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Original poster

BPD diagnoses in the 90s/00s and neurodiversity

30 replies

BetweenWhatAndWhat · 25/04/2023 11:56

(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.

OP posts:
Original poster
BetweenWhatAndWhat · 26/04/2023 13:55

HeadbandOverMyEyes · 25/04/2023 13:36

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).

Thank you so much for this post, I found it absolutely fascinating and really enjoyed your writing style (despite the formatting problems). Are you neurodivergent yourself? I totally agree about the cPTSD diagnosis, I think that was why they were trying to push me to "confess" to some deep childhood trauma but there wasn't any (like I say, not a perfect childhood, but nothing like the level you would expect to lead to those symptoms). I do think that had I presented with the same symptoms as a young male, I would have been far more likely to get an ASD diagnosis. Interestingly the only male I know with a BPD diagnosis also has two children with ASD, so I wonder if his was wrong too!

OP posts:
Jellycats4life · 26/04/2023 14:00

I’ve seen a lot of discussion in recent years that, due to the way autism was viewed and diagnosed in the past, many man women were given BPD diagnoses when they were autistic all along.

Makes sense doesn’t it? Diagnostic bias, as a previous poster has mentioned. BPD is seen as a largely (but not exclusively) female disorder, and autism the opposite.

Jellycats4life · 26/04/2023 14:00

MANY MANY women, not many man women FFS. Wish there was an edit feature (no, I’m not paying for it)

Freefall212 · 26/04/2023 14:08

BetweenWhatAndWhat · 26/04/2023 13:49

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"?

Show quote history

Interrater reliability is how similar different people would assess and diagnose the same person. Usually they use case vignettes to do this. So they would give the case study of a patient to 100 psychiatrists and ask them to diagnose the patient based on the symptoms and history and story in the case. Low interrater relaiability means they don't often come up with the same diagnosis. High interrater reliability would be if they did mostly come up with the same diagnosis.

PDs have been talked about since early philosophers started writing about people! They started to categorize people based on various traits and gave those categories names (the sad one, the mad one, the irritable one, the thankless one, the dramatic one) etc. Skipping ahead to the early 1800s they started to look at people though the lens of normal and abnormal - a very subjective distinction! And then within abnormal they further categorized what made people abnormal. At the time they attitbuted personality abnormalities to various things - brain deformities then poor parenting etc.

The use of the word borderline was first used by a pyschiatrist in the early 1930s who saw patients who he said were on the border of psychosis and neurosis. They functioned too well to be psychotic but they were all over the place - varying from functioning well to functioning poorly with various symptoms that seemed to come and go. Since they didn't really fit any of the categories of abnormal personality at that time, he called them borderlines meaning they had charateristics of abnormal categories but were on the border as they weren't a good fit for any one category.

The most recent thinking is to do away with the current diagnostic criteria for all personality disorders all together and to use a trait rating system for personality in general where anyone struggling has an assessment that would assess where they were on each of about 11 personality traits that are known to be disordered for some people. Treatment would then be structured to address the traits that were the most problematic with the lowest ratings.

HeadbandOverMyEyes · 26/04/2023 16:06

BetweenWhatAndWhat · 26/04/2023 13:55

Thank you so much for this post, I found it absolutely fascinating and really enjoyed your writing style (despite the formatting problems). Are you neurodivergent yourself? I totally agree about the cPTSD diagnosis, I think that was why they were trying to push me to "confess" to some deep childhood trauma but there wasn't any (like I say, not a perfect childhood, but nothing like the level you would expect to lead to those symptoms). I do think that had I presented with the same symptoms as a young male, I would have been far more likely to get an ASD diagnosis. Interestingly the only male I know with a BPD diagnosis also has two children with ASD, so I wonder if his was wrong too!

Show quote history

Thanks, that's really nice of you to say! 😄 I tend to get a bit wordy and have to slap myself on the wrist sometimes Grin

As I said, what I wrote is just my personal opinions about this diagnosis, based on people I've met, things I've read, and my own experiences, rather than anything scientific… I know there are people who do strongly identify with the diagnosis and find it helpful to them, or have received treatment off the back of it that has helped them. I wouldn't want to take that away from those people, but I do feel the whole construct needs a massive overhaul, as so many people have been damaged by it.

Yep, my current (and also, now, long-term and stable) diagnoses are ASD and bipolar disorder. (Plus, more recently, ADHD, but for me it makes more sense to just think of those difficulties as part of the ASD.)

I first got a BPD diagnosis at age 15, though apparently some doctors briefly considered autism (this suggestion was seemingly shot down by a psychiatrist with Views about overdiagnosis of autism). The combination of ASD, bipolar disorder and adolescence did, to be fair, look superficially similar in some ways to how the BPD construct is described, albeit without that apparently important "fear of abandonment" thing. With the lithium controlling my bipolar disorder to the point where nobody would now guess I had a mood disorder, I don't really look much like a "BPD" profile any more.

I found that when I went to BPD groups, I didn't have much in common with many of the others there (apart from another young woman who also later had her diagnosis changed to autism), beyond the surface behaviours doctors were pointing at — things like multiple suicide attempts, or past self-harm. The internal experience, the reasons behind the things we were doing, the patterns of and reasons for mood changes, the way we expressed things, all these things seemed very different — not just between me and everyone else, but between other group members, too — and I couldn't relate to much of what people described. Quite a few of the the group were open about the fact that their main problem was dealing with the impossibly hard task of managing the psychological consequences of chronic abuse (there may have been others who chose not to disclose, I don't know), which of course mental health services also tried as hard as they could to elicit from me (unsuccessfully).

But in bipolar disorder groups and when talking with others with ASD, it was a more like a constant "Wow, you too? Same!" in all directions. Not that everyone's experiences are identical, but there are a lot of points of similarity — a similarity of difference, if you like — such that someone can talk about some unusual situation they're in that's linked to their ASD/bipolar disorder, and everyone in the room nods because they've been there, or somewhere very like it. BPD groups never felt like that. They seemed like a disparate group of mostly women, each dealing with distressing problems, taking turns speaking and trying to support each other, but not actually describing the same type of thinking or the same types of feelings or a similar set of underlying issues (outside of being humans, experiencing suffering, and being under mental health services).

I couldn't possibly comment on whether your friend who has produced two children with a heritable neurodevelopmental disorder affecting communication, thought processes, sensory perception, emotional regulation, and social interaction, and which has been poorly recognised in atypical cases and in adult services until extremely recently, could potentially have been misdiagnosed…

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