A UK Adult Diagnosis (description, not question)

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Believing that people lurk for information about diagnosis that's relevant to their country and so on, I'd like to record my process. It'll also surely play a part in processing it myself. I am currently 29 and live in England. This is awfully long - I put a little timeline at the end as a sort of summary.

I first came into contact with professionals over psychological problems at about 15. At that time, I was offered counselling. I could not really verbalise my issues. I appreciated the time of the counsellor, but it was useless.
I visited GPs repeatedly in my early twenties. I was prescribed benzodiazepines and antidepressants at a couple of stages, which I came off of my own accord quite quickly and would not consider again.
In my mid-to-late twenties I had a period of struggling to work. I caved eventually and had to stop for a while, but did not lose my job.
I was referred for CBT. Just as with teenage counselling, I appreciated the open attitude of the therapist, but it was utterly useless. CBT requires a certain kind of playing-along or buy-in that I just couldn't accept. The therapist was the first person to mention Asperger's. It was more in passing, and not in fact a suggestion, among a few examples of underlying causes for problems like mine.

I was referred to Psychotherapy of some kind. This was a talking therapy based on early life social dynamics or something. The process caused me a great deal of additional frustration, bordering on anger, while I also found many of the sessions just comical, as I sat there wincing for 45 minutes in front of two well meaning but very serious therapists in a dimly-lit room.
I was discharged, essentially on the basis that talking therapy requires a person to talk. Communication problems being one of the primary reasons for my referral...
Their report suggested coldness in early family relationships could be making me peculiar.

I mentioned Asperger's, finally, to my GP. My GP thought this was highly unlikely, but looked into it – that is, as I understood it, researched who I would actually need to be referred to. The answer was unclear. Clinical Psychology wouldn't have me. I don't know why. Eventually, I was referred to Neuropsychology, on the basis that I had a pre-existing organic neurological condition that could – not likely, but feasibly - be causing me problems. The waiting list for Neuropsychology was about 6 months or more, if I remember correctly.

I spent approximately 3-4 hours over several sessions with a consultant neuropsychologist doing a battery of tests of function. The results were excellent generally, but with certain asymmetries or weaknesses. I got a report – it included a completely 'blind' IQ score, which seemed like a bonus, despite not really respecting IQ numbers. It's rare to be given one so formally.
The consultant all but scoffed at the previous therapists' conclusions that implicated my parents, ruled-out my pre-existing condition, and gave me a 'working diagnosis' of AS. Quite what a working diagnosis is, I'm still not sure, but his next move was to refer me to the local Adult Asperger's team. Which I did not realise existed until that point. The waiting list for the adult Asperger's service was easily 8 months long.

I had an introductory session of about an hour. After a gap of perhaps a couple of months there were two assessment sessions of 1.5-2 hours each with two different specialists. The first was based on describing my early life – the service ask to speak to family, but it is not a requirement. I expect it has an effect on the thresholds they use a bit, having to rely on self-reporting. I did not agree to involve family. I just don't have that kind of family. The second part was technical, structured task-based assessment. I believe the report from Neuropsychology might have been considered as additional evidence along with their own tests.
I was told the day after that I met the diagnostic criteria and therefore am officially diagnosed.



I think it's important that I did no research before assessment, but even more important that I made notes about my childhood and problems in general in advance.
I've come to think that it is a generally positive thing that I was not diagnosed in childhood or adolescence. I personally believe a diagnosis early on might have molded my behaviour and general course more than the condition itself. I can't say I understand myself better with the diagnosis, only that it gives 'context.'

Immediately following assessment, I was quite calmly and sincerely convinced that I would not be diagnosed. I thought of all the aspects of my life that don't fit 'classic' AS – very good dexterity, no trouble with sarcasm, having next to no sensory issues with foods... In the moments I knew I was about to hear the verdict, I was suddenly desperate to be told that I did not meet the criteria – I was filled with inner rehearsals of revealing it to my family, all full of doom. But the moment I knew specialists had decided that AS does fairly reflect my difficulties, all the fear went away. In an instant. I wasn't happy and I didn't, in fact, feel numb. I was just calm.

The feelings I feared are starting to appear, in phases, but in much milder form than I expected. The main one being of some invalidation: that my choices and successes would be less legitimate in others' views.


I have no plans to tell my family. My father is old, I think it would confuse or upset him. My mother probably has a clear idea of what she thinks AS is, and I doubt that I would fit. Siblings wouldn't keep it from my parents.


Curiously (for me), I have a couple of the supposedly big comorbidities – I have GI problems, am a controlled epileptic, I love cats and am very depressive.




The experience was one in quite a long line that make me very grateful for our medical system (the idea of personal insurance being a factor in this makes me feel very bad for people) - each step closer to assessment was based on referral 'on merit,' so to speak. On the other hand, it's obvious that GP understanding or even awareness of the existence of services is very uneven, and that the services (even their existence at all) are extremely uneven and underfunded. Ultimately, the fact is that it was only having a pre-existing condition that got me the referral which in turn got me the Asperger service referral. That from first mention of the word Asperger's to assessment took about 2 years and not more, while I tried to convince a GP it might be worth pursuing (or perhaps gave up), was basically fluke.

- At no point did I have to justify why I thought AS was worth looking in to to my GP. The suggestion was made independently by the neuropsychologist. My whole process does not seem to be typical, as it took me all over the place. But on reflection, perhaps there really is no typical route open to adults in the UK, if indeed there is anywhere.
- There is a study being carried out at the moment which might inform standardisation and access to adult AS services across the country. I was asked to participate when I first came to the service, and have agreed to. I'm hoping the follow-up surveys in the future allow for proper opinion and are more detailed than the first one, otherwise I'm not sure it'll be terribly useful.


Thank you for reading. I hope my description is of some use to someone. I really appreciate this forum despite being inactive, and wanted to post something informative. I think it was of some use to me.
At this stage, about one month later, the main change in my mindset has been towards my position at work. The formal recognition gives me just a tiny little bit of belief now that if anything went seriously wrong, I have this context, professionally approved and all, that just might help me to explain that other people's conclusions about me might be misjudgments. It hasn't been an awakening, and it hasn't been validating in any significant way, but despite that it feels helpful and I clearly haven't really come to terms with it yet.

Here's the condensed version:
GP> ~2 months >CBT : useless. Discharged...
months pass
GP> ~4 months >Psychotherapy: useless. Discharged...
months pass
GP> "Is there anyone who can investigate Asperger's in adults?"-"I think so. I'll look into it, though I don't personally believe you have AS"... > Clin. Psychology reject referral...
month or so passes
GP> ~6 months >Neuropsychology. Working diagnosis: AS, atypical...
Neuropsychology> 6-8 months >Adult Asperger's service: Assessment over about 1 month. Diagnosis: AS > 2 months > Full diagnostic report > 2 months > Follow-up meetings...

6/10 Would recommend, with some reservations.

I can relate to much of this. I also agree that a diagnosis during childhood can sometimes mould one's behaviour in generally unhelpful or negative ways. I think being "formally" classified as "not neurotypical" in any way has a powerful influence on development, especially if you have the capacity to understand and are constantly being made aware of all the ways in which you fall short of normality. For me, having a relatively early diagnosis, I think the effects were quite mixed but probably negative overall.

I don't think CBT is very helpful for many aspies who, like me, have been so damaged by past events and in complex ways, with issues partly resulting from the diagnosis itself, that a more in-depth form of therapy is more appropriate. Ironically, as I see it, CBT-like therapies are essentially all that is available - in-depth talking therapies having been on the decline for a long time and they are certainly not usually put forth as a viable option for aspergers.

Psychodynamic therapy, the Jungian approach in particular, is something I am becoming more interested in, having had very limited success with the standard NHS approaches.

I am curious about your reason for (presumably) wanting the assessment for AS and why you then feared that your choices and successes would appear less legitimate.

"Their report suggested coldness in early family relationships could be making me peculiar" - ouch, the ghost of Bettelheim strikes again.

Thank you for posting this, it's good to know the process I'm going to have to go through to some extent. I'm in my mid 30's and I'm seeing my GP tomorrow about getting a referral to a psychiatrist or clinical psychologist as my husband and I suspect I have Aspergers. I've compiled a list of my symptoms both now and from what I can remember from childhood and included a copy of my very old dyslexia and dyspraxia diagnosis. If I can get a referral, I know the wait list for an initial appointment is 6 months to a year as the services are very overstretched. So looks like I'm going to be going through this process for at least a year or more. Hopefully I will get some answers though at the end of it.

I just got my autism diagnosis a few weeks ago (also in the UK). I was diagnosed with ADHD about 8 years ago, which explained a lot, but seemed incomplete. Things such as inability to cope with change and meltdowns led me to look for an ASD diagnosis. I was already seeing IAPT for CBT and a course for people who are having workplace difficulties. After several attempts they eventually referred me to the autism team, who sent me a screening questionnaire. After this they sent my mum a questionnaire (with my permission) and I had 2 long appointments with the same doctor and he spoke to my mum on the phone (they wanted a family member at 1 appointment but she isn't local). My husband came with me to the 2nd appointment. At the second appointment the doctor told me I do have high functioning autism, and that it used to be called Aspergers. This means I have to be treated fairly at work.

Hi, I found this thread whilst Googling about this very subject. I was diagnosed with bipolar disorder 7 years ago (which I think is right), but have other issues. My new psychiatrist spotted some red flags for ASD and has written to my GP. My Community Mental Health Team do the ASD assessments, but the GP has to make the referral. The problem is that there are no services for ASD in my area, so is it even worth getting a diagnosis at this point?

Incongruent Sharks - I'm in a similar situation. I've also been told that there are no adult diagnostic/support services in the area, and that the local psychiatric/mental health team don't care about adults with autism. My GP is attempting a referral to them but has told me to expect them to refuse. The attitude seems to be - "If you've made it to adulthood without support, they why should we offer you support now?" It's extremely frustrating and I'm finding a lot of the research needs to come from you as the GP & local mental health team are fairly ignorant.

However, I've found that there are support services in the area that can be accessed. Contacting the National Autistic Society - they should be able to point you in the direction of someone that can help you. Even if there aren't local groups or services now there might be some in the future.

Perhaps one of the other members with more experience may be able to advise more?

I'd finally like to add a few words about receiving the diagnostic report.
The document was about 2 pages, mostly narrative with one single score - which was for a practical emotion-inferring test. However, there were at least 2 other questionnaires during the assessment but no other numbers were included. I felt like the report could have ended "...determined that he does not meet the diagnostic criteria" and most of the above sections would still have stood. What I mean is, despite a few specific identified strong issues, several sections read quite ambivalently. This left me feeling quite sad. In their opinions I was clearly diagnosable, yet the only supporting document of their reasoning wasn't quite as strong, so to speak, as I'd hoped. I suppose I simply fear other peoples' doubt. That's the issue.

(It was curious that I thought I would do very well on the emotion assessment. It turned out that my score was much lower than I expected but still closer to the control average than the Asperger's average - that is to say, that a person can "pass" the emotion-reading element and still be diagnosed...)

I've come to see wishes and urges as a sort of large weather-system. They might have a general tendency on the whole but are full of contradictory patterns and forces, some of which are powerful but limited to small areas etc. So, my feelings about it were murky and completely contradictory. At it's simplest, I think I felt my life is heading for a precipice, my functioning is going to fail soon - I know I'm unusual, where would the authorities place me in the scheme of people in general? Or just, Life is too hard, what do they call this type of living? Any implications of it were secondary.

My successes and interests I've managed to keep a roughly dignified attitude to, but most of my concern is how they'd be to others. I have a an extremely weak sense of myself (which I'm going to suppose a lot of readers on an autism forum also do) and essentially can't "self-advocate." I don't want to be a sad case. Socially, it's very likely that I already am.

The main dilemma or just mental busy-ness the diagnosis has given me is simply whether to tell, who to tell, how to tell, what to tell, or what it would even mean to tell anyone.


As for services, I think even in the areas where the services don't exist (this is so frustrating to hear about), I think what twix said is relevant to everyone - that you have something to fall back on if expectations of others' who don't understand your issues cause social or workplace problems, or some other formal problems that maybe aren't easy to anticipate some time in the future. Myself, I'm not even sure what my local services are yet (although I sense in the scheme of things in the UK they are quite well-developed). I'm not sure to what extent I will use them, only that they'll see me a couple of times to essentially talk me through things.

It's also interesting to see what people in the UK are being diagnosed with. We've talked a little bit about this in a couple of places: Whether the DSM-based ASD-but-not-Asperger's is spreading or going to become standard in the UK. I was diagnosed specifically with Asperger's Syndrome. I'd be curious to hear from people here who are going through assessment, or have done, about which term is being used in their area.


P.S. Is anyone taking part in the SHAPE study of adult services?

I can think of a few people who need adult social services, I hope they get the support they so need.

My statement says that I meet the criteria for a diagnosis of an "autistic spectrum condition."

There are no services for autistic adults in Merseyside.

Diagnosed 3 weeks ago. My paperwork says 'this would be termed autism spectrum disorder under the dsm 5 classification but the ICD-10 classification retains te diagnosis of aspergers syndrome, which I prefer to use in cases such as that of Mr XXXXX, who is very highly functioning'

I was referred to the local aspergers team by my doctor last year after things getting really bad with my girlfriend, I got an appointment a few weeks later for an initial assessment and they decided i showed enough of the signs to be put on the waiting list for a proper assessment. That took about 15 months and is happening tomorrow!!

Still got mixed feelings about it, when i originally found out about aspergers it was like it suddenly explained everything about my life but my parents have to attend an interview next week and I just get the feeling that they're going to go in and say I was totally normal and that'll be the end of it Then I've got another appointment in 3 weeks time where i guess I'll get the verdict.