Hello!
I am new here. After time in camhs and adult mental health services and (what I believe to be) misdiagnosis of anxiety, depression and EDNOS, I have now been referred to be tested for ASD.
I don't know what to expect from this at all which is causing me a lot of stress. Could someone share their experiences of adult diagnosis? What should I expect? All I have been told is that I have an appointment with an "advanced nurse practitioner".
Thank you very much!
Ditto and welcome firefly.
Yes I see unfortunately this is the case for many. For me I think the main goal I want from diagnosis is peace of mind, knowing that what I feel and go through is a result of this and the issues I have arent "issues" they're just me. I hope you find support on here and in other communities too! Thank you for your comment.
Thank you very much! Your advice has been so helpful and welcoming.
Sadly, that's all too familiar. I did manage to get an advocate for a while from a local mental health organisation; which I'm very thankful for, as I would never have made it through appealing a dodgy PIP decision otherwise (I went from zero points to nearly twenty!) But he rang me up shortly before my final appeal hearing to say that they'd lost their funding, and that was it.
The Autism Act legislation that the NAS is so fond of trumpeting its role in was a bit of a con-trick, IMHO. It's obligations were primarily dumped onto local authorities - just as the very same Government which enacted the legislation was sucking away the funding that those local authorities need to provide even exisiting services, never mind the new ones which the Act insists upon.
In my area alone, I know of at least three disability advocacy services, two of which I've used myself, which have had to shut up shop because their local authority grants were not renewed - and of course, the single surviving one simply hasn't the resources to take on the others' former caseloads. The required services are nominally there, in that the social services and local NHS units exist - so the LA can claim to be meeting their legal obligations,. But the providers are free to choose the conditions for access, and can simply pass the buck back and forth between each other. I've been refused access to mental health services because I'm supposedly social services' responsibility; but when I tried them, they just bounced me straight back again - both agree that I should be receiving support, but neither will accept the responsibility.
Like so many of us, the outcome is that I have a formal diagnosis which doesn't actually open up access to anything (the DWP ignore it completely, so without an advocate, I will very likely lose my PIP this year when it comes up for renewal - another two-year long appeal isn't very, erm... appealing!)
I'm very, very glad that, even if it's only via the internet, we have each other for support.
Personally, I think getting to know other autistic people on forums like this is about the best thing you could do - I've received far more effective "therapy" this way than from any professional that I've ever seen. My assessment was certainly very enlightening, and led me to make contact with other autistic people, but there was no official follow-up with suggestions for coping strategies or anything like that (there actually should have been, but the waiting list for assessments had grown so long by the time I was seen that all the staff were needed for those; so it never happened).
As for the "how long" question - as I always say, it depends when you start counting from! I got very lucky with the assessment itself, as the NHS unit was brand new when I was referred, and my GP had been keeping an eye out for me (more about that in a moment). So, from referral, I only had to wait a couple of months - but after just that short time, the waiting list had already grown to over three years! And, from what I hear on the grapevine, it still is.
However, over the previous few years, my GP had tried to refer me at least twice before (and possibly before that with a previous GP). However, at that time there was still only a private clinic doing autism assessments locally. That meant that the GP had to request special funding from the NHS - which was refused each time, even though two CBT counsellors had previously written to my GP recommending that I be assessed, and the clinic had provisionally accepted me. I was very lucky that I had such an attentive GP looking out for me - I'd given up thinking I'd ever get an answer by that point!
So it took me either two months or about five years - take your pick!
Another thing id like to add which is a negative sadly that diagnosis doesnt mean extra help. I got my diagnosis 4 years ago and since then had no autism specific help offered to me at all. It helps proffessionsls amd urself to know what to expect maybe from u but i got no extra or specific autism help. There are charitys out there though that can help.
Gosh that is really helpful advice and insight! Thank you!!
im only just setting out on this path of strongly suspecting I have high-functioning autism. I can’t work out which was to go. I need help and support urgently, but the wait with the NHS is literally years (as I’m sure you know) and in desperation I’m trying private therapists but just finding the professionals I’ve contacted have little understanding or experience with someone with autism. To read that you found the assessment process the way you did, is very reassuring. Did it take you a long time to get to that stage, writhing the system? Is online support perhaps a better option do you think? I say that because there may be a broader selection of “experts” offering support online (maybe.)
Welcome, Greenfly!
I would guess from the fact that you're seeing a nurse practioner, that the first session will be a preliminary screening, to be followed by a few sessions with a psychologist and/or maybe an occupational therapist if indicated by the screening. That was pretty much the case for mine (likewise I was referred by mental health services after 30 years of recurrent "untreatable depression" - which I'm now pretty sure would have been better described as "autistic burn-outs").
Besides the usual anxiety that I have about appointments and travelling, my experience was a really good one. It was the first time in my life that I spoke to anyone, professional or otherwise, who really understood what I was trying to say, and I found that I was able to open up about it all really easily after a little while to find my feet. IIRC, I had four or five of the full sessions with the psychologist, each of about an hour, and the occupational therapist was invited in only for a little while just for a second opinion on a couple of things. That may not be quite the same for you, as different units have their own way of working, but it seems pretty typical. A few of the tests might vary depending on what they see as they go along - for example, I had to do some co-ordination tests because my autism has a touch of dyspraxia about it (hence the OT).
The main advice I'd give you is to try not to antipate what answers they're expecting to hear and just be as honest as you can be. If you're struggling to answer a question, just say so, and if possible try to explain why - they will be plenty used to that, or even people just going completely mute, and such difficulties can be as useful to them as any other answer might have been. Some of the questions can seem really strange at times; sometimes it's just because they're "control" questions to rule out other things, and other times it's because they've noticed traits that you don't even know you have yourself. I was really worried beforehand that I was such a "borderline case" that I might get no diagnosis at all (I'd have happily accepted that my problems were due to some other condition) - but I discovered a lot about myself that I'd never have linked with autism in a million years.
And whatever happens, you'll be welcome here on the forums - what matters is sharing experiences that we have in common, and useful advice is still useful advice whether or not we have the same strange technical terms on our medical records.
Thank you thats helpful, seems like I'm in store for a few assessments then.
I feel totally the same. A diagnosis would explain so much for me; so many symptoms just don't fit anything I have been diagnosed in the past! Thank you for commenting, although it's a tough process it's comforting to know I'm not the only one.
I had see a speech and language person first who assesed with asking questions and agreed i might have autism and sent me for full assesment.so i saw a psychatrist and then a psychologist who did a range of pratical tests and questionairres. I was then diagnosed with autism.
Hi! Welcome to the forum. I can't provide any advice on diagnosis because I'm also waiting for my assessment, but I just wanted to say hello and let you know you're not alone in feeling like this. I'm nervous about the process too, even though I'd really welcome a diagnosis (it would explain a lot for me).
