help with thinking about diagnosis, please

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I forgot to update about my pre-assessment! So again, I'm writing this process up so that other people can see how it went for me and maybe alleviate some worriedness for anyone else...

So, my pre-assessment was carried out by a nice lady. I'd been so worried about it all and so "tight"-feeling about it, and had to travel to a place I'd not been before (on a bus, I hate buses, they are the most uncertain form of public transport...) and so when I finally got in to the building and sat down in front of the lady I was unable to speak. Oh dear. But she was really very nice and it was great to not have to be in a place for once where I *HAD* to make eye-contact and I *HAD* to speak or I *HAD* to make sure I didn't cry. So, that was good.

She told me she'd put me through almost immediately based on the forms I'd already sent through, so that helped take off some pressure. We spoke a lot (when I relaxed!) about the mental health system and how she'd seen a lot of adults coming through recently who, like me, had been back and forth through the MH system and nothing seemed to "fit" or "work" and, to be honest, most of us felt like we'd baffled psychiatrists or doctors. I felt like I've frustrated psychiatrists a lot, and it's a big source of worry for me........ like, "oh my gosh, I can't even be mentally ill in the right way."

Anyway. The best thing was, she gave me a choice of my clinic, and one of which was the Swindon clinic, which she said specialises in women! I can hardly believe my luck! Oh, also, the lady said that if I came back from the assessment without a diagnosis of ASC, then to contact them again and see if they can help me out somehow. So, I thought that was very nice.

So that's where I'm going. I had a lot more forms to fill in from the new clinic, and I also had a form that I needed to send to a parent. So... I broached the subject with my parents, and asked my mum to help out with things that I was too young to remember. Apparently I used to lecture the GP when I was about 4 or 5, for instance, which I had forgotten.

My assessment date is really really soon! I was so shocked! It said on my details sheet that I should expect no longer than about 8 months... but it's in a couple of weeks' time!! ! I am so shocked!! ! And a bit nervous, of course. (Well, very nervous). It should last about 3 hours, says my sheet. I can take a parent (or assistant, or etc.) but I don't want to do this because whatever the outcome I think I am going to deal better with it on my own for a short while.

Well... I guess I'll update again after my assessment. I hope anyone still reading this might find the information helpful.

Hello everyone I had my official assessment yesterday. The results are.... officially ASD! I am ecstatic, really. I feel like I've been given a second chance at life.

I would love to say a big THANK YOU to those who commented earlier on in this thread. You really helped me out and I feel very grateful for that.

I'd like to detail how things went. I hope it may be helpful for those who are going through/trying to access the same thing - it's my big wish to help others if I can. I'd like to restate that my appointment was in Swindon (SEQOL) and that I had picked that because they had an interest in adult women. I was very happy with how the whole session went and I don't know how it could have gone better; I felt very comfortable (though, obviously nervous) at every stage and the two women who ran the session were really wonderful.

My appointment was for 10.30, and I think we finished at around 2.30, so it was quite long. (We did have a lunchbreak!) I was seen by a psychologist and an autism specialist. The room I was seen in had it curtains drawn and the lights off (though it was still full of natural light) and it was small, and warm, so I thought that was very caring (they did mention they'd drawn the curtains for sensory reasons). I was told that there would essentially be three outcomes: "Yes", "No", and "Needs more research/multiple sessions" in order to decide diagnosis. I was asked thoroughly how a diagnosis would be of benefit to me, and also how I would feel/react if they decided I was not AS, which I thought was interesting.

Firstly, I had a complete psychological and developmental history taken. I'd already provided a loooooong set of notes on my personal history, with subheadings (i.e. "Employment", "Family," "Psychiatric history" and so on). They had read it all but they wanted to see how I actually responded to what I was being asked and how I phrased things specifically. It was a little distressing because obviously we had to cover abusive/bad memories and so on, but the psychologist was very lovely and did not allow me to dwell morbidly on anything and helped me along when we touched on things that I clearly found very difficult. Both clinicians were taking notes the entire time about how I as responding and my physical reactions to things, I guess. At no point in any of my session were words "put into my mouth" or any suggestions given, or anything like that. I was never made to feel stupid and everything felt very safe and I felt okay talking.

We had a lunchbreak, where I could have gone outside if I'd wanted to but I chose to stay in the office room. When the clinicians got back, we were to do some "brain" tests, and go over the ADOS-2. The tests were first. (***If you don't want to read about the tests and my reactions, stop reading now!***) The first one I did was a puzzle game, where I had a board with an outline and foam pieces, and told to fill in the outline with the pieces, and that I was told to ask if I "needed anything more to complete the puzzle." I could see she was clearly holding two extra pieces. I tried to complete the puzzle but realised I needed those two pieces. I stared at the pieces until she asked if I wanted them, and I nodded and was given them to complete the puzzle. I was also asked if the completed outline reminded me of anything (I said it reminded me of Minecraft......) Second, I was given a picture book (a very lovely one, actually!) and told to narrate what was happening page by page. I did not do very well on this, on reflection. I think I was supposed to make it more of a story... like story-time when you're read to in primary school... I just described what was happening and picked out interesting details, haha. I also analysed the technique used to create the illustrations... though I feel I was given some leeway for doing this because it's my actual job in real life, haha. Next, I was given a picture and told to say what I saw. It was a picture of North America (minus Canada) and had lots of landmarks drawn in over it. I wasn't really sure of what this test was for. I just spoke about what I was seeing in the image, and then we spoke a bit about foreign trips. Lastly, we did a story-making game; the clinician had a tub of items (a ball, a toy car, a wooden block - things like that) and picked out 5 items, and then made up a story about a man called Dan, who was represented by the ball, and who did a couple of things on his weekend off, including going to the leisure centre, which was represented by a large feather. I was asked to do the same, and I picked out some items and tried to make a story out of them. I needed a lot of help with this for many reasons, but eventually I think I managed to do an okay job. It was hard though, and I wanted to just copy what she had already done, and it was very difficult to separate out items from their representation. For instance, I had trouble thinking of the feather as a leisure centre when she had done her story, haha. I felt a bit silly because it seemed like an easy task!

(I'm done writing about the tests now!)

We went through the ADOS-2. The questions were very hard, and I forget sometimes how bad I am at actually describing certain things. It didn't take very long, and them immediately after this they said they had feedback to give me. I'd assumed they'd go off and discuss things, but this did not happen; they asked if I wanted to prepare myself at all, and I said no. They said they were very comfortable giving me my diagnosis of ASD: Aspergers subtype. I was a bit overwhelmed (because I thought they were going to say "no", based on how quickly they wrapped things up!) but they were really nice, and we discussed what was to happen next: a follow-up meeting, a needs assessment, and also I will get a big report of my session. It'll be really weird reading a review on myself!

Anyway. A couple of things that stood out for me was that the clinician who went over the ADOS-2 with me said she could see signs of clear development and things I was still working on. For instance, eye-contact. She said this was key as ASD is developmental... as in, it develops! It struck me as important because I see many anecdotes of people who get brushed off for e.g. "being able to make eye-contact" NOW, whilst ignoring the fact that it's something they've had to really work on.

The other thing was my psychiatric history. The psychologist, in my opinion, seemed a little despairing of the mental health system in the UK, especially with regards to women and girls on the spectrum and the fact that they keep on getting missed and dismissed and misdiagnosed and, really, have a lot of harm done to them with just being messed around.

That's about all I can think of to write. If anyone wants any clarification on any of the items/processes, then please ask and I'll do my best to help.

Btw Oxford has a quite a good reputation. It was one of the first counties to do diagnosis and research has several related organizations.

Most people think Cambridge becuase of Simon Baron Cohen.

That's very interesting and good to know. I was recommended Swindon, by Autism Oxford actually, because I think they had more interest in women at this moment. Perhaps That's a very recent specialisation for Swindon. But it's good to know Oxford is also very reputable. Thanks for commenting!

I say "go for it." A real professional won't assume that you're being "manipulative." If you are, in fact, autistic, getting a diagnosis will mean that more accommodations and resources will be available to you. Even if you're not, you'll be done with asking yourself if you have autism.

Thank you Pergerlady I did in fact go for it, and was diagnosed with ASD. I was very happy that I hadn't been wrong in pursuing it.

I hope some of my posts might help those who were questioning it themselves

Your description of the ADOS-2 module 4 (adult) test was very accurate. Congratulations!

I have read in a few research papers that there remains some confusion about accuracy among clinicians and diagnosticians between ASD and BPD. It might be that a better diagnostician might overrule your BPD if that is what you seek. On the other hand, if your new ASD diagnosis answers only some, but not all, of your doubts, you might see valid reasons for your BPD diagnosis.

Thank you AspieUtah

I possibly should have clarified again in my post about my assessment, but I had my "mystery" BPD diagnosis.... er, well, I can't say "removed" because, as it turned out, it was never on my records. It had been something a GP had mentioned casually to me once, and I had no context for it at the time (i.e. who, what, when, or why I'd been diagnosed with it).

I had the advice of my last therapist that I should ask my current GP to remove the diagnosis from my records as she felt it was not a good fit for me. When I went to have this done, we discovered it had never been there....! Or at least, there was no record of it that we could find at all.

When I had my assessment last week, the psychologist confirmed that BPD was not a good fit for me, and suspected the GP had been doing a *VERY* poor job with me at the time, and had simply assumed this was the case because of my self-harm issues.

At any rate, the issue is more or less solved for me, now. Though I remain particularly angry at the old GP who had me thinking I was diagnosed BPD for several years, and led to me not seeking out further treatment because I was too afraid! It had thrown me into turmoil for several years because I could not match myself up with any of the symptoms other than self-injury. I had trusted the GP...

I'm In the UK and I did not need to visit GP. I self referred to my local ASD charity and they gave me a pre diagnostic assessment. They referred me to Psychiatrist specialising in ASD. It was a 5 month wait which isn't at all bad for NHS. I am in East Lancashire. Why don't you check out for charities in your area on Google. Good luck

Hi LilyStewart, do you mean for an ASD assessment for myself...? I've already had one and been diagnosed with ASD but thank you for your advice.