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?

  • The PD thing is quite complicated really - AvPD has symptoms pretty similar to autism, as does OCPD. However, from what I remember, autism is the appropriate diagnosis if symptoms were apparent in childhood, as PDs typically begin in adolescence. The OCD thing is also complicated! If your rules and rituals are driven by anxiety (i.e. a bad thing will happen if I don't do X), it's OCD, whereas if you just do things a certain way because that feels right, it might not be OCD even if it makes you feel anxious to do things differently. I do have some OCD around contamination, so I have rituals around food that (in my head, not in reality!) are designed to stop me getting sick. But there are lots of other things I do a certain way just because it feels like the way it should be done, and according to my assessors, that's autism, not OCD. I also had not-anorexia for a while, lol (ironically, that was OCD that looked like anorexia). I've spent a long time being labelled with atypical presentations of mental illnesses! 

    That sucks about it looking like any assessment might be with the CMHT, ugh. Getting in touch with autism network Scotland sounds like a good plan though!

  • @limetree84: oh wow, im really sorry for the hassles of going through all of that! it is really is telling just how much a lot of professionals try to look for any other answer when there's one right in front of them! interesting that you mention personality disorders too (same with martian tom), as on a PD questionnaire i filled out during an assessment, i scored very highly for AvPD, but even then my therapist was reluctant about wanting me to get an official diagnosis for that too. maybe i'm just being very suspicious, but the whole team sans my therapist heavily pushed for putting me on very high dose medication for OCD, and my CPN in particular was rather passive aggressive about me refusing to be medicated. my therapist, on the other hand, doubts that i have OCD, just OCD-like symptoms. i can't help but feel they're just, almost, looking for an easy answer and a (relatively) fast fix? (i mean, my personal feelings are that i do have ocd as ocd frequently comorbids with other things too so i dont think the presence of something else negates it, and vice versa) the doctors seem to take a huge stance against diagnosing PDs or ASD, because theyre seen to be as something inherently untreatable, when they believe this is all temporary. i recall a doctor saying something along those lines when i brought up the AvPD score. even when i tell them my mental illness (and, if it is autism, them that too) has been visible and impacted me since childhood, they still seem to be looking at the surface. sorry for going on another ramble about myself, but it's just when you said that, it just reminded me about these other things. i'm really glad you finally got an answer after all that hassle since you were a teenager though! and haha thats great, snap!

    i had a google around, and i'm left a little disheartened and a little confused. when i looked up for services in my area for adults, it just lists Community Mental Health Team 1, which is the same CMHT im with. other sites also list the same building this team is in as a place to go. however, there is one site that lists CMHT1 but the address is a different building. however, said building is actually where i go to my psychotherapy appointments! so it seems regardless of which one, i still run the risk of meeting the same people, or if not, still have other people in the building be in communication with those i have met already. i'm tempted to maybe give autism network scotland a call and see if they can advise me or let me know if there is another specialist place that maybe i'm not finding! but thank you all for listening and for the advice so far, i really do appreciate it a lot, thank you!

  • Hi red109,

    I was in a really similar position to you at 25 in terms of agoraphobia and OCD. I've been in and out of first the child and adolescent, then the adult, mental health services since I was 15, I've seen dozens of professionals (I could count if I could be bothered, but I can't be bothered, and I love counting, so that says a lot!) over the last decade and a half - psychiatrists, psychologists, therapists, social workers, occupational therapists, eating disorder specialists, neurologists, etc. The vast majority treated me with suspicion, bordering on comtempt, and I've been followed by personality disorder whispers since I was a teenager, despite fitting a grand total of one criteria from the borderline PD list. I'm 31 now, had my assessment for autism three days ago, and two total strangers took two hours to say it was obvious I had autism, pretty much everything I described was a symptom. It was my weirdest and best experience of the NHS in last fifteen years. 

    Do have a google of which service has responsibility for autism diagnoses in your area. Where I live (Tyne and Wear area), there's a specialist adult diagnostic service not attached to the CMHT, and you can self-refer (although I think the self referral thing is pretty rare). If you think it will make a difference to how you feel about yourself, don't let any professional tell you a diagnosis is unnecessary. 

    I also get 42 on the AQ by the way - snap!

  • @recombinantsocks: it's funny because this is exactly the problem! i have a hard time being able to organise and explain these things, so like i said in an earlier reply, i get mixed responses in that, it's either i'm too self aware for it to be the case, or that im not self aware enough to know what im talking about. ive asked others for advice with regards to getting a diagnosis, and some have tried to tell me to use specific phrasing, but admittedly its a little manipulative, and so i cant bring myself to do it (im bad at lying).

    ive taken the AQ test before years ago, which first started me taking a look into this. i cant recall my score but it was definitely above 32. i took it just now and got a score of 42. although, i do feel there are a few questions that come with a "yes, but..." sort of thing haha.

    i have read exceprts from books, as well as some findings, reports, or extensive lists about how it affects and presents in girls and women differently, but i've never actually fully read any books about it, no! do you have any recommendations?

  • @aspergerix: a lot of what you said there truly makes a great deal of sense, and it's very unfortunate if it's true. while looking up for any resources in my city, i found articles about how this city has the highest rates of autism, and it makes me wonder if a lot of the pushback is due to money/resources being stretched as it is, so those who are "high functioning" enough are turned away. honestly the way the people in charge of these systems view neurodivergent people (especially those unable to "earn" their living), ranges from appalling to downright horrifying.

    i think a set up like that sounds like it would be a good thing for those involved (both for charities and those in need of it), although there also seems to be negative views held by some people about private diagnoses. for instance, an ex telling me that going private isn't valid because they just tell you what you want to hear. i have a little more trust for people working in the profession than that, but it means it causes this issue of people being forced to rely on NHS' word, and if they are not able to give the support/diagnosis someone is looking for, then people just simply slip through the system without any support. it's a tough situation all around.

  • @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!

  • Former Member
    Former Member

    The NHS mental health system seems to get this wrong over and over. It seems quite possible that you have autism but I think that it is odd, given that you are already in the MH system, that they wouldn't consider autism as an explanation. There is a Catch-22 involved here because people with autism are singularly ill equipped to persuade people about things like this. If you didn't have communication problems then you would stand a chance of persuading them to take you seriously but autism blocks that route.

    As Tom says, take the AQ test and post the results here.

    Also, there are lots of books about autism in females. have you read any of those? Autism is harder to spot in females but I think that it is also less common.