BPD. + ASD assessment at the Maudsley after ADHD diagnosis.
* This ended up WAY longer than I intended. If it is too much to read, let me know and I'll post below with a more succinct version (to the best I can. I struggle with being concise!).
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Hi all,
I'm new here, so hi!
I was diagnosed with ADHD at the Maudsley in Jan 2017.
ASD traits were picked up at the assessment. The psych did think BPD was a possibility, but he still noted 'atypical development' and sensory issues, and said ASD could still be a possibility. He recommended that we see 'what's left' after I was settled on my ADHD medication and that my doctor can refer me for the ASD 'add on service' at the Maudsley.
I was subsequently diagnosed with BPD locally. I know now it was a mistake. I have had self harm with a razor in the past, but nowhere near in the same way/context as people with BPD.
I was also having a meltdown at one of my BPD appointments because my partner and I had had an argument due to miscommunication and I'd said "what's the point in us being together then", and he said he was leaving. I do care about him, I think I love him (I say think because I don't really know how that is supposed to feel and sometimes I feel like I can't cope with him anymore).
However, I was mostly so distraught because the change was terrifying to me and I didn't know how I would cope with our daughter alone. Plus, my partner understands me quite well, so the thought of losing that and not being able to find someone else who understands me and whom I feel comfortable with was overwhelming.
The next BPD appointment I was fine. My partner and I had sorted things out and I was no longer emotional. Perhaps they took that as splitting or an unstable relationship? I don't know.
I relate to the BPD traits on the surface, and some of them I thought I did but I don't. As is common with Aspies, I take most things literally.
So when I read "unstable relationships in BPD", I thought that was me because I have a lot of arguments and resentment in relationships. But rarely the breaking up and making up, rarely any real drama aside from arguments then me running off and having a meltdown (to which I sometimes self harm in private) and me eventually breaking up or cutting off from them.
Same with short lived, intense relationships. Thought that was me but it's not. I have short relationships (though my current is 3.5 years) because there are arguments or I cut them off. I also get overwhelmed with people and their habits. I find it quite easy to break up with people as long as it doesn't promote much change. I have frequently been unhappy with my partner, but breaking up has felt impossible because we have a child together and we also live together. Too much change and uncertainty, plus I struggle enough with parenting without being a single Mum, so I rather stay the same and enjoy the good times, and try to work on the bad times. I think things are getting better though.
They are only intense because I don't know how to adjust and become obsessed with spending time with them like a special interest, and then when we are not together I can be quite detached.
I have never said "love you" first, never suggested moving in or taking the relationship further than I think is appropriate for that point (like moving in together too early into the relationship) and never been jealous, possessive, smothering etc.
But I am an intense person naturally. I haven't actually had any serious relationships apart from this one, and another one that wasn't too serious. I've had lots of being taken advantage of and lied to type relationships though.
I also thought I have intense, unstable emotions but I don't really. I often don't even know what I feel or can't express emotion. I become non-verbal or minimise in emotional situations.
I do have Aspie-ADHD related emotional regulation problems, I am sensitive to rejection and criticism because of my past and RSD, and I do have a lot of meltdowns sometimes. But I go off on my own in these situations, I avoid people or hide my meltdowns as much as I can or completely shut down until I'm alone, or just use gestures and avoid eye contact.
I resisted therapy my whole life, but finally decided I HAD to once I was pregnant with my daughter. After waiting for some time, I was given a therapist for two years, whom I cared so deeply about that it still hurts that I had to stop therapy (they could only provide two years). I told her so many things I'd never told anyone before, but was rarely emotional about it. If I did cry, I would feel extremely uncomfortable and cover it up or stop as soon as I could. I made constant jokes and made everything 'light', even awful things.
I really enjoyed analysing and talking with her, but I was more like a peer than a client, and we had a great relationship. Despite this, I always felt like I was holding back, like I couldn't truly connect with her and open up to her. There was always that last piece of the onion unpeeled, you know? I rarely made eye contact until the session had ended. When talking about particularly difficult things, I went so far as to being completely unable to speak without my partner (he didn't usually come but came for this subject) starting me off and me sitting there covering my head with a scarf. I initially used gestures and short sentences, but eventually opened up more and more until I was able to talk further. There were still some aspects of that subject I couldn't talk about much or at all.
ANYWAY, so I always doubted the BPD diagnosis but I tried to accept it. As I always do, I became obsessed with researching it and joined lots of Facebook groups, and also read lots of forum posts. But I never felt like I could identify with them, and I felt like an outlier.
Sometimes I would describe Aspie things like being upset with my daughter after I asked her several times when putting her to bed if she wanted a kiss, she said no then asked me for one after I walked out of the door. Logically, I know why. But it made me so anxious and upset because it was breaking my routine and I felt confused because I had asked her so many times, so it felt manipulative. I posted about this and nobody understood at all.
In fact, a lot of their posts made me uncomfortable, or irritated or angered me. I've always been nervous or irritated and put off by people showing those traits. I would usually end up thinking or giving quite blunt feedback. I would get immensely upset when researching BPD as people were describing and hating these people that were nothing like me. I was constantly telling people that I wasn't anything like that, so I eventually settled on identifying as a 'quiet borderline'.
But although that made more sense, it still didn't feel right. I thought I split on people but I don't really, just more have the Aspie 'black and white thinking'. I still didn't get possessive or jealous and I still had problems in social settings. So I still had a lot of doubt.
I eventually ended up rage quitting a BPD group after they posted a thread talking about the worst things they'd done due to BPD. They were mostly describing horrible, spiteful, abusive or irrational behaviours and thinking patterns, and the anger built up inside of me.
What made me so angry and upset is that barely any of them had remorse or took responsibility, and most of them were laughing or trivialising the behaviour. I ended up bluntly (I tried not to be too blunt) telling them that their attitude was unacceptable, stigmatising and abusive.
I was terrified of the possibility of conflict after that, and felt like I'd stuck my head too far above the parapet so I quit the group and distanced myself from the diagnosis.
Recently I thought about Aspergers again and it clicked. I started researching and more and more things fit perfectly like a puzzle piece, like ADHD did. I remembered my Stepdad telling me that I loved wheels, reflective surfaces and would shut down and go into my own world as a child unless talked to. I had a abject terror towards trains and would scream that there was a bomb. He famously put me through our window when we were locked out, with strict instructions for me to let him in. I sat down and started reading a comic instead, looking surprised when he called me through the window
I asked my doctor for the referral and he done it straightaway. After three weeks of messing about and delays from the Maudsley, I found out (from calling them - they have been terrible at contacting me back this time round ) that my referral had been sent to the ADHD team for a follow up.
I was very upset and confused. Nobody could tell me why this has happened and what it meant. I thought it meant that I couldn't have an ASD referral and was generally very anxious and frustrated.
I hate waiting and I hate not knowing why things are happening, what they mean and what is going to happen next. It doesn't help that this happened this Friday so I've had to wait the whole weekend to be able to work on this again. Plus Christmas is coming up - which I'm already dreading - and it's the worst month for this stuff to be dealt with because of delays and holidays. Sigh.
I ended up writing a VERY long email to them about everything really - my traits, my experience of this process, my upset and confusion, the impact ASD is having on my life etc. I also mentioned that an ADHD follow up is a waste of time as I'm settled on my meds and my GP looks after me. But my ASD symptoms are more pronounced on the ADHD meds and I can be sensitive to them (apparently this is common?). They sent me into a long series of meltdowns when I first started them and again a couple of months later.
But now I feel silly. It seems, talking to a few people, that this is the normal process for those diagnosed with ADHD at the Maudsley. That I might just have my ASD assessment at the ADHD clinic or that i need a follow up first then the ASD assessment? I don't know.. but I wish I did know.
So yeah, this incredibly long piece of text is to:
- introduce myself
- give some background
- talk about BPD and ASD, and ADHD
- get advice and other people's experience.
I hope I get some replies!
OK, you deserve a reply.
Honestly, I didn't make it through your whole post - your offer to shorten it might help you get more replies. That said, people with ASD do tend to write longer posts, so that's one possible sign right there.
From what I did read, I did see some signs of ASD, so it certainly seems plausible. Can't comment on the Bipolar disorder because I don't know much about it, so I'm not voting.
As to whether it's normal, I have no idea. I would tend to think they would be honest with you. If they say they will test you for ASD, but that they want to check other things first, I would tend to believe them. I'm not familiar with the Maudsley, so I couldn't say whether it's normal for that specific clinic.
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Level 1 Autism Spectrum Disorder / Asperger's Syndrome.
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