Really Struggling with life

Hi Sox,

Thanks for your very thoughtful posts, they have really helped me in this difficult time, anger certainly plays a big part in my life, I will investigate that further. One of the problems of living on my own is I have no one discuss my feelings with. I do discuss them a little bit at work, but avoid doing that as it usually gets mixed up in the office gossip, and some people are very judgemental.

I know my posts in this thread are negative, it has helped to vent my anger. I like your expression of an extreme version of Victor Meldrew, I can relate to that; I think I am more like Basil Fawlty than Victor.

I have so much on my mind and am feeling very tired and drained out. I will post some more to this thread, when I have some more energy. 

Thanks again,

Random

There is a problem with asking people if they are suicidal in that genuinely suicidal people will not know that they are suicidal so the question is a waste of time and not a good way of evaluating someone's risk of suicide.

However, suicidal people do deserve more urgent attention than non-suicidal people so they do prioritise suicidal people. All health services have to triage the people asking for help. I was very glad of this when I presented to A&E last year - I was seen very quickly and efficiently because they judged that there was a real likelihood that I had broken my hip and, on further investigation, that is exactly what I had done. The triage process works to attend to urgent cases first and then give attention to less urgent cases. If your GP can only distinguish between 'suicidal' and 'coping' then you need to find another GP. Don't get angry, move on and find a GP that does take autism seriously.

Hi Random,

I have been slow to respond for a couple of reasons

1) I am not a trained counsellor so I am aware that there is a danger that i might say something that might make you feel worse rather then better.

2) Everyone is different so something that might work for me might not work for you

So, please pick and choose what you want to accept or argue with. I won't be offended by anything you say and I really hope that I won't offend you.

I know something of the issues that you are talking about. I was unable to control my weight when I was at junior school, I do understand the problems of obsessional repetitive behaviours. I have had depression and anxiety in the last few years before and after I got diagnosed with ASC. I have managed to stay in work for almost the whole of my adult life (currently "between" jobs though! i.e. unemployed for the last month). You are clearly intelligent because you have managed to make yourself useful to firms and you are doing a 'knowledge worker' job for them.

I have recently (last few years) been taking a more active interest in the mind and mental health. I saw what happened to my father who in hindsight had ASC but who was treated for depression and anxiety with meds for many years and I have a preference for avoiding that if possible. I'm not completely and militantly anti drugs because there are clearly some conditions and some people who respond well to that. I am learning how to understand more about my own mind and others minds as this is a major issue for people on the spectrum - my theory is that building a better understanding of mental health and its causes and cures should make me more resilient and capable of better looking after my own mental health (with help from others as appropriate)

I went through an angry phase (extreme version of Victor Meldrew) for a couple of years but came through that with the passage of time and from being given a book on anger management which told me that anger is a thing that should be jettisoned at the first opportunity. Being angry mainly makes you feel bad. It makes you feel more and more anger and it does not really help with anything. Anger does not improve your decision making skills and it really does not help with communication problems.

You clearly have lots of very real problems and there is an issue about what order to tackle things in. I would suggest that anger is an obstacle that stands between you and the help you need. What I don't know is how best to defuse that anger and bury it so that it stops being an issue.

I hope that some of this makes sense to you and I hope it sparks you into a positive response.

'Sox

Hi Sox,

My main aim with my complaint is to get the support I need for my Anxiety, Depression, and OCD Traits. There are 2 mental health teams, both have denied/refused support, one saying my needs are too complex for them (I do partially agree with that); the other team has refused without officially providing a reason (but unofficially the reason is because I have been able to support a full time job). 

In reflection, my professional life has consumed my personal life, I got my first job just before my 16th birthday, after a very difficult childhood. Full time if I needed, but worked part time, as I wanted to go to college. Since then I have been in full time employment, except for a brief period around the dot com crash. 

Another part of my complaint, is for the crisis line which I turned to for help when I had one of these deep episodes. As I mentioned I have trouble on phone calls, I answered all the questions mainly associated with my ocd and fears in supermarkets. The person on the call thought I was joking. It made my situation worse, I told the autism team, they have it all logged on their system. I refused to call the crisis line again, but that means my medical records don't show the following deep episodes where I would have called.

I am also diabetic, and there had been tremendous pressure on sorting that without sorting my mental health. From my time with the autism team, I discovered how my diabetes evolved from my autism and ocd, they all intertwine. I have more than enough problems with supermarkets anyway. She said let's get your physical health sorted first, ready for your mental health. The pressure is just adding to my depression, and causing huge amount of distress. Great way to treat someone using anxiety with someone who is already highly anxious.

I am angry about the questions about suicide, I feel it is there to absolve any responsibity for the health professional you are talking too if you do follow to end your life. My depression scores have been very high, but nothing has been done, there just simply seems to be lack of support, it is like they are waiting for me to get to the level where I am suicidal enough. That process is just prolonging my suffering unecescarily, which I think is totally unacceptable.

Sorry, just ranting about a lot of stuff on my mind.

I will mention the afw to my advocate, she has not been much help so far, as my complaint is complex, so do need to break that down and focus on the main areas.

I had contacted the Pals service, and have had some limited success on that, will follow that through.

I will follow up with my employer, I think they will be ok about it.

Thanks again,

Random

The access to work scheme starts with them sending an assessor who might try and identify what help they need and how it can be arranged.

It is easiest to call them but, given your problem with that, I expect you could get your advocate to make the call and do most of the talking for you. AtW need the cooperation of your employer but I suspect your employer will appreciate assistance in trying to get you back onto an even keel so I would not expect them to argue. I suspect that Clovis's counselling would have been proposed by the AtW assessor but I may be wrong on that. I am presuming that your advocate would be happy to do most of your phone calls for you generally if that is a problem for you?

What is your goal with the complaint against the NHS? Are you trying to get a better service from them or do you have a grievance about something that happened in the past?

If it is a grievance then I know that the NHS needs improving but I think you have to think about what you want to address as your most important goal. Will it make you happy if you pursue that or will it lead to more frustration and another possible defeat? Could you leave it for another day? If one has limited energy and resources then I think that focusing on improving your social skills might be a more valuable short term goal? We are not very good at multi-tasking so focusing and achieving something in one area at a time may be more fruitful than trying to have a go at a lot of different targets.

If your objective is to get better service then try and focus on that by trying to work out how to present your case to the best, pursuing complaints is often not the best way to try and obtain cooperation.

Thanks again Sox for responding. I am not getting any active help with my Anxiety

They have put me on medication, which I was reluctant to start, mainly because in my young adult life, I collapsed from the affect of a drug I was taking for anxiety. Fortunately at that time, I was living with a flat mate, so he called the ambulance. These days I live on my own, the only neighbour I had the odd chat with now and then has moved out.

The medication is helpful for mild episodes where I feel my anxiety is building up, and the additional medication seems to improve my concentration. When I get a deep spell, they hardly make any difference. I have been and still am fighting for some support.

I can relate to "executive function", I used to be ok with this in my 30s, but in last several years, this seems to be getting worse. I agree I need help with this. The autism team noticed this, and has referred me for a social worker to keep in touch with me to help with day to day stuff. I haven't heard back from them.

One major problem that is causing a lot of difficulty, is that I am finding it difficult to talk over the phone. I have made it clear to people that I have difficulty, but everyone expects you to call someone. This has been improving very slightly recently, but is a big problem. 

I understand catch22 situation, and that certainly applies to me over the phone.Face to face communication I am ok with, until I get side stepped with double negative, or multiple questions at once. Even then I have to take a big pause and can slowly explain and untangle the questions and answers.

I think one of my problems is that I appear to be perfectly capable and intelligent, and people, including general medical staff, can not see my autism, in the interactions I have with them. My ability to hold down a full time job, seems to fuel this problem, although I in the middle of 3 weeks where I have been signed off work at the moment.

I have ocd traits which is feeding into my depression, and anxiety.

Thanks for the thread on Access To Work, I did spot that and it seemed like a good solution. I actually emailed my employer to let them know, but I checked though the government sites, and it does not includes a counsellor to be a type of support worker that qualifies for the scheme. I notice there has been some more replies on that thread, I will catch up with those and keep with the other thread on this matter.

I have an advocate, was trying to get together a complaint to the nhs trust with her help, but that has proven difficult, as I am generally not coping with anything else. I have an appointment with the access and assesment team the end of next week. I feel it just maybe a formality as they have already rejected 2 referals from the autism team

Thanks for you help Sox

Random

Hi Random,

You mentioned, in a previous post, that you had anxiety and depression. Are you getting any active help with that at the moment?

One of the common issues that people with autism have is "executive function" which means that we need help with keeping up with the routine administration of everyday life. Am I right in thinking that you could probably benefit from some help in that part of your life?

It also strikes me from your posts that you are living out the Catch-22 of autism. Your autism means that you need help but your autism gets in the way of actually getting that help because you can't communicate your problems to the people that need to know that you have problems. Does that make sense? Have you seen the advocacy information at www.autism.org.uk/.../advocacy.aspx ?

Have you tried calling Access to Work? www.gov.uk/.../overview This is a scheme that tries to keep people in work (among other aims) and they provide a range of assistance (they provide money for people to spend on help) Clovis said recently that AtW had funded counselling and I think you might benefit from similar assistance see community.autism.org.uk/.../depression-counselling for that discussion

I don't know what help NAS could provide to you, they should know all of the services and more importantly they should be able to provide assistance in negotiating through the system to actually get the right services to the right people -  I have flagged this thread to them and they may get in touch (don't hold your breath though, I don't know how reactive they are to situations like this)

'Sox

Thanks for the reply RSocks, I asked for a copy of the scanned application form, which they have not sent to me or the ombudsman. They claim there is no hardcopy aviailable in their system so can't provide (to me defeats the whole point of having one if it can not be used to sumbit evidence where a probelm has arrises) Being in softwar developent it should be able for software development team to extract a hardcopy. Evern without hardcopy, can rhe scanned form be transmitted in another way, by email attachement.

I strongly feel the insurer is holiding back this information as it conflicts with details I was told over the phone (to which I have a copy of the phone recording) which would weaken his case, but umbudsman doi mades not really wait for it any longer. anyuwat the insurer has invented details of when  a ph was made, but I was told thar I had made instructions over phone,when I did noghing of the sort. I asked for a recording og that phone call, and none has been provided

I don't any of the support you mention, I have generally been ok writing letters/email. There was a period where I could deal with phone calls, but put on an agressive and direct tone, that did prove sucessful some times, I wish I could do the same now

Random

Hi Random,

Your post got duplicated because the website is cranky and slow and needs to be replaced. There are lots and lots of duplicate posts every day - it's NAS's problem to sort and they are well aware of it.

I have had two cases taken to different ombudsmen. One went in my favour and the other didn't. They ultimately go on evidence but would require evidence from the pension company in a case like yours - do they have proper auditable records of phone calls and decisions? Many companies have audio tapes of all such conversations - have you asked for their evidence? Pensions are a scandal in this country - the pension companies (and their salesmen) were allowed to get away with selling schemes that had no final value at all for the contributor due to annual deductions of commission eating the contributions up year after year.

I read back through some of your posts before I responded to this one - we have responded to each other over the last year but our contact has been sporadic so amongst the sheer number of people coming and going I hadn't really built up a coherent picture until now. It seems to me that you need help. Something in your life needs to change or else you will descend into worse chaos and confusion as time progresses. We find change hard but sometimes it is essential to step back and reexamine things to work out what on earth to do next.

It struck me yesterday that we talk a lot about CBT and other interventions for MH issues but we almost never talk about interventions to help us with the fundamental communication issues that adults on the spectrum have. It is routine for children, who are diagnosed, to be offered speech and language therapy (SALT) but have you or I ever been offered anything like that? My local autism team have a drop-in scheme where they will help people with practical issues (form filling, general advice on benefits and employment etc) Do you have any support like that where you could ask for some concrete help with your communication or organisational skills?

My current problems are all about practical things like money, making a living, what to do with my house etc.. I know I've got into this situation because of my autistic traits and mental health issues, but I don't know how, or whether it's even possible, to get useful help with them. The NHS ambles along at such a slow pace that everything is becoming urgent, adding to the pressure, but I haven't got the answers I need yet to try to make the right decisions, and maybe take drastic action, about what to do. I can think of all sorts of ways to deal with the problems, but when it comes to trying to work out how to find or connect with the people I'd need to deal with, the whole thing seems to fall into a big black hole. I don't know how to overcome this, or how to find anyone to ask for help with it.

Don't know why my post duplicated