I'm undiagnosed, and have questions about diagnosis

Hello Ultramarine,

Nice to meet you.  You have a number of questions there:

On the friendship thing, it not a symptom as such but a very common experience - I think some of the others have commented admirably on that and it's happened to me on occasion..

On women, girls, people whose gender identity isn't binary and men who don't fit the stereotyped "male" presentation- yep! I hear so many stories of them being missed.  There's a lot on you tube about women and diagnosis.  As my boss who is a teacher and well aware of this put it: "We often pick up on the boys because they melt down in class, throw chairs across the room and hang out of the window telling the world to effe off.  The girls we often miss because they have their heads down at the back of class either shutting down or getting on with their work only to melt down later at home".  Not only that but all the early research was done on boys with that "male" presentation.  I suspect there are some assessors out there who are still not trained well enough to pick up the other possible presentations or autism when it's covered by masking.  There are some folks on this site who have reported they or their girls, in particular, have been assessed and seem to have been dismissed because they are superficially passing as socially OK for an hour.

This in turn can feed into the issue of misdiagnosis.  MH services often pick up on things like OCD and eating disorders, but fail to spot that autism is behind the development of these problems and why they don't often respond well to therapies for NTs, or else completely misdiagnose and tell people they have personality disorders etc when they don't.  I'm only just beginning to understand I have the chronic phobias I do because of sensory experiences related to probable ASC. And MH services have never picked up on any of the ample clues I now realise I'd been giving them of either autism or some other sensory issue.  I had to work that one out for myself. I certainly believe that if ASC is in the mix it is important to tease apart what is due to ASC and what is an MH issue.

Moreover, there is a growing body of research which says that with ASC MH problems need to be addressed very differently as it can affect which meds should or shouldn't be prescribed and the therapeutic approach in talk therapies because the interactions and communicative and cognitive styles are so different. 

So, I think in your position you are doing a wise thing in going for an assessment.  And yeah, I'd tell any therapist I was working with I was waiting for one.  It could help.  I've had endless problems with NHS services, but have a private counsellor now.  I told him and he's treating "as if" while we await an assessment and that IS helping matters A LOT.

If they don't diagnose you as autistic and you are satisfied they have looked properly under the surface of things, then the process might still prove very helpful.  I think there are a lot of folks out there, - and I might turn out to be one, who knows? - who meet a lot but not all of the criteria for the diagnosis.  We're all on a human spectrum somewhere after all, and it might well be that the traits you DO have are nonetheless causing problems/benefits for you in some respects the same as, or similar to people who do meet all of the criteria.  Again teasing apart which traits you do and don't have might help you understand yourself better and find some strategies which work better for you.  And yes of course you'll be welcome on the forum.

As for the point on support,...I've yet to find out myself what's there for me and what's not.  I guess the others will have some very variable stories.  For me, for now, the best help I'm getting is from my private counsellor, my boss and my dentists, lol.

Hi Dawn,

Thanks very much for your reply.  

I'm interested to know, what sort of therapy are you having from your private counsellor?  Is it CBT or another type of therapy, and is he changing the approach at all to reflect your possible diagnosis?

I was having CBT for low self-esteem and insomnia a few years ago, and I told the therapist that I wondered if I might be autistic.  She said straight away that she could tell that I wasn't.  (This was before I had started looking back over my life and seeing lots of possible evidence, and researching Asperger Syndrome, which I've been doing in the last few years).  It's only recently that I discovered that it's possible to be autistic and appear 'normal' to most people.  My doctor has agreed to refer me for an assessment, anyway.  Recently I contacted an acquaintance whose son has Asperger Syndrome, I told him I thought I might be autistic and asked him what the testing process involves.  I thought he would say I wasn't, but to my surprise he said 'speaking frankly, I always thought you were an Aspie' and he said he had seen signs in me that he has seen in his son.  I asked him if he could make a list of those signs that I could send in to my doctor.  I've known him for a few years but he never said anything earlier.  Perhaps it's better this way, as I might not have accepted it if he'd said something earlier.

Thanks for your comments about how useful the process might be, even if it turns out I'm not autistic.  I'm in the process of writing down all the signs that I've noticed over the years, and I'm going to send the list to my doctor who will hopefully be able to send it to the assessment team.  It's quite a distressing process to write down all the social mistakes I've made over the years, and all the ways that I've felt different, but it is helping me clarify the problem, and if I'm not autistic then I can still show it to whichever therapist I end up working with.

It's good to know that I'm welcome on the forum whatever happens. This seems like a very nice community.  It's surprising (or maybe not surprising) that whatever problems you have, many others have experienced the same thing, even if it feels like you are the odd one out to begin with.

Hi Dawn,

Thanks very much for your reply.  

I'm interested to know, what sort of therapy are you having from your private counsellor?  Is it CBT or another type of therapy, and is he changing the approach at all to reflect your possible diagnosis?

I was having CBT for low self-esteem and insomnia a few years ago, and I told the therapist that I wondered if I might be autistic.  She said straight away that she could tell that I wasn't.  (This was before I had started looking back over my life and seeing lots of possible evidence, and researching Asperger Syndrome, which I've been doing in the last few years).  It's only recently that I discovered that it's possible to be autistic and appear 'normal' to most people.  My doctor has agreed to refer me for an assessment, anyway.  Recently I contacted an acquaintance whose son has Asperger Syndrome, I told him I thought I might be autistic and asked him what the testing process involves.  I thought he would say I wasn't, but to my surprise he said 'speaking frankly, I always thought you were an Aspie' and he said he had seen signs in me that he has seen in his son.  I asked him if he could make a list of those signs that I could send in to my doctor.  I've known him for a few years but he never said anything earlier.  Perhaps it's better this way, as I might not have accepted it if he'd said something earlier.

Thanks for your comments about how useful the process might be, even if it turns out I'm not autistic.  I'm in the process of writing down all the signs that I've noticed over the years, and I'm going to send the list to my doctor who will hopefully be able to send it to the assessment team.  It's quite a distressing process to write down all the social mistakes I've made over the years, and all the ways that I've felt different, but it is helping me clarify the problem, and if I'm not autistic then I can still show it to whichever therapist I end up working with.

It's good to know that I'm welcome on the forum whatever happens. This seems like a very nice community.  It's surprising (or maybe not surprising) that whatever problems you have, many others have experienced the same thing, even if it feels like you are the odd one out to begin with.

He was very friendly, aware that the assessment was anxiety-causing for me, and very thorough. However, 45 minutes into the assessment he said, "I am confident in giving you a diagnosis of ASC", then went on to discuss some comorbid conditions I have. However, the drug he prescribed for my mild depression (Sertraline) just triggered migraines in me - just my luck!

Hi Dawn and ItsMyMind,
I thought you might be interested in this: I contacted the Lorna Wing Centre and they said that their centre isn't one of the options under Patient Choice.  This is what they said:

Please note that the Lorna Wing Centre does not hold a block NHS contract with your local Clinical Commission Group (CCG) and therefore we will not be one of the service options under Patient Choice. You will therefore need to discuss a referral to our service with your GP.

 If your GP agrees to refer you to our service we would need a completed referral form from yourself and a referral letter from your GP which needs to state clearly that they support the referral and will apply for an Individual Funding Request (IFR) through your local CCG.   Your referral will then be reviewed by our clinical team and we will confirm acceptance of the referral to you and your GP, if it is appropriate for our service and provide the costings.  Your GP will then be required to apply for an Individual Funding Request (IFR) on your behalf through the CCG.  If funding is agreed by the CCG we will require confirmation in writing from them before we can proceed with providing an assessment for you.

You could also contact your Clinical Commissioning Group, ask to speak to the Commissioner for adult mental health and get the information direct. Then you’ll be in a position of knowledge and can inform the GP the process they are obliged to follow ;-)

ItsMyMind,
Thanks for sharing this link - I appreciate it!
Do they have a similar application form for ASD assessments?  This one seems to be for ADHD.
Thanks for taking the time to let me know about this.

Hi ItsMyMind,
Thanks so much for letting me know!  

I didn't know what a CCG was, so I Googled it and think I roughly understand.  It's the group who fund NHS healthcare in a local area; is that right?

Fantastic to hear that you didn't need to wait for two years!  How were you able to be seen sooner?

Hi Martin, thanks for letting me know about this.  It's good to hear that you were seen so quickly.  How did you find the psychiatrist?

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

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!

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.

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?

PS - Dawn, I noticed in another conversation on this forum that you said you were going to be assessed at a special centre for diagnosing adult autistic women (if I understood correctly).  Were you able to specify to your GP that you wanted to be assessed there, or did you refer yourself privately?