Published on 12, July, 2020
Hi everyone
Im 64 and just this month been confirmed autistic with the diagnosis after 8 hours assessment over two days (NHS). It’s not unexpected but huge to take in. My situation is complicated by comorbid bipolar affective disorder dx in 1998, but more relevantly it feels a personality disorder which is in the the process of being assessed. My psychiatrist has put EUPD on my records and I’m already underway with long term 1-1 psychology but the dx doesn’t seem to become official until the psychology team confirm the psychiatrist’s opinion.
I’m really struggling to find trustworthy advice and a calm non judgmental online community, I do have a very good real life support network with plenty of good friends and a loving partner but none of them are experts or with lived experience of autism. So there are several particular things I would like to learn about and maybe discuss here as follows:
Nightmares: I get these most nights and they are destroying me I have c-ptsd which is likely the root of the probable PD and definitely the cause of the nightmares
Language: I am coming to understand that some language is unacceptable to the autism community but am really pretty much in the dark so guidance would be appreciated. Id add though that as a writer with numerous books, in The Indy, a local newspaper column plus countless appearances in magazines etc I am very defensive about my right to use the language I choose, though do appreciate that appropriate for audience is critical
Comorbids: As I said above I have a number of comorbid smi’s and would like to chat here with similar others, particularly anyone with a PD as I learnt in my recent stay on a psych ward that it was the interaction between the ASD and the PD which led to my latest suicide attempt
Thanks for reading
E
Hi, Welcome to the community :) It's brave and generous of you to share all this. Sounds like things are indeed very complex and tough.
I don't have PD, so apologies for not being able to help/advise there. I also get frequent nightmares and know how tough this can be. I haven't found anything that helps, but sending lots of solidarity.
In terms of language, (hi from a fellow artist by the way!) I think the main thing in the community is that most of us prefer identity-first language, (I am Autistic) rather than person-first language (I have Autism, or I am a person with Autism.) The latter tends to be used by non-Autistic researchers and other professionals, but it implies that we somehow 'carry Autism around with us' like a virus or other illness. For many of us, that's not how it feels, and we're trying to move conversations on from such pathologised views.
The diagnostic criteria's phrasing is also very pathologised, and the community tends to use things like 'special interests' rather than 'repetitive or restricted interests' and 'stims' rather than 'repetitive or restricted movements.' Those criteria are very deficits-based, and recognising our strengths by challenging such language is arguably really imimportant.
I hope that makes sense and helps a little. Messages on here aren't very accessible for me right now, but would be great that talk further in this thread if there's anything else you'd like to discuss. I'm glad you have a good support network, but connecting with the community is invaluable, at least for me :)
Thank you so very much, that is incredibly helpful and I will do my best to use this approach. Interestingly many, the majority probably, in the bipolar community rage against the identity first approach and it is frowned upon to say “I am bipolar” and we are expected to “live with” or “have” bipolar. I have never subscribed to their perspective and have always been clear on the identity first approach, though I didn’t understand the term then.
At present the nightmares are probably my biggest problem, there was a dreadful one again last night, it was all connected with conflict, it’s the emotions and feelings in them not their imagery which is destroying me. I’ve just made some notes about this for Monday’s psychology appointment. In the past they have pretty regularly spiralled me through anxiety into full on panic resulting in dreadful interactions with 111/999/paramedics/a&e but thankfully I have the most loving and caring partner now and she is incredibly intuitive about how to help in these (and so many) situations so last night after a couple of hours close to her I was able to detach from the nightmare and sleep a little, but only maybe three hours.
I’ve already appreciated the pathologising you refer to and feel that it is wrong.
Im at Cats Protection today where I volunteer as a kitten socialiser. I have a gift for this it seems, well I know I do, and having been promoted into maternity maybe six months ago it’s even more amazing than ever. The wing is just calm quiet beauty, such low stimulation, except the purring
E xxx