A Question for UK Aspies

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I'm writing this on the tail end of a meltdown I had after finding out I didn't get a job I was really after so apoligies if this is a tad incoherent.

Did anyone else in the UK feel like they had to jump through hoops to get a diagnosis? I've had to go through three clinical psychologists, a mental health nurse, two GP's and a non-specialist hospital before I was even considered for formal diagnosis at the South London and Maudsley.

What happens after the diagnosis? How many times will i have to go to the hospital? Do things get any easier after the diagnosis?
Christ, I'm upset again. I hate my f*****g job. f*****g retail.

I am in the process of getting a diagnosis. I have just been referred to an adult mental health hospital to see the specialist there. They usually only deal with adults who were diagnosed as children but my GP has made a request that I be seen.

I'm not sure how long I will have to wait, but I feel like I am getting somewhere now.

I'm sorry you didn't get the job. Try not to let it get you down too much.

Anyway, too the topic. I know very well what you mean about jumping through hoops in the UK. The problem is the twofold here. The glacial slowness and bureaucracy in the NHS and the fact that a few key people and specialists act as the gatekeepers to services. If you don't get on the right side of these key players you are truly stuffed. I had wanted to get referred to the Maudsley myself as I live locally, but run afoul of a psychiatrist at another support clinic (very close to Maudsley) who specialises in behavioural problems and therefore sees everything in that light and will not assist me in referring me to adult Autism or Aspergers specialists. Month after month goes by with me having to chase up my GP in order to progress things (with very limited success so far).

I think a large part of the problem is that if you are an adult nobody wants to know; after all you got this far without any help what's the problem eh?

I just can't believe there are only THREE hospitals in the whole country that will do a formal diagnosis: South London. Oxford and Cambridge. The latter two won't even consider seeing you unless you live in their boroughs.

I had exactly the same problem. I was initially referred to CAHMS with 'behaviour problems' when I was 14. I spent the next three years being told that I just had to 'behave more normally' to be happy. The shrink actually thought that if I started reading girly magazines I would be cured...

So then I got to 17 and after a huge fight with the mental health services I was an adult patient. They said they knew nothing about autism and decided to diagnose me with a personality disorder (not specified) instead... We fought for a following two years. I was then sent to a neuropsychiatrist who recognised my Tourettes (a paediatrician had already mentioned TS when I was 15 but CAHMS didn't want to 'label' me...) and my OCD but also admitted he knew nothing about autism. He referred me to the Maudsley. At the Maudsley I was diagnosed with high functioning autism, Tourette syndrome, OCD and possible ADHD. A plan was put together for the adult psychiatric unit as to how they could help me... They got the plan on the other end and didn't impliment it. The psychiatrists continued to try and convice me that I didn't have any of the above and that it was all a personality disorder.

It took another two years but now I am in a specifically autism care home. I'll be moving to Cambridgeshire soon so I might be in the right borough to get seen at Addenbrookes. Strange how they won't take out of county though because at the moment I am in Bedfordshire but my Tourettes is treated at Addenbrookes...

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I have HFA, ADHD, OCD & Tourette syndrome. I love animals, especially my bunnies and hamster. I skate in a roller derby team (but I'll try not to bite )

I'm sorry about the job. *hugs if wanted*

It was likely easier for me as I was diagnosed when I was 12, but I remember it as clear as day. Three psychologists, one paediatrician, one GP, one speech and language therapist. It sucks but looking back, I prefer the diagnosis team being so many professionals with experience, because this way I definitely know I've got it - rather than going to a doctor, being told I have or haven't, who may or may not know what he was talking about, then walking off forever.

Anyway, again, I don't know how relevant this is going to be because of my age, but after diagnosis things got a LOT easier. (Well, I denied it for a few years which led to some bad circumstances, but I'm talking none-personal.) I was able to inform higher-ups who could then understand my differences and give me some leeway in certain areas, and loads of people talk about the peace of mind of finally realising why they were different, and having it properly confirmed.

I'm sorry you're going through so much hassle, though! >.<

Simple answer - Yes!

Although I've been one of the lucky ones, I think. Well, sort of. I've been flirting with the NHS for years, but finally got pushed into the mental health system properly in 2000. Between then and now I have been diagnosed as:

Depressed
Manic Depressive
PTSD
ADHD
Attention seeking
Personality Disorder
Anxious
Well


I was the one who suggested AS, and I was the one who spent 3 years persuading my GP to accept it as a possibility. Once he was on board, then he stopped at nothing to try and get me a diagnoses, bless him . A new clinic opened in Reading, so I was referred there and got a sort of official diagnoses. However, now Paolo Trep has said there are only 3, I'm wondering if it was a proper diagnoses or not!

I feel extremely lucky. I was prepared to jump through all sorts of hoops.
I have been treated for depression & anxiety on and off for the last 11 years.

I went to my GP earlier in the year and suggested that an autistic spectrum disorder might be the "root cause" of my mental health issues (which I would go through periods of ignoring as best I could and others where I sought treatment, which was always ineffective). Something I had suspected for a while but never been brave enough to voice.

Actually, I wasn't brave enough to voice it. I wrote it down and handed it to her. She immediately referred me to the adult mental health service. At my first meeting there, it became clear that travel to a specialist assessment centre was not practical for a number reasons.

I met with a psychiatrist there, who consulted with the local autistic society. Over a period of several months I was interviewed, observed and given a forest worth of questionnaires to fill out - in total I was probably interviewed/observed for about 4 hours, and the questionnaires probably took me another couple days (they were complicated ... I struggled and wrote a book of explanation to go with my answers).

I did not want my parents involved, so I provided information about my childhood using school reports and notes from a conversation I had with my mum about my early development "for a research thing I was taking part in". I didn't think they'd be satisfied with that as they initially had asked to interview my parents, and was trying to come to terms with talking to my parents about this, but they said the information I provided was sufficient in this case.

I was diagnosed with Autism Spectrum Disorder. I was told it was obvious from the very beginning. I was also told that there was no evidence of any mental health issues or personality disorders except a high level of stress caused by living in a world that was not designed for "people like me", and that this level of stress when it got too high or went on too long without being alleviated ended up with depression & anxiety. It was a relief to know I am not crazy.

They are now applying for funding from the PCT so that I can receive ongoing support from the local autistic society. I don't know if they'll be successful in their application for funding, or what the ongoing support will be if I get it. But they clearly realise, that although I seem to function well (I am married, I work part-time in a job I've had for 6 years etc) there are definite area that I need support in.

Like I said. Very lucky. I was really surprised - I didn't think I'd be taken seriously. And I realise that what happened for me is somewhat unusual - most people really do seem to have a rough time getting diagnosed as adults in the UK.

EDIT: I would like to go through a full assessment at one of the specialist centres at some time in the future, if possible, as I think it would give me a better understanding of my strengths and weaknesses.

I was diagnosed as a young child (aged 6/7), so a diagnosis was fairly easy (though I did see a lot of people).

It was my local PCT that told me about there only being three hospitals that would offer formal diagnosis.

To be honest: it's more the support and aftercare I'm interested in. I'm hoping that they can somehow help me with finding employment that doesn't drive me to depression, as well as helping me control my OCD and my stims/tics.

I was diagnosed at 16, i saw lots of people before (from the age of 12 onwards) i went to CAHMS suffering from depression, thankfully my councillor suggested i be 'tested' for asperger's.

I have given up being diagnosed for the time being.
It seems like a hopeless and impossible task.

I was diagnosed with clinical depression at 13.
From then on, others including personality disorder, social anxiety, OCD, bipolar...it is absurd as if I see the local psychiatrist, he hones in on the personality disorder, discards any suggestion that I have Aspergers, prescribes therapy for a personality disorder, which obviously does not work, and I end up back at square one.

I have no idea how to go about getting taken seriously and getting a formal diagnosis, especially as the general psychiatric profession seem only interested in diagnosing things they can treat with costly medications.
On top of that, I would have to work hard to get a parent to respond to a questionnaire or to attend with me, to confirm how I was as a child.

It is a nightmare, if you are struggling with independent living and social isolation as a result of your issues.

Maybe I need to change doctors, as mine didn't even attempt to get NHS funding for me to be referred to the local autistic diagnostic centre based at the university here. (Southampton).

Ive never sought out a formal diagnosis. I had two sets of treatment at the maudsley for OCD, both of which were CBT which I never really took to. at the end of my second stint, the psychologist i was seeing said that she was 90% sure I was suffering from aspergers, that was around 3-4 years ago and I never followed it up, preffering to live in denial for fear of being different. Im now tempted to get begin the process of being reffered back to the maudsley to get an official diagnosis.

If you get a formal diagnosis, do they give you any help finding a job placement? Ive been out of work for 5 years now (on disability allowance) and would love to start working again and actually meet some people for a change, but I really dont know where to begin now, its been so long.

I previously posted this in a different thread but I think that it is worth re-posting with a slight edit.

I was diagnosed just over a month ago (that was in April). The whole process took a long time. After watching a TV program about Aspergers (i think it was Embarrassing Bodies) I did an online test on their website along with my wife. I scored well and truly in the potentially AS zone and my wife firmly in the NT zone. Did the same a few month later with similar results. Finally had the courage to ask for a referral from my GP around this time last year. Unfortunately I saw a student doctor who was on a placement and although he promised to go away and find out what options were open to me nothing happened. A month later I saw one of the regular practice doctors and asked what was happening. I suspect that although the intention to research the options and get back to me was in my notes little (or nothing) had actually happened. Once again promises of action were made.

At this point my wife, the wonder that she is, took over and wrote directly to the practice manager. After a number of letters that included the results of our own research into the options available in our region we were told that my case would have to be considered by a panel and if i was successful I would get the referral. This really was a battle to convince people that I would benefit from the diagnosis. I was successful around Christmas and got an appointment at the nearest assessment center which was in Sheffield as there was no provision where I live in West Yorkshire. I still had to wait another three months for the assessment.

Prior to the appointment I had to fill in a detailed questionnaire, which was unfortunately designed for parents to fill in about their children and their development. Its over 20 years since I left home and my mother, who probably also has AS, shut herself off from the rest of the family many years ago. On the basis of my answers the phycologist who assessed me was initially unsure if I had AS, but very quickly during the course of the 2 hour assessment he came to the conclusion that there was no doubt I do have Aspergers. He was able to provide us with an information pack which included recommended books and internet resources (like this site) but the Sheffield service does not have the resources to provide more support for people from outside Sheffield. They were however able to offer me a follow up appointment where I was able to discuss the impact of the diagnosis and steps that I am taking to manage the condition.

I am finding that the diagnosis is overall a positive thing, but I am finding that analiseing how much the AS has and will continue to affect me a bit of an emotional roller coaster.

Its was not an easy process and I would have really struggled to do it on my own. Now we are fighting to get further support as there is almost nothing in our area for adults with Aspergers or their carers / partners.

I didn't even want a diagnosis and they gave me one.

We must look really backwards when it comes to AS in the UK because our diagnostic process is so flakey and apparently it's pot luck as to whether you get diagnosed at all.

All my life I have felt like a mess and there is so much that could have turned out better if I had caught this earlier. The problem I find myself in now is that I have only recently discovered all about AS but am now a home owner working a job I despise and still making the same social f**k ups I always make. I'm not hoping for some miracle cure or solution but What I do want is some help and advice from the health service that claims so much of my tax money. If nothing else just for peace of mind.

I know that they will never be able to cure the condition but I really need help on how I am supposed to live with it , because at the moment I'm just surviving having AS.