I have begun my diagnosis journey..failing already!

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ATOS? They did my assessment! (Not the NHS mental health one, the work one.) This is what happened.

• June 30th, 2010 (all dates within a few days): I told my work there was a problem. In writing. Work decided to make it worse (that's another story). So I signed off with stress.
• Early July: nothing happened, so I contacted the union. They suggested I write to head office. I did, detailing exactly what happened.
• November 15th - yes, November - head office gets in touch about an ATOS assessment.
• November 27th - a 20 minute phone call with a specialist (i.e. a nice person who said what any reasonable person would have said: if she had other skills she kept them hidden). I told her what I had told my boss in writing, and what I had already covered in detail in the letter.
• January 12th - that's today - I have still heard nothing.

Make of that what you will.

EDIT: this may be due to my employer's inefficiency, not ATOS. Work was always highly disorganized - we reported to two completely different employers with opposite priorities, there was constant turnover of management (local level a new boss every few months, higher levels a new boss every year with gaps in between), people were not trained then were fired for making mistakes, pay was almost never right, etc., etc. I worked in a major store and we had leaks in the roof more than a decade old. We had a safe with many thousands in used notes and almost no security. I was the last person to leave with stress - every other person left for similar reasons. The new management probably see my leaving as an opportunity for a completely fresh start, so are in no hurry to get me back.

In the interests of openness, this is probably the best thing that could have happened to me. Being away from work makes me realise how miserable I was there, and how good it is to be away. I am able to work on projects that use my real talents and will build a real future, instead of being stuck in a soul destroying minimum wage hell. So the longer this limbo continues the better it is. I wish I could just show people my work and say "look, can't you see that working on my programming and research is more productive and better for society than taking a job away from someone who can enjoy it and do it better than me?" But sadly the system does not work that way. The system would rather crush you until you have a mental breakdown, and then leave you on the ever increasing pile of broken people. That is the system, so we have to work within it until we can change it.

tl;dr: my experience with the NHS and ATOS has reinforced my view that the entire system is just a mess from top to bottom.

PS Off topic, everything brings me back to my obsession. The whole world is so messed up, so irrational, so incredibly inefficient and self defeating. So it should not be hard for one person to find just one of the more obvious insanities, then find a simple way to double global efficiency and happiness, then package it in a way that bribes the people in charge to do better based on their short term interests (all people care about). I see the world's chaos and short sighted madness as a huge opportunity. And I see ASD as my unique strength: the ability to break away from the brainless herd mentality and actually focus relentlessly on one issue until I get it right. While I have many, many weaknesses, I do have one or two strengths and that is all I need. Because in the land of the blind the one eyed man is king.

I went back to see the same GP who I saw a while back who referred me in the first place to the mental health team. I told him that the national autistic society had given me the details of 2 diagnostic places (who both take NHS referrals) and I just needed him to refer me to one of them. I also told him all about my appointment with the nurse on Monday, he was both apologetic and disgusted by how I'd been treated, we talked about it for a while and he phoned her up! He was careful enough not to mention I was there, just that he was chasing up what had happened and her opinion etc etc. He more or less told her off for jumping to the conclusion of OCD and Anxiety when A) she is not qualified to do so as she is only a gateway worker B) she only saw me briefly and C) she hadn't taken the time to really read my notes or the several quizzes,articles, checklists etc etc I had with me. She was talking for a while and then he said "Oh so there is no way of getting a diagnosis in this area...oh unless she does it privately?...hmmm...okay", he ended the call soon after and his exact words "Dont' pay any attention to her she clearly doesn't know what she is doing".

He hasn't referred me to either of the Autistic places as he is bound by the procedure, he was again very honest he said it's a pain in the butt and a slow process but I have to go via these means, come to a point where they can't treat me and / or diagnose me via the usual mental health means and then he would be allowed to refer me. He told me to stick with it, always take my notes, quiz printouts, checklists etc etc to every appointment and if they don't bother to read them you know they are not worth listening to and to wait for the next person I'm referred to. He apologised alot saying it was a backward system but because the NHS is free they have to be careful to only send the right people to specialists as any person could walk into a doctor's claim to have a disorder and if they didn't have these steps in place then the specialists valuable time would be taken up by people who really didn't need to see them meaning the people who truly needed the help would miss out.

I'm still a bit annoyed that I've basically got to see a few different people and let them possibly misdiagnose me before I'll get to see someone who knows what they are talking about / looking for but not much else I can do for now. I'm thinking of calling NAS again just to see what they say because the impression I was given over the phone was that the GP can and should just refer me to one of the autistic places without going through the mental health team.

Little update...

So I hadn't heard anything from the mental health team and the evil nurse had said if I don't hear anything to give her a call...yeah right like I'd want to speak to her again. So my husband phoned up and spoke to someone who said I wasn't even on their system then he was put through to a senior admin manager or something like that, she wouldn't reveal any details to him because of confidentiality so I spoke to her (so glad it wasn't the ignorant nurse). Apparently a letter was sent out yesterday which I would have to reply to within 3 weeks... to get cognitive behavioural therapy?!...erm what?! So I explained everything to the admin woman and her exact words "but you can't get a diagnosis with us, you'd have to see an autism specialist for that". She's going to do some investigating on what's happened, why I'm down for CBT and how to get me to the right people and she will call me back in a few days.

So then I call the national autistic society again and they advised me to go back to my GP and tell him he MUST refer me to one of the 2 diagnostic places they have given me details for, they take GP referrals so he has no reason not to and in no uncertain terms the lovely woman told me not to take no for an answer. Hopefully he won't screw me about and will just do it, she's also sending me details of how to put in an official complaint about the nurse.

I'm starting to be more and more thankful for my open minded doctor who doesn't attribute everything to anxiety. I have not mentioned AS to him yet (I have learned from previous experiences to not suggest that right away to a new doctor or therapist) but I have described my symptoms and he agrees they warrant further testing.

sorry to read you've been having a tough journey. it took me 3 years to get an official diagnosis after i had an informal diagnosis from a psychiatrist. i was misdiagnosed with things too, so i understand the frustration. i finally had to pay $1000 out of my pocket to see an actual specialist in adult diagnosis, because it is difficult to find a professional who has prper specialisation.

what i would advise is to approach the diagnostic process with an open mind. not very many professionals want to try to diagnose someone who already has their mind 100% made up, partly because a person who is overly certain will skew the testing process with their bias. your extensive studying on AS could be seen as a negative and not a positive, so be cautious on offering that information to the specialists.

i suggest being openminded because it is always possible that you are not an aspie. and i don't just mean you specifically, i mean every potential aspie on WP. even those of us with an official diagnosis could be misdiagnosed. a diagnosis isn't like a absolute label; it's a professional's educated opinion based on the information at hand.

I forgot to update this last week, I went back to my GP, what a task that was, I didn't know his name so had to find it on the surgery's website (after a week of panicking about having to call up and ask, my husband suggested looking for a website). I wasn't sure if it was him or not because it didn't look like him but my facial recognition is terrible so I chanced it (it was him). I should have gone back sooner but I've ben back and forth to the hospital with my daughter and my husband and it just wasn't top priority at the time.

Anyway I told him what the national autisitc society said, gave him the printouts of the diagnostic places and he said to leave it with him and he'd speak to the senior doctors. He called me the next day to say he was referring me, he's not sure how long it will take as he dosn't know what the waiting lists are like but to call him up if I don't hear anything within 3 weeks so he can chase them up.

Hyperlexian - I'm not 100% sure that's why I'm going for an official diagnosis, I'm 99% sure that AS is what I have but there's always that chance I'm wrong. I'm self-diagnosed because all of the thoughts/feelings/ behaviours I have are so accurately described by Asperger's syndrome and if it's not that then what else is it? I did doubt myself alot initially because I thought well maybe it's not that but then I'll have a meltdown or I'll be flapping my arms(without realising at first and when I notice I'm doing it I try to stop) or my husband will tell me a joke I don't get at all or he will accidentally brush against me in the worng way and set me off...and then I think..ah well maybe I'm right. It also explains alot of things from my childhood and the books I've been reading (specifically aimed at women / girls with aspergers) are almost like my lifestory. Still I could be wrong, it's the stims and sensory issues that stop me thinking it's all in my head if you know what I mean? I have physical traits of AS and not just the things that could easily be other conditions such as my poor social skills/anxiety could just be some kind of social anxiety disorder or my love of routine and getting stuck on things and doing them,saying, eating, watching, listening etc etc over and over again could just be OCD.

I haven't gone from thinking I'm fine to one day saying oh I have AS (I'm not sure why anyone would think they had it without having obvious traits etc), I've always known I was different but I thought it was just me that I was weird and wrong. Then I read about AS about 4 years ago and it just fit but someone told me I couldn't have AS because they knew someone with autism and I was not like them. So I put it to the back of my mind but it's been eating away at me and I started to research it more and the more I read the more it seemed I'd found the answer...but there's always that 'what if' buzzing around what if I'm wrong so I made the decision to go for a diagnosis.

Just read this thread - I'm glad to hear that your GP has referred you, after your previous bad experiences. Sadly there are some so-called health professionals who really don't have a clue and behave unprofessionally - at least you now know that the nurse who saw you was wrong and has been told so too

I also had problems with my referral - my GP agreed to refer me, then I got told I needed to see him about my referral. I made an appointment but ended up seeing a different GP who reckoned there was no reason to refer me - he also refused to look at my AQ results and my aspie quiz print out, saying they didn't mean a thing. I got very upset about this, and spoke to my therapist who advised me to make another appt to see my GP. I had to see another doctor, as my GP is off sick, but luckily she was much more understanding. She explained that there have been changes in the system for referral, and added that some GPs are not familiar with the way it works. I guess in some ways I was lucky - my therapist supported my request, and told me who the referral needed to go to, so that I could advise the GP!

I forgot to come back here and update this thread. I was referred to the CLASS clinic, managed to get an earlier appointment due to a cancellation (their waiting lists can be a few months long) and I was diagnosed with Asperger's in mid May. So my suspicions were correct and I'm pretty sure my daughter has Asperger's too but her psychiatrist doesn't seem the slightest bit interested in that idea so I forsee another battle on my hands to get to the right specialists.

I read through this with interest.

I'm so pleased to hear you finally managed to get a diagnosis. Good luck with getting your daughter help, perhaps the NAS can give you some useful advice on this too.

It's good to hear the GP was so helpful. Can he help out your daughter too?

My experience with trying to access mental health services to get help for anxiety and depression has been it can be a real postcode lottery - I've lived in different parts of the UK.

I finally managed to access the help I really needed about 18 months ago, and this is, I kid you not, after over10 years of trying off and on. I was very bad at advocating for myself in the beginning too, and this didn't help.

I got more pushy over time, as I began to get really great support for a chronic physical condition I have, but in comparison the mental health support struture (if you have mild to moderate problems) was rubbish and this really frustrated me.

The real breakthrough came when I moved to a large city with good local mental health services AND found a really helpful GP.

I've found good GP support is vital, they can advocate for you sometimes in ways you can't. My advice now to anyone struggling to get help from mental health services in the UK, for whatever reason, is start by making sure your GP is helping, and if they're not try and see a different one. Sometimes a different one in the same practice can be enough.

I've also found once you finally get through to the right specialist it gets a lot better (for both physical and mental health conditions).