I'm undiagnosed, and have questions about diagnosis

welcome to this forum

I'll look into that. I asked my GP. He said "no".

Psychiatry UK was the provider btw - there is reference to the Right to Choose guidance and a standard letter to give to your GP on their website: psychiatry-uk.com/.../

Sorry to butt in Ultramarine and Dawn but I’m telling as many people as I can: right to choose has been extended to mental health conditions/providers. This means that you can ask your GP to refer you to somewhere of your own choice providing they have at least one contract with a CCG (anywhere in England) to deliver NHS funded treatment for the condition you are seeking assessment/treatment for.

Example (real one): I wanted to be assessed for ADHD; my provider had a two year wait. I could have self funded BUT I found a provider who has contracts with other CCGs to assess for the condition and they published guidance on right to choose with a letter you can sign and give to your GP. It’s not the GPs decision - the GP will probably refer it to the CCG for review but patient choice is a right you can exercise.

Once my chosen provider received my referral I received an instant response with paperwork to complete. No more 2year wait, no need for me to self fund. Magic

Hi yes Ultramarine

in fact I did respond to Aonghasbut then my text disappeared into the ether somewhere. I’ll re-post it when I have a bit more time 

I believe it's much longer than this for most places... I looked into private assessment too but when I read that some places "don't accept private diagnoses" I was more reluctant. Luckily wasn't necessary!

I've just been diagnosed, am in my 30's. I only waited two years and was seen on the NHS at the best place in the country for it (South London & Maudsley) so count myself lucky.

I was diagnosed with EUPD pretty young and was then left to it, so in a way was misdiagnosed too.

I wanted a diagnosis more than anything but bear in mind my consultant told me there is basically nothing else the NHS provide once diagnosed with an ASD. (And I'm in London so dread to think what other areas are like!) So something to think about depending what your goals are I guess! 

Hi Utlramarine,
Not the team who diagnosed me not give me any details of place or contact.
Maybe I don't understand all?
But, before I was alone, now it is worse...

awesome reply

Hi Out_of_step,

Thanks for taking the time to describe some situations where you've noticed difficulties shifting gears.  It's fascinating and interesting for me to hear about other people's experiences.  I haven't experienced this specific issue, but have had other problems which seem to fit closely with Asperger's symptoms.

Last time I looked, the official figures for the average wait time from referral to assessment on the NHS was 315 days. This was from early in the pandemic and is probably longer now. I had a private assessment in February, and it cost £900. The wait was about 25 days following booking an appointment. It was by a consultant psychiatrist, and as far as I'm aware any diagnosis by a qualified person within the UK is valid.

Hi Dawn, thanks for your reply.  I feel much calmer after talking to you.  It is so good to talk to someone who knows a lot about the whole process.  I was a bit overwhelmed at first, but now I think I have a plan:

1.  Email my GP with the referral form, and a document I've been writing up with examples of situations in my life which make me think I might be autistic.  I think I've finished it now.  It's nine pages long and I wonder if that's too much, but I wanted to give them all the examples I could think of.  I will also email my GP the list of traits that my friend whose son is autistic has noticed.

In the email, I will ask my GP how long the NHS waiting list is, and whether I could be referred to the Lorna Wing Centre.  If they can't refer me there, I will ask what diagnostic tool is used by the centre I am referred to (I've read that the best one for women is DISCO).

I will ask my GP whether I would still be eligible for NHS help after a private diagnosis.  I will also ask what would happen if a private and NHS assessment returned different diagnoses.

2.  Based on my GP's reply about how long the waiting list is, I might consider going to the Lorna Wing centre privately.

3.  In any case, I will fill out the Lorna Wing triage forms so that I can see if there is a possibility that I may be autistic.

I don't know about you, but I'm finding this whole process very confusing and worrying.  I'm going to have a chat with my friend this evening.  He keeps saying  that Asperger syndrome doesn't need to be a problem, but I'm just worried about the future of my personal and professional relationships.

I'm the kind of person who worries that I have got a condition that I actually haven't got (e.g. if I see a lump, I worry that it might be cancer) and perhaps this is the same thing, but if I fill out the triage forms from the Lorna Wing centre then I will know if there is a possibility that I'm autistic.  

I didn't score as autistic on the AQ10, but on the RAADS-R I was above the threshold for suspected ASD.

no problem

It is possible to get a private assessment quite quickly I think, but wouldn't know where to start to find one I was confident I knew I could be confident with, if you see what I mean.

The Lorna Wing Centre do NHS and private, so whilst not all private assessments are recognised by the NHS, I would hope theirs are.  Nonetheless, they are expensive privately and popular because of their reputation and their waiting list is about 4 months.  Obviously, they'd had a few problems due to the pandemic and have got a bit behind.  I reckon I'll get mine in Sept.

My GP has left me on the NHS list, but that would be 18 months to 2 years and I can't wait that long for some help.

I did some online questionnaires and they came back over the line in the moderate ASC potential.  But remember these are only indicators that the issue may be worth looking at.  The NHS uses the AQ10 questionnaire.

 It is a big decision to spend so much cash and it is possible that they could diagnose some other cause of your problems.  It could be that there is something else with a strong SPD component that they find for me, but I have to know.  For me, I just want to be really sure someone who knows exactly what they are talking about has considered everything and come up with the RIGHT answer.  I'm sick of the NHS stuffing me in boxes I know don't describe me and telling me I'm to blame when the WRONG help doesn't work.  I'd just like to be in the right box for the right help, please, lol.

I guess if you let them do the triage and they tell you there's no need for an assessment, - and they'll do that if they don't think there's any possibility of ASC, you'll have a partial answer at no cost.  If they do want to assess, then they think there may be a possibility and it may need a full day if it's a possible more subtle presentation or there are other MH issues involved.  If they think it will be more clear cut or less complex, they will offer a half day, which is cheaper. At any rate, it's sounding a lot more thorough than anything I'm hearing about NHS assessments.

Hi Dawn,

Thank you so much for your message, it is really helpful to hear your story, and clearly you have done all the research.  I am considering going directly to the Lorna Wing centre as you are doing.  When I spoke with my GP on the phone last Monday, she said that the waiting list for NHS diagnosis was 'really, really long' but I wanted to know more specifically, so I emailed her last Friday to ask if she knew whether it would be more than a year.  I feel that life is precious and I want to make the most of mine, so if it is a very long waiting time, I would consider going private.  How long are you having to wait?

I am really confused at the moment, because my friend whose son has Asperger's thinks I am autistic, and I think I have several of the traits, but there are other autistic traits that I don't have at all.  A couple of the autism questionnaires I've taken online have come out with a neurotypical result.  I am worried that I've made a mistake and that if I go privately it would turn out to have been a big waste of time and money.  But I guess at least it would be ruling out the possibility that I'm autistic.

I was wondering, are you going to stay on the NHS waiting list anyway so that if you are diagnosed as autistic through that route, you will be eligible for NHS help post-diagnosis?  If so, what would happen if you were diagnosed as autistic by the Lorna Wing centre, but as not autistic through the NHS?

I've heard that some private diagnoses are 'not recognised' by the NHS, but I would have thought that a diagnosis from the Lorna Wing centre is respected because they are world leaders?

Hi again, there's quite a lot here. Hope I cover all the points.

I immediately have no confidence in your CBT therapist, if she thinks she can "tell straight away" you don't have ASC. Is she even qualified to diagnose that? And in adult women who mask or compensate well, it can take a full day's assessment to be sure!!!

I gather some assessors still have the stereotyped presentation of the "male" child in mind. There are more boys melting down on supermarket floors and getting a diagnosis than girls. The current research shows that not everyone presents like this and girls in particular are under diagnosed.

I'm going with the Lorna Wing Centre who work with the National Autistic Society. They are world leaders in the field. Dr Wing was the one who first identified Asperger's as being part of the spectrum. They are expert in women and non-"male" presentations. I am confident that if it's there, they will identify it, and if it's not I will be confident that they really dug into everything. They do accept NHS referrals, you can ask your GP if they will refer there, but due to funding constraints some won't. Mine will only refer locally, so I am going to have to pay 3 grand. But I'll do that because whatever the answer is, I need to be sure it's the truth.

Dig around this NAS, there is a page on the Lorna Wing Centre with an e-mail address. They send you the triage forms and will examine those to see whether an assessment is warranted and whether they would need a half or full day to assess. You don't pay until you accept the assessment appointment, so you've nothing to loose by letting them triage.

Meanwhile, my counsellor is a "person centred" counsellor. They operate on the basis that the client knows themselves best and are best placed to identify their needs. The bacp website is where you can find qualified therapists.

https://www.bacp.co.uk/search/Therapists

I think I just got lucky with this guy. He seems quite knowledgeable about autism and his questioning style is good. He's very good at being specific, checking we have a shared understanding of where we're going, explains why he's asking certain things, gives me loads of time to analyse and work through little details and very open to whatever I want to raise.

I've had CBT in the past and found it totally useless. Quite a few people here haven't had any benefit from it. Apparently it can work if adapted for ASC. You have to ask the crowd here if anyone has had adapted CBT and found it useful.

Did I cover everything?

This is something I'm learning... you don't need to say "x makes me anxious because I'm autistic". If it makes you anxious, it makes you anxious. The tutor needs to help to make you feel comfortable.   If a non AS person were to say "X makes me anxious", the tutor would still need to make allowances. As Martin says

Martin said:

After all, your anxiety is real and not dependent on any clinical diagnosis.

I'm not an expert in anything.  This is coming from my own thoughts and analysis. In my assessment it was discussed that often when I was asked a question, they'd notice I'd be thinking for a while, and we said together it was because I needed to listen to what was said, think about what was asked and come up with a response. It was also discussed in one of the tasks, I was logically working out the story rather than having a feel for it. I

It's become clear through my assessment there's difficulty with "shifting through the gears" and this may be applied possibly not just to tasks but conversation also.

E.g. Meeting friends just after lockdown, so there were myself and 3 others. I have no sense of anxiety seeing these friends. It was usually just one convo going but people dibbng in and out so topics or themes would change quite quickly. I think for me, it requires extra effort to notice and follow these changes, or there's a bit of a delay.  I think this is why in past situations when I've contributed it's been a bit off key on occasions because i havent kept up. This is despite intense concentration and listening. When we meet up with their baby, it's even more difficult because the interactions change so suddenly and are often incomplete. I don't know where I stand. I was exhausted for the rest of the day after they left last time. 

E.g. informally chatting to a colleague last week. Again no anxiety but had difficulty shifting through the gears of what he was saying to the point where it was my turn to speak and I felt like my brain had momentarily stopped because there was too much to think about. It felt like when you grind the gears in your car when the clutch isn't down properly.

Of course,  if there's social anxiety there may be a delay going on because the brain is tied up with fight or flight. But I'm trying to say this difficulty happens even if I do not have any sense of anxiety. I feel that for non AS people who have social anxiety, there's still a certain level of intuition which I don't have. 

I have observed people who are shy and they still "get it". I've observed people who are introverted and they still "get it". I have observed people whose first language is not English and they still "get it". 

I remember in some other interaction recently, I made a "leap of faith" connecting something together. This felt unnatural and required effort but paid off in the end. I feel non AS people make these leaps more easily because these people are more intuitive.

I hope my account makes sense and is helpful. Sorry it's a bit long!

Hi Martin, thanks for your reply.  I am doing something similar at the moment: I'm making a list of the Asperger's symptoms and then writing examples of my own experiences under each one.  I think I've covered everything I can remember now, but the document is 8 pages long.  I don't know if they will read it or not, but I feel I really need to describe everything because I don't think my scores will be very high.

I don't use stimming as far as I know, but I feel the need to keep checking things, like in OCD.  

Assessment often includes an initial AQ test. I scored borderline on one test and 'severely autistic' on another. All of the AQ tests have faults. The assessment is not directly dependent on test scores. I found looking at the clinical criteria for diagnosis and then assigning my own traits and behavioural history to the criteria was a very useful exercise. For example, I didn't think that I used stimming (I have never rocked or flapped my hands), but then remembered how I fiddle with small mechanical objects - clicking pens, opening and closing the tools on a Swiiss army knife etc, and how I used to spin around a lot as a child, and realised that I did stim. Before I filled in the questionnaire as part of the assessment I had 4 pages of A4 paper full of my autistic traits and history from the age of 4 upwards.