Neurodiversity support thread for women with suspected, diagnosed or self-diagnosed autism, ADHD and other NDs #18

[PolterThreadStarter]

As usual, latest support thread.

Welcome

I did say I "want to trust" the professionals... im not certain I actually do.

I want to post an entirely different thread about my arse hole brother who is currently seeking/thinking about a diagnosis, but I think I'm too angry. It would be nothing more than an extremely angry rant.
Do threads in the other place not come up in active and disappear after 30 days?

I think it's OTBT I want. A quiet corner where no one need reply or ever read it.

No, I totally get you MrsNutella. I wish I felt that way too.

Yes OTBT is like that although someone might read it. I'm sure there are sites where you can submit anonymous rants to just be lost in the ether in time :) But OTBT is decent enough on MN.

Thanks ratty!

I think it makes sense that a kid might come across as more defiant at school, because school is full of silly blanket rules which don't actually always make sense and people who don't know or care why those rules are implemented, whereas home can be a bit more flexible and there's much more opportunity for dialogue about why rules exist and any inconsistencies to be ironed out etc.

See from what I've read BPD sounds different from ASD, although this may be me being ignorant. As I've mentioned before, my friend got diagnosed with BPD and has an autistic brother... but then again she also has PTSD so I just don't know.

To a MH professional without experience of autism in adult women, it's easy to think it's BPD when it's actually autism. I had a brilliant (dreadful) list of how to spot BPD for non-MH professionals and every single trait could also be explained by undiagnosed autism. It really upset me that the first thought of most MH workers is personality disorder not neurodevelopmental condition.

It's possible that genes and environments that increase the risk of autism also increase the risk of BPD - but that wouldn't explain away the number of women I've known who had BPD diagnoses removed when they were diagnosed with autism, and it was realised that the "BPD" traits they displayed were things which could be entirely attributable to their autism.

Very good points ratty. Misdiagnosis of any sort is very worrying.

But then I suppose that because my friend has PTSD that could explain things, to a point.
For a MH specialist to have knowledge of autism, wouldn't that sort of imply ASD as being a MH disorder, when it's not? Or am I being dumb? Because the MH person would focus on mental health disorders, not developmental ones...

My belief is that when someone presents with behaviour/feelings outwith the norm, the first thing to be checked should be physical health/conditions, then neurodevelopmental/neurological and then mental health.

Psychiatrists deal with a lot of things… learning disability, dementia, autism, all kinds of neurodevelopmental and degenerative and physical problems. I think it's probably a question of history…

MH professionals absolutely should be trained in autism even if it's not their specialism or diagnostic realm.

Yep Polter - my grandmother might've lived longer if her symptoms hadn't been assumed to be down to her bipolar disorder (I didn't know her; she died before I was born).

There's a wonderful Dutch psychiatrist Patricia Van Wijngaarden Cremers who's done some excellent work on this. She works with some of the most complex women with serious MH, substance use and eating disorder problems and has found that very often it is autism underpinning it all, and only when you identify that can the women make progress.

Diagnostic overshadowing ratty

From what I know autistic women tend to fall into 2 camps. The first are the authority driven type(like me) we are very rule driven and can't break rules or disobey authority. We often get frustrated by it but we abide by all the rules because the need to do so outweighs anything else. If we break a rule it feels chaotic and wrong, like the world is off kilter. Rules help us feel in control and manage the chaos of the world. The second are the pda group who are the total opposite. They actively seek to make their own rules. They feel out of control obeying authority. Doing their own thing is what keeps the, feeling in control.

I suspect the the pda type autistics are the most commonly misdiagnosed as BPD.

I went to see Maxine Ashton and now have an official diagnosis! Autism Level 1 (or Asperger's as everyone else calls it)

It is a weight off my mind. I did discuss that if there was more research in how Asperger's effects women as they age I would be interested in participating. As far as I know there is very little data on women, particularly mothers and elderly women.

I suspect my DH is also on the spectrum - this is quite common in fact. I cannot see myself being in happy relationship with most NT males I suspect.

Sometimes I wonder if the reason women people with BPD are so stigmatised is because it's more often diagnosed in women.

Also on a philosophical note, why are personality disorders treated so much worse than neurological disorders? We don't know the cause or the brain structures or reasons of either. One just sounds better than the other. Generally a disease/disorder goes from psychiatry to neurology when some physical cause or consequence is found. So epilepsy was a highly stigmatised psychiatric disorder for a long time, until what was happening in the brain was found (cause still often unknown). Now it's a neurological condition, which is not quite so heavily stigmatised.

Sorry, I used to wonder about this a lot in class. I absolutely think it's important that diagnosis is correct because the way people are treated is completely different.

Agree entirely will all the above.

For me there are three main issues.

1. Is BPD a real thing, a valid and useful diagnosis, one that describes a defined problem and guides effective treatment?
2. Are people with a diagnosis of BPD being treated with respect? Should they be?
3. Are people being misdiagnosed with BPD?

IMO the answer to 2 is no, they're not treated well, and yes, they should be.

The answers to 1 and 3 are linked. I'm not sure if BPD is a real, defined thing (and have a suspicion that people diagnosed with it are a motley bunch of autistics, manic-depressives, and victims of trauma, or combinations thereof), but if it is, then it is important that people are correctly diagnosed, so that they can receive the correct treatment for their ASD, bipolar disorder, PTSD, shit life syndrome, or BPD. If it's not a real thing, then neither is misdiagnosis, and the label needs to be binned altogether.

What always remains constant is that people with BPD should not be discriminated against, invalidated, retraumatised, poisoned, ignored, laughed at, avoided, gossiped about, given up on, made subject to assumptions that they are manipulative at vindictive, or any of the other things they have to suffer at the hands of mental health services.

I wanted rid of my BPD diagnosis for four reasons:

1. I'm not sure it's a scientifically-valid disease entity.
2. The diagnosis did not lead to useful treatment for me.
3. I did not recognise myself in the diagnostic criteria.
4. I was treated like shit because of the diagnosis and for selfish reasons didn't want it applied to me.

I realise that reason 4 looks a bit like throwing people with "real BPD" under the bus. But I think that some of the treatment I received was deplorable, whether the diagnosis was "correct" or not.

I do recognise that some people do identify with the diagnosis and believe that it's helpful for them in getting the right treatment. I really do.

But nobody should ignore the vast numbers of women who receive this diagnosis and have their needs ignored, instead getting shunted into PD services and required to accept a stigmatising (and very sticky) label, one which says to professionals, "You can do what you like to me and nobody will believe me or care", in order to receive "help" that often does no good and much harm.

Those with BPD are definitely badly treated. General consensus seems to be they are untreatable and there's nothing to be done! There was an AIBU thread this week with a poster asking about her DD with a BPD diagnosis and loads of people were like Kick her out and cut her off. She'll never change. Add in the fact that she had a sibling with an ASD diagnosis and possible childhood trauma..quite a people said she might well actually have undiagnosed ASD. I couldn't bear to post it was so awful.

The daft thing is that actually, nobody in my mental health team told me BPD was a lifelong disorder or implied that I wouldn't be able to get better from it.

The moment I'm diagnosed bipolar? Sorry, you're going to have to take medication for the rest of your life.

Well done Geek just be aware that she doesn't appear to be qualified to give a full clinical diagnosis and that might be problematic if you want to access statutory services or benefits. My initial assessment was similar and although I had no doubt she was right, and it was sufficient for work purposes, I did 'upgrade' to a full clinical diagnosis just to dot the i''s and cross the 't's. I didn't want anyone to come along years later and have to argue about the validity of my diagnosis.

I really enjoy reading everyone's remarks and the info about diagnosis and BPD. I think it's really nice to be able to have such an open discussion.

I don't expect to access benefits per se - it is something I can put in a tick box under 'disabilities' if you see what I mean. It's more insurance if I have to go on the jobseeking roundabout again and run the gauntlet of HR...

That's alright then, it's just something to be aware of, lives change and all that! I've had to provide formal evidence for a disability assessment for university for example, and to take part in research you often need a clinical diagnosis. For me it's about protecting myself and a strong tendency towards belt and braces