ASD assessment, no diagnosis, what next?!

[AGnu]

I've just been told that the bloke assessing me doesn't think I have autism & actually it's all down to social anxiety. I'm struggling to believe that - for me it's clear that I'm anxious about socialising because everyone else seems to "get" how to do it but I don't have a clue. I feel like he saw that I have social anxiety & left it at that without really taking into account all the other difficulties I have with life in general. The assessment appointments were excruciating. Whenever anyone asks me a direct question it's like my brain seizes up & I haven't got a clue about how I'd behave in any given situation, let alone how to articulate why! I've spent my entire life trying to figure out how to be "normal" & faking it to the point where I don't really know how to take off the mask. Treating me like a performing monkey as a way to assess me isn't going to work, especially given that I'm trained to work with little children so have learnt how to do a lot of the stuff they made me do - things like telling stories, I can do that because I've been trained to, not because it's an innate ability, IYSWIM.

I'm so frustrated that he didn't seem to understand "me", & I'm angry with myself that I couldn't communicate my difficulties. He's recommended a CBT type talking therapy thing which I might try but apparently before they meet you they ask you a whole load of "on a scale of 1-5..." questions over the phone. I literally didn't hear a word he said about anything after that. I don't do phones. My brain freezes. I don't know what to do next - I've read loads of accounts from women with autism & it's the only thing that has ever made me feel like I could understand why I don't seem to be able to do things that come naturally to other people. It's the first time I felt like I could understand myself, like there was a reason I am the way I am. Now this bloke, that met me twice & asked me a bunch of questions I didn't really understand or know how to answer, has taken that away from me & I feel like perhaps I am just crazy after all.

Pff, stupid computer... What can I do now? I'll get DH to call & ask about this CBT thing for me but I really feel the anxiety is a symptom, not the cause. I feel like asking for a second opinion but I can't go through all that again any time soon. It's taken me years to feel strong enough to do it this time. I'd so hoped I'd come home today & have an explanation for the way I am.

Is this NHS? Is it a psychologist/psychiatrist? Were any diagnostic tools used (e.g. ADOS or DISCO)? Was it someone in an actual autism team?

Yes, NHS. The ADOS was conducted by a specialist nurse, with a clinical psychologist taking notes. Only the nurse was there at the second appt.

He said I would probably meet the first criteria but he wasn't convinced about the second. The majority of the assessment seemed to be focused on social issues & it seemed like my sensory issues were dismissed & there was basically no discussion about my complete inability to organise myself on a daily basis, or my echolalia, need to go the same way every journey, the extent to which every activity I do outside the house is carefully selected so it's pretty much the same thing every time or how difficult I find it when something insignificant changes. He asked me if I collect anything or have any unusual interests which I didn't think I do but I freely admit to being obsessed with Neighbours/H&A/EastEnders to the extent that the only place I can discuss it is MN because even people in RL who watch them look at me like I'm crazy when I start my verbal diarrhoea about them. I wouldn't class soaps as an "unusual interest" though, it's just the intensity that's unusual. As I understand it, it's quite common for women on the spectrum to have less "unusual" interests. I did try to talk to him about sex-related differences in the presentation of ASD but he dismissed my concerns. All the questions he asked in the second appt seemed very leading, I felt like I was just agreeing to everything when he was interrogating me about my anxiety without really having a chance to think about it.

It's just so frustrating. When I first started reading people's accounts of their lives with ASD it was like the penny finally dropped. I'd researched lots of other things, including social anxiety, previously but nothing seemed to quite cover all my difficulties until I started reading about ASD in women. I wish I'd never gone for the assessment now - thinking I had ASD helped me understand myself. Now I'm just confused.

Just because one assessor says not autism does not mean you're not autistic. Sadly many clinicians are still quite out of date with current thinking and research around more subtle presentations. Knowledge and experience varies hugely across the country.

Am I right you have an autistic child? We've chatted on the SN boards/G&C thread before I think. Having an already diagnosed autistic child means that it's more likely a parent's clinical symptoms (for want of a better phrase!) can be explained by autism than perhaps other things.

Do you know what diagnostic criteria they are assessing to? DSM5 is the first criteria that explicitly states sensory problems.

Yes, DS1 has ASD. DS2 (4yo) keeps asking if we think he has it too & looks crestfallen when we say no! I love that our DC see it as a positive thing, thus far anyway!

He talked about the DSM5 & another one & said one was used in Europe & one in America. I don't remember him explicitly saying which they used. They should be sending me a report in the next few weeks so hopefully I can spend hours annotating & correcting it use it as a way of expressing my difficulties in a clearer way for when I pursue it again.

I do know a sibling of someone who specialises in autism in women but I've yet to figure out how to broach the subject or what I'd want out of a conversation with her. I don't know that she'd be qualified to diagnose me, she's more of a researcher I think. Maybe I'll just bite the bullet & talk to her sibling next time I see them. I think they're aware of my suspicions & would probably be quite tolerant of me just walking up & announcing I want to meet their sister randomly!

Waiting for the report and then re-assessing your position sounds sensible. Even if friend's sibling isn't a clinician she might have some ideas of where to go next.

Your ds2 sounds fab. My ds is incredibly glad to be autistic, less happy I'm diagnosed as I'm considered too boring to be autistic...

"too boring to be autistic" - I love it!

Thanks, Polter, I'm feeling somewhat calmer about it now. I've even managed to discuss it a little with DH & he agrees that he thinks it's more than "just" anxiety.

I've spent the vast majority of my evening repeatedly pausing, un-pausing & print-screening tonight's episode of EastEnders to try & solve the cliff-hanger mystery. I've probably spent getting on for 3 hours on it in total. That's completely NT behaviour, right?! Nothing OTT about my interest levels there...

Glad you're feeling better, and that dh is supportive. Was he an informant as part of your assessment?

The Eastenders thing does sound like interesting behaviour which should have been taken into account. Did you get a chance to explain all that in assessment?

agnu neighbours watching came up in my assessment! Totally a special interest of mine. I love the neighbours thread on here.

I'd seek a second opinion from someone who properly understands the female presentation.

Have you tried contacting the Lorna Wing Centre via the National Autistic Society? They specialise in women and girls.

Can I ask what part of the country you had your assessment? Just if you don't mind saying!

That sounds like an awful experience AGnu, I really sympathise. I've just come home from an assessment where I was diagnosed as autistic/aspergers (as was) but only just. Years of working out how to do/say the right thing and just about coping meant the nurse was a bit on the fence. But he felt a diagnosis would help me and help me with my son (DS1s diagnosis meeting is next month). I'm struggling to process my emotions and my 'symptoms' are less obvious than the ones you describe. The only special interest I could come up with was a deep love of the Manic Street Preahcers during my latter teenage years! I can't stand them now of course (except the early stuff). I would also second trying to get to see someone else. As the nurse said to me as I sat in floods of tears, there is a degree of acceptance and validation that a diagnosis brings which can be incredibly helpful even you are seemingly okay.