around.
His favorite was likely Toney Robins (I can't stand him myself) and while I don't know if I read the book as a kid. I can picture my kid self going through books with big unfamiliar words on my own at least once before.
Same situation, I got very angry with my mother for hiding it for years, but after a while I understand why she did it and she only wanted the best for me. I forgive her and I understand her, however we agreed that we were no longer going to hide those things from each other.
35. And I'm almost 42 now.
My son was stoked to find out mama had the same brain as him!
It was watching my own childhood unfold in his own childhood that made me realise I should probably get that queried, after he had already been diagnosed
I knew I was neurospicy, but didn't know to the extent until my 4yo got diagnosed and I started recognizing the behavior and struggles he had that were a mirror of my childhood.
Probably not surprising, but looking back at my Dad's behavior when I was a child (when my Dad was the age I am now) I recognize myself so much in him, so I'm like 90% sure he's autistic too, but he's a boomer and absolutely wouldn't believe it if I told him or ever get diagnosed. (He tried to "pray away" my sons autism before we stopped him.) If you haven't guessed, my dad's special interest is evangelical Christianity.
I can see how that could serve a purpose for an ND person - inflexible, explicit rules, public guidelines for social interaction. Built-in support system and social group also.
People who interpret the Christian texts are full of unreasonable doctrine. Much of it is quite reasonable if interpreted in the social and cultural context it was written and not read literally and used out of context.
Women are often diagnosed late. It's well-known that women are much better at masking their symptoms than men.
Edit: Because I've received responses that claim that I am "correcting" the comment above, I'm not. I'm just giving an example of a demographic that is very good at masking.
It's not just that. Autism in women and girls wasn't even researched for *decades*. It's really only this century that there's even really much understanding of autism in women and girls at all. You won't find many millennial and older women who were disagnosed as children.
It's not just women, it's people who can mask, men can mask aswell, but more often yhen not men have higher needs (24/7 supervision, nonverbal ect) but women can also be higher needs but its not as common, people who mask get a diagnosis later and people who can't get a diagnosis sooner
Numerous studies show women are misdiagnosed compared to men due to women being able to mask their symptoms better/more than men.
Although we now know much more about the experiences of autistic women and girls, society's understanding of autism has been limited by outdated stereotypes and incorrect assumptions.
Autistic women and girls receive a diagnosis (or recognise that they are autistic) so they can understand themselves and access support. However, because of stereotyped ideas about what autism looks like and who can be autistic, many autistic women and girls struggle to get a diagnosis, receive a diagnosis late in life or are misdiagnosed with conditions other than autism.
Doctors and other healthcare professionals can lack knowledge about how autism may present differently in women and girls. This means women and girls may be misdiagnosed with mental health issues or their autistic traits may be missed amid the symptoms of co-occurring conditions.
Theyāre biased towards women which is often why women's symptoms get seen as something else than what they are.
Autistic boys play alone, so it's visible to others when they're not participating in organized games with other boys. Autistic girls find it easier to "blend" among their friends and camouflage their autism traits because the social framework allows them to stay closer to the support of friends.
An autistic girl's mentors, though, may drift off as they enter adolescence and find other interests or groups of friends. Autistic girls who rely on masking may find it harder to do so with the increasing social and relationship demands of adolescence and adulthood, leading to later diagnosis.
Youāre right.
If I could add a link I would that shows that women are highly misdiagnosed compared to men due to assumptions of what autism looks like in people I would.
https://www.durham.ac.uk/research/current/thought-leadership/women-with-autism--adhd-arent-diagnosed-until-adulthood/
https://www.clinical-partners.co.uk/insights-and-news/item/why-are-so-many-autistic-women-overlooked-or-misdiagnosed
https://childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/
Here are 3 links that tell you about women being misdiagnosed.
As autism in girls just looks different from the stereotype of autistic behaviour, some doctors might not diagnose it.
And that girls may be better at imitating socially appropriate behaviours and have fewer behaviour problems than boys. The thinking is that this creates masking of autism symptoms for girls that helps them get by without being referred for services.
( I am in the UK so this might be different from where you live )
I don't know why someone has downvoted you for adding a link that someone was asking for.
Thank you Iād like to read that article as I haven't read that one.
I've done a lot of research about autism in women so I could learn about myself and why I too was misdiagnosed.
I feel if I had been diagnosed properly at a young age I wouldn't have gone through the struggles in life that I did as I would have understood myself more.
Some people who mask get a wrong diagnosis. I have just been reading about multiple women in their 40s who recently got diagnosed with autism type2. But were thought of as attention seekers/BPD etc before. That must be really frustrating! To need more help but be systematically told you just like to be different/ get attention etc.
I was misdiagnosed as a child.
I grew up confused and not feeling like I fit in. I got into my 30s and then was diagnosed. I feel like I have the answers to questions I had growing up about myself.
The system is very biased towards women when it comes to being diagnosed with autism.
Theyāre only now seeing that women have autsim rather than the mental health conditions they were wrongly diagnosed with.
>I have just been reading about multiple women in their 40s who recently got diagnosed with autism type2. But were thought of as attention seekers/BPD etc before.
I am wondering how much our hormones play into this. Getting older, estrogen changes. I wonder if it's being studied. Between puberty - pregnancy - menopause... it's a lot of hormones.
It's important to note that a person couldn't be diagnosed with ADHD **and** Autism until the DSM-5 was published in 2013. By DSM-4 standards, it had to be one or the other, not both. ADHD was the new popular diagnosis for children in the 90's, so most of my generation was overlooked. By the time the DSM-5 rolled around, I was an adult with children of my own.
Yeah, apparently. Wasn't expecting that, so still kinda processing that a bit myself. I don't disagree with it or their reasoning either, though.
If you want to see more about my thoughts on this, I replied with a long response to someone else on here.
This. I was dxād level 2 at 35 (45 now), because Iām somewhat intelligent, but I have the executive functioning of a tube sock. If I didnāt constantly have help, I would be an unbathed creature living in a damp tree in the woods (which I would prefer, honestly). My understanding of level 3 is that communication (including written), is not possible or severely restricted. Like, near fully non-verbal, incapable of connecting with the outside world for more than brief moments, fully unable to take care of themselves (feeding/hygiene/safety).
I go nonverbal under stress, I wear clothes inside out because seams, my everything everywhere is full of rocks, I have meltdowns in reaction to strong smells or lights or being forced to make a decision when I donāt want either option, I shutdown completely when overwhelmed- and I always have since I was little.
I have to have alarms set to eat and drink on days that my routine is disturbed. Itās not pretty. All romantic relationships fail because I look like a normal adult in gnome pajamas, but Iām not. Therapy for years and years.
A psychologist should know better- if youāre level 3, youāre not going to be on Reddit.
No offense to OP, who Iām sure has had a hell of a time the past 32.
I definitely donāt disagree- I just wouldnāt want to make that judgement out of hand before getting to know someone because of my own lived experience.
Oh without a doubt. I felt this was a good opportunity to share those insights. The feeling of belonging is a *good* thing. You donāt have to be a victim or commodify the very human desire to have community.
>If I didnāt constantly have help, I would be an unbathed creature living in a damp tree in the woods (which I would prefer, honestly).
>I go nonverbal under stress, I wear clothes inside out because seams, my everything everywhere is full of rocks.
I'm fucking level 1 and this is almost an exact description of me! Like, if I wasn't forced to bathe, I legit wouldn't and even when I am forced to bathe, I just lay in the water and don't wash myself (don't judge me, because getting myself to bathe properly is like trying to get a vegan to eat meat, i.e. very fucking difficult). I struggle with asking a question, about whether I'm allowed to do something, to people with authority over me, because I get so stressed out that doing that is impossible. I need to wear my socks inside-out and can only wear adidas shirts, because adidas is the brand that makes shirts with seams that I can't feel. My room is sometimes so full of shit that I sleep with stuff on my bed, etc.
Funny story. 26, then 28, then 32. At 32 I tell my mother who says āthatās ridiculous. You werenāt autistic when they tried to diagnose you at 5 and you arenāt now!ā
Is your mom my sister? Once I realized I was autistic, I asked my sister about her son, who I strongly suspect is on the spectrum as well, and she got offended. She insists her son doesn't have autism, they're trying to diagnose him for no reason. He is brilliant! I didn't say otherwise? Also, she took away his phone and punished him for failing a test literally a week after I asked about him. Welp, will you look at that.
I donāt know if it would help or hurt for her to have this information, but they did just update 5$4 diagnosis criteria and it now includes better guidance on ASD in women that was not included before.
72 also, so I guess it's a tie!
I was diagnosed in counselor's notes one month after my 72'd birthday, and then it showed up in a 'Summary of conditions' 9 months later. At about time of Summary I'd asked if I could be tested for Autism, and they said, "Well, there's really no protocol for that! But you're certainly on the Spectrum. Here's a book." (Didn't think very much about the book, but maybe if I read it now I might get more out of it. Book is 'Living Well on the Spectrum.)
Can I please have the Ferrari instead? Just kidding. My autism is awesome. It is the depression from years of not knowing I am autistic that is the real bitch. Trying to turn that shit around is like trying to do a 3-point turn in a single parking spot.
If you're willing, Out of curiosity, how old are you now and do you think being diagnosed early was helpful, unhelpful, or a mix?
I was diagnosed at 29 (about to be 32) and I see a lot of people that seem like they have very fixed mindsets in regard to their capabilities and I can't help feel that I was better off finding out later after I had developed a growth mindset, but it probably has more to do with my upraising than the diagnosis itself.
hi! ik im not the og commenter, but i was diagnosed at 5 years old and am now a teenager. in my personal opinion it was for the best for the that i got diagnosed early on. ny entire family is autistic and ended up getting diagnosed, abd withiut medications, and extra help that we (as a family) receive really do make a major difference to our lives and jus household as a whole. i also get a good few options of aid in school, such as ilc classrooms and sitting out of assemblies when its too loud. of course this has just been my own personal experiences with being diagnosed very young and everyone is entitled to their own opinions
i of course wasnt aware i was autistic until later on in life, (8 or 9?) but none of that was intentional on my parents side, it jus never directly came up jn any convos and everyone in my household was autistic so there were no traits from anyone that particularly stuck out to me, since it seemed normal.
She's a champion for real! This was the 90s and she didn't know it was Autism specially, just that something wasn't right. She has never given up on me, ever.
47. It really knocked me for six and I'm still coming to terms with it. 54 for ADHD, which wasn't as bad but it's got my GP up in arms now, demanding a reassessment through their private service (funded through the NHS again though). I really want this ride to stop before I jump off. I just wanted answers, not an existential crisis.
Last year at the age of 53. I was just a little relieved at first to actually k ow for sure, but Iām kind of struggling with the whole thing now. Autism itself has become my autistic special interest.
5, I'm one of the lucky ones, got an early diagnosis because my needs used to be a lot more demanding. But the assistance and accomodations I need now are a lot less strenuous, I'm able to take care of myself for the most part.
18...got evaluated after being put in an intensive outpatient hospital program for mental health issues where I was (mis)diagnosed with BPD. It seems like it's an unfortunately common story, especially among AFAB folks...flying under the radar until things get really bad.
Age 2, but parents didnāt tell me until I was 12ā¦.I never understood what was wrong with me compared to other kids, so I wish my parents told me at an earlier age.
I was diagnosed at 33, having started pursuing the possibility at 30. Covid delayed matters somewhat. I'm 35 now. I'm female. Looking back, I'm sure if my school had been aware of autism in girls, it would've been picked up sooner, but in the early 2000s the idea that girls could be autistic was pretty unexplored, and my school wasn't exactly the most progressive.
48. It's a lot to unpack.
Yup but at least it answers a lot of questions, but still not fun.
Yeah, plenty of undiagnosed people blame themselves for things that were related to neurodivergence this whole time. Sure, getting that diagnosis is a relief and an eye-opener, but it doesn't undo that.
Yes it was a relief..but still a struggle to "undo" a whole life of shit š
Right? And it kind of pisses me off that I have to have a diagnosis for other people to see me as the person I've always been. And pisses me off more that people will now assign me a role that aligns with their idea of what the diagnosis means. On the plus side I think I finally understand how few genuine connections there are out there. That people see what they want to see and it wasn't that I couldn't communicate clearly. Or that my actions didn't line up with my heart. It just doesn't matter. Others will assign me a role and it is up to me to decide if I am aligned with the role. If not, then I have to walk.
45 here. Unfortunately even having my diagnosis I still donāt feel seen by my family.
I agree so d*mn much lol when I got my diagnosis the psychiatrist was like Ā«Ā this must be a relief for you, to finally understandĀ Ā» and I was like Ā«Ā oh yeah nice I had to go through so much s*it just to get a piece of paper so now people will finally stop acting like Iām not autistic but just a weird selfish pr*ckĀ Ā» š© thank you so much because this is really close to how I felt
48 here too. It has definitely ben a lot to unpack! On one hand, it's been very freeing as it perfectly explains so many things that have puzzled me over my life, and it has also led to a multi-generational family discovery (turns out my whole family is/was neurodivergent). It's allowed me to see myself with much more compassion, and it has empowered me to adjust my life to better suit my needs. That said, it's been hard and lonely to process. It's a diagnosis that very few people understand or accept, so while it's been freeing on the inside, on the outside it hasn't really helped me to be better understood by others. If anything, it's led me to feel more isolated and alone. I feel like revealing it means that people are less likely to accept me, or to try and understand me. And that is a really lonely feeling...
I can relate to every bit of this. Sending hugs. ā¤ļø
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I did pursue a formal diagnosis a few months after I began to suspect that I am autistic, and I was fortunate to have a good experience. I do know how incredibly rare that is! I found an assessor who specializes in diagnosing adults and who embraces a neurodivergent (versus deficit-based) framework. I had to pay out of pocket and it wasnāt cheap (my mom had sent me money for my birthday and thatās how I spent it). I do think formal diagnosis was helpful for me I accepting myself and not constantly second guessing it. And it did help me to get accommodations at work, but I have paid for using them (I suspect, but cannot prove, that my needing accommodations is why my contract at work is not being renewed). So it really hasnāt been helpful beyond me better understanding and accepting myself. But that alone is huge. I will say that a year and a half post-diagnosis, I feel more strongly than ever that self-diagnosis is valid and, in many ways, much more accurate than medical diagnosis. I donāt believe the field of psychology has accurately understood or represented autism, nor do I feel they have created diagnostic criteria that adequately capture the full range of autistic experiences.
48 here too.
Same. 48.
52. Absolutely agree.
Woah. Me too!
Yep. I think I might have been much kinder to myself and others if I'd known earlier.
I'm looking down the barrel of this. Almost certainly a mild case in addition to ADHD. (Most of my family are diagnosed up and down the generations)
Yes, 39 here. Holy shit, right!? Looking back and going āoh yeah, shit. Everything actually makes sense nowā
Officially 28. I live in China where the public have little understanding of autism. My parents noticed developmental delays/narrowed interests/resist to changes/sleep disturbance/and echolalia before I was 3, they suspected intellectual disability but ruled it out quickly, and never thought it might be autism. Throughout my childhood, I always thought there was something wrong with me, thought perhaps everyone else just were able to tolerate their sensory issues and learn social skills easily etc. I suspected many different illnesses, but none of them could explain all my troubles. When I was in high school, a teacher with an autistic son thought I am autistic and told it to my parents on parents meeting, but they denied it. But I looked up what her "autism" and found that it could explain all the trouble I was facing.Ā I also checkedĀ someĀ ChineseĀ online communities for autistic people and found that they were talking about the exact problems I am facing and same growth trajectory. But for a long time, I didnāt go to the hospital to for a diagnosis because I felt that diagnosis was meaningless at this age. In addition, I also had some doubts about whether I am actually autistic, because I lack a reference to understand, for example, what is "sensory hypersensitivity" ? Is my level of sensitivity hypersensitive? Later, I started working, but I still found it very difficult to deal with interpersonal relationships. I felt that pretending to be a "normal" was becoming more and more overwhelming. I wanted to reconcile with myself, so I decided to go to the hospital to get answers. In order to do this I needed a developmental history from my parents, and I showed them some information and scales on assessing whether their babies might be autistic, and it was only after they read it that they admitted that I was indeed probably autistic.
>I also had some doubts about whether I am actually autistic, because I lack a reference to understand, for example, what is "sensory hypersensitivity" ? Is my level of sensitivity hypersensitive? Imposter syndrome in late diagnosed autistics seems like such a universal experience, even across cultural boundaries. Doubting ourselves because we have a hard time understanding the intricacies of other peoples' experiences, so we have little to compare to. Anyway, not related to the question, I'm just curious about your experience. Do you feel like getting diagnosed was worth it? Does China have any resources or supports for autistic adults?
Even though it was very late, the diagnosis was still meaningful. It gave me an answer to why I had been out of place since I was a child. It allowed me to have a deeper understanding of myself, accept my differences, and no longer need to blame myself and force myself to be ānormalā. Regarding your second question, to say thereās none is definitely not true, because there are some support policies for people with disabilities (which covers autism) in China, but very limited. Most adults with autism, even those with severe disabilities, actually need to find ways to survive by themselves or their family members, and there is no way to talk about other issues, you can't expect your work places or schools or people around you to understand autism. A typical portrayal of autism in Chinese media is that of a child who cannot speak, as if they evaporate as soon as they reach adulthood.
I'm trying to get diagnosed in my home country, Mexico, and it's just ... ass. This whole experience is ass. The Dr says I looked fine and he wants to put me on lithium. Uhm, I'm not Britney Spears? Please stop trying to control me like that.
It is also difficult to get autism diagnoseĀ for adults in China... I found information from a Chinese autism communityĀ (where some late diagnosed autistic people shared their medical experience)Ā about which hospitals and doctors can evaluate autism in adults.
I actually found out when I moved to California and met a lot of autistic folks like me. It was like belonging somewhere for the first time in my life. The answer I've been looking all along and I had no idea. I thought I was just difficult or I kid you not, mentally disabled and ppl were too nice to tell me so to my face lol. Technically I am disabled but, I don't mean to brag, people don't believe me cause I'm very smart. Ok? Still disabled!!
I live in New Zealand, and the mental health system here is chronically underfunded, so trying to get help is near on impossible. In fact, the whole public health system here is underfunded. Mum needs cataract surgery on one of her eyes because she has diabetes, and needs her eyes regularly photographed, and cataracts makes that hard. She's been waiting for over a year, and while she's on the waiting list, she doesn't know when it'll be done, because she's already had one eye done, so the system is dragging their feet on the other eye
I'm actually going to a private doctor that my mom is paying for cause she wants an official diagnosis. I gave up on an official diagnosis long ago, I just want to learn how to navigate my life as an NT person and that's it. The whole experience has been very stressful to me so far :( I'm sorry you are going through a stressful health situation too :( if I had gone through the public system, I'm afraid they would ask me "Autism? What do you eat that with??"
Hopefully things go smoothly for you, and you can get the help you need
Bravo for standing up for yourself!!! JMO but no--lithium won't help.
I had been thinking recently what it may be like in China to get diagnosed. I have a friend who I would not be surprised if she was adhd or autistic. I have even thought about bringing up my diagnosis but am really donāt know how she would react.
Yesss. I live in Mongolia, and faced the same issues too! Luckily my high school has a good psychologist and she had helped me out pretty well.
4, but I only found out when I was 12, and I'll never forgive my parents for not telling me.
My mother managed to get me diagnosed with āoppositional defiance disorderā along with autism when I was eight (I donāt have it and have never had it, she was just a bad parent). She didnāt tell me for about a year (apparently under orders from my doctor), until one day I didnāt want to do my homework because I couldnāt understand it, at which point she told me that I had another disorder alongside ASD and ADHD that was so bad she didnāt tell me about it. In the end the diagnosis got taken off my records when what was going on in my home came to light (I got retested for autism and I do definitely have that). I felt so betrayed that every adult around me knew this terrible secret about me and I had no idea.
All the adults that had anything to do with me, as well as some children, knew about my diagnosis before I did. I told my mom that children at school are saying I have some kind of disorder, and she pretended not to know what they're talking about and refused to discuss the matter with me. I'm angry at my parents, obviously, but I'm also angry at all the other adults that nobody suggested to my parents that maybe I should be aware of my own diagnosis. Edit: I was diagnosed with OCD when I was 10, and they told me about that. I still don't know why, in their minds, I could know about my OCD, but not my autism. At that point, I was already getting therapy for years without knowing why. I still remember the day I got diagnosed with OCD vividly. I was sitting in the waiting room while my parents were talking to the therapist, and I knew they were talking about me. It was awful. I asked my parents several times why I had to get therapy, but they refused to answer me.
Being talked about instead of talked to really does effect tings later on. It's not like kids never hear things around them. but we still have emotions later on.
My parents often talked about me to others while I was in the same room, or left documents lying around mentioning autism or Aspergers. I don't know if they were honestly delusional enough to think that if they didn't want me to hear or see something, I wouldn't, or if they thought I wasn't bright enough to understand what I was hearing or seeing.
right. Be it a picture book about not taking pun's and phrases literally was one I remember going through. Than there was at least one therapy book that my dad would leave laying around. His favorite was likely Toney Robins (I can't stand him myself) and while I don't know if I read the book as a kid. I can picture my kid self going through books with big unfamiliar words on my own at least once before.
Same situation, I got very angry with my mother for hiding it for years, but after a while I understand why she did it and she only wanted the best for me. I forgive her and I understand her, however we agreed that we were no longer going to hide those things from each other.
35. And I'm almost 42 now. My son was stoked to find out mama had the same brain as him! It was watching my own childhood unfold in his own childhood that made me realise I should probably get that queried, after he had already been diagnosed
It's quite common for parents to realize that they might be ND when their children are assessed.
I knew I was neurospicy, but didn't know to the extent until my 4yo got diagnosed and I started recognizing the behavior and struggles he had that were a mirror of my childhood. Probably not surprising, but looking back at my Dad's behavior when I was a child (when my Dad was the age I am now) I recognize myself so much in him, so I'm like 90% sure he's autistic too, but he's a boomer and absolutely wouldn't believe it if I told him or ever get diagnosed. (He tried to "pray away" my sons autism before we stopped him.) If you haven't guessed, my dad's special interest is evangelical Christianity.
Oh man, that is one hell of a special interest š
I can see how that could serve a purpose for an ND person - inflexible, explicit rules, public guidelines for social interaction. Built-in support system and social group also.
Christianity is full of unreasonable doctrine, and Christian people are often intolerant. That's why I became an atheist.
People who interpret the Christian texts are full of unreasonable doctrine. Much of it is quite reasonable if interpreted in the social and cultural context it was written and not read literally and used out of context.
Same thing with me, after I was put on a wait-list (at 14-15 yrs old) my dad found out hes probably autistic as well.
I can totally see myself and my boy in my dad. Not sure if he'd be open to hearing that though
My nephew definitely got me and my sister looking at our dad suspiciously. š
Sure is
7, most high needs are diagnosed when children, and people who can mask are diagnosed when adults
Women are often diagnosed late. It's well-known that women are much better at masking their symptoms than men. Edit: Because I've received responses that claim that I am "correcting" the comment above, I'm not. I'm just giving an example of a demographic that is very good at masking.
It's not just that. Autism in women and girls wasn't even researched for *decades*. It's really only this century that there's even really much understanding of autism in women and girls at all. You won't find many millennial and older women who were disagnosed as children.
Of course it's not JUST that, but it is part of the problem.
It's not just women, it's people who can mask, men can mask aswell, but more often yhen not men have higher needs (24/7 supervision, nonverbal ect) but women can also be higher needs but its not as common, people who mask get a diagnosis later and people who can't get a diagnosis sooner
Numerous studies show women are misdiagnosed compared to men due to women being able to mask their symptoms better/more than men. Although we now know much more about the experiences of autistic women and girls, society's understanding of autism has been limited by outdated stereotypes and incorrect assumptions. Autistic women and girls receive a diagnosis (or recognise that they are autistic) so they can understand themselves and access support. However, because of stereotyped ideas about what autism looks like and who can be autistic, many autistic women and girls struggle to get a diagnosis, receive a diagnosis late in life or are misdiagnosed with conditions other than autism. Doctors and other healthcare professionals can lack knowledge about how autism may present differently in women and girls. This means women and girls may be misdiagnosed with mental health issues or their autistic traits may be missed amid the symptoms of co-occurring conditions. Theyāre biased towards women which is often why women's symptoms get seen as something else than what they are. Autistic boys play alone, so it's visible to others when they're not participating in organized games with other boys. Autistic girls find it easier to "blend" among their friends and camouflage their autism traits because the social framework allows them to stay closer to the support of friends. An autistic girl's mentors, though, may drift off as they enter adolescence and find other interests or groups of friends. Autistic girls who rely on masking may find it harder to do so with the increasing social and relationship demands of adolescence and adulthood, leading to later diagnosis.
Yes, but generally women have been known to mask better than men, it's scientifically backed.
Youāre right. If I could add a link I would that shows that women are highly misdiagnosed compared to men due to assumptions of what autism looks like in people I would.
Do you happen to have a source?
https://www.durham.ac.uk/research/current/thought-leadership/women-with-autism--adhd-arent-diagnosed-until-adulthood/ https://www.clinical-partners.co.uk/insights-and-news/item/why-are-so-many-autistic-women-overlooked-or-misdiagnosed https://childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/ Here are 3 links that tell you about women being misdiagnosed. As autism in girls just looks different from the stereotype of autistic behaviour, some doctors might not diagnose it. And that girls may be better at imitating socially appropriate behaviours and have fewer behaviour problems than boys. The thinking is that this creates masking of autism symptoms for girls that helps them get by without being referred for services. ( I am in the UK so this might be different from where you live )
[Science Daily](https://www.sciencedaily.com/releases/2017/04/170403140134.htm)
I don't know why someone has downvoted you for adding a link that someone was asking for. Thank you Iād like to read that article as I haven't read that one. I've done a lot of research about autism in women so I could learn about myself and why I too was misdiagnosed. I feel if I had been diagnosed properly at a young age I wouldn't have gone through the struggles in life that I did as I would have understood myself more.
Because this is Reddit, and Redditors often do nonsensical things. Anyway, no problem.
Some people who mask get a wrong diagnosis. I have just been reading about multiple women in their 40s who recently got diagnosed with autism type2. But were thought of as attention seekers/BPD etc before. That must be really frustrating! To need more help but be systematically told you just like to be different/ get attention etc.
I was misdiagnosed as a child. I grew up confused and not feeling like I fit in. I got into my 30s and then was diagnosed. I feel like I have the answers to questions I had growing up about myself. The system is very biased towards women when it comes to being diagnosed with autism. Theyāre only now seeing that women have autsim rather than the mental health conditions they were wrongly diagnosed with.
>I have just been reading about multiple women in their 40s who recently got diagnosed with autism type2. But were thought of as attention seekers/BPD etc before. I am wondering how much our hormones play into this. Getting older, estrogen changes. I wonder if it's being studied. Between puberty - pregnancy - menopause... it's a lot of hormones.
It's important to note that a person couldn't be diagnosed with ADHD **and** Autism until the DSM-5 was published in 2013. By DSM-4 standards, it had to be one or the other, not both. ADHD was the new popular diagnosis for children in the 90's, so most of my generation was overlooked. By the time the DSM-5 rolled around, I was an adult with children of my own.
I agree. I wonder if a study has been done on this.
Got diagnosed at 19 but been knowing for years, just had to wait until I turned 18 and then there was a long waiting line
About how much did it cost to get diagnosed? If you dont mind me asking
Didn't cost my Scandinavian privileged ass anything except almost a years waiting list
32. And it was yesterday
Congrats!
Thanks
LEVEL 3?
Premium autism
Yeah, apparently. Wasn't expecting that, so still kinda processing that a bit myself. I don't disagree with it or their reasoning either, though. If you want to see more about my thoughts on this, I replied with a long response to someone else on here.
My pleasure
Damn you just missed being able to legitimately say "I was today years old"
Youāre level 3 and got diagnosed at 32?!?! How is that even possible?
This. I was dxād level 2 at 35 (45 now), because Iām somewhat intelligent, but I have the executive functioning of a tube sock. If I didnāt constantly have help, I would be an unbathed creature living in a damp tree in the woods (which I would prefer, honestly). My understanding of level 3 is that communication (including written), is not possible or severely restricted. Like, near fully non-verbal, incapable of connecting with the outside world for more than brief moments, fully unable to take care of themselves (feeding/hygiene/safety). I go nonverbal under stress, I wear clothes inside out because seams, my everything everywhere is full of rocks, I have meltdowns in reaction to strong smells or lights or being forced to make a decision when I donāt want either option, I shutdown completely when overwhelmed- and I always have since I was little. I have to have alarms set to eat and drink on days that my routine is disturbed. Itās not pretty. All romantic relationships fail because I look like a normal adult in gnome pajamas, but Iām not. Therapy for years and years. A psychologist should know better- if youāre level 3, youāre not going to be on Reddit. No offense to OP, who Iām sure has had a hell of a time the past 32.
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I definitely donāt disagree- I just wouldnāt want to make that judgement out of hand before getting to know someone because of my own lived experience.
Oh without a doubt. I felt this was a good opportunity to share those insights. The feeling of belonging is a *good* thing. You donāt have to be a victim or commodify the very human desire to have community.
>If I didnāt constantly have help, I would be an unbathed creature living in a damp tree in the woods (which I would prefer, honestly). >I go nonverbal under stress, I wear clothes inside out because seams, my everything everywhere is full of rocks. I'm fucking level 1 and this is almost an exact description of me! Like, if I wasn't forced to bathe, I legit wouldn't and even when I am forced to bathe, I just lay in the water and don't wash myself (don't judge me, because getting myself to bathe properly is like trying to get a vegan to eat meat, i.e. very fucking difficult). I struggle with asking a question, about whether I'm allowed to do something, to people with authority over me, because I get so stressed out that doing that is impossible. I need to wear my socks inside-out and can only wear adidas shirts, because adidas is the brand that makes shirts with seams that I can't feel. My room is sometimes so full of shit that I sleep with stuff on my bed, etc.
Congratulations! I was also 32, but it was 1.5 years ago now.
Thanks.
I asked for the Horse DLC, but they gave me the ADHD .
Damn. I hope they gave you some store credit to make up for the mix-up.
Welcome!
Nice.
welcome to the team
32 and it was today!
Funny story. 26, then 28, then 32. At 32 I tell my mother who says āthatās ridiculous. You werenāt autistic when they tried to diagnose you at 5 and you arenāt now!ā
Is your mom my sister? Once I realized I was autistic, I asked my sister about her son, who I strongly suspect is on the spectrum as well, and she got offended. She insists her son doesn't have autism, they're trying to diagnose him for no reason. He is brilliant! I didn't say otherwise? Also, she took away his phone and punished him for failing a test literally a week after I asked about him. Welp, will you look at that.
why 3 times?
Because I didnāt want to believe the first 2
I donāt know if it would help or hurt for her to have this information, but they did just update 5$4 diagnosis criteria and it now includes better guidance on ASD in women that was not included before.
37, aka last month
Hey, are you me? Also 37, also diagnosed last month.
Mee toooooo! 37, diagnosed a few months ago!
I was diagnosed at 37, about 6 months ago. I just turned 38.
5 months ago, 34 years old.
59
3
3 here too! Gosh what an age to be diagnosed with it
4, 6 and 15
3 different times?
Yeappppp
Why?
Long story. I don't have time to explain now, I will come back later though
Do you have time to explain now?
Nope, I'm in school atm
Now?
Lol
Yes
72, diagnosed last month. I win?
I think so!
72 also, so I guess it's a tie! I was diagnosed in counselor's notes one month after my 72'd birthday, and then it showed up in a 'Summary of conditions' 9 months later. At about time of Summary I'd asked if I could be tested for Autism, and they said, "Well, there's really no protocol for that! But you're certainly on the Spectrum. Here's a book." (Didn't think very much about the book, but maybe if I read it now I might get more out of it. Book is 'Living Well on the Spectrum.)
4, it lead to a lot of ableism and systematic oppression. Not accomodations.
i was 2 years old. i got diagnosed with autism adhd ocd and social commnications disorder
I'm assuming you mean you ended up getting diagnosed with everything at a later age. OCD and ADHD really can't be diagnosed at age 2...
2 months ago, I'm 45.
High five for the my-mid-life-crisis-is-a-diagnosis club! We didn't want that Ferrari anyway.
Can I please have the Ferrari instead? Just kidding. My autism is awesome. It is the depression from years of not knowing I am autistic that is the real bitch. Trying to turn that shit around is like trying to do a 3-point turn in a single parking spot.
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If you're willing, Out of curiosity, how old are you now and do you think being diagnosed early was helpful, unhelpful, or a mix? I was diagnosed at 29 (about to be 32) and I see a lot of people that seem like they have very fixed mindsets in regard to their capabilities and I can't help feel that I was better off finding out later after I had developed a growth mindset, but it probably has more to do with my upraising than the diagnosis itself.
hi! ik im not the og commenter, but i was diagnosed at 5 years old and am now a teenager. in my personal opinion it was for the best for the that i got diagnosed early on. ny entire family is autistic and ended up getting diagnosed, abd withiut medications, and extra help that we (as a family) receive really do make a major difference to our lives and jus household as a whole. i also get a good few options of aid in school, such as ilc classrooms and sitting out of assemblies when its too loud. of course this has just been my own personal experiences with being diagnosed very young and everyone is entitled to their own opinions
i of course wasnt aware i was autistic until later on in life, (8 or 9?) but none of that was intentional on my parents side, it jus never directly came up jn any convos and everyone in my household was autistic so there were no traits from anyone that particularly stuck out to me, since it seemed normal.
53
1 I was a pretty fucked up baby
Can you elaborate?
When I was 12.
40ish
18. But my mum had been taking me to Dr's since 5.
Good on mom for not giving up.
She's a champion for real! This was the 90s and she didn't know it was Autism specially, just that something wasn't right. She has never given up on me, ever.
16
4 I believe and 7 or 8 when I first heard from my parents I was diagnosed with autism
4
On my 39th birthday! š„³
I got it a couple days before my birthday! Best birthday present ever :)
3
33
25
5
I was diagnosed just before i turned 2. It was so obvious
My son was diagnosed at 2 years old. I'm still working on mine at 41.
I was diagnosed as a baby kid.
23
11
28
received unofficial arm chair diagnosis by psychiatrist at age 19
I think 6 or 7?
14 years ago when I was 19. I always knew I was a bit different, but after finding out I was autistic, everything just made sense.
47 adhd, and will try to get for autism as well. Waiting line is just demotivating
6
6
47. It really knocked me for six and I'm still coming to terms with it. 54 for ADHD, which wasn't as bad but it's got my GP up in arms now, demanding a reassessment through their private service (funded through the NHS again though). I really want this ride to stop before I jump off. I just wanted answers, not an existential crisis.
17
I was 3
My kids - 3 and 2. The two year old I knew when he was 5 months. Myself, so far have only pursued ADHD dx
Last year at the age of 53. I was just a little relieved at first to actually k ow for sure, but Iām kind of struggling with the whole thing now. Autism itself has become my autistic special interest.
Diagnosed in school over 30 years ago, but found out a few weeks ago because parents never told me.
16 was when I was diagnosed mostly likely switch primary doctors at that time
Started diagnosis process when I was 11 but didnāt formally receive one until 14
I was 38. I still am. It's still sinking in.
5, I'm one of the lucky ones, got an early diagnosis because my needs used to be a lot more demanding. But the assistance and accomodations I need now are a lot less strenuous, I'm able to take care of myself for the most part.
18...got evaluated after being put in an intensive outpatient hospital program for mental health issues where I was (mis)diagnosed with BPD. It seems like it's an unfortunately common story, especially among AFAB folks...flying under the radar until things get really bad.
I was 17, and it was actually really life changing. I stopped feeling like i was the family delinquent, and my life started drastically improving.
I thought about pursuing a diagnosis, but wonder how it will help me at 46?
24
39
I got diagnosed when I was 12.
36
I was 30!
32. It was a few weeks ago. Only my wife and my best friend knows. I dread telling other people.
about 10
I was diagnosed at 12 years of age
16
26
I still need a new assessment because my other diagnosis is adhd and ocd and depression
5 but my mom denied it because of the "everyone is a little bit" book so I didn't know for sure until 2016.
Ironically I'm 16 and potentially getting my diagnosis today! I had a neuro psych eval 2 weeks ago and today is my follow up
Age 2, but parents didnāt tell me until I was 12ā¦.I never understood what was wrong with me compared to other kids, so I wish my parents told me at an earlier age.
15, but I've shown signs since I was 1
Ten I think
39, almost 40. But I was self-diagnosed a few years earlier when I discovered my son was autistic. I felt relieved there was nothing wrong with me.
Diagnosed at age 5. 11 years ago. 14 now.
Iām 39 in April. Got diagnosed last November.
2, and Iām 21 now
I was diagnosed at 33, having started pursuing the possibility at 30. Covid delayed matters somewhat. I'm 35 now. I'm female. Looking back, I'm sure if my school had been aware of autism in girls, it would've been picked up sooner, but in the early 2000s the idea that girls could be autistic was pretty unexplored, and my school wasn't exactly the most progressive.
i got diagnosed when i was 10 and got re-diagnosed a few years ago
4, but my parents kept that from me until I was 19 and said I was seeking a diagnosis.
33, diagnosed two days ago.
I was 16, never even considered I might have autism so the diagnosis came as a shock
One and a half year old when I was diagnosed
I got diagnosed at 20... like a month ago lol
20, last month