Disappointment

[catlady]

I went for my initial assessement with the mental health team today. I wasn't sure who I was supposed to see; I was 'assessed' by a nurse and a social worker. We spent an hour talking, but it seemed we had to follow their agenda. They then talk to the 'team' who decide what my needs are. At the end of the assessment the nurse told me that I couldn't possibly have AS (not that she had actually listened to anything I said and kept steering me away from explaining why I think this is the diagnosis) because of the jobs I have done. I told her it was nonsense and that she had to accept that AS is not exactly the same for everyone and in particular it is different for women. I feel quite angry now and also rather powerless. She asked what I would do if they failed to give me the diagnosis I wanted. I told her I would ask for a second opinion from someone who understood AS particularly in relation to women.

 

I guess I need to start looking for that person now, because I am convinced they are going to put my case to the 'team' in completely the wrong light and I don't know how I fight it.

 

 

[baddad]

Hi cat lady - I'm sorry you didn't get any answers today, and I really can appreciate how frustrating that might be.

That said, though, I really don't think what you're proposing next is a good solution, or, in all honesty, even one that should be viable. Effectively you're saying if the current doctor doesn't agree with my own diagnosis of me then I will find one who will. I have absolutely no doubt whatsoever that you will be able to do so, or that anyone else looking for someone who will confirm their own diagnosis would meet with any major hurdles either, but I believe that is an unhelpful and potentially dangerous flaw in our medical system.

I hope you will appreciate that I am not, for a minute, suggesting that you should not seek medical advice and support for those areas of life you find difficult or problematic, but finding someone who will simply rubber stamp the label you have pre-printed before meeting them is a route that, IMO, could do far more harm than good.

 

L&P

 

BD

[catlady]

[i see what you are saying, but I didn't see a doctor. I saw a social worker and a nurse, neither of whom are qualified to make a diagnosis. If they had asked questions that were relevant I might have felt differently, but they didn't. And to say I can't possibly have AS on the basis of jobs I have done is just a nonsense. If I see someone qualified to make the diagnosis and they concur that it is not AS I would have to rethink. It's not that I want to have AS, I just want to get the right help having spent nearly 55 years getting the wrong help or none at all.

Edited August 3, 2010 by catlady

[Kathryn]

I think that's a bit harsh BD.

 

Since when are nurses and social workers qualified to diagnose AS?

 

Whether you have AS or not is obviously not for me or anyone here to judge, but from what you say, I think you've every reason to be concerned about the way the assessment was handled.

 

K x

[catlady]

Thank you!

[call me jaded]

I am perturbed by the amount of gate-keeping there is before you get anywhere near a doctor in mental health services. A second opinion is one of those great things about the NHS that we take for granted. Shame you con't get anywhere near a first one. Be persistent catlady.

[baddad]

I think that's a bit harsh BD.

 

Since when are nurses and social workers qualified to diagnose AS?

 

Whether you have AS or not is obviously not for me or anyone here to judge, but from what you say, I think you've every reason to be concerned about the way the assessment was handled.

 

K x

 

 

Hi again -

Sorry I guess there's been some misunderstanding here... I wasn't commenting in any way on the credentials of the people cat lady saw today to make a diagnosis. I didn't read in the post that they had made a diagnosis(?) And I wasn't (if that's what is being suggested?) offering any sort of diagnosis or judgement myself. I took the OP to be a reference to an initial meeting today as the first step in a diagnostic process, and the question posed - 'what will you do if we fail to give you the diagnosis you want?' - as a possible conclusion of that diagnostic process... My concern, which I stand by, is that if people enter a diagnostic process with a self diagnosis and an absolute conviction that that is the only diagnosis they will accept and a determination to find a consultant who will agree with them if the prescribed process fails then it's pointless having a prescribed process in the first place.

 

Catlady's subsequent post, where she states that if she doesn't get a diagnosis of AS she would have to rethink, adds a completely different dimension that implies an acknowledgment of the relevance of a full diagnostic process rather than the seeking of a rubber stamp to confirm a home-made one.

 

Hope that makes sense

 

L&P

 

BD

[bid]

Hi Catlady,

 

I don't post here anymore as a rule but just wanted to say that exactly the same thing happened to me!

 

Initially I was seen by my local mental health team: as you say, I talked to a SW for about an hour before she consulted with the psychiatrist, who then saw me for about 15 to 20 minutes. He proceeded to tell me I couldn't have AS because people with AS live solitary lives and don't care what other people think.

 

When I got the report it did say I 'presented with traits of ASD'. I was lucky that I have a great GP, and she referred me to Simon Baron-Cohen's specialist adult diagnostic centre at Cambridge. I went through a much more thorough assessment there, including my mother providing information about my childhood and attending the assessment too (which took an afternoon). I was given a dx of AS when I was 41.

 

I would say it is perfectly reasonable and sensible to seek a second opinion from someone specialised in adult diagnosis.

 

Good luck

 

Bid

Edited August 3, 2010 by bid

[AFunnyThingHappened]

Can I suggest you start by contacting the National Autistic Sociaety? That is where I started. They gave me the contact details fo the Nottingham Asperger Service (where I live) and they told after a nice chat on the phone, to contact my GP for a referal to them. He was resisitant, but did refer me when I insisted - I didn't know I had that power, but stand your ground politely and they MUST refer you.

 

From there it was a 4 month rtoad to where I am today, having had my formal diagnosis this week by way of my written report. I will be continuing with them because I and they believe there is more to discover and they can help me in some directions, like my hypersensitive taste issues.

 

So, start with the NAS. Tell them it is about AS and they will help.

[Tally]

I had a very similar experience as well. A psychologist whose qualifications in ASD consisted of having previously worked with a grand total of TWO patients with Asperger's said I could not possible have AS because I managed to make eye contact ONCE during my half hour appointment with her. She actually led me to believe that she thought I did have Asperger's, it was only when I accidentally saw some notes at my GP that I found out what she had actually recorded.

 

I eventually reached a complete dead end with the NHS and was assessed privately. Apart from a brief wibble recently, I have complete confidence in the diagnosis she reached and know that her reputation is too good for her to risk it by "awarding" Asperger's diagnoses left right and centre without good, sound evidence.

 

I hope you get some answers soon. It's horrible when you think you know but aren't quite sure.

[catlady]

Can I suggest you start by contacting the National Autistic Sociaety? That is where I started. They gave me the contact details fo the Nottingham Asperger Service (where I live) and they told after a nice chat on the phone, to contact my GP for a referal to them. He was resisitant, but did refer me when I insisted - I didn't know I had that power, but stand your ground politely and they MUST refer you.

 

From there it was a 4 month rtoad to where I am today, having had my formal diagnosis this week by way of my written report. I will be continuing with them because I and they believe there is more to discover and they can help me in some directions, like my hypersensitive taste issues.

 

So, start with the NAS. Tell them it is about AS and they will help.

 

I rang the NAS today. They were very nice and very helpful and have given me the name of someone who is qualified to make a diagnosis. I shall go back to my GP and asked to be referred to her. My GP is usually excellent and so I hope he will be helpful in this. If not, they gave me the name of a private practitioner to whom I can self-refer. Unfortunately it will cost about £1000 if I have to go down that route.

 

Thank you to everyone for your helpful and supportive replies. I have had a couple of not so good days since my assessment but you all helped a lot!!

 

Catlady

[JsMum]

It doesnt sound like you had a proper assessment for AS done anyway, just a social worker and a nurse asking questions, that isnt an assessment of AS/ASD, I would defo request that you are given an Actual Assessment in Adult AS.

 

My son was given Features of Autistic Spectrum Disorder in our local NHS communication panel team, a team that has now dismantled, I wonder why and they now have to be sent to a private hospiatl that specialises in ASD since starting a Specialist school it has been confirmed my son does indeed have an ASD.

 

So it can happen where your told they dont have an ASD when they/you do.

 

Good luck with the assessment and though 1 grand sounds a lot, it will give you peace of mind what ever the result at least you know youve had a proper detailed ASD assessment.

 

JsMumx

 

Edited August 6, 2010 by JsMum

[cmuir]

Hi

 

I can understand your frustration. It was a emotional rollercoaster during my quest for answers as to why my son behaved the way he did, etc. Our GP and HV were extremely dismissive attributing things down to the terrible twos and advised me to stop working full-time and go part-time. I'm sure you can imagine how I felt!!! At first I felt like a failure, but picked myself up quickly as I knew it wasn't in my head or my fault, etc. I researched lots of things and felt as sure as I could be that R had AS - everything seemed to fit. I then sent both HV and GP letters stating I felt l'd been dismissed as a neurotic first-time mum that couldn't cope, listed the reasons wny I felt certain something wasn't right with kiddo (headbanging, lack of eye contact, etc etc) and insisted they take me seriously. A meeting was arranged and a referral was made. Although the referral got the ball rolling, we were passed from pillar for post for 1.5 years. Again, I reached breaking point, by which time, Rs idiosyncrasies/behaviour screamed AS to me. I know that some forum members hae strong views on parents apparently diagnosing their children - not something I did, but like I say, the more I read, the more sure I became that I was barking up the right tree. I'm a big believer in gut feeling and I so desperately wanted a label in the hope that my son would gain support and understanding (and for my own sanity, I could be sure it wasn't my fault!). I persevered and although not easy, advised the medical professionals that were were seeing that my son had been seen by a lot of people, but apparently no one was giving any definitive answers or willing to take responsibility. One paed was emphatic in saying that R didn't have an ASD (how wrong she was!). After 19 reports, I got the name of an ASD specialist (as opposed to a paed). It was only a matter of weeks later, that R was formally diagnosed. I reached the point, where getting answers became all consuming, so I completely understand where you're coming from. Gaining that diagnosis (which no one has any doubt about now!) was a massive relief and enabled me to move on. It was positive for me (and my son).

 

I can't say whether you're right or wrong about whether you have AS or not, but although I believe in gut feeling, ultimately the diagnostic process can be a very long road. It often involves a number of professionals, purely because it requires various areas of expertise ie psychology, SALT, OT, etc. In addition, they need to be absolutely sure a diagnosis is the correct one and so I can appreciate why it's often a lengthy process. However, one shouldn't be dismissed. Again, perhaps controversial, but I think if you've done a lot of research and feel you may have AS, I think you'd be justified in insisting on a referral to an ASD specialist (not a SW or nurse - they're not qualified!). Life was very difficult for me (I genuinely believe I was on the verge of a breakdown) as I'd been dismissed, made to feel a failure, and wasn't taken seriously. I was even told I was wrong in thinking that R may have had AS. I know that there are situations where people (parents and professionals alike) can be wrong, but as I said, I was living with R 24/7 and witnessed a lot (I kept diaries which helped massively - I photocopied and highlighted relevant bits and sent them in advance of appointments to specialist). It's so important to see the 'right' person (one whose specific expertise is in ASDs).

 

Best wishes.

 

Caroline.

Edited August 6, 2010 by cmuir

[catlady]

 

 

Thank you for you post. I don't actually have £1000 to spend on this! I do have the name of someone to whom I can be referred on the NHS so I am hoping my GP will be sympathetic and make that referral. I don't know what the outcome will be, but I think the whole thing was handled so badly that I do need to take it further.

 

I am glad you persevered and got the help you and your son need!

 

Catlady

[catlady]

Well I received my copy of the report. The only surprises were the factual inaccuracies contained within it. Some of these showed that they hadn't listened to what I said, others were conclusions they had made without actually asking me the questions to elicit the information they needed.

 

I rang to ask what I should do about it as I was unhappy with the report and I was told to highlight the bits I disagreed with and send it back to the people who had done the assessment. It took me sometime to find out the name of a different person who would deal with it as I felt I wished to complain about the process, as the person I spoke to just tried to fob me off.

 

I haven't done anything yet as I am waiting to be calm enough to write a coherent and rational response. I also need to see my GP to ask for another referral to someone who is more likely to have an understanding of ASDs.

 

I knew it wouldn't be easy and I hate complaining.

[Karen A]

Hi.

I just noticed your thread having been away for a while.

I think you have every right to feel unhappy and angry with the inaccuracies in the report.

Every patient within the NHS is entitled to second opinion so please do not feel bad about being assertive.

http://www.pals.nhs.uk/cmsContentView.aspx?ItemID=932

PALS may well be able to support you and offer free advice regarding how to make a complaint or ask for a second opinion.The web site includes information regarding how to find your local PALS.You could also contact your PCT but PALS could advise on that issue.

 

It is not at all unusual for adults to find it difficult to obtain an assessment for an ASD diagnosis. In my area until recently there were no professionals able to do the assessments.

Some mental health service staff have minimal knowledge of ASD as it is not a mental health condition.I have come across senior professionals within CAMHS who claimed never to have come across a client with ASD.

Karen.

[catlady]

Hi.

I just noticed your thread having been away for a while.

I think you have every right to feel unhappy and angry with the inaccuracies in the report.

Every patient within the NHS is entitled to second opinion so please do not feel bad about being assertive.

http://www.pals.nhs.uk/cmsContentView.aspx?ItemID=932

PALS may well be able to support you and offer free advice regarding how to make a complaint or ask for a second opinion.The web site includes information regarding how to find your local PALS.You could also contact your PCT but PALS could advise on that issue.

 

It is not at all unusual for adults to find it difficult to obtain an assessment for an ASD diagnosis. In my area until recently there were no professionals able to do the assessments.

Some mental health service staff have minimal knowledge of ASD as it is not a mental health condition.I have come across senior professionals within CAMHS who claimed never to have come across a client with ASD.

Karen.

Karen thank you so much for your supportive reply. I am going on holiday so I shall leave it now until my return. Then I shall follow your advice with regards to PALS. I think this is such an important issue because I am unlikely to be the only person in my area who is not getting the help they need because of lack of understanding among the mental health professionals.