What is going on with diagnosis in the UK?

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Nerien
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31 Jul 2018, 4:58 pm

Everyone seems to have a different story, to have had a different diagnosis journey. Does anyone know how it all works? Are they even all working from the same diagnostic criteria?

I had a two hour appointment after being referred by my GP, which involved an hour interview with one doctor, then a questionnaire (I can't even remember which; I was so exhausted by this point), then a brief conversation with a more senior doctor... then they said I was on the autistic spectrum, and other things I don't really remember, and would I like a letter to give to my employer... I thought there might be a report or a level of severity or something, but no...

I'm sure it's something that has been gone over before, and I apologise for any repetition, but I would be interested to hear other people's diagnosis stories, and, more interestingly, if anyone knows how and by whom these diagnostic interviews are designed...

Also, I've only been thinking of the NHS; is diagnosis different in different organisations...?



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01 Aug 2018, 12:16 am

I was referred to the newly set up Cumbria Adult Autism Assessment Service by my GP. After a long wait I was sent a large amount of paperwork and questionnaires to fill in. I then had a further wait whilst they decided whether to offer me an assessment.

The assessment lasted about four hours and was carried out by two psychologists. My ex partner was present and we were interviewed both together and separately. There was then a further wait of about six weeks whilst my case was discussed with the rest of the multi disciplinary team.

I was then invited to a follow up appointment, told the results of my assessment and given a comprehensive report. This stated that the assessment was carried out using a combination of the diagnostic criteria from both the DSM 5 and the ICD 10. It states that the assessment was carried out "using structured and unstructured interviewing and observation. The Cumbria Adult Autism Assessment Service Initial Information Gathering Tool and the Royal College of Psychiatrists Diagnostic Interview Guide for the Assessment of Adults with Autism Spectrum Disorder Diagnostic Interview were completed".

The diagnosis given in the report stated Autism Spectrum Condition. However the report asked my GP to record my diagnosis as Asperger's Syndrome on my medical records as that term would be better understood by other medical professionals.

I was offered one further appointment at which we discussed what strategies I might use to help improve my life although it was made clear that there was no further help available for adults beyond this third appointment.

As agreed at the third appointment I received a further report confirming what had been discussed, along with an action plan and a letter to give to my employer. I could refer myself for a limited number of therapy sessions through the NHS but have chosen not to do so at present. I have developed a number of strategies of my own based on what I learnt from my assessment and they seem to be slowly improving my life and my mental health.


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domineekee
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01 Aug 2018, 2:59 am

I spoke to my doctor about it and he agreed that it could be, "a useful way of seing yourself".
I had to fill in a form and wait to see if they accepted me. I got an appointment and waited 5 months. The appointment lasted 3 hours, I had to talk about my childhood and family and do some tests. A few days before the second appointment they telephoned my mother and asked her what I was like as a child. There was a second appointment that lasted for 3 hours, more tests and then a long questionnaire which took about half an hour to complete. They are talking with my sister tomorrow about how I am now and next Monday I have another appointment which could go on for 2 hours, I think it's the last one. The 3 appointments have been at 5-week intervals.

I'm not too happy with them talking to my sister as our relationship is pretty serene, we are very similar and don't get into conflicts with each other. My ex would have given them a ten-page essay, so as you see, some of the evidence is subjective. When my sister was getting her boys assessed she saw a private note to the doctor from the NHS asking them to reduce their diagnosis of autism. I'm trying to remain detached about the outcome, if I get a diagnosis I'm going to celebrate and buy myself a treat!



MrsPeel
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01 Aug 2018, 4:47 am

I went to a private psychologist who specialises in autism spectrum conditions, locally here in Queensland, and my experience was very similar to the OP. A one-hour interview and anther hour for a questionnaire and that was basically it. I was told I had Aspergers, and got a very basic letter saying I had an autism spectrum disorder, no definition of level (so I assume I'm either deemed Level 1 or a subclinical level assumed not to require any support).

I know this assessment was on the 'light' side. For my 17 year-old son the same team got questionnaires from me and two of his teachers, did a raft of cognitive tests, and produced a more detailed report. So I think they have freedom to adjust the assessment based on their perception of our needs, e.g. how likely we are to need paperwork to back up any request for support services of some kind.



boating_taxonomist
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01 Aug 2018, 5:03 am

It's up to each individual area to set up their own service, and up to them how they decide to go about it. So yes, there is massive variation-there are obviously NICE guidelines they were expected to strive to, but there doesn't seem to be much that's standard in how assessments are undertaken. People all seem to have a different number of appointments and go through different processes (like some people have a screening appointment first before they get a full assessment). I can't help think that they could reduce the waiting lists quite a lot if there was a standard way of doing everything that kept the number of appointments down to a minimum.

I've been referred to my local service in Bristol (haven't been assessed yet, going to be another few months I reckon). They send you out some questionnaires before hand, talk to a relative, and then there are usually two 90 minute appointments and they usually tell you the verdict at the end of the second or in a third appointment. I think they do the ADOS-2 as part of it, but not certain. They also have a 6 week post diagnosis support group you can go to (though there's possibly a wait between getting your diagnosis and being able to attend the group as I believe there's also a waiting list for that), and a weekly autism advice service you can also attend, so very lucky in terms of post-diagnostic support around here.



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01 Aug 2018, 8:21 am

Spoke to my doc about it, they agreed it did seem something that could apply to me. They were happy to refer me to a specialist for assessment. I spoke to my private healthcare provider, which I have through my job, and they made me have a 10 minute chat to one of their specialists, they agreed to fund it and I was seen by a neuropsychologist who worked for the NHS 4 days a week and private 1 day a week.

This was in 2016. I was diagnosed with Aspergers as that is on the IDC-10 which is widely used in Europe for diagnosis.



Nerien
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01 Aug 2018, 9:27 am

Thanks for the replies everyone. Very interesting! It certainly feels like I got a "light" version of a diagnosis too. It makes me feel like they deemed it not important/"severe" enough for further assessment/support, but I have no idea if that was the case!



dtodd0191
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01 Aug 2018, 9:56 am

I live in Tyne and wear for me it was.

GP referral > 18 month wait >

3 hour assessment with 2 clinicians with me and my partner >

10-15 minute wait > verdict given immediately

(ASD - as they no longer diagnose Asperger's)


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domineekee
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06 Aug 2018, 4:59 am

I've just received my diagnosis. 3rd appointment which lasted for half an hour. This process has taken 9 months, we still use the term Aspergers here in the UK.



rowan_nichol
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06 Aug 2018, 5:58 am

Well done getting through the process.



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06 Aug 2018, 6:08 am

I'm not sure why you should pursue a diagnosis as in the uk the government have cut back on so many services, there are so little places that offer mental health support albeit aspergers having little support needs until you get into difficulties such as issues in the workplace or domestic issues. These days a diagnosis of autism by itself is not enough to get disability benefits, you need to be disabled enough for instance to not be able to look after yourself, unable to go out by yourself or have great difficulty in communicating (stammering doesn't count).

Maybe you weren't looking for any of these things and were just looking for closure, even then not being diagnosed in the first place wouldn't have made a difference, though I might have had more luck with jobs if I hadn't been held back so much.



domineekee
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06 Aug 2018, 8:19 am

I have my reasons. I used to live in the woods and I'm liable break something over my head when I get stressed, it's not pretty.
I'm looking forward to going to the group meetings. This will help my sister get her 2 boys diagnosed and access help and they will know that they are not so different.



MrMacPhisto
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07 Aug 2018, 10:44 am

I don’t remember being diagnosed as I was only 11 years old at the time. Am 32 now so that is how long I have known.



alicem
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07 Aug 2018, 1:51 pm

I think you are lucky to get a diagnosis as an adult at all in the U.K. In Hull they will not assess you unless you have other mental health issues which to be fair I had (depression and anxiety) but was too autistic to realise it was that bad. My GP told me he'd never known an adult diagnosed in Hull while he worked for mental health services. He also claimed he had referred me to Leeds/Sheffield but that was over two years ago and I've heard nothing since. The only thing I have heard was that if I did get a diagnosis I would not be eligible for any support in Hull.

A local autism charity was amazed I'd been referred out of area at all as apparently it's very expensive. I suspect the GP was just making it up to fob me off!

I only really wanted the diagnosis for protection in the workplace as I've suffered so much bullying and I thought it might give me a chance of a career as I have great qualifications. I've gone self employed instead.



domineekee
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07 Aug 2018, 3:00 pm

alicem wrote:
I think you are lucky to get a diagnosis as an adult at all in the U.K. In Hull they will not assess you unless you have other mental health issues which to be fair I had (depression and anxiety) but was too autistic to realise it was that bad. My GP told me he'd never known an adult diagnosed in Hull while he worked for mental health services. He also claimed he had referred me to Leeds/Sheffield but that was over two years ago and I've heard nothing since. The only thing I have heard was that if I did get a diagnosis I would not be eligible for any support in Hull.

A local autism charity was amazed I'd been referred out of area at all as apparently it's very expensive. I suspect the GP was just making it up to fob me off!

I only really wanted the diagnosis for protection in the workplace as I've suffered so much bullying and I thought it might give me a chance of a career as I have great qualifications. I've gone self employed instead.

I'm sorry to hear that it isn't possible where you are.