In the process currently with NHS for adult dd as there are other previous dx from childhood which point in that direction, it needs someone to join the dots and dx either AS or HFA.
Keep trying! It's as exasperating as hell for us. DD can't do all the bouncing around the system for herself.
Last year, nearest assessment place GP could refer to, let's call them X Group, was too far away, loads of other major life events ongoing, so we let things lie.
This is relevant, her fatigue is overwhelming and at present due to lifestyle it's that which causes her more difficulties than her AS/HFA. Last August, she had an assessment for CFS, it involved a physical exam and an MH questionnaire and interview. They would not dx CFS because dd has fatigue but no MH issues.
I found out the X-group opened a centre in our nearest city. I rang them 2nd Jan to find out how to refer and they said I had to go via GP but they had appts available. Back to the GP in early Jan to ask for a referral there, then was told the centre is fully booked for NHS but if I paid £250 for the first in a series of assessments, we'd be seen soon. I know from previous private assessments for things that the initial appt is only a 'give me all the details' one, then there can be quite a few follow-ups with different tests administered until a dx is decided. We already have the basics like childhood development well documented by NHS paed and OT, secondary ed involved by private Ed Psych, OT and SLT so I'm not prepared to walk in with an open chequebook and 'have' to have an unknown number of appts to cover info-gathering that I've already paid for multiple times and is documented in our files of previous reports, at least half of which are NHS.
Back to GP, said we need NHS dx as PIP will be upcoming soon and DWP and some others can be iffy about private assessments, so we'd like to pursue the NHS route first.
We've been referred to a one-stop centre at the end of Feb which will assess her MH they have to rule out any MH issues before we can be referred for an AS/HFA dx. I know because I rang up and said she has no MH issues, that's fully documented by the NHS' CFS assessment six months ago. Their appt and questionnaires sound identical to the one she had in Aug at the CFS appt.
But no, we have to go to this one-stop place and repeat the same questions from 6 months ago and have MH ruled out before we can be referred to "an appropriate specialist" for AS/HFA dx.
There's no way she could do this on her own, and it makes me wonder how many people miss out on dx because they don't have a determined advocate to fight their corner.
If you've got this far, thanks for reading, my next plan in the campaign is to make sure whoever assesses her is au fait with the presentation in women.
Apart from asking which diagnostics they intend to use and mentioning the work of the Lorna Wing Centre, can anyone please give me any questions I need to be asking the "appropriate specialist" who will either be a psychiatrist or psychologist.