BPD diagnoses in the 90s/00s and neurodiversity

[BetweenWhatAndWhat]

(NCed for this because it's potentially outing to people who know my story)

Trigger warning for MH discussion, SH, abuse etc

(Shamelessly posted in chat for traffic)

I'm in my late 30s. In my teens I had an eating disorder and SHed, and struggled badly with periods of severe depression. I first saw a psychiatrist when I was 18 and had quite intense treatment (never in hospital but often weekly outpatient visits, it's only in hindsight I realise this means things must have been pretty bad for me to be seen so often). I went through loads of different medications and nothing really helped. I was diagnosed at 20 with Borderline Personality Disorder and Social Phobia, as well as Depression.

I gradually got better as my 20s went on and when I had my first child at 26 I came off medication (which I had been on and off for years), stopped working (as I was always only in pretty horrible min wage jobs having dropped out of uni after a year, and the pay wouldn't cover childcare) and basically have been really stable ever since. I have 2 children now, work part time and keep my life very organised with minimum stress (especially external stress from things like having to be around difficult people at work).

Basically I have wondered for a long time now if I was misdiagnosed with BPD, or if it has got better? Is it even really "a thing" at all or just something young women are (were?) labelled with when the Drs can't think of anything else.

I know no-one here can diagnose me, but I have strong suspicions that I am actually neurodiverse. Some of these reasons are: not fitting in with other kids from a young age, being very skilled in some areas but terrible in others, needing a routine.... I could go on and on but suffice to say I have thought about it a lot and the traits were there from childhood. Also, most notably - my older child who is very like me as a child (hyper verbal, inflexible, no friends, extremely logical), has a diagnosis of ASD. My other child is waiting for assessment. One of my parents also has very obvious traits.

I also don't think that I fit a BPD profile. I perhaps did when I was younger, but those symptoms I did have overlap a lot with ASD or are linked to being pushed into mental distress through not getting appropriate support. One example is that I've been in the same relationship (now married) since I was 17 - it's often seen as a BPD trait to have unstable relationships but I've never had that, at least romantically. I do struggle to make friends and when I was younger I would get really upset when they would "dump" me or fall out with me, but nowadays I don't really bother to get emotionally invested, and I do have a couple of friends I have known since my teens. Also BPD can be strongly linked to childhood abuse, when I was being seen weekly the Drs were utterly convinced that I must have been abused as a child and was just lying when I said I hadn't been (my childhood wasn't perfect but there wasn't any sexual abuse as far as I remember).

I'm not currently "in" the mental health system but have wondered a lot over the past few years about perusing an ASD diagnosis. I'm not sure if me doing so would be a good use of NHS funds though as it doesn't really matter any more, I just live how I live. I do have one Dr letter from the late 00s that says I have "traits of Asperger's" but no more formal assessment was ever done, and I don't know if there was even a pathway for adult diagnosis 15 years ago.

So basically I'm wondering if anyone else has had a similar experience, or general thoughts on the topic - I'm interested in MH and how we classify things that are often basically unprovable, just observed.

It's food for thought definitely, especially given your children's diagnoses/assessments, and what the one doctor wrote about 'traits'. Is it ever something you've discussed with the HCPs assessing your children?

Have you ever tried doing the Cambridge Autism Quotient test? That could help you decide if it might be likely that ASD is a factor for you, and help you with requesting a diagnosis if you'd like to do that.

https://www.amazon.com/Women-Girls-Autism-Spectrum-Disorder/dp/1849055475

Won't necessarily get you closer to a diagnosis but is fascinating to read.

Back in a previous life when I was working in social research, it was quite common to hear the phrase “people with a diagnosis of Borderline Personality Disorder”: it appears relatively common for people to disagree with their diagnosis or not feel it totally fits, and to explore commonality of experience with other people given the same diagnosis rather than allow the diagnosis to define you.

I also think it’s reasonably likely that some of the symptoms and behaviours which led to you receiving your diagnosis may have abated over the years and that you’d no longer meet the diagnostic threshold for BPd (or indeed anything at all.) BPD has always been a bit of a catch-all for a range of behaviours which can’t easily be packaged up and called anything in particular.

Very interesting to read, and I think your theory (neurodiversity not BPD) sounds pretty plausible. We know girls and women have been underdiagnosed for a long time and diagnoses of ASD were very rare at that time. And I would have thought that BPD traits would continue more over time than you suggest.

Get yourself on a waiting list! I think a diagnosis could help you understand yourself and your own history, and maybe help you over time understand and sensitively parent your own children.

Thanks for your reply. I have done that test before, along with several others, and always score in the "autistic" category, often by a good margin.

I don't feel like a diagnosis would make a difference now compared to what it could have done 20 years ago. I might have been able to make much better decisions and discovered some peace instead of being in extreme mental distress for the best part of 5 years. But it is what it is.

I suffered an ED in my childhood and teens, hospitalised for a few years, was on meds from 15. I had my oldest at 19 and was fairly stable. I spent years on and off different meds for depression/anxiety. I was diagnosed with PTSD and underwent EMDR twice, medicated again.

As an adult, I took on a law degree alongside working full time raising 5 kids. The stress tipped me back into an ED, I ended up back in services and eventually inpatient. It was only at this point I was diagnosed with EUPD (BPD). For me, the diagnosis actually fits and was a relief.

This is a valid point and one that I wonder about, because honestly I would be happier to think of myself as having ASD than BPD as BPD is so stigmatised. I don't tell anyone irl that I have a diagnosis of it, whilst I would be comfortable telling people about ASD. BPD makes me feel like I'm being told I am a fundemental failure of a person, and very ashamed. Though I would NEVER think that about someone else diagnosed with BPD, and in fact have 2 friends who are diagnosed with it who I love very much (all my long term friends are either neurodiverse or have BPD) and admire that they can be open about it. Their lives have continued to be chaotic way into/beyond their 30s in a way that mine hasn't.

I wonder if a lot of people feel BPD doesn't fit because it's a misdiagnosis, or because like me they feel ashamed of it. Not that anyone should.

This is interesting, thank you. My friends who have BPD diagnoses also feel it fits them and it was a relief for the one who was diagnosed in her mid30s.

From what I understand it is rather rare to score in the 'autistic range' on the Cambridge test and not be 'diagnosable', so to speak. I found it eye opening when I learned that the average NT results were in the 15-17 out of 50 range!

Sarah Hendrickx also says that where people have done the research and concluded that they are likely to be neurodiverse, it is quite likely that they will receive a diagnosis if they seek one.

I hear you that a diagnosis might not be especially helpful at this point in your life, but would it be reassuring to have a way to talk about yourself that really fits you?

I've got similarities in my history (bipolar tho not bpd) and did the first part of my asd assessment this morning.

The psych spent most of the time focusing on the bipolar diagnosis and symptoms and wanted to see my notes from when it was diagnosed - it felt like she was reluctant to contradict any previous diagnosis so it's an uphill battle to find out what's actually wrong.

I asked her how she told the difference between different symptoms/traits/diagnoses and she admitted it was hard as it relies on her interpretation and me being able to prove what I was like as a young child (which I can't as I'm much older now).

As someone who ran an autism diagnostic team before retiring it is common for women to be given a dodgy dx when in fact they should have had an autism dx.

Dodgy dx should read BPD!

Op, it could very easily be wrong.

The diagnostic criteria for all PDs are deeply flawed and there are new alternatives now that are getting more used. Interrater reliability for diagnosis of PDs is quite low.

So many mental illnesses have overlapping symptoms and characteristics that often the diagnosers biases or training or experience leads them more in one direction towards one diagnosis than another. Given it is based on symptoms descrition and presentation and then clinical judgment, it isn't necessarily straightforward, epecially during the key developmental stages of about 15-24 (youth) when identity is developing.

There is a lot of diagnostic bias - especially when you add age, gender, SES, race, ethnicity and to the mix.

I have seen so many patients whose diagnosis changed with time and different psychiatrists

Posted this somewhere else this morning. Might be of interest

https://www.rickhanson.net/being-well-podcast-understanding-borderline-personality-tendencies/

I just took that test someone linked above and scored a 9.

I have ADHD though so I am also not NT in taking it!

You mean the Autism Quotient @Freefall212? I guess strictly speaking I should have said the average Non-Autistic score is 15-17. Sorry! The test is only aiming to tell us something about Autism and not about ADHD/ADD etc.

Lots of experts around autism in women believe that girls are often diagnosed with BPD, social anxiety or depression before they finally get an ASD diagnosis.

Yeah this is really common. There's lots of women who, entirely coincidentally of course, happen to have diagnosed-autistic brothers and diagnosed-autistic children (and as we know, there's a strong genetic component, but all these autistic male relatives can't possibly have any relevance), but who themselves get given the sticky, stigmatising BPD diagnosis.

I've personally known quite a lot of women with a BPD diagnosis who either had diagnosed-autistic male relatives, or who later had their own diagnosis changed to ASD, or both. I'm talking about in my actual real life, here in meatspace, including women I knew via college, women I knew via university, women I knew via local support services, plus myself and female family members, with these BPD diagnoses being given right back to the 70s and up to the present day. That's before even getting into the number of women I've met online matching this pattern.

My personal hunch is that BPD per se either doesn't exist, or is quite rare and maybe a form of (possibly heritable) neurodevelopmental or mood disorder in itself, and either way shouldn't be dumped in the PD category.

My theory is that most (or maybe all) of the people with the diagnosis are either:

• Victims of prolonged, serious childhood abuse, or those with other significant childhood trauma, which required them at the time to learn ways of being in the world and interacting with others that don't work so well as they continue into adolescence and adulthood, and which has also pushed their developing adolescent brains along this alternative, post-traumatic pathway. Some of these people may get a cPTSD diagnosis now.

I think that some of the BPD stigma (which is far worse from mental health services than from anyone else, including other healthcare workers and members of the public) is likely to smoothly slide over to this new diagnosis, unfortunately.

• Autistic teenage girls and young women struggling to adapt to the increased demands of adolescence or young adulthood. They might be capable of disguising their autistic traits sufficiently well to fool those with a stereotypical understanding of autism, or their traits might manifest in ways which aren't familiar to those more used to diagnosing autism in either profoundly-affected autistic children, or in boys and men whose traits more closely resemble in style or content the examples of autistic traits given in medical texts. Their difficulties with understanding and interacting with others, and with recognising, understanding and communicating emotional states, are interpreted through a BPD lens which transforms difficulty with communication and attempts at self-regulation into "manipulation" and "care-seeking" (not that this terminology is okay to use about those without autism either, obviously).

Additionally, these young women's autism leaves them particularly vulnerable to abuse, which may further complicate the picture. I've occasionally seen people describe BPD as something like "the female autism", but I don't think this is helpful, as it doesn't distinguish between the different types of people, autistic and not, who get lumbered with this catch-all BPD diagnosis, it risks dragging the BPD stigma over to the ASD diagnosis (if you're female), and it doesn't recognise that while some of the externals may be different on average between males and females with ASD, the underlying differences and processes are the same, and many women and girls with ASD will have few of the features which get some autistic girls and women misdiagnoses with BPD.

• People, particularly young women, with more complex psychiatric presentations — perhaps an unusual subtype or presentation of bipolar disorder, or a lesser-known problem like pre-menstrual dysphoric disorder or suicidal OCD (i.e. OCD where the intrusive thoughts are about suicide, not where the person has OCD and is suicidal) combined with a personality the psychiatrist doesn't like, or churlishly failing to immediately recover from a mental health problem despite having been given the standard treatment, or a neurodevelopmental disorder like ASD or ADHD plus a mood disorder/psychotic disorder/eating disorder, or really anything that's complex and difficult to tease out, will take time and effort to diagnose and to trial different treatments for, and doesn't neatly fit any particular category.

The BPD category, especially as loosely interpreted by many mental health professionals over the past half a century, is elastic enough to fit almost any patient, especially those annoying female ones that you want to warn other professionals away from, and it's much easier than working out what's actually going on. And the moment you discover that a young female patient deliberately injures herself in any way, you can stop having to do any pesky thinking and pop her straight in the BPD box.

• Teenage girls going through a difficult adolescence. No, they're not supposed to diagnose personality disorders before 18. Yes, they do it anyway, and maybe stick "emerging" in front of it if they're sticklers (in which case "emerging" seamlessly morphs into "established" on the 18th birthday).

Yes that one. I realized it was for ASD but I just mentioned the ADHD as mine was even lower than the average NT score!

Mumsnet, PLEASE stop arsing about with the formatting any time I introduce items in a list using dashes, and please stop imagining you can apply some kind of shitty auto-formatting that'll magically work with what people have typed and produce something that's better than what they actually intended. You're not making it look better. You're making it look worse. You're making something that I laid out in a particular way FOR A REASON into an unpredictably-mangled, wonky wall o' shite. Stop it.

That is very interesting. I wonder how much research there is about how ADHD-but-not-autism might show up on the test?

Anyway.

In case it's confusing, in my post of 13:36, once the list starts, every lump of left-justified text actually belongs snuggled up with the bullet-pointed paragraph immediately preceding it.

The next section on the list only begins when there's a new bullet-pointed paragraph.

It definitely would be reassuring. But I don't think it's a good use of stretched NHS resources (for me personally, not saying it isn't for others! Just that I personally would feel guilty). I'm also afraid of them not wanting to go against previous diagnoses as a PP mentions. I could go private I guess but it'll take me a long time to save up.

This is interesting, about PDs in general. I would really like to learn more about how the concept of them came about. What is "Interrater reliability"?

This adds a bit more weight to the BPD diagnosis that I have as the therapy I did eventually get was about distress tolerance. And I would say that I still have that as a problem as I will massively avoid things that I find stressful, even if they seem really minor to other people - but whether that's a BPD thing or an autistic thing is hard to say. I also had/have a lot of distress because of things not going to plan, which I think is more of an ASD thing.