It's official - UK nhs does not do adult ASD...

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MrGrumpy's last post was the kick up the arse I needed to stop lurking and join WP.

I am in Buckinghamshire, on the borders of Bedfordshire >_>. But my actual assessment and diagnosis was in Bedfordshire. A psychologist at Luton & Dunstable hospital referred me to the Community Mental Health Team (CMHT) in Leighton Buzzard for reasons too tedious and long-winded to go into in a first post. Suffice to say, it had nothing to do with autism, but I brought up the possibility with the first woman I spoke to: a really nice woman who I only saw the one time, unfortunately.

Anyway, she spoke to the consultant psychiatrist, who ended up discharging me from the entire service, but at least not before he'd referred me onto a place in Dunstable which offers an adult autism service.

Long story short: I got my diagnosis this year, aged 39. Had a preliminary assessment back in March, then the main assessment in July. You can't self-refer to the service in Dunstable, but a GP, specialist health service, etc. can refer you. Hope this helps, MrGrumpy dude.

EDIT: Too new to post links. All right, google Dunstable CMHT. Click the first link which comes up, then you should see Adult Autism Service in the menu on the left. You can find the Leighton place by googling Leighton Buzzard CMHT.

welcome to the forum 'nice cup of tea' [were not watching father ted tonight on e4 by any chance? is that where the username came from?] and congratulations on finaly getting diagnosed.

Hey Kingdom of Rats, thank you for your welcome. Nah, I wasn't watching Father Ted last night. I do like Father Ted, but my username actually comes from something much simpler - I like a nice cup of tea <_<. (I also have the same name on another forum. Not very good at thinking up new names, so just decided to reuse this one.)

Got to go out now, but will post some more later on if I'm not too tired.

G'day NCOT, and welcome to this discussion. Your experience with the SEPT organisation has obviously been beneficial for you, and I am delighted that you have had such a positive experience.

But, so far as I can tell from Google, the Dunstable CMHT and the Leighton Buzzard CMHT are one and the same - they are two of the many CMHTs which are operated in the area by the SEPT organisation. So it is a bit surprising that you were 'discharged' from Leighton Buzzard, only to be re-enrolled into the Dunstable branch of the same organisation. I only mention this because it seems to me to be a good example of the Bran Tub approach to the provision of mental health services. It seems to me that it was purely a matter of chance that the lady you spoke to at Leighton Buzzard was receptive to your own suggestion about autism - if your appointment had been on a different day, or at a different time, then the outcome might well have been completely different.

You give no details about the reasons why you were already on the radar of the psychologist at the L&D hospital, but, for what it is worth, here is a quote from the STEP website -

Referrals & Assessment
Criteria for Referral
? Clients must be 18 years and over
? Have severe or chronic mental illness e.g. schizophrenia or a severe affective disorder and are displaying florid symptoms not responding to treatment at a primary care level.
? Have severe depression-not responding to treatment at a primary care level
? Suffer substantial disability as a result of severe mental illness, preventing them from caring for themselves independently, sustaining relationships or employment.
? Have suffered recurring mental health crises leading to frequent admissions or interventions and individuals who pose significant risk to their own safety or that of others.

In my case, the only criterion which I can satisfy is the one about being over 18.

Final question - has your new diagnosis helped you in any practical way?

Best wishes, MrGrumpy - dude

Hi MrGrumpy.

Hmm, no, I went somewhere different in Dunstable. Would be so much easier if I could just post direct links... :-/

Okay, if you google 'beech close resource centre autism', the second link comes up with the Adult Autism Service page that I tried to link to before. It's located in Beech Close, fairly obviously. The Dunstable CMHT is at Beacon House, 5 Regent Street - I've never been there before. I confused things by mentioning it in the first place, but I was trying to get you to the AAS page. (Just 2 more posts after this until I can post links... -_-)

Forget Dunstable CMHT; the Adult Autism Service is something different to that.

I was under the radar of the psychologist at L&D for a reason exceedingly unlikely to apply to anybody else here >_>. Basically I had surgery for severe Crohn's disease which left me with a permanent ileostomy, and my GI referred me to him. He practised a form of therapy called Acceptance and Commitment Therapy, but I didn't get on too well with it. Or him. After a few sessions, I decided to call it a day. To give full credit to the guy, he could easily have just let me go without doing a thing, but he insisted on referring me to the Leighton Buzzard CMHT.

If you don't think you're mentally ill enough to be referred to a CMHT service, then ask your GP to refer you to an adult autism service himself. I went to the one in Dunstable, but there's also one at Twinwoods Health Resource Centre in Clapham, Bedford. Yes, in a way I did strike lucky, getting the referral when I did. But it's not all about luck. As I found out the hard way, most doctors take the path of least resistance. They will do the minimum to treat patients: the minimum number of tests, referrals to other specialists, etc. Very often, it's up to the patient to request (or even demand) further testing or assessment. It's wrong, but in an overworked health service, that's the way it is.

As for the diagnosis benefiting me in a practical way...

So far, no, it hasn't. To be fair, I haven't done much with it so far: joining this forum is about as far as I've got. How much it'll help with things like benefits I haven't found out yet. It can possibly help other people to understand you (or think they understand you): when I told my stoma nurse I was going to have an autism assessment for suspected autism, her first words were "I'm not surprised!". Bit galling on the one hand, but also nice to have an easy explanation for being weird on the other.

I'm at a stage in my life where I'm seeking to move out of home and the future is uncertain. I do not deal with change well and am hoping I can get some extra support if needed.

So knackered now, don't think I can write another word... >.>

Dear NCOT, I hope you are having a good day. Since I joined, I have found this forum to be highly supportive (and, above all, polite!) even though some of my opinions are highly controversial - I hope your experience will be similar. And I wish you every success with your current life plan.

Just out of interest, here are a couple of quotes from two posts of mine which follow on from my original post on this thread -

quote 1 - "As an update to my original post, I have now received a phone call from a counsellor who is attached to my GP practice, and who was obviously contacted by my GP after yesterday's conversation. We have an appointment for next week.

I am aware that I come over as totally negative about the possibility of benefiting from a professional diagnosis of adult ASD, but that's the way it is - if you get through school without being diagnosed, then it doesn't really matter what label is applied to your adult difficulties. If you are a danger to yourself or to the rest of society, then action will be taken. Otherwise, you're on your own"

quote 2 - "I have tried several times in my life to get some kind of help or explanation for my issues, and today I met a counsellor (thanks to my NHS GP).

I had already made it clear to both my GP and the counsellor that I was doubtful about the value of counselling .

But the counsellor appeared to be genuinely interested in my life story. She agreed with me that it was unlikely that she would be able to change my life for the better, and she also confirmed that she has no specialist knowledge or experience of ASD. She also seemed to accept my suggestion that autism (in all its forms) is mostly seen as a behavioural problem in schoolchildren which the authorities try to control with pills.

For the first time in my life, I was 'listened to'. I have no expectations of any kind of useful outcome, except that the counsellor herself may acquire some kind of addition to her repertoire of understanding"

I met the counsellor at the GP's practice in Leighton Buzzard, and the counsellor herself comes from a NHS partner organisation (like SEPT) which is based in Dunstable. She didn't mention mention Beech Close or LB cmht, but she did mention a private sector counselling service in Stony Stratford (which, for the information of non-locals, is part of the nearby new city of Milton Keynes). I wonder if there is any kind of commercial relationship between all these different NHS partner organisations...

But my main point, which I don't think is totally understood by some of the forum's members, is that I have tried but given up the idea that a professional diagnosis of ASD will serve any useful purpose.

People, me included, speak of the Eureka moment and the peace of mind which a diagnosis can generate, but it is often a short-lived result.

If you have impairments which need practical support, then you will simply have to demonstrate the nature of your impairments - the medical/psychological reasons for the impairments will have little significance.

I am in no doubt at all about my own self-diagnosis, but because I look OK, and can create a good initial impression, and have always been in full employment, I have accepted that I have to suffer in silence. I have attended several 'groups' over the years, but I got the impression that they function mainly as a day centre for people who don't have a job to go to.

ps - I am now retired, which is why I too have far too much time to spare - I mostly associate TwinWoods with the late great Glenn Miller!

Why did you want a diagnosis of autism if you have no functioning impairments and the Eureka moment/peace of mind are short-lived?

That's exactly the same question which I am asking of myself, the medical profession, and the people on this forum.

The last thing I want is any kind of diagnosis - I just wanna be normal.

You obviously missed this bit of my previous post -

but my main point, which I don't think is totally understood by some of the forum's members, is that I have tried but given up the idea that a professional diagnosis of ASD will serve any useful purpose

You mean that official diagnosis will not serve useful purpose for you since you have no functioning impairments?
Does self-diagnosis serve a useful purpose for you?
What is the purpose if you said that Eureka moment and peace of mind of self-diagnosed are short-lived?

People with functioning impairments will get help if they need it, and their 'diagnosis' will be irrelevant.

Physical illness which does not impair daily activities is labelled as 'low-level'. Mental patients whose condition does not impinge upon their daily activities are described as 'high-functioning'.

Both definitions provide a reason to offer no support.

Some people have said that they have received help specifically for functioning impairments specifically caused by autism based on their official diagnosis of autism.