Published on 12, July, 2020
Hi everyone, this is my first post and I'm coming from a place of asking for some advice, if possible! I apologise in advance for the tremendous long post.
I'm an AFAB in her 30s, struggled a lot since I'm around 13 and I have been now in therapy for around 7 years.
Around a year ago, despite trying to really work on myself through therapy and really taking it at heart, frustrated by the usual cyclical breakdowns that seem to happen every few months, I started formulating the idea I might be neurodivergent. With research, things started to make a bit more of sense and I, as it happens, started a rabbit hole of research about autism and adhd, done all the online screenings online multiple times, and so one..
The tricky part is that I have been diagnosed bipolar at 18, depression with borderline traits at 22, and finally BPD a few years after. Mind you, thinking back I believe those diagnosis weren't done in a very effective way and definitely not in an a differential manner. And I also believe that I don't really fully fit the criteria anymore of any of those!
My therapist is of the school of thoughts that it doesn't really matter what diagnosis I have and that we can work together in any case, which has been incredibly helpful, especially as I tend to wrap myself into the stigma around them and, well, I have received a few by now... This leaves me in a very tricky place as partially I worry I'm wrapping my head around the autism diagnosis (even though it somehow feels different than the other ones I've received) and I also feel I can't really bring it up in therapy as it might look like a "distraction" from the therapeutic work.
On the other hand, I'm terrified of following this up with GPs as, first, I get really anxious talking to them, second, I am not sure that the assessment offered will actually be differential (given my history with them), third, I am worried of just receiving another one to add to the list that won't make any difference at all. Plus, I'm in the middle of one of my breakdowns right now which is making these kind of anxiety provoking tasks very hard to follow through.
I also have other people in my life that really feel I should prioritise the diagnosis just to get rid of the doubt, so that I can finally prioritise either trauma work or making accommodations and seeking the right kind of help.
Amidst all of this, I'm stuck in a cycle of overthinking and nothing gets decided... I thought of asking here as maybe neurodivergent people might have some insight in what's the best course of action as I don't have anyone irl I can ask an opinion to and also.. Maybe someone can relate?
Thank you very much even just for reading!
Ah okay yes makes sense, thank you! I'm in the UK. So I think I need to get the GP involved unless I go privately. From my understanding at least!
Primary Care provider = "PC". It's the new argot for "GP", sorry we are in different countries, perhaps? I am in USA.
Feeling a bit silly, but PC stands for Psychiatrist right?
For how my therapist works, I doubt she would want to help me out with those "technical" stuff, her boundaries in this regards have always been very clear, and I have a feeling she wants me to be as independent as possible outside of therapy.
That's partially the reason why I tend not to get involved with doctors in terms of my struggles, but I have a feeling it's biting me back a bit now that I feel like I potentially might need some help with these issues and they have no updated history of what's going on with me...
Misdiagnosis is very common, especially in women from before DSM5 came out.
Your therapist will work with you as a person and labels be damned, so perhaps ask them to facilitate an assessment? Can you keep the PC out of the loop or initiate with the therapist and once things are underway bring the PC in, if you must. I try to keep the PC out of the loop, myself as much as possible as they have little experience with people on the spectrum with some few exceptions. I am also trying to find a new PC I keep changing when new PCs (actual MDs) come into my network to see if they could be an exception. So far no joy.
Thank you Iain, I actually know these graphics, I've gone through a lot of them, and I'm really enjoying the podcast Divergent Conversations, I really enjoy the language that they use in them!
If I need to focus just on traits, to be honest, it feels like the answer would be quite simple.. but then I start with a series of what ifs, or tell myself "how was I not aware of this before", and always end up with a "was it the chicken or the egg first" question. But I think focusing on traits could actually be very beneficial.
I will have a browse around the forum, thanks
Hi Fiona, thank you for the reply, very much appreciated :) I'm going to respond now, technical issues seems resolved!
Fiona said:That must be hard. Do you feel you are making progress with things? Do you have goals for what you are talking through? Is the person helping you? Does your therapist know anything about autism or neurodiversity? Can you ask them to do some research to support you with this? Most people, even therapists, are happy to learn new things, every day is a school day! And it might help you both figure things out. Give them some homework! Particularly since you say you notice the possibility of autism diagnosis feels different. Trust your instincts.
My therapy has been overall incredibly helpful, I think especially in terms of some of the things that felt a bit more trauma/bpd related. I used to be quite an impulsive person for certain things, which I am not that much anymore, I can now better realise when I'm idealising or totalising people/things/memories and I can work through it myself. Also, fear of being alone is almost totally gone, I have discovered through the years how much I love solitude and this has been life changing. But it almost feels like this has freed some space for other things to come up, just to mention one, sensory issues, which started being very much "in my face"! Also, notably, I go through these periods where I feel very "levelled" and I start taking on more and more things and then end up crashing after a few months.. So I've started telling my therapist I think these things I'm realising now could be potentially related to neurodivergence, I've tried bringing it up many times with her but she seems to always bring them back to my previous issues. I don't think she's unfortunately that interested in looking it up as I have the impression she might be of a psychoanalytic school which is not that much interested in neurodivergence as I've encountered it through research/podcasts/youtube, so sometimes it feels like I'm hitting a wall. One of the things that I find confusing is, for example, how we talk about overthinking, and how it feels like the only way for me to stop is to be fully engrossed in something - sometimes she tells me I need to put a limit to my thinking and I literally can't even imagine how that would work...
I don't want to just change therapist without proper consideration though, because I am sure that there are some points where we find an agreement and because, with or without autism/adhd, I've piled up a lot of trauma and that's for sure something that we can work on. I'm just not sure if not being able to talk about it with her is helping with the imposter syndrome of it all.
Fiona said:When I asked for diagnosis, I told him what research I'd done, what uni had suggested, what happened to me at work, how I felt I fitted the criteria (I wrote it down), and he made the referral. I was lucky I ultimately got sent to an autism charity (via mental health) for diagnosis so picking it up in a 51 years' masking female
This is very helpful and reassuring, thank you! Maybe one step I could take next is actually writing everything down clearly, instead of just having it all circulating it in my head at all time. But I'm very glad that even with masking there are people out there that will be able to make a proper assessment!
Fiona said:It would also be worth asking how you get those potentially incorrect diagnoses reviewed, I don't know if that's psychology, psychiatry or mental health....
This is something I feel even more afraid to do, just because I have been through the process so many times before, I've been given loads of unhelpful medication in the past, some with very serious consequences, and everytime it has been extremely stressful to re-tell my story, having it labelled, and so on... But I do think maybe at some point it will have to be done.
Thank you so much again, this has been very insightful, and apologies if my reply is once again very lenghty!
Hey everyone, thank you very much for your kind responses :) It's very heartwarming to see people taking their time reading and formulating a response! I'm having some technical issues giving single thorough responses, I think the content is under moderation, so for now I just wanted to thank everyone and I will be replying as soon as possible
Thank you very much for the welcome and reply, your journey feels very close to home!
I did just type in a thorough reply and it just ended up vanishing, so here's the second take.
AJ90UK said:https://embrace-autism.com/its-not-bpd-its-autism/
I did have a good look at this, I find the website extremely helpful, thank you
AJ90UK said: very quickly and that it wasn’t properly considered
Same here, it was an interview with a medical student in which I brought up BPD...I wonder now if I possibly was myself looking at the wrong direction, but I also realise that, especially at the time, there were a few things that really resonated with the presentation of BPD so I can see how it went.
AJ90UK said:I’m not trying hard enough and I’m letting myself down
Interestingly, I've been considering therapeutic communities as well as an option, I'm sad to hear it's not working out greatly, but I also fear I would have similar issues. And the quote really hits a spot, as I'm still trying to figure out when it's the right time to challenge myself and when it's time to just have a rest and reharge, a concept that I'm really struggling to communicate with my therapist and agree on!
AJ90UK said:It’s more reassuring as you know the assessment is looking at a lot of things rather than a psychiatrist just simply giving you a BPD diagnosis within 10 minutes of seeing them.
This is very reassuring to know, thanks
AJ90UK said:. Complete the AQ10 and give them a copy at your appointment so it shows your score
The GP is actually waiting for my AQ10 and the ADHD screening but I've been paralysed by the anxiety of sending them...
Thank you again for this, it's very heartwarming to see people taking their time to reply and even just having similar stories is somehow really grounding.
Thank you very much for the welcome and the reply, your journey feels very close to home!
I did read a lot on Embrace Autism, that website has been tremendously helpful!
AJ90UK said:my BPD diagnosis was given very quickly and that it wasn’t properly considered
Yes, mine was an interview with a medical student in which I brought up BPD - I wonder now if I also was misunderstanding the presentation of BPD, and I wonder why, for example, C-PTSD or OCD was never in the picture.. But I also realise that, especially at the time, a lot felt like it was resonating and I can see why the clinitian thought it was an easy decision.
AJ90UK said:I’m not trying hard enough
This is especially tricky. I still don't know when is the right time to "try harder" or when it's time to take a rest in comfort, and I find it really hard to explain to my therapist that I'm not trying to make excuses but trying to understand when is the right moment to challenge myself. Interesting that you mentioned a community because I was personally wondering if that could be something housing-wise I should consider, I'm sad to hear that you're experience hasn't been great!
AJ90UK said: speak to an “informant”
This might be a bit tricky unfortunately, but I think I'll have to figure it out once I'm closer to the assesment.. for now my GP is still waiting for my AQ10. I still can't grasp why it's so tremendously anxiety provocking to send it back!
AJ90UK said: lot of things rather than a psychiatrist just simply giving you a BPD diagnosis within 10 minutes of seeing them.
This is indeed very reassuring :)
Hope I have responded to everything and thank you again for this lovely post, I think even just finding people that can relate seem to be quite calming and heartwarming and I'm very humbled by the replies!
Fiona said:It would also be worth asking how you get those potentially incorrect diagnoses reviewed,
There are large areas of overlap betweek BPD and autism so it is worth referring to the graphic below to see which match for you - and remember that it is quite possible to be both.
Neurodivergence is sometimes a complex question as there is also ADHD that can come into the mix and create more challenges in the correct diagnosis.
Personally I would focus on the traits rather than the labels. These will be largely obvious with a bit of reading up on neurodivergence and you can avoid a lot of stigma from having to identify as one or any of them if it does not suit you.
You will find lots of discussion about traits here and peoples approach to them that can be useful.
welcome to the community! It sounds like you’ve been through a lot, and it’s understandable that you’re feeling stuck and overwhelmed. If you don’t feel BPD or Bipolar is an accurate diagnosis, you’re absolutely right to question it. It’s also worth noting that a lot of people are misdiagnosed with either bipolar or BPD when actually they are autistic, particularly born females. Here is a link to some useful info about BPD v Autism: https://embrace-autism.com/its-not-bpd-its-autism/
My experience is similar to yours, and felt like my BPD diagnosis was given very quickly and that it wasn’t properly considered. However since having further assessments I believe it probably is an accurate diagnosis alongside my autism. Although since my autism diagnosis last year, I’ve still be questioning whether BPD is correct or not. I have been having treatment in a therapeutic community, which is group therapy. I’ve been doing it 4 months but seem to be struggling with it still, which I put down to difficulties with my social skills etc. However the therapist often comment that I’m not trying hard enough and I’m letting myself down by not talking more in groups, which I find quite difficult to hear and they don’t consider my difficulties associated to my autism. I’ve therefore stop treatment and will consider support to help me understand my autism. Mental heath services try and fix us by changing the way of thinking and managing in situations, whereas being autistic it’s not us who should change, it’s the world around us, so it can be damaging to try and “fix” us, as that in essence is masking. I have also found it difficult to talk about autism in group therapy, and got the same response as you and told it’s just a label, when in fact, it’s important to find out the real you and whether you’re autistic or not.
autism assessments are also thorough, and they look at a lot of history, speak to an “informant” (someone who has known you since childhood) and run through series of tasks to see if you brain is thinks differently to a neurotypical person. It’s more reassuring as you know the assessment is looking at a lot of things rather than a psychiatrist just simply giving you a BPD diagnosis within 10 minutes of seeing them.
You should continue to explore this and ask for an assessment with your GP. Think about what you consider could be autism and why you think an assessment would be helpful. Complete the AQ10 and give them a copy at your appointment so it shows your score. It will likely be a long wait for an assessment, but use that time to keep researching autism and your own traits.
let us know how you get on
MaxL said:it doesn't really matter what diagnosis I have
Maybe for some conditions I guess this would be true, however for neurodiversity you're talking the way people's brains are wired, that is a physical thing. Like any physical system it is important to get the right diagnosis. Heart attack or indigestion...
MaxL said:been now in therapy for around 7 years
That must be hard. Do you feel you are making progress with things? Do you have goals for what you are talking through? Is the person helping you? Does your therapist know anything about autism or neurodiversity? Can you ask them to do some research to support you with this? Most people, even therapists, are happy to learn new things, every day is a school day! And it might help you both figure things out. Give them some homework! Particularly since you say you notice the possibility of autism diagnosis feels different. Trust your instincts.
MaxL said:I'm terrified of following this up with GPs
I get this, it is hard getting in touch with GPs these days, and they need the patient to be an expert in their condition so that they can just refer you to the correct place. When I asked for diagnosis, I told him what research I'd done, what uni had suggested, what happened to me at work, how I felt I fitted the criteria (I wrote it down), and he made the referral. I was lucky I ultimately got sent to an autism charity (via mental health) for diagnosis so picking it up in a 51 years' masking female was no issue to them, where it might have been for the over-stretched community mental health team.
It would also be worth asking how you get those potentially incorrect diagnoses reviewed, I don't know if that's psychology, psychiatry or mental health.... but more is known now about all of those conditions that you mention, than was available when you were diagnosed, so it is reasonable to have them reviewed. For many years I had a diagnosis of one thing, but when I met a new GP and she took a full history she was concerned something was missed and she sent me to genetics who finally diagnosed the physical thing correctly. Sometimes that step of going over all of it to someone new is really helpful.
I think my 'conclusion' is that I have no advice for you, just a few things to help you think about things in a different way.