Getting diagnosed in the UK

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OK, so I'm just about to ask my doctor (NHS) for a referral, because my workplace are insisting that I get a "proper" diagnosis instead of accepting the informal opinion of the occupational psychologist I went to last year to discuss career/training options. Their excuse is that Occupational Health can't help me unless I am formally diagnosed.

Perhaps my fears are an indicator of AS in themselves, but I want to know exactly what I am letting myself in for, and a DETAILED description of what the diagnosis session(s) will involve.

Most basic question first: who exactly must make the diagnosis? Must it be a psychiatrist, or can it be a psychologist? I'm worried that the former might try to push me onto medication, and I don't do drugs. Heck, I don't even drink alcohol or take aspirin for a headache!

The second thing is I find IQ tests very stressful (despite being in Mensa!). My occupational psychologist administered a WAIS-IV last year, and I'm wondering if I take my score report along that will be sufficient for their purposes, or whether it is general policy for these people to insist on administering their own test regardless. Especially since my WAIS report probably isn't of any clinical value due to "ceiling effects", which made my ability profile look artificially "flat" across the various index scores. Please reassure me that the clinician won't insist on another IQ test.

Also, what other types of tests are they likely to administer? I would feel much better if I can read the description of the tests on the test publisher's website beforehand to know what I'm going to be asked to do.

I assume they'll ask for a life history, but I've read that some clinicians ask for the person's parents to go along for this purpose. Well, my parents are 78, grew up in the War and will probably think I'm just making excuses for my problems in the workplace. I really do NOT want to involve them, or any other family member!

Apart from what I've mentioned, is there anything else I should know about in advance that I will be asked to do, or be asked about?

Yes, it has to be a psychiatrist to diagnose in the UK.

I've been wondering the same thing, I have been refereed via Occupational health for a full AS diagnose. However I am worried, I like to know exactly what will happen and wonder if anyone knows what format the tests take? what do they ask? Also I am really shy and find it really hard to talk to people i don't know, will this effect the assessment? as i probably struggle to answer questions.

You won't be the first to have this problem. They won't rush you.

Many psychiatrists don't use testing. I had 2 assessments 2.5 years ago and neither used any testing. They failed to diagnose me and I've since had a non-clinical assessment which found I do have it. I now have to wait to see if GP will refer me to a different area for re-assessment. My big issue is that they didn't do any testing and all the tests I've done say I do have it, so I feel there were valid tools they should have used and they didn't. For my new GP request, I typed up a very long report on myself with all the relevant behaviours and things going right back to my childhood, as it wasn't (and still isn't) possible for my parents to be present. I needed to do this because I can't put myself across properly when speaking to people and this was what I feel also meant that I couldn't get them to see the depth of my issues. My non-clinical assessor told me that many psychiatrists won't even assess without access to your parents, but this isn't the case for all.

If they do test in your case, the ones they might use are AAA (Adult Autism Assessment) (which I think includes the AQ and EQ within it) and/or Autism Diagnostic Observation Schedule (ADOS-4) or even the BAP (Broad Autism Phenotype).

The issue in the UK is that there is no uniform method of assessment, and it varies between authorities, some claim insufficient funding for adult diagnosis. Honestly, I would jump at the chance if I were in your shoes, testing or not, that's just me though and everyone has their own reasons for either wanting diagnosis or not.

I wasn't diagnosed as an adult but I was 15 so I remember it fairly well.. though I'm sure as I was technically a child the tests would be different. I don't think they're interested in IQ, it's nothing to do with intelligence, but social skills and communication. They asked me a lot of things about feelings, my own and other peoples, and my relationships with people etc.
I am just wondering why you want to be formally diagnosed at all? In my experience a label is only of use if there is something to gain from having it. Do you need extra support or help? Because tbh, I find the label more of a hindrance than a help and live in almost constant fear of someone finding out...

The only reason for seeking a diagnosis is because my company's HR manager has insisted on it. I managed to get disciplinary proceedings stopped by mentioning AS. Basically what people in the company were moaning about had nothing to do with my subject knowledge or hard skills, but they seem to expect certain behaviours from me that just don't compute, e.g. chasing up bosses for things.

I don't want pills and I don't want therapy. The main thing I stand to gain is a diagnosis covers my back in case of workplace problems in the future.

I don't think I have any other comorbid conditions e.g. depression. Although having said that, I think I am legitimately sad and frustrated that I have never found my way into a career commensurate with my abilities, in most part due to not having received proper support or appropriate opportunities at school, and somehow having never found a way to fix my education and career once out working (I have bits and pieces but no full degree).

It seems really unfair that they'd bring disciplinary proceedings against you for that to be honest, surely they could have just explained to you that you need to chase things up if they're not done in x amount of days etc, things like that. I can see how a diagnosis would be helpful in that situation, at least you could explain why you don't naturally do those things.
I was practically a mute when I was diagnosed and I talked very little through the diagnosis stage, though they did ask me questions I didn't answer most of them. I was only sent to see a psychiatrist because I was depressed, and referred to a psychiatrist and psychologist from there because he suspected AS. My diagnosis was almost entirely based on what my parents told them, they based a lot of the diagnosis on things I did when I was younger, like repeating what people say, and using the same words as others but out of context, ordering things etc. I remember them being told at the time that because I was intelligent I had managed for a long time to cover my difficulties and more obvious signs of AS. I suppose you work out ways to act more normal as you get older, so as an adult you would compensate for the skills you lack in other ways, which makes it a lot more difficult to diagnose.
The down side is that once people know sometimes they treat you like you're an idiot. Or at least in my experience and that of people I know they do. When my Mother told my now mother-in-law she started talking to me like a 6 year old, even though she'd been treating me like anyone else for a year or two. Often people assume you can't do things that you can because you have AS. In my experience once people hear the word autism, they don't want to know any more, which is why I don't tell people now... unless I'm online and anonymous xD

I can see how this has happened, once disciplinary proceedings have started it's unfair to others to dismiss them and break with the disciplinary procedure. The employer is under no obligation to pause proceedings while an official diagnosis is sought, so despite appearances they are being reasonable.

MissMoneyPenny you really have no option here, but to go through whatever you need to do to get a diagnosis.

Best practice information on Autism Diagnosis and Treatment for adults is available to view here: http://www.nice.org.uk/CG142 Unfortunately this is so new, that if you read it all you'll be better informed than your local health care professionals.

Good luck!

Jason.

ok....looooong reply coming..... and possibly a rant (cough).

so.... as said above, there is a huge disparity in the uk about what type of tests are used to diagnose AS- if you're lucky.
some areas dont even manage it. a friend of mine was diagnosed only after much hassling of a local AUTISM (ie, not ASDs) clinic- the staff admitted they knew little of AS, and only delt with children. they are the only clinicians for autism in his county. they did diagnose him, but it was based entirely on a discussion w his mother of his early years -_-
shocking.

another guy friend had simply the AQ and ADOS tests- both shortish questionaires, and the AQ test is VERY poor and hideously old fashioned, AND skewed to recognise only one type of as- mainly a male, geeky type. there is a very different type of AS in many females with AS (the so called female presentation, though id say a fair few guys have it too- but thats the general name used for it.)

i was eventually tested at a new place in london which *doesnt* need parental imput.

i had a medical history which was relivant- i dont know whether you will have any of this, either anecdotally or on paper- but this was vaguly looked at. id had bulimia and anoxoria as a teen, tho neither on my records- eating diosorders are common in girls w AS. id had a hearing test- which came out fine- cos i thought i was deaf as i cant follow groups conversations, ha ha. id refused group therapy as 'i dont really care about other people and i cant follow group discussions'- tho the moron to whom i said this didnt pick up on the classic AS-ness of this. there are still a majority of shrinks who know litlte or nothing about AS. i have medical records of digestive disorders- common w autism.

please dont think im being unhelpfully negative- im trying to point out possible areas in which you may encounter problems, so you can preempt them. its worth pointing out that some people have a good experiance, so pls dont be too downhearted. just be forewarned...

anyway, theoritically, if your PCT cannot provide you with correct dx or treatment, they are legally required to pay for you to be treated outside the area; in this case, dx without parents. this, however, does not work in practise.
contact a local autism group in your area- they will know the best route to take, and possibly whom to avoid/seek out.
if youd like to PM me for help or anything, please do ;D

anyway- SO.... generally- there is NO medication for AS. there are meds for co-morbid conditions- anxiety, depression, but tho i know ppl with AS that *do* take such meds, they all asked for them, except in one case, where the guy was simply floored by depression and was suicidal. in fact, meds would only really be offered AFTER dx, and most people dont GET after care. i got a few sessions. the friend dx'd at the child unit got just one afternoon, to dx him, no follow ups at all. tho it may happen, ive not heard of anyone being pushed onto meds, and for AS in the uk, its not really how its treated.... but, well, its not treated much at all...

its certainly reasonable to want to know in detail about the process, and probably a pretty classic AS response- we dont like 'not knowing'.
the tests i had, which ive gone through subsequently twice, as ive participated in several research studies into aspects of AS and they wanted a general comparison for participants are... 9 blocks which are red or white on most faces, then diagonally red and white on two faces. you are presented with a card with a red/white image on it & you have to replicate it w teh blocks. its timed. there are numeracy things- a bit of maths, bt mainly memorising a string of numbers and reciting it, backwards or forwards (poor working memory is a signifier of AS).

most of the tests are made by a company w the scarey/funny name of PSYCHCORP, and i went- 'oh my god!! ! thats so jason bourne!! !' ha ha, then went into a rant about the over americanisation of the uk (VERY a.s. response).

there were bits on describing a story, from a picture book (ie, no text), and cards, and explain what you see in this map (of america- another chance for me to rant, ha ha).

i had an extensive IQ test, tho this, anecdotally, is uncommon, which was general knowledge, and a huge list of words to explain (i think i scored 99% on that, ha ha). you can just call them up and ask them what process they use to dx- if they are insistant about parents; well... i dont know. it would be possibly unhelpful to do it, from my point of view, as your pct would be pretty unlikely to send you elsewhere which WOULD dx without. on the other hand... its so hard to get funding for dx outside your pct, its almost that or nothing. you can pay for private dx, but this may have less legal weight to it, if its done by a lone shrink. i looked into all this myself, and tho many places do private and NHS, most places do need parents. obvously this is w*k, evil and immoral. hence suggesting you contact a local support group. this al varies from area to area.

the stuff which you'd expect to be covered- whatever it is which makes your life odd or dificult, is NOT covered. i have synesthia, hyperthesia, and a bunch of weird AS stuff for which there are no formal terms- periods of muteness, very sociable but need to be alone a lot, etc- none of this is mentioned on my dx. all that stuff IS my AS; not some random selection of tests about numbers and short term memory; that's but an inch of me. i went nuclear when they showed me all that, ha ha.

ive searched for the actual tests online and none are available. you can buy some of the tests, but ive only seen them for a £k or two, and so its a waste of money.
none was horrible, some were vaguely interesting, most pretty dull.
this is the psych corp site-
http://psychcorp.pearsonassessments.com ... sments.com

anyway. the NAS have a pretty good leaflet on 'what to tell your GP' for this. despite flourish that at my entirely new GP (literally never met me before, didnt even have my medical records), and telling her in detail how i wanted to be referred, i was referred to a social worker at a local psych clinic, and had an epic battle to see someone decent. she just wrote me down as 'neurotic'. nice.

so- if you think your gp may not be up to the job, change. if id only rung round, i would have found the surgery in the other direction, where im now registered, which is AMAZING. one of the drs has AS, and has an active interest in it. either call round surgeries and ask about whether they have many AS patients, dx'd as adults, or ask a local autism group for guidance. google up local psych depts and call them and ask where patients are see, how theyre tested etc.
if you dont feel comfortable being yourself, say you have an adult son/daughter, think they have AS, and would like help. seeing a poor GP messed up my entire process, and ive heard of others w the same experiance. otherwise you may get a useless referral; if that person knows nothing about AS, it will compound the situation, as it will be even harder to start over.

read up on AS, esp female AS; there are some great threads on WP. unfortunatly, many clinicians have no concept of this- the first guy i saw in told me 'there is no such thing' and hadnt even heard of tony attwod, who is the leading writer (& all round good guy) on female AS. he told me catagorically i didnt have AS as 'you're too verbal' etc. he said that 'everyone' with AS is good at IT, and do 'only' science/it jobs. seriously; there area heaps of clinicians with this view. scarey.

go to your gp w a list of whatever your AS things are, and a print out of your AQ score http://www.wired.com/wired/archive/9.12/aqtest.html and explain youd like a referral to a specialist in AS in adults, possibly giving a name or clinic name. the AQ test is the primary screening tests used by most places. i think its useless, bt that's a side issue. f you want a better test, tho its not recognised by 'pro's', the aspie quiz, written by someone w AS, is excellent; http://rdos.net/eng/Aspie-quiz.php
it was useful for me initially, as it just crystalised yes-i-do-have-AS, as it covers a broader spectrum of symptoms.

its useful to write a shortish list of pertinent signifiers; the most common factets of AS a non expert will have heard of- socially akward, poor eye contact, dyslexia etc.
a long rant-y 7863245876 page rant, tho very AS, wont help your GP, unless they really know that's very a AS reaction. keep it short and to the point. remind/inform them of physical aspects- digestive problems, hearing tests etc.
if you're nervous, take along a friend or someone from an autism group. ALSO, and this is REALLY IMPORTANT, covertly tape it. if you do encounter problems later, you can refer them back to what you actually said- i have a mnemonic memory, but that's no use if you're dealing with busy ppl w poor memories, who have little conecept of AS anyway. i could have got the moron who said 'you dont have AS' in lot of trouble had i only taped him. he has since been sacked.... you're unlikely to have this level of hassle, but it will give you piece of mind; always be prepared, remember ;D

sorry this is epically long. meh- that's AS, ha ha. good luck with it.

read a tony atwood book; http://www.amazon.co.uk/s/ref=nb_sb_nos ... od&x=0&y=0

Im 30 yrs old and suspected i have Aspergers Syndrome for atleast 7 0r 8 years now. Im from West Midlands, UK. So I saw my doctor and explained my situation, who then referred me to a neurologist. After the 6month wait i finally saw a neurologist. We had a 90 minute consultation with also my mother present. I took along my school reports as requested and a Wechsler IQ test i did when I was 7.
After the consultation was concluded the neurologist suggested I had 'social anxiety disorder', and that he would send me to a psychiatrist and he prescribed some medication to me. I was very disappointed. Im not sure though that a professional would be willing to make a formal diagnosis after a 90 minute chat? My school reports and IQ test all point to Aspergers. My experiences and personality all point to Aspergers too. Im going to see the psychiatrist and take the medication as prescribed and see where it takes me. Im still hoping for a diagnosis, as I know I have Aspergers. Any feedback would be much appreciated

90 minutes is more than enough time. What problems did you describe? If it was all about difficulties in social situations then it is not so surprising that he suggested social anxiety disorder.

What in your school reports or IQ test points to aspergers?

Jason.

While I can understand that it may be wise for you to get a diagnosis, I'm not sure that what you have described of your employer's position is compatible with the Equality Act 2010.

While I can understand that the employer may require a diagnosis to activate their internal processes to support you, in fact you are still covered by the Equality Act 2010 without a formal diagnosis.

There is also no need for you to disclose any diagnosis to your manager, it would suffice under the Act for you to make Occupational Health aware that you have a diagnosis, or that you believe that you have a disability.

Once you have done that, the employer is deemed to have been informed of your condition and must act to protect you including identifying and making reasonable adjustments.

They already know that you ** MAY ** have an ASD, and that suffices for the company to be alerted to the risk of discrimination. From that point they have an additional duty of care towards you.

I don't believe they can force you to get a diagnosis. Pragmatically things are much simpler once you do have a formal diagnosis.

To force you to go through a diagnostic process and/or to disclose a diagnosis may in itself constitute disability discrimination (harassment) under the Equality Act. You have a right not to be subjected to the diagnostic process, not to disclose any result of such diagnosis and yet not to be discriminated against.

Moreover forcing you through diagnosis and subsequently to disclose the outcome places extraordinary pressure on the diagnostic process.

How do you feel going into diagnosis knowing that if you don't get a diagnosis you could lose your job?

Been there, done that, got the T-shirt. I got a diagnosis of AS, and that was a turning point for me. Things have got a lot better since.

If you feel any of this is relevant or important, you may wish to get legal advice. I am not a lawyer.

I wish you well.

This is an interesting point, because the HR manager does seem exceptionally keen to get the diagnostic process moving along. She asked me if I'd been to see anyone yet, and I had to say no, these things take as long as they do when it comes to the NHS. Even getting to see my GP is a miracle: they offered me an appointment a whole MONTH away when I phoned up.

Then she tried to press me for the name of the person I would be seeing and I had to say I didn't know yet. So she said the firm could pay for me to see a private doctor to see if they could get me referred and seeing a specialist quicker, and wasn't impressed at the idea of me waiting on an NHS waiting list, however long that takes. She kept on emphasising the "duty of care" angle, but if as you say the firm already has a duty of care, that puts a rather different complexion on things. She seems convinced however that the OH won't do anything to help without a formal diagnosis.

You are right to raise the question of the pressure this puts on getting a diagnosis, and what would happen were I to miss out on getting one, and this naturally is something I am very concerned about. I do feel that there are confounding factors that might make it easy for me to miss getting diagnosed: being female, being 40 something, having a long-term partner, having a job (even though that job is way below my academic potential due to not coping with the non-academic side of school life), and having an artificially flat WAIS profile due to having scored 19 on so many subtests. I have heard of at least one person being told they didn't need a diagnosis even though they exhibited all the signs, owing to how well they were deemed to have "adapted" in life.

From the perspective of doctors who deal with sick people all day, by comparison I guess I must look at least averagely successful in life. However, I know that I am one epic FAIL. Why otherwise would I be 160 WAIS and working as a f****** secretary?

Hi evening, this information is useful to my situation, please could you direct me to where I can find out more about this, thanks.

I went to the appointment with my GP, armed with my Aspie Quiz printouts and other test reports that I had assembled.

My GP was really nice about it, and when I explained to him the work situation that had pushed me into seeking a referral, he thought their complaints were very generalized in nature and thought that it could be that I just have personality traits or a working style that are at odds with the company culture. Nevertheless, he listened attentively while I talked him through all the various tests and other evidence that I had brought along, and dictated the referral letter on his recording machine while I sat there in his office.

He told me I would probably get an appointment with the specialist lasting about an hour, during which time I would be asked to fill out some kind of diagnostic inventory. No mention was made of having parents present. I only started seeing him as my GP relatively recently (after the lady we all used to see retired), while all the other members of my family started going to someone else, so he knows nothing about my family background.

I mentioned that I hoped it was a psychologist rather than a psychiatrist that I would be seeing as I don't want to go to someone who just wants to try and get me on meds. I've managed without for over 40 years.

I also expressed concerns that the specialist would try and pin some other label on me like "social anxiety disorder" when that label doesn't talk to my experiences at all. I'm not socially anxious, more like socially blind under certain circumstances, and because I'm blind to the situation I'm not aware of my behaviour to be anxious about it. I think my doctor took all these points on board.

Now all I can do is wait for the appointment letter to come through, and hope I see someone who knows what they're dealing with.