Guidance for Adults for Assessment & Diagnosis through the NHS

Hi, what does ASC stand for in this post and these comments?

(Please ignore this post - moved to main forum)

Hey,

I hope i'm posting in the right place here, if not i apologise.

Let me start at the beginning, a number of people around me have commented on my lack of empathy and in abaility to interact socially.  I thought i was a social recluse and thought nothing of it.  However one of my friends recently said i should go see my GP and get a referal to be tested.  The doc said as i have reationships at work, home etc, there was no need to be tested as clearly i was functional and it would serve no purpose.  The same friend referred me to the A10 test and i scored 44.  I'm not sure what to do now.  I think if i take it to the doctor (s)he will say that i'm just making up the results.  Not sure what to do.  ANy thoughts or advice would be appreciated.

Many thanks in advance.

Hi

Another newbie here.

I have suspected I have some form of Autism for the last 15 years (as my stepson was diagnosed with ASD back in 1998 when he was 8, just before I met my wife)

I have all the classic signs and have taken many online tests that all score high in the ASD area, I know these are not completely accurate but it just made my case more solid and convincing. I am 100% convinced I do have some form of autism and my wife was sceptical at first but once she "observed" my behaviour and habits she is now more convinced I do have some sort of Autism.

I don’t have any issues and I am completely happy with myself and my take on the world. I know what to avoid and more importantly how to remain calm most of the time!

I have had a few meltdowns, purely down to what people would consider minor issues and I was totally over reacting. My emotions catch me out at times and I sometimes struggle with the simple day to day emotional stuff.

I have been having difficulties at work recently but I cope by removing myself from conflicting situations and normally can deal with this. However things have now caught up with me and I am only a step away from being sacked. 

I decided to get an assessment from my GP for this reason so I could set some boundaries at my work that allowed me some breathing space. 

My initial meeting with the GP wasn’t that productive as she said that there are no assessments done in the local healthcare area and it would cost £1000 to send it outside. I said ok then lets do it. She then went on to say that maybe I should take some CBT or mindfulness sessions, I tried to explain that I have taken these years therapies before but found them irrelevant as I do not work A B C D... more like A C then D. I found the sessions I took stupid and totally wrong for me.

Anyway I have to go back in 2 weeks to see if the process has been approved for further funding/approval 

Can anyone give me some advice on this matter? as I got a sinking feeling when I spoke to my GP....

Most surgeries declare what field their doctors are specialised in. At my surgery these include fertility, sport science, diabetes & even tropical medicine. I have yet to find a GP at my own surgery who claims to specialise in mental health, let alone autism.

My referral was from a support worker. Even though I had seen many GPs & one look at me should be enough to suspect I'm likely autistic. 

The incompetent GPs excuse if questioned later why they didn't spot you, would always be that they wouldn't know, it's not their job. A more competent one would at least have referred you to another service. I know it can feel like your talking to a brick wall, but you just need to find the right person to let you in.

The NHS website for adults who feel they may have autism is almost useless. It just redirects adults to NAS website. And instructs them to find information on how to present their case to a GP. In my view this is inadequate, as many adults with ASD may not even be able to get in to see a GP. Nor would they be able to present or answer questions put to them in what's often only a 10 minute appointment. Which itself may be cut to 5 minutes, if the GP is late. A child is given more support, even though children naturally already have many supports in place to fight for their rights. And often little responsibility is currently on their shoulders. It seems that investment is put in place for those with potential to still become high earners, but those who may have already failed are consigned to the scrap heap. 

Hi everyone.  First post here.  Just wanted to share my horrendous experience of approaching my GP with the possibility that I may have female aspergers.  Firstly, for the record, two of my sons are on the spectrum, one of whom attends a school for children with additional needs.

I realised a few years ago after a lifetime of struggling with various mental health issues, social difficulties and the feeling that I'm different from others, that there was a high possibility that I am also on the spectrum.  I have taken a multitude of online screening tests for Asperger's and score highly.  Also, looking at lists of traits, it just seems to 'fit'.

I finally plucked up the courage to visit my GP about this last week and he was incredibly dismissive and belittling. I explained my background to him and he asked me pointed questions only to disregard everything I was saying. For example, when I told him that I can get lost taking routes that should be familiar to me he told me to use Google maps!  He went on to say that because I am middle aged I'm not worth diagnosing because there's no benefit to me (despite the fact I've never been able to work) and there's nowhere to refer me to anyway.

I actually really regret going now.  It was difficult enough for me to face going in and trying to explain everything but I left totally humiliated.  I know I should go back and see someone different but I'm not sure that I can put myself through it again.

Hi ClaireHig,

It sounds like you're having a difficult and frustrating time. You may have already seen links on the National Autistic Society's website but if not, you might consider searching for services in your area on the Autism Services Directory:

www.autismdirectory.org.uk/directory.aspx

Not all of these will be relevant to you, but perhaps you might find some advocacy or support to attend appointments helpful.

Plus if you keep posting here, I'm sure there'll be plenty of other comments from this community offering ideas and support too.

Warm regards,

Heather - Mod

 You asked a question on a previous thread in Health about blackouts - something like "why don't I get support?".  

There wasn't any slight intended in the comment.  

It's not even just new people. I would literally rather crawl through broken glass, just to avoid having to be around people. And I have never experienced a need or want to be around people. I remember someone here saying they like going into their office at least once a week to catch up etc. No, I can't relate. I just want to avoid people. From the point of view as a mother, I love my own child & accept her. But I can't stand being around anyone else. I can't even stand my own mother now. I don't see how 'support' could help. I'm repulsed by having to be around people, it won't change. And it just distresses me when 'support' in the form of people are forced onto me as if they can help or 'cure' this.

What you're saying is that it's very difficult for you being with new people (due to how very vulnerable you're feeling)?  i agree - you do need support.  

Even to book an appointment I had to use the online system, I can't phone. The earliest appointment is usually at least 2 weeks wait, for anyone at my surgery. They have appointments for another local surgery, but I can't go there- I've never been before.

I've seen other GPs as I've been forced to move home 4 times & GPs don't do home visits. I get so stressed I can't sleep for days before the appointment. And then spend all day in bed for weeks. This is the case whenever I have to see people. So I try not to, as I naturally have very bad sleep problems anyway. GPs have failed to fix it with drugs/therapy. 

GPs nor anyone understands how hard it is to see people. It's too hard, even though I know seeing a GP will literally only be for a few minutes. I write down what I want to say before. But even then I couldn't say it & my mother handed them what I'd written. And then just as you did they rationalise doing nothing by saying that I managed to see them so I must be fine. The irony is that GPs & even community health won't respond by email. So if I hadn't seen the GP, they'd still be allowed to assume & record that I'm fine. The system is designed to refuse help.

Having read what I wrote to say to the GP, it says 'clinical detail of my Asperger's'. I forgot to put I wanted a referral. But given that the GP obviously isn't qualified to assess, it's obvious isn't it? She did go on about not seeing what she could add & implying the psychologist had been more adept.

About the first PIP claim which you couldn't get to the interview, would you be alright with them visiting you in your home? - with someone supportive and safe to help with your anxiety on that day.  What you would need is a letter from doctor stating that due to.................. my patient wouldn be unable to safely travel to a DWP interview and therefore I'm requesting a home visit.     Sorry Claire - have just read your 2nd post - you can't have a home visit either.  

As far as I know if the patient can't travel to the DWP interview they require a doctors letter with a request for a home visit.  You interacted with the GP at the surgery with your Mum with you did you not?  Would it really be too intrusive to have them in your home if you had a supportive person with you?      It might be best to get a Disability Advisor to advise you going forward:  what letter is needed from Dr etc.  Google for your council's disability rights officer and contact to make an appointment.  Take someone with you if that will help and good luck Claire.  PS.  You sounded very let down by the letter Dr wrote - are you considering changing Drs? or was it just this one visit that was difficult.

I saw a GP to request in depth clinical detail of my aspergers. My aspergers diagnosis letter gives no detail. Mostly as a support worker answered for me & I was not focused. My PIP claim was refused in June. I went with my mother/daughter to see the GP. And I was hoping to be reffered to a specialist. So I could appeal & produce evidence. Unfortunately the GP said she didn't see what she could do "a diagnosis of aspergers is a diagnosis of aspergers & that should be enough". Despite me stating it wasn't & I'd been refused, because I wasn't able to get to the PIP interview.

The GP wrote a letter for me to give the DWP. Which outlines that I rarely go out or to unfamiliar places. Unfortunately it's in the tone of 'she feels' & doesn't specify that I wouldn't be able to attend a further assessment or home visit. I can't cope with either, but the letter doesn't seem to evidence that.

I feel abandoned to be honest.

Hi

I'm 35 & was diagnosed in 2012 by Department of Neuropsychology in Reading, as having aspergers syndrome.

I was sent results from the clinical psychologist:

1) AQ                                               Score 49

2) Cambridge Behavioural Scale      Score 2

3) Relatives Questionnaire               Score 29

4) Had Anxiety                                 Score 19

           Despression                          Score 21

5) AAA Symptom Score                   Score 13

But it didn't give any detail about the severity of everyday life problems. Nor any instruction to professionals. It makes it seem like I'm fine. As there was nothing about seeing anyone or any help. It just recommended further investigation of my blackouts & that I read aspergirls.

I'm due to see a GP on Friday. I rarely see GPs due to finding going extremely distressing, which unfortunately they don't see. Although the assessment helped me get DLA in 2012, my PIP claim was refused this year when I couldn't get to the interview. This time they refused to accept I couldn't attend. I don't undertstand why. Maybe it's because I have no real proof of my problems. I don't know how to ask a GP for help with proof.

I feel so angry because in 2014 my young daughter was almost removed by court order due to the LA abusing my aspergers diagnosis. The LA claimed I was a recluse & not fit to parent. My child has had social workers. But I've never had an adult social worker for myself. They don't seem to exist in Wokingham. And when it suits professionals they claim I'm fine. I don't get it?

Has anyone has experience of being diagnosed through Psicon?

I have decided to try to get a diagnosis, but the following has left me dubious about the 'pathway' available locally.

I recently accompanied a close family member to their AS assessment. They were referred by the GP on the NHS to this 'company' called Psicon. You can google them, their details are also available through the NAS search tool.

I'm assuming this is an example of some kind of semi-privatisation, as the company certainly isn't part of a proper NHS department in a hospital. I'd be interested to know what oversight there is on their performance.

On the plus side, the wait for an appointment was quite short, it took place locally and my family member essentially got the 'result' they were expecting, diagnosed with 'moderate' Aspergers (I wonder is 'moderate' a reconised clinical term?).

On the down side, the assessment seemed quite ropey to me. Lots of irrelevant, superficial 'facts' were taken by a trainee, e.g. 'where have you lived/how many times have you moved', 'list your relatives', 'do you live in a flat/house' etc. In fairness some of the questions were a bit more relevant, but none followed up on, explained or put into context, just listed down.

We were then sent straight on to the 'main' guy, ostensibly a clinical psychologist, who apparently specialises in court reports. He talked round the subject of AS in a meandering manner. Throughout the whole time it was very difficult to tell if he was actually asking a question or not, and if so what the question was, he was so vague. It felt like listening to a guy holding forth in a pub.

He did say some things about the disconnect between ability & acheivement which made sense, though he forgot to put any of that in the report. He also kept suggesting that the family friend's teenage daughter (who was with us), should get a diagnosis which was weird as he knew nothing about her. No clinical diagnostic tools were used.

The report that eventually arrived 2 months later was, again, meadering, repetetive, disorganised and largely consisting of cut-and-paste type general statements about AS, completely unrelated to the individual whom the report was supposed to be about. A lot of statements like 'for those on the spectrum, this can sometimes be the case, or it can be that, or something else entirely'.

Pound for pound it was good value I suppose, as it was very, very long. (The combination of fairly irrelevant 'bio' answers taken by the underling and lots of repetetive generalisations helped).

It just wasn't particularly about my family member's AS and how it affects them, and even the odd things from the discussion that had seemed relevant & useful seemed to have been forgotten. And to me, the lack of any diagnostic test results was a problem.

Has anyone else had this experience?

vometia, I suppose the NHS make people jump through hoops to make sure that the individuals concerned at least have convinced themselves that they do really have a condition they feel they need to investigate, otherwise there are bound to be cases that are are frivolous and waste valuable resources. 

Having said that, I still feel they have moved the goalposts so that the clinical criteria required for a clinical diagnosis is narrowed to exclude people who are on the AS but are more or less 'coping' (whatever that is).

So, we end up with a medical service that will be of use to acute cases (and quite rightly) but of little or no use to people who see themselves as struggling, day to day, and if you want to get satisfaction it seems you have to be prepared to go private.

Still, as long as people are still getting *** enlargements and other cosmetic treatments on the NHS for free we should be happy - shouldn't we?!

I'm currently in the process of getting a diagnosis sorted out but I've found it to be extremely stressful so far: not because anybody has been difficult, unhelpful or at all unpleasant, far from it, but there are so many steps and none of them seem to have been planned with autistic people in mind, rather ironically: all have often vaguely defined and ambiguously explained requirements, most need to have the ability to use the phone, travel and function socially, and so on.  Even when I have asked for clarification about certain questions, the answers are pretty much along the lines of "write what you feel".  But I need guidelines!  Fortunately by the age of 48 I've finally started to figure out maybe possibly sorta kinda what they might want me to say but I do feel like I'm fumbling about in the dark.

So far I've seen my GP, done the questionnaire, seen my GP again, been referred to the local autism support group, filled in more questionnaires, been sent to a specialist counsellor for review, been referred back to the local autism group, been referred to the local (and historically unhelpful) psychiatric hospital where I've been sent more questionnaires which I've now returned and I'm now apparently in the queue to see a doctor.  At some point.  About something.  Apparently the appointment may be long: "bring food".  Having been a guest of the hospital in the past, they actually do very good food, but with the caveat "if you can get it".  So I'll bring my own concoction.

I'm not even sure what the diagnosis will be, to be honest.  I've "scored" (is that the right word?  It seems inappropriate given the context) very highly on both the informal Aspie Quiz as well as RAADS-R; my education history is mixed, and I'd say overall I'm an underachiever compared to what I know my potential to be; I hold a driving licence (which is apparently relevant) although my driving is, ahem, "fraught" and I suspect along with most other road users and potential passengers I prefer not to drive; I have worked but suffered very badly with stress, especially when commuting, and can no longer work as a result of the knock-on health effects; and have got to know the local police rather well after a series of rather messy meltdowns.

So with that in mind I imagine I'll be prescribed an aspirin and told to lie down for half an hour (IIRC, that was Spike Milligan's recollection of the Army medics' answer to everything that could possibly ail you).

I've only spoken to my GP over the phone so far. Very friendly, but - and maybe this is my condition talking (whatever it is) - he sounded cautious, asking what difference a diagnosis would make now (I'm a pensioner) and asking how I'd done at school. When I said I was a graduate he seemed to think this cast doubt on my having Asperger's. (Although from what I've read, not in all cases). I spent all my school and working life feeling out of place and only getting on with people who, for whatever unfathomable reasons, made an effort to befriend me. When I speak to people I feel as if I'm talking to television screens and no real communication takes place. I obsess about my collection of CDs, trying to perfect it, and become anxious about it being disturbed. I'd rather lose a "friend" than risk this, and rather give something away than lend it. I look for patterns / names / meanings in car number plates. And generally don't know how other human beings work. I don't know of this makes me an ASD sufferer, or if I'm just suffering from a Messed-up Spectrum Disorder (there were childhood issues a-plenty). To answer my GP questions, the difference a diagnosis would make would it would make me feel less like an under-achieving recluse.

Similar to others on here, I recently got diagnosed after wondering for a long while whether I might have Aspergers - I do feel it's a bit of a postcode lottery as to what diagnostic services are available.

I'm in my mid 40s, female, and manage fairly well in most situations but felt that I would like to know for sure.

I was lucky, having moved to an area with a good diagnosis service - I'd had some issues at work, and referred myself to a workplace mental health charity, who gave me the details of the (NHS) service. I asked my GP to refer me, and he did so. 

The questionnaires and 2-hour consultation (partly with my mum and dad) resulted in a diagnosis of Aspergers - and I'm still working out what that will mean for me!

im afraid i do not know where you get the money from for private diagnoses, but i can tell you dont wait too long.  i have just been diagnosed myself at the age of 45 with aspergers, i went trough the NHS and for me, from GP referral to fina diagnoses only took 7 months and it did not cost me a penny, and i am now in the system for getting more help and support.  i wish i had done it years ago.  dont delay, and good luck