Published on 12, July, 2020
I have a diagnosis of EUPD/BPD and I have been recently diagnosed autistic (6 months ago). I started a treatment programme called "Therapeutic Community" with my local personality disorder service last week. This consists of 3 days a week at the unit for 12 months with a mixture of therapy which includes social therapy with the other 24 "members" (patients). Everyone joins in different stages, and the other members had already been in the programme for at least a few months.
I was extremely anxious for the first week, I struggled to fit in and found most other members completely disregarded me and ignored me. I had a couple of shutdowns because of the way it's made me feel, but understand it will take more than a week to get into my new routine of going and it will take time to fit in with the other members.
During one of the meetings, they spoke about their "Away Day" which they had organised way before I joined, and they had organised for tomorrow (Tuesday). The away day is an activity away from the unit, and is something the members organise twice a year. Tomorrow, they have organised to go pottery painting.
I have told the therapist that I'm not going to go as:
The therapist have said that it will be marked against me for 'non attendance', which if I have a certain level of non attendance, I get put onto a "Contract", which is pretty much a disciplinary thing.
This has caused me a lot of distress over the weekend and feel like I am being punished for something that has been sprung on me without much notice. Being newly diagnosed autistic, I am trying to figure out whether how my brain in processing all of this is because I am autistic. As the therapist will instead see it as me avoiding it because of anxieties caused by my personality disorder, rather than it being difficulties because of autism. The therapist made it clear they aren't trained in neurodiversity, they just have some understanding of it.
Am I being unreasonable for not wanted to go? Should I force myself to go and then deal with the likely shutdown after? Is it fair that it's going to go against me?
Any views welcome. I suppose I'm looking for validation to, as I feel like I'm going crazy with the way this is making me feel, and whether it's valid to explain to the therapist that I am struggling because of being autistic, but I don't want to seem as using as autism as an excuse.
I have also been through a similar service. I wasn't diagnosed autistic at te time but do feel looking back now (6+ years on) that a lot of those peopel were misdiagnosied. I feel you should be screened before going into the service for autism as treatment is a very different approach I feel!
I have just seen your comment and really appreciate you sharing your experience. I'm 4 months on and still very much struggling. I agree, I very much see many people as likely to be undiagnosed autistic and not BPD.
Ten years ago I was diagnosed with BPD. I went through the group process, and 'therapeutic community ' The whole process was hell for me. I just didn't relate to most the people in the group. Struggled with every aspect of it. I just didn't feel as if I fit in with them .
3 years ago I got diagnosed as Autistic , and the BPD was a misdiagnosis.
I think that it's very common for people to be diagnosed with Borderline personality disorder when in fact we are actually Autistic.
Looking back I feel like some of the people in my group in the time were probably Autistic as well and not BPD.
Thank you very much for the advice and links, I will look at these now! Thanks!
Thank you for your thoughts, they're much appreciated. It's a good point about being misdiagnosed, the person who assessed me for autism suggested I should be re-evaluated too. I've had such difficulties with my mental health and feel that the programme is essential, although It is still optional and could chose not to continue if needs be. But since accepting my difficulties which could be explained by autism and understanding that more, has actually helped in terms of my mood and not feeling so low. So I definitely might think about this more. Thanks again
Thank you very much, you have helped reassure me. I do tent to catastrophize over things but I will take your advice and take it as a bump in the road. Thanks again!
Thank you
Firstly are you sure you do actually have EUPD/BPD? It is not uncommon for autistic people to be misdiagnosed with BPD before finally realising it is actually autism, particularly those born female. If you do not have that condition then the therapy is going to be at best unhelpful and at worst potentially harmful.
https://embrace-autism.com/its-not-bpd-its-autism/
However if you do not agree with the diagnosis then getting it removed may not be easy. Those who have diagnosed you and are providing the treatment will not want to admit they were wrong. From your comments it would appear that they do not have sufficient training in and understanding of autism to differentiate.
There is a useful guide on this website covering the ways that therapies should be adapted to meet the needs of autistic individuals.
https://s2.chorus-mk.thirdlight.com/file/24/asDKIN9as.klK7easFDsalAzTC/NAS-Good-Practice-Guide-A4.pdf
Under the Autism Act and NICE guidelines you have a right to have mental health support adapted to your needs. It is perfectly valid to explain those needs to your therapist.
That sounds horrible to me. They should be adapting the treatment for you and they clearly don't understand autism. My thoughts are the following (but I'm nor an expert!)
Is this course essential or is it something you have chosen to do? What happens if you don't go?
BPD is often misdiagnosed in autistic people (especially women although I would guess men can be misdiagnosed too). I was originally told that I might have BPD but thankfully they decided I was autistic instead. Do the team who diagnosed you as autistic know that you have BPD and you are doing this course? Might it be worth contacting them and asking them to speak to the course leaders?
Definitely write to the course leader to explain your needs.
Maybe consider contacting your GP or using a mental health advocacy service who can help you to express your wishes and needs.
Andy said:I don't want to seem as using as autism as an excuse.
Then I would reframe this in your thinking as using autism as the reason - you have identified the connection of unfamiliarity, access and lack of notice, so put this in writing to them and say that you think being put on contract is akin to being discriinated against due to your autism.
Detail the autistic traits and why they are an issue this soon into your attendance - this gives you all the facts necessary.
The reasoning is both true and also likely to make them sit up and realise that they are actually discriminating, especially when laid out in black and white for them.
Personally I would treat it like a bump in the road - just part of getting to understand one another and don't hold a grudge and try to engage as if it hadn't happened.
Andy said:The therapist made it clear they aren't trained in neurodiversity, they just have some understanding of it.
I would suggest finding good links to explain your autistic traits so they realise it isn't just you making it up - there are some links on this site that are useful, eg:
https://www.autism.org.uk/advice-and-guidance/what-is-autism
point them to the sections on:
- Social communication and social interaction challenges- Extreme anxiety
Good luck
Write a mail to the therapist stating that:
You have an official ASD diagnosis
You do not feel safe in driving 30 miles on a moped in February.
If the therapist does not help, escalate.