Wanting diagnosis as an adult but not being taken seriously

hello there, i'm looking for advice but i guess also in a way this is also to mildly vent or try and parse some things out. im sorry in advance for this incoherent, longwinded post!

(also just for reference, im a 25 year old woman, i'm agoraphobic/house bound, had to drop out of university a couple years ago, im not capable of working, have socialising difficulties thats left me with no real-life friends and not many online friends either, and executive dysfunction that makes keeping things in order at home wrt cleaning up, eating properly etc difficult)

after doing research into it for a few years now, i feel like there is definitely a lot in ASD that describes my childhood and what im going through as an adult now, and how it's affecting my life. however, i get the feeling because i'm not "severe" enough, no one will take the ways i DO struggle seriously and refuse to listen. 

while i know that terms as Aspergers or Atypical Autism are now all under Autism Spectrum Disorder as a whole, those categories are ones that describe my situation more accurately. i've always been verbal and i am capable of conversation when needed, and as i've gotten older, especially in my early twenties, started to understand and recognise nuances in people's expressions, cognitive empathy, learned to have more of a back and forth conversation rather than it being very one sided. ive also gotten way better during my teenage years/twenties about being too literal, and understand things like metaphors, sarcasm and jokes more often than not these days. for those reasons, i give off the impression that i "seem fine", according to a former psychologist. however, a lot of the symptoms i do have are then dismissed by others, and it feels frustrating, especially when i already have issues with very low self esteem and an issue with constantly questioning whether my own feelings and experiences are valid, sometimes if they are even real (which can cause dissociation) and sometimes need someone to confirm they are because i can't reassure myself otherwise.

so, definitely didn't help when i was referred to a psychologist for OCD symptoms, for her to bring up my poor eye contact and atypical expressions. the moment i brought up that i was considering asking about autism, she became very dismissive and condescending, and even when she asked for me to write out my experiences for our next appointment, she added that she "didn't think it was anyway", because she gets 'feelings' about who is and isn't. the next appointment i came back with a list of things, and she proceeded to excuse them all away. my sensory problems? just anxiety. my special interests? well, i have a couple of online friends so i'm lying when i say those interests are almost all i talk about. even the way i was bullied very harshly as a child for my very unusual behaviours (which turn out sound like symptoms)? i was just teased because of my red hair. and because i have empathy (which i didnt understand during my childhood and teenage years), i therefore can't be. she then went on to say "it's a spectrum so it's likely you could be on it somewhere, but it's not worth getting into the diagnosis". and then towards the end of that appointment, regarding my ocd, deliberately set off my intrusive thoughts for no reason.

she was just one of the several people who work on the local mental health team that ive been referred to, and at one point ive worked with a psychiatric nurse, a social worker, a peer support worker, a doctor, and i am currently seeing a psychotherapist. all except the last (because i havent bothered bringing up the topic with her) have ranged from being silent to being outright skeptical and dismissive whenever i brought it up, or brought up related/comorbid problems that they have missed. i have no idea who to speak to anymore. i don't even have any friends in real life. the only person i see regularly now is my psychotherapist, who i get along with, but has told me she's not in any position to diagnose me for anything. i'm far too afraid to ever go to a GP to ask for a diagnosis, that even if they took me seriously and referred me, it would likely be that local MH team again. i'm not sure if they could refer me to anyone else? and even if i go through the diagnosis for adults, it's not guaranteed they'll understand how it presents in women, that it can be different between childhood and adulthood, and the fact that my mum (a single parent) was absent a lot and handled my symptoms very negatively during my childhood would be no help during the assessment, i feel like giving up. it would be nice just to be able to speak to someone about this and not be immediatly invalidated/dismissed. i go back and forth between self diagnosing due to my issues of self esteem and being unsure of myself, and not wanting to offend others.

i just feel trapped in this weird middle ground where it feels like i'm apparently """NT passing""" enough that people put those expectations on me, and that where i do in fact struggle or when i have symptoms that stand out, im mocked for, or told to stop, just generally met with misunderstanding. i feel like having an official diagnosis would just be able to once and for all put my qualms to rest, and would finally be able to make sense of my childhood and hopefully move forward and find community or help needed, but it almost feels impossible, especially with the professionals' attitudes in my area. what should i do?

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  • @martian_tom: i'm so, so sorry for the way the CMHT reacted the first time, and the misdiagnosis and confusion! but it's good to hear after all of that back and forth it all came together, and that you got the diagnosis! it sounds good to be vindicated after all of that.

    and honestly it's just so strange how stubborn CMHTs can be. they will gladly tell you what they think the problem is, but when you tell them, they tell you that you must be wrong and seem determined to undermine your own thoughts. you're either too self aware to be something, or not self aware enough to know what you're talking about. although, aspergerix's response seems to explain a lot of why it seems such things are met with a lot of resistance, which is unfortunate.

    agreed in that it's been a case of just having to adapt, though. that's something i feel NT professionals seem to overlook? it still feels alienating even when you do try though, and the things that aren't instinctual can be very exhausting. but it seems they don't realise that. the psychologist i spoke to didn't seem to comprehend the ways it affected me as a child vs. an adult, and it sounds like there are many others with similar experiences too, which is really unfortunate. it's always good to hear there are people out there in care jobs that do actually care though, thank you for your all your work!

    i'm not sure if i have someone to back me up. my psychotherapist seems to be hesitant in general. i could potentially have my younger brother on my side since he knows me best out of my family, but i'm anxious about letting him know. it could be feasible if it's really needed, i think? i dont open up to my family much about what im going through, though. thank you for the link, i recall doing this before and scored above 32 which is what prompted me to do more research into asd. i just took it again and got a 42? so if that will help in a referral, i will bring this up, thank you for the advice! i guess my only real problem is even if i got a GP to refer me, i just really don't want to be referred to the same CMHT again, but i'm not sure if they will be able to refer me to anywhere else? but thank you again for your advice and for reading, i really appreciate it!

Reply
  • @martian_tom: i'm so, so sorry for the way the CMHT reacted the first time, and the misdiagnosis and confusion! but it's good to hear after all of that back and forth it all came together, and that you got the diagnosis! it sounds good to be vindicated after all of that.

    and honestly it's just so strange how stubborn CMHTs can be. they will gladly tell you what they think the problem is, but when you tell them, they tell you that you must be wrong and seem determined to undermine your own thoughts. you're either too self aware to be something, or not self aware enough to know what you're talking about. although, aspergerix's response seems to explain a lot of why it seems such things are met with a lot of resistance, which is unfortunate.

    agreed in that it's been a case of just having to adapt, though. that's something i feel NT professionals seem to overlook? it still feels alienating even when you do try though, and the things that aren't instinctual can be very exhausting. but it seems they don't realise that. the psychologist i spoke to didn't seem to comprehend the ways it affected me as a child vs. an adult, and it sounds like there are many others with similar experiences too, which is really unfortunate. it's always good to hear there are people out there in care jobs that do actually care though, thank you for your all your work!

    i'm not sure if i have someone to back me up. my psychotherapist seems to be hesitant in general. i could potentially have my younger brother on my side since he knows me best out of my family, but i'm anxious about letting him know. it could be feasible if it's really needed, i think? i dont open up to my family much about what im going through, though. thank you for the link, i recall doing this before and scored above 32 which is what prompted me to do more research into asd. i just took it again and got a 42? so if that will help in a referral, i will bring this up, thank you for the advice! i guess my only real problem is even if i got a GP to refer me, i just really don't want to be referred to the same CMHT again, but i'm not sure if they will be able to refer me to anywhere else? but thank you again for your advice and for reading, i really appreciate it!

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