ADOS assesment (Adult)

The NHS is short of cash, and I believe it's being throttled so the general public write it off and it can be privatised. However it doesnt do it's self any favors. My Girlfriend had 2 assesments to see if she was elligible for an assesment (work that out). During that same year she had 11 assesments and no treatment (other than antidepressants which makes her go into mania). Can you imagine the cost of that. She was misdiagnosed and essentially wasted tens of thousands of pound on incorrect treatment over a 14 year spell. CPN's and Nurses were essentially scaling her problems as not being that bad and "definately not Bi=Polar", so no urgency was ever took with her. I don't believe anyone ever gets treated in an urgent fashion. After me requesting a second opinion and threatening to sue for anyharm she done to herself (I shouted they were neglecting there duty of care), she saw a proffessor in affective disorders. He diagnosed her within a morning and low and beheld we were right all along. It became very apparent when she got the right meds.

I can't complain to much about the Autism Pyschiatrist I've just seen, but the rigmoral (spelling sorry) and absurd concept that one Pyschiatrist says have have something (and off the scale), sends me to another Pyschiatrist who will then turn round and say "without x, y and z" I can't diagnose or help you. 

Thanks for the advice, I will check out the Valerie Gaus book when I calm down. But the Pyschiatrist seems to think I 100% dont have asd and has adhd. It's get's hard when you already have a lot of self doubt and are extremely private. I know the practical implications of what needs to done with the adhd people but I just feel confused and even further adrift.

The NHS are very short of cash so they have to prioritise everything so that the worst affected people get seen more urgently. Also, I don't see many people really praising the service they get from the mental health side of the system. In the past, they have relied too much on drugs. Now that CBT is all the rage they simply don't have enough (skilled) people or time to make this work in the way that we would like it to.

One of the things that happens is that people treat the mental health service as a service that can fix you up in the same way that casualty will fix a broken leg. i.e. you go along and they do something and you come out better. Mental health is much more about them helping you to see things in a different light. It is much more of a collaborative effort between the patient and the service.

It sounds as though you may not get a diagnosis in the short term. Perhaps you would benefit from treating yourself as though you had a mild form of the condition? If you are worried about this then you could talk to your GP about it. There is nothing that I have read in the Valerie Gaus book that would give me any cause for concern. there are no wacky crazy things that it would have you do. There are just some sensible suggestions for practical things that you can do to practice and develop your skills. It is much more targeted at people with these difficulties than a normal self help book and it doesn't promise to transform your life!

I rang the Autism team for some clarity. The Autism team do not I have Autism, but they do think I have ADHD. Therefor I am being reffered for an assesment for ADHD. However the Autism people have said it's unlikely that I'll be adble to obtain a diagnosis of ADHD because I won't give them access to my parents. 

I didn't know I had rights to access my GP records. I will investigate that, I need to go in to my GP's later today. 

I'm considering ringing the CPN like you said. I have no desire to engage with the current CPN because I feel as tho they can't be bothered with me.

Yeah communucation is a major problem to me. I can speak well, but I have what I call "ums and ah" moments. I don't like eyecontact. My girlfriend helps me at the assesments to help drive my point accross. Im very poor with revailing feeling's too.

I feel that some the barriers I endure with the NHS are because I'm not severly obviously disabled/different. I have many problems, but they are small problems (compaired to other people) that have a big cumilative effect on my wellbeing.

hi GW,

Your story is sadly familiar. I've seen a number of people on the forum go through really difficult diagnosis processes. The system doesn't cope well with our inability to make a forceful and coherent case. They aren't deliberately making it hard but they tend to respond better to the NT people who can shout more loudly and clearly than us.

it sounds possible, from your last post, that the Autism team think you may have autism but that the most appropriate treatment to do at the moment is to treat your ADHD. i.e. You have ADHD in addition to the ASD. Have they said that you definitely haven't got ASD  or have they not really come out with a firm diagnosis either way?

Did you know that you have the right to see your medical records? Perhaps it would help if you could go through these, with the help of someone at your GP surgery so that you can get a clearer understanding of what has or hasn't been diagnosed. If you go to the surgery and make it clear you want help, rather than wanting to make trouble, then they should be able to help without any fuss. Perhaps they can give you a printout to take away? 

You could pro-actively go and seek out your CPN and ask to review where they think you are. If you say that you are struggling to understand what is going on then they should be helpful.

it sounds as though you can see that communication is a real problem for you. Have you considered using the advocacy service? As i understand it, this service exists to help people like us, who struggle to communicate, to deal with GPs and other service providers. 

Thanks for the post. I will check out the literature you have recomended. 

I don't get any help at all from my MHS services. The CPN whom I am under has not contacted me for more than a year, so the chances of cbt are zero.

Because I'm not good at expressing feelings and emotions It's probably difficult for anyone else to understand my turnmoil. 

I've basically got a referral to an ADHD team because the Autism team feel that's whats wrong with me. I can't provide them with the Neurosdevelopmental info they will want. I'm similtaniously exploding and feeling exhausted.

People are acknowleding I have a problem, but I can't seem to get any help or support. In addition to this I've had a sensation on my mouth for the last two years and the GP and Dentist just dismiss it. I'm starting to lose all faith in the NHS. 

I have problems swallowing medication, so I'm given antidepressants as a solution. But now the pharmacist at the doctors wants to give me this as a dispearsable tablets instead. It just seems that no one wants to help and I'm feeling more adrift than ever.

I know that I'm feeling unwell but I don't know if its anxiety or depression or something else. I'm knackered, my chest is pounding, Im ranty and apathetic all rolled into one. 

Hi GW,

I've just gone back to your initial posts and a number of your issues (eye contact, social difficulties etc) certainly look like autistic tendencies. On top of that I suspect that the stresses around not understanding yourself and not understanding how to adapt to social contact, when combined with an absence of understanding, are leading to further issues. Your obsessive record collecting is typical ASD behaviour but wouldn't necessarily, in and of itself, indicate ASD.

When I first suspected that I had the condition I read around and found some stuff that tended to confirm my suspicions. I'm aware of the problems of self diagnosis and "confirmation bias" so I was wary of the diagnosis. It wasn't until I got a proper diagnosis that I took it really seriously. At this point I was probably more aware of what was relevant to the diagnosis so I emphasised certain points, and played down certain aspects, when talking to GP and when I talked to the psychiatrist. I completed a questionnaire but the psychiatrist primarily went on what he drew from a consulation where he interviewed me and "tricked me" into showing my true colours. The trick was where he watched how I reacted to him being very rude to my wife - I didn't react as a normal person would as I didn't spot the non-verbal stuff that was going on! At this point I was not feeling stressed or depressed and he was able to look at a fairly clear and unobfuscated picture.

It seems to me that your autistic desire to have a "black and white" diagnosis may actually be obstructing a more relaxed and measured view of your situation. If you allow yourself to think of yourself as somewhere on the spectrum and then to deal with yourself as certainly introverted but probably more than a bit autistic then you may get to a better place.

Have you seen Susan Cain's TED talk or her book "Quiet". This may give you food for thought. I also read Valerie Gaus's book "Living Well on the spectrum". This helped me understand myself massively.

HTH

Just to confuse matters even more ... http://www.autismspeaks.org/blog/2014/05/22/there-connection-between-autism-and-bipolar-disorder

Psychiatric "conditions" are sometimes just labels that people put on behaviours that need treatment. Sometimes the condition really benefits from drugs as there is a real chemical imbalance in the brain, sometimes it just needs cbt etc as the brain needs to understand itself better or it needs re-training in a better way of thinking. There are no proper 100% reliable chemical or physical tests for many conditions so all you will get is a doctors "opinion" which suggests the next course of action. Mis-diagnosis is rife in people with ASD due to the communication difficulties that we have and because the condition leads to comorbid conditions like stress and depression which cause us to present to the doctors in various states of distress which may further obscure the underlying issue of ASD. I have seen lots of stories on this site where people have been diagnosed with bipolar and other conditions before they have got to their own root cause which might be ASD. (Search for bipolar in the community posts to see some examples of this). 

One the reasons I feel it's important to have a diagnosis (no matter what that might be), is that I will then be able to work on my problems specifically. My GF has Bi-Polar and when she was trying to treat the symtoms pre diagnosis it often made her worse. Things like taking antidepressants would not solve the problem the low mood, and make her go into mania. 

I've deliberately tried to read as little in terms of help books because I wanted to say what my symptoms and problems are, but I didn't want to mask or influence anything. I've always been open to a diagnosis of something other than ASD. If I have something like ADHD, then I might need medication and I can't access that without a diagnosis.

I'm annoyed that I may not be able to access help that I could do with because I can't get enough childhood evidence. I understand why, but it still feels a bit cruel. 

Why is it so important to have a formal diagnosis? It won't change who you are. You will still be at a particular point on the spectrum between "not at all autistic" and "fully, completely, absolutely autistic". Have you thought of dealing with yourself as "autistic enough to benefit from using strategies and techniques that autistic people use"?

have you read any books that would help you understand yourself, and have a better life, as an autistic person? E.g "living well on the spectrum" by valerie gaus. 

Had my appointment. Physchiatrist is going with a ADHD diagnosis with Schiziod and Schizotypal triats. I'm being referred to a ADHD physciatrist now. This has thrown me a bit because I didn't even consider ADHD. But after reading a little on the subject it's likely she is right.

I couldn't get a Neurodevelopmental interview done because I'm doing this on the quite away from my parent. I've now just seen that for a ADHD diagnosis I need one too.

I feel terrible. I wan't to find out what is wrong with me so I can get a grip on my life. I've put two years of effort into this and the end doesnt look anywere near in sight.

(also posted on another thread: Sorry)

I asked for a meeting with the diagnosis team as I was unhappy at the second draft report and ended up seing the consultant and one of the team. Basically I'm unhappy I will only get a diagnosis if they do a developmental interview with my parent. So I told the consultant.

I asked the consultant to go over my childhood medical records instead, which they seemed happy to do. I'm also getting an EQ test, ADHD Test and a Schiziod personality test. It all seems a bit daunting. Apparently I will also get another appontment by August. 

It seems very strange I was going to be discharged (it was in the draft report) until I had a moan about it.

Has anyone else had similar experiences?

Hi Goatworshipper,

have been off the forum for a while. They are dragging their heels? Any response from the email?

:)

You don't have to be forceful to get answers though.  If they have done an assessment you are legally entitled to know the outcome.  If the outcome was not that you are on the spectrum, you are also entitled to request a referral for 2nd opinion from your GP.

Cheers for the advice. I've just sent them an email. 

In all honesty, I think that because I'm not a very forceful person i'll just get/have been forgotten about. 

Maybe report went astray, chase them up?

8 months on from my last post........................

No further forward one way or another. 

Instills lots of faith and trust in the people diagnosing me. No one has contacted me from either the diagnostic team or my "care" worker.

Literally nothing has happened. 

Jon said:

Hi Goat,

Wow it is turning into a long process. Visiting to see you with your record collection is not the sort of thing I have heard of. I guess they just need more 'evidence'.

[quote][/quote]

I got asked for examples of how i'd upset people unintentional and I could only say one off hand, but came home and thought of loads of things

In the end I wrote down everything I wanted to say to the Dr. I get so frutrated that I am not getting through. I am 40 and can come across as very 'NT' in some situations and i think that I am 'acting' very well. Therfore I wrote a very long document of things that I thought, felt, experienced through my life. Being put on the spot is really hard and afterwards I just think 'what happened'.

Just answered the question via email and said I felt put on the spot. I also wonder "what happened" when I get put on the spot.

Hi Goat,

Wow it is turning into a long process. Visiting to see you with your record collection is not the sort of thing I have heard of. I guess they just need more 'evidence'.

Goatworshiper said:

I got asked for examples of how i'd upset people unintentional and I could only say one off hand, but came home and thought of loads of things

In the end I wrote down everything I wanted to say to the Dr. I get so frutrated that I am not getting through. I am 40 and can come across as very 'NT' in some situations and i think that I am 'acting' very well. Therfore I wrote a very long document of things that I thought, felt, experienced through my life. Being put on the spot is really hard and afterwards I just think 'what happened'.

Back on topic...Well kind off.

My Partner done a developmental interview. I got called in for another interview after that. Next they want to come to see me with my record collection. Has anyone had anything like this happen to them?

I got asked about how anxiety felt, and I struggled to explain what people told me I behaved like compaired to how I feel. Explaining that if I have anxiety I have had it all my life and is somewhat normalised. I did mention that diazepam made me feel relaxed like never before.

I got asked for examples of how i'd upset people unintentional and I could only say one off hand, but came home and thought of loads of things

Apparently all the people I've seen then have a meeting to colate data/write a report.

I also got referred back to a CPN person over concerns about my depression from my partner. Turning into a long process. 

Jon said:

[quote][/quote]

From my perents perscpective I could have an arm hanging off and they wouldn't see it. 

........that doesn't sound good ........ why do you think that is? I am not sure if it is really any different than NT's but I have read about AS people who have both very good supportive relationships with parents and ones who have very bad relationships. Do you think either of your parents might be on the spectrum?

I have a weird relationship with my parents. I get on with them well, but they are old school in mindset. They see me as a figure that can do know wrong. If I followed my parents advice I'd be doing a dead end job and just getting on with things. My parents philosophy is just about working hard etc etc and I want more out of life than that so we clash but never fall out.  They couldnt understand why I didnt want to work on chemical plants and wanted to got to Uni instead. I couldnt talk to my parents about being dyslexic, suspecting autism or anxiety etc. I get on better with them as I grow older, I take them to the football now and then. I don't think it's even a parent issue I have to some degree, I find that all of my mums side of the family are similar.

I think my Mum is on the spectrum because:

1. Theres a few cases of Autism/suspected Autism on her side of the family.

2. Extremely rigid in mindset.

3. Seems to be vitriolic (but I think it's just frustration). I'm the same to a degree.

4. Repetative use of language, not fully understanding what the words mean.

5. No friends, at all. Hates being social/attending social events.