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to be rather shocked by letter from hospital about adult Aspergers possible assessment/dx??

(39 Posts)
GreensleevesFlouncedLikeAKnob Thu 27-Aug-09 17:28:23

I posted this in SN first but then realised lots of people have it hidden because you have to opt in

I asked my GP a while ago to look into the procedure for an adult with suspected AS being assessed possibly diagnosed

he had no idea whatsoever but said he would write to the staff psychiatrist at the hospital

I have a copy of the psych's letter to my GP in response, here it is verbatim

"Essentially, XXX Partnership NHS Trust has no current provision for specialist assessment or investigation of Aspergers Syndrome. The diagnosis is one which I or my consultant colleagues would certainly take into account as part of a general functional assessment of somebody's mental health within the context of a referral to Adult Mental Health Services. However, neither I nor my colleagues would consider ourselves as expert in this field and such an assessment would need to be viewed in the context of a generic mental health assessment.

I am aware that our colleagues within the Learning Disability Service do take a specialist interest in this area but are not in a position to offer assessment to high functioning adults (basically anyone without a clearly defined learning disability)

While I should be happy to offer your patient an appointment if you were to request it, any assessment would therefore necessarily be somewhat limited. Additionally there is no specialist service currently available to patients with a diagnosis of high functioning autistic spectrum disorder"

Is this a normal response? It basically says they won't assess, diagnose or support an adult with a possible ASD?

GreensleevesFlouncedLikeAKnob Thu 27-Aug-09 17:32:43


3cutedarlings Thu 27-Aug-09 17:37:52

hmm Seems very odd to me greensleeve although tbh im not surprised sad. Have you thought about contacting NAS? or could you ask your GP possibly refer you out of area?

Bathsheba Thu 27-Aug-09 17:38:07

My DH has very suspected Aspergers (suspected by everyone) but we have been told that getting an adult diagnosis is almost impossible.

I've been told that having a diagnosis would help us (and make me less likely to kill him on occassions) but its very very unlikely to happen.

I'm in a fairly major city (in Scotland) with a very large teaching hospital and a Psychiatirc hospital 5 mins from my door but we know we'll never get an adult diagnosis.

GreensleevesFlouncedLikeAKnob Thu 27-Aug-09 17:40:09

when I mentioned to my GP initially that I was considering exploring the idea he said "Why? What's the point? I can see why one would want a school-aged child to have a dx, but what do you want it for?"

IUsedToBePeachy Thu 27-Aug-09 17:43:14

Sounds about right Greeny. Am aware ds1 will be entirely our responsibility post 18, and that if he needs care it will be down to us and us only.

the reason is the reise in asd has meant they have to prioritise but its not right that anyone vulnerable should be left alone to fend. Indeed, atm it looks as if ds3 will be ineligible forcare as he has a normal IQ< even though he is relatively high needs overall.


Presumably when I die the boys will be left to go feral and in ds3's case starve, in ds1's get a prison spell

<<insert any sweareing you wish and more besides>>

GreensleevesFlouncedLikeAKnob Thu 27-Aug-09 17:46:52

jesus, I had no idea this was typical shock

I don't actually need a diagnosis I suppose, although it would have been nice to have had the option of finding out, for self-knowledge I suppose, and to put my memories in some kind of context

and it might have been helpful for ds1 who has a dx and for dh who has to live with us

but it's not essential

but the absence of provision for children with a dx once they hit adulthood - that's appalling sad

Bathsheba Thu 27-Aug-09 17:47:49

And, to my mind, its actually good to know that the professionals sending the letter are aware of their limitations...

I'd far rather have that than have a diagnosis being not give or being misdiagnosed by someone who knows a little bit or who knows about children but not adults.

One of the reasons that adults are so incredibly difficult to diagnose is that they have learned the coping strategies over, say 40 years..

IUsedToBePeachy Thu 27-Aug-09 17:53:39

Greeny, on what I know I could get a dx if assessed pretty quickly

But yes- a lifetimes worth of coping mechanisms has amde it hard for toehrs to spot. if you know me its obvious (and Dh agrees) but......

Sometimes I think it would be nice though- if someone is getting at me because I cant use a telephone to make calls (OK on receiving them ) or whateer.

but whilst it may have been massively iomportant and saved me lots of worries and catastrophes at 15, not so much now.

BTW am in taunton area every Sat between mid sept- mid nov

GreensleevesFlouncedLikeAKnob Thu 27-Aug-09 17:56:33

the telephone thing is a major problem to me too

I can't answer it and will do anything to avoid making calls (I bribe dh to do it)

and other things, like the raging inner hermit that makes me want to get rid of all my friends and hide under my bed, even though I KNOW I would be bereft without my friends

I don't think I would be partidularly different to diagnose tbh, to someone who knew what they were doing

I have to say though I hadn't thought about what sort of support etc would be available to ds1/other ASD kids when they leave school

am aghast to find that the answer is "nothing" shock

MaggieLeo Thu 27-Aug-09 17:56:43

Blimey, I'm surprised they're not more supportive. Did you chat to Amber on the SN board? she has Asperger's herself. She knows a lot of fora where your husband might be able to exchange info with other Aspies. My x has Asperger's (I would stake a kidney on it) but never officially dxd. Only realised it when our son was going through ADOS and DISCO. It's not easy, your husband must have acquired a lot of the social skills and coping strategies considered NT

GreensleevesFlouncedLikeAKnob Thu 27-Aug-09 17:57:21

in our case it's me rather than my dh Maggie grin

stubbyfingers Thu 27-Aug-09 18:01:29

I suppose it comes down to the person's needs (looking at it from my background in LD services). People usually come into contact with services when some basic needs are not being met, usually at a crisis point. So this could be a health crisis (mental or physical) or a social crisis. Services would then assess what needs are not being met and what the affect would be of ignoring this unmet need would be. As money is tight, usually only those with Substantial and Critical unmet needs get services and help, so people who are managing OK will not get any more help.

In my LD team, an Aspergers dx alone would not be enough to qualify for an assessment, but if the person had other social/mental health issues then other teams would deal with them, just as they would for other members of the public.

With the adults I have worked with (LD), their ASD diagnosis was a helpful indicator that they may understand the world differently, but everyone is so different that we still had to try and figure out exactly how things worked for them and what was important to them. I agree that the NAS may be able to offer good advice about this.

I'm sorry if that's a bit rambling. What were you hoping they would be able to help with?

Metatron Thu 27-Aug-09 18:08:01

<lurks in interest>

Another suspected Aspie here, interesting that you have the phone/hermit thing too. I find if I kind of surprise myself with making a call rather than thinking about it I can do it.

Goblinchild Thu 27-Aug-09 18:11:18

Isn't Simon Baron Cohen in Cambridge working with dxing adults on the spectrum?
There are several fora used for chat, support and information by adult Aspies and those who suspect they might be, and a lot of expertise on them that is very helpful.

Bigpants1 Thu 27-Aug-09 18:20:43

Hi. The response is pretty standard unfortuantely.
In children and young people, it is psychologists, not psychiatrists that dx Autism,and decide where you sit on the spectrum. The dx can be lengthy and there is strict criteria you have to meet.
A psychiatrist will look for possible signs of Aspergers in a genreal assessment of Mental Health, but does not usually dx.
We are in Scotland, and are finding, that young people with a dx of Aspergers, moving from child psychology or child psychiatry to adult services, fall through the net. The adult psychiatry service does not "want" them, but the Learning Disability Teams, will usually only be involved if the person has a severe learning disability along with the Aspergers. But, as you probably know, many people with AS, are very bright-doesnt mean, that they are not severly affected by the AS though!
The whole situation is frustrating and unacceptable. My advice, is to either find a private Psychologist who will dx adults with AS, or contact the National Autistic Society, who do offer adults dx-they also offer support and groups for adults as well. They have a huge reading list and fantastic wealth of knowledge and resources, and can also advise re benefits,employment rights etc. Good Luck.

MaggieLeo Thu 27-Aug-09 18:52:53

Sorry for that Greeny. Can I ask, what were the challenges for you, what made you seek a diagnosis.

So many parents with children on the spectrum and nobody with a chrystal ball to say how those children will experience their adult lives.

You could probably reassure a lot of people. (not that that's why you started this thread I know)

GreensleevesFlouncedLikeAKnob Thu 27-Aug-09 18:59:08

it is partly why maggie, in that it would be helpful for my ds1 for me to be able to say that we share some of the challenges and impairments that make his world different from that of his peers

but underlying it is a sense of need to have that validation for some of my memories - we all want to know who we are and why certain things happened the way we did

Since finding out more about AS because of ds1, I've increasingly felt a sense of familiarity with what I'm reading - I keep reading things and thinking "OMG!"

hard to explain why really - but I have grown up thinking of myself as limited in certain respects and as having atrocious social skills and lots and lots of strong anxieties etc - if I have AS, I would really find it useful to be able to SAY so to myself and others

does that exlplain? bit rambly blush

PinkTulips Thu 27-Aug-09 19:14:31

metatron... had to laugh at that... i do the surprising myself into making a call too, only it tends to back fire when it's answered and i panic and ramble a load of nonsense at the poor person i'm ringing blush

dyspraxia in my case, not really interested in a dx as i know whats wrong with me and like others have mentioned have evolved coping strategies... but am a bit miffed to think if i did want one for personal reasons i wouldn't be able to get one hmm

wigglybeezer Thu 27-Aug-09 19:25:12

Interesting post Greensleeves, I have two children on the spectrum (at the mild end) and have wondered about myself and DH too. Having done online tests, i come out as just over the boundary of normal DH is a bit more normal (if a bit geeky).
I have problems using the phone and tend to avoid even lovely friends at times (have dropped a few very good friends over the years when phone calls were needed to keep in touch).
I have actually read up recently on Avoidant personality Syndrome and feel that this is quite a good match for my problems and it can be helped by CBT! I am building myself up to getting myself some therapy as I need to be stronger to make sure I get the right help for DS1 and 2.
It can sometimes be very easy to convince yourself you have AS when you are a shy, self absorbed person, prone to anxiety and sometimes depression but I think it is actually more useful to treat individual problem areas, like the phone avoidance.
Having said that, I would be very interested to be tested by Simon Baron-Cohen's team but I am in Scotland too, very far from Cambridge.
Have you done any of the online tests?

qwertpoiuy Thu 27-Aug-09 19:37:16

I've always felt different, and was almost certain I had autistic traits - now my 6yo daughter has been diagnosed with Asperger's I'm even more convinced she has inherited it from me. I recognise a lot of her traits from when I was her age.

I'm married with 3 children and I work in a professional job. I don't know how I would feel if I got a definite dx now, I hate the way it's referred to as a mental disorder. I'm content with my life now, though was suicidal as a teenager.

I'm pleased my daughter has been diagnosed (was heartbroken at first)as I realise she's going to get the help she needs to help her lead a normal life. The first thing being worked on is her anxiety, then her social skills. She's also on a waiting list for OT. She's only 6, so I really hope the early intervention means she will grow up with a sense of belonging wherever she goes.

I agree with BigPants about seeing a private Psychologist.

qwertpoiuy Thu 27-Aug-09 19:38:04

Wigglybeezer, what is CBT?

stubbyfingers Thu 27-Aug-09 20:07:10

Yes Greeny, that does make absolute sense, not rambly at all. I too would (and do) want to have definite answers about my own personality, if only so that I can understand my strengths and weaknesses better. I'd like to make sense of it all. It would be nice for the messy bits of personalities and behaviour to be ordered and comprehensible so I totally get why you would want a dx, even if you don't want or need any help afterwards.

I agree that to term ASD as a mental disorder is bloody offensive, when it is just another kind of person. First step must be to contact NAS for advice I think.

wigglybeezer Thu 27-Aug-09 21:33:49

Cognitive behaviour Therapy, Qwertpoiuy.

MANATEEequineOHARA Thu 27-Aug-09 21:52:06

Doesn't surprise me at all from my experience! Also, that whole system is screwed up, I have had one of those 'general mental health assesments', which is probably at the same place they are on about to you. It was hideous, I have never been so patronised in my life. I reecently spoke to my gp about things on a similar kind of line...the advice in a roundabout way was go private!!!

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