Rather shocked by letter from hospital about adult Aspergers assessment/dx

[GreensleevesFlouncedLikeAKnob]

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?

We have known for some time that my H has Aspergers & the first GP my H went to (in quite a distressed state) dismissed his suspicions. When I tried to speak, he literally waved his hand at me dismissively.

After a complaint to the practice manager, we were seen by another GP who agreed to refer my H to a psychologist. While waiting for this appointment, we saw Maxine Aston who confirmed that H does have Aspergers.

H had to chase up the NHS assessment (not easy for him), was seen by a psychologist(?) who accepted Maxine Aston's diagnosis & basically told him they couldn't help him but could offer counselling for any associated depression or perhaps for our marital problems (only I'm not allowed to accompany him!)

H doesn't see any point in counselling and is still waiting for the promised follow-up appointment, although with his condition, I'm not sure if he clearly understood if he was supposed to make the appointment or if they will contact him.

So, Greensleeves, it sounds as if the response you describe is common in the NHS - the attitude appears to be if someone can hold down a job & is 'managing' - they don't qualify for any help.

At risk of being shouted at and to ask some questions which are probably personal and I certainly don't expect you to answer but more to think about IYSWIM.

At least they are being honest with you!
They are certainly not saying they wont see you/can't help etc but saying it is not something they can nec. help with or are experienced in/funded to do,
However it doesn't mean it isn't worth seeing them, they may be able to diagnose, they may be able to suggest something or someone, if you think you can deal with the uncertainty if they can't it may still be worth going to see them.

I suspect a lot depends on what you want/expect to achieve from the appointment IYSWIM

Hope no one gets cross wiht me for posting that!

I see your point 1dilemma, and I think the response from mental health professionals reflects the fact that a diagnosis of ASD in adults, especially high-functioning, is a relatively new problem.

As far as I know, children are only now being offered learning & emotional support - a child of my generation with Aspergers would not have been acknowledged as having any need of support. My H did well academically, not so well emotionally & socially.

I have (unknowingly) supported my H through most of his adulthood, 'interpreting' for him socially & dealing with situations he is unable to cope with. We have decided to separate soon as living in an Asperger's world has taken its toll on my emotional health but I do worry about how he will cope by himself.

I feel that having a diagnosis - albeit obtained privately and expensively - at least gives him an 'official' explanation for his behaviour and lack of understanding in some situations and think if the NHS could at least offer support with for example employment issues it might be of some help to him in the future.

sorry to hear you're separating and can only imagine (or maybe that should be can't) the toll on you.

I was rather at you not being allowed to attend the counselling my comments don't detract from the screwed up ness of some of the policies just trying to point out that there may be something useful

although the issue may well turn out to be what next if it is totally useless and that may of course be more difficult than not being seen at all?

Worth seeing if the finances will allow a private diagnosis. Expect to pay between £400 and £1000 for this. The National Autistic Society has a list of private practitioners. It worked well for me.

Provision for adults with an ASC is so appalling at present that it defines belief, but at least the government acknowledges this now and is putting into place the new autism strategy/Bill which should mean health services HAVE to provide diagnosis and support at long last.

Meantime what we have is some 700,000 as yet undiagnosed and very exhausted, demoralised, depressed, anxious or otherwise stressed-out individuals with an ASC who have had zero of the vital help, training and support they needed for their whole lives. No wonder many behave in ways that are quite incompatible with good loving relationships with other people at present

Hi,
I have Aspergers Syndrome. I was diagnosed 6 years ago after asking my GP to refer me to someone. My local mental health team did the assessment. For me, the diagnosis was essential as it confirmed the reasons for my difficulties and allowed me to move forward. However, there were no support services for adults with high functioning autism/Aspergers. I thought I would get some support following the diagnosis and was rather shocked that nothing was available. I now run my own consultancy offering autism support and training. I don't do diagnoses though.

The Adult Autism Strategy is currently at consultation stage and due to come into force later this year. adultautismstrategy.dialoguebydesign.net/

You may find that services for adults improve significantly after this.

I was diagnosed a year ago, by a specialist centre for adults in Cambridge. As I lived in Cambridgeshire, I was able to get a NHS referral from my Dr.

my hubby was privately diagnosed with AS but i dont see any on going help except u can join a local group in most areas from the national autistic society & its free but not tried it yet.

Had basically the same response albeit spoken rather than in a letter. GP refers to psychiatric assessment team, they won't touch it, refer back to GP.

It's shocking isn't it. I found out how much private assessments cost and decided I'd rather buy a motorbike and just avoid people.

Just out of interest, why are you so keen on getting a formal diagnosis and what kind of help are you looking for?

Most areas have a local panel that assesses individual cases requiring extra NHS funding. They look at official guidance eg NICE guidelines and at letters from the GP and/or specialist, then assess the cost of the service needed and the likely benefits of treatment.
When there is no local specialist service, the ordinary GP and / or psychiatrist can refer elsewhere, and the primary care trust's panel needs to decide if they're prepared to pay the bill. I think there's new NICE guidance about adult autism which should stregthen the case for funding.

How much can it cost for a private assessment?

£400 to £1000 or thereabouts...not cheap

i've been thinking about getting a dx, my ds had a dx about 8m ago, and we are so similar all his probs are the ones i've suffered with. which is making me so anxious about his school years, he starts this year. in the meantime i'm struggling to cope with life, its falling apart. trying to deal with work, house, 2 ds's, one HFA/aspie, one NT and a OH with no emotional support and isolation. i think access to a life coach would help, but no funds to pay at mom. but by the sounds even if manage to get a dx, would not change much. life is just depressing even with 2 amazing kids.

obviously commenting to my gp, 'no you not.....'!

I've heard about this in a forum on disability. Someone I know of had a diagnosis of AS but was marked down by his manager in an appraisement. That is despite our employer (a large UK Blue Chip company) has full commitment against disability and other discrimination. But then again, that's usually the problem: Not company policies but the prejudices of some cruddy managers inbetween.
Anyway he doesn't have that awful man as a manager anymore.