Not sure what to do

I can identify with this so well Starbuck. I’m glad you have a kind and listening Gp. I have more or less decided that I just don’t have the fight left In me especially without support to do battle to appeal for the higher rate of pip. I know I will lose out financially but I just don’t have any stamina left so feeling annoyed with myself. I am attempting the beginnings of the couch to 5k and achieved the first week so will take it week by week and see how it goes. Like Blueray I’m back to basics. And like you intolerant to many drugs so natural remedies like eating well and getting out doors has to be my way. I have lived many times /years taking one day at a time. I hope your employers are more tolerant than you are expecting. 

Hi Peter,

I have done a bit of meditation before and have found that it does help with my anxiety so you are right to suggest that I should look into this again.

I have just seen my GP and have been signed off work for two weeks for anxiety with depression.  I have just got to figure out how to break the news to my boss now as he won't be best pleased and the company isn't great at dealing with people with mental health illnesses.  

I got asked the age of questions today by the GP of how can I help you?  What can I do for you that will help you?  She wanted to help and at least listened so that in itself is something, but I don't have the answers that they need.  I am asking them for help as I don't know what to do and have exhausted all options that I can think of or have the power to implement.  She reassured me that she would look into the matter to see what resources were available, but like you said in your post, there is little real help and medication isn't an option for me due to me being hypersensitive to it.

At the moment, I need that light at the end of the tunnel to keep me going and I am struggling to find it presently.  I will try your recommendation of practicing meditation again and hope that my GP can fathom something in the meantime.

For me this is the worst stage, where you have battled on for so long and then you have no fight left in you and no solution to the situation.  I hate feeling hopeless, but as always you have to grit your teeth, buckle up and battle through it.

Hi Starbuck

It will be little consolation i expect but i can identify  with so much of your issues and Martian Tom's.

I am in a period of real struggle right now and i have been here before and it should improve but you do feel that you can't keep doing this indefinetly

I was disgnosed age 42 about 5 years ago and after the shock as i didn't even know what aspergers was(although i have always felt different and struggled with life) i expected there would be appropriate treatment to limit its effect but i am still trying to find some real practical help.As martian Tom said it seems that apart from medication there is little real help that makes a difference which makes it worse as you feel there is no light at the end of the tunnel.

I practice Trancendental mediation(TM) a number of times a day just to be able to function but you may want to look at this as it really helps with stress and anxiety and  there are other benefits too.I work too and maybe if you did a 20  minute TM during your lunch break it would help you for the rest of the day and then 1 in the evening

Regards

Peter

Not teaching.  I went to some awful schools.  I saw my maths teacher having her arm crushed in a door as she tried to get into class.

I could never cope with teaching a class .

Looks like you have some decent skills there!  I wish I was good at Maths.

I know a lot of people on the forums work as teachers and the education system is desperate for Maths teachers.  Is this something you could do, maybe even if it was an evening class or even online with people who wanted to brush up on their skills?  ND people tend to go into lots of details when explaining things so it could be just what some people need to get their heads round the subject.  

I used to struggle opening my mail when I was younger, but I found ignoring it just made my problems at the time worse.  I never felt prepared when said people trying to contact me, would call me or demand things of me as I didn't know what they were talking about.

I now have a system that post is opened every day on the day it is delivered and then it is organised into piles of:

 - Read and acknowledged (no follow-up required)

 - Requires follow-up (this will normally require looking into further information before getting back to the person/organisation)

 - Requires urgent follow-up (this is normally something that needs dealing with now and cannot wait)

The urgent pile gets addressed first, followed by the follow-up pile which I also organise by deadline date order if necessary to help me tackle things in a logical order.  I have found by doing this, the stress of dealing with post is reduced significantly and I feel more on top of things.

Thanks Nellie-Mod; I have made an appointment with my GP today.

That’s a good point but if you ever want to let off steam, you can private message me. 

Not sure if I should share my insane childhood on an internet forum.

Even my NT sister calls our childhood years total madness.  That no one will believe.

Hi Robert, I too don’t do well socialising in pubs or other people’s homes. I actually find it weird that people spend so much time in each other’s homes! Lol! I know they probably think I’m weird, and that’s ok. But I have found I’m ok in groups where there is a common interest, such as my art group and if I’m careful not to talk too much and be a better listener, it goes ok and I’m actually learning a thing or two about socialising, although I don’t intend to do it outside a shared interest. 

I spent many years coming to terms with my upbringing. Lots of disfuntion and probably undiagnosed issues that I’m only just starting to see. But I have come to terms with all that now, although it was important for me to work through it all. 

I’ve only just started opening mail again although I am working towards a mail free life because mail, along with phone calls, are not something I deal with naturally. A spiritual speaker, Stuart Wilde, who’s dead now, has what he calls a very spiritual approach to dealing with mail. He says make a cardboard shoot (don’t think that’s the right spelling), from the letter box to a shoe box, and when the shoe box is full, empty it in the bin and start again. That’s my idea of dealing with mail! Lol! 

Are you getting any help with dealing with family issues? Is there anything that you love to do? I think I mostly like to be by myself, but I like to be in nature, so I’m building my strength back up so I can more easily spend more time outdoors. I like riding my bike and now my granddaughter has a bike, I said I would take her on bike rides. I’m no longer ignoring or minimising my challenges and I can see they’re not going to go away, so I’m creating a lifestyle that will meet all of my needs and slowly but surely, I’m getting there. Don’t worry about how long your comments will be, if it helps you to share your struggles, go ahead. 

Anyway, I’m not happy you’re in the situation you’re in but it helps me to know I’m not alone and if I can be of help in anyway, I’m happy to help. 

Apart from autism I have many other problems and phobias.  At the moment my letter opening phobia has returned.  I have not opened letters for over a month.

Academically my strength is maths ( first class honours in Maths from the Open University). my weakness is English ( never passed English O level, tried five times at school).  My computing skills are so so.

I grew up in an insane family background.  Both my parents had severe issues which were never diagnosed.  These included possible autism, paranoia, delusions, schizophrenia etc.

As a family unit we managed to function with everyone having a role and most things got done.  But to outsider's we appeared insane.

I've had many short term jobs.  Just counted 10 jobs.  The most recent being full time carer for my parents as their health became worse and worse.

My communication skills are erratic.  I can write on the internet.  But cannot socialise in pubs and clubs or people's homes etc.  I can probably do jobs but cannot pass the interviews and silly group tests.

My family life is still affecting me and giving me nightmares.  It was full of contradictions and different from most families.

I've decided not to bore you with the details for now.  Because this post will get too long.

Yeah, likewise. I’m also on universal credit now. I was on employment support allowance but they took me off that, and put me onto Universal Credit. I can contact the work coach through the universal credit portal, and so far, whenever I have contacted her through this method, she has got back to me on the same day. I actually have a sick note, so all job searchers are switched off, yet I’m still supposed to be looking for jobs? It doesn’t make sense. 

I know what you mean about feeling reluctant to ask for help. I’m in the same situation, I’m usually the one offering the support, not visa versa, and it’s incredibly difficult for me to even admit I need help. It’s like, when ever I come into contact with an NT, no matter who they are, I assume this position of ‘I’m ok’. However, my refusal to apply for just any old job, has  forced me to be brutally honest with my work coach. I felt like it was a risk, at the time, but it paid off and she can now see why I’m currently out of work. It’s not because I don’t have skills but rather, I just don’t fit in to the nt world and coming into contact with people, unless it’s on my terms, is exhausting for me, and currently, any contact is beyond my capacity. 

I also have big gaps in my employment record now, so even going back to social work would be difficult and for me, it would be like a step backwards. 

Now I have a better understanding of autism, and how it effects me, I can plan a life that suits me. So I know where I want to be, I just need help getting there. 

Have you thought about alternative forms of creating an income? For example, I did a course on selling on eBay and realised that it’s possible to make a good level of income, without ever touching a product. It takes roughly 3 to 4 years to build up such a business. By that time, it is almost all automatic, with no face to face customer contact. The contact is all done on line and products are sold via the drop shipping method. 

Have you got a special interest? If you tell me what that is, I can tell you how that can be part of creating an online income. I’ve studied several courses and spent thousands of pounds in the process, but it was all worth it, as I now know what I want to do. However, the most important thing for me right now, is to establish a good routine of going to bed at the same time, getting up at the same time, following a daily exercise regime, healthy eating, fresh air, walking in nature and also a hobby that I can do which will balance out my working hours, when I get started. I have realised, this is important, to offset my obsessive nature, otherwise life can be all work and no play, and I have learned the hard way, that that is not sustainable for me. 

I’m in debt with all my utility bills and rent, I’m on a suspended eviction order, so sorting all that out, has been like a full time job, but people have been incredibly helpful and supportive. I have been forced, through utter exhaustion, to be honest, and admit I need help. I don’t like needing the help, but I do, and what I need more than anything, is as much financial support as I can get, so I can pay my rent, debts and food, so I can concentrate on getting a routine together and working on my website, in preparation for working with clients. A friend has said she’ll come and help me clean my house, so I’m working up to that. She’s autistic so she understands me, but I still have to work up to her coming round. 

It’s like I know I’m capable of getting back on my feet, people just have to be patient with me, and I have to reduce my contact with people down to only what’s necessary. For example, it’s ok to go to the gym and art class etc, when I feel able to. I have to build my strength back up through healthy eating and fresh air, meditation etc, and this, I’m realising, can’t be rushed. 

Is there any particular type of work that you would love to do? 

Nice talking to you since you're having similar experiences.

About the job centre work coach.  What benefits are you on?   I am on Universal Credit. I can contact my work coach through email or the online universal job match portal.  But unfortunately the formal method to rearrange an appointment is by phone to a national number . Otherwise I risk being sanctioned.

I've just realised the similarities between the two words , sanctioned where you lose your benefits and end up penniless.  And sectioned where you lose your liberty and end up locked up.

There is plenty of help and advice available but I'm reluctant to look for it and hate talking to strangers about my problems face to face.  I am more used to helping other people with their problems.  Unfortunately people take advantage of me.

There are plenty of jobs I'm applying for, but I lack relevant experience for most,. I'm overqualified for others, I have several long unexplained gaps in my employment history. I can explain them.  But the truthful explanation can make the situation even worse.  Even my specialist mental health employment advisor gave up.

Yeah, all the appointments are exhausting and mine are starting to clash. In fact, I have 3 set up at the same time/same day this week, and the one I would love to go to would be my autism group/so that’s not really an appointment but it’s one that I get an incredible amount of value from and one I said I wouldn’t miss! The other two are with my psychiatrist and a meeting at the job centre. Guess which one I will attend if it is still going ahead ~ the job centre!!! The one I would least like to attend! Fortunately, the work coach communicates with me through the universal credit online portal thing or she will let me know beforehand if she’s going to contact me by phone and I can send her messages online. The thing is, it’s like my life is in their hands at the minute, so not only did I tell the work coach, what life is really like for me, and that her help is not actually helping, I also contacted a benefits/advocacy support service who are going to help me get the right benefits for me but also look at what other Support I can get, that will actually help me. Even the thought of having to rearrange one of these appointments makes me not want to get out of bed, so they’re not helping. She changed my weekly appointment at the job centre from a Thursday to a Friday so o told her how that effected me. 

I’m finding that, unless their support is helping me, I don’t want it because the cost is more than I am willing to pay. I need their financial support right now, and I’m open to any other support they can offer me, but getting me to look for jobs that are not suitable to me or that don’t meet my needs, is not helpful to me and I realised that I had to be honest with them about that. I made sure I had the back up from the disability advocacy group first, then I started revealing to them that their help isn’t working. I’m not stupid, lazy or work shy but I’m not neurotypical, otherwise I wouldn’t have a diagnosis and I’m starting to stand up for myself, probably for the first time in my life. I don’t want to waste any more time trying to fit in with a world that isn’t prepared for me. And even though that might pose a problem to them, I refuse to see myself as a problem. I have challenges, and ignoring them or pretending they don’t exist, doesn’t serve me in the least and they won’t know about them unless I tell them. My work coach says she has experience of working with autistic people, but as the saying goes, if you’ve met one autistic person, you’ve met one autistic person. So far she’s been very supportive, so we’ll see what happens. 

It’s fun being me when I can be me but when I come into contact with the outside world, it’s not fun, so I have to work out a way I can connect with and to live in this world, while still being me.  I think I’ve got that right under the human rights act as well as other acts. There’s a gap in the market for people with high functioning autism, so maybe it’s time to reinvent the wheel. There is support out there, and although it might not be readily available, I will find it, and it might be that the only suppprt the job centre can give me right now, is financial support, so I’ll take that, and make it work for me. 

For some people, paid work, might be beyond their capacity and if that is the case, that should be respected, honoured and supported and the person should be supported to live their life in a way that suits them. Right now, going out to do a job is too much for me, although I’ve found an opportunity delivering parcels for amazon flex, which I’m investigating, as a way of doing some part time work that won’t overshadow my long term plans. 

When I spoke to the woman at the advocacy service, she said there are a lot of people like us out there, so she has experience of these situations and she’s confident they can help me. 

I'm reading your post with interest since I have similar problems and experiences.

I am on Universal Credit and my work coach at the job centre has a little autism experience. She used to deal with ESA claims.

She knows my health and autism background.

I also have another work advisor at a recruitment agency working with the job centre dealing with problem people like me.

With all these advisors (4 at the moment) appointments are starting to clash.

This recruitment agency placed me on a health , fitness and diet course and expects me to attend each week.  One of these sessions clashed with a hospital appointment.  They got very stroppy about me choosing the hospital appointment over them.  I had to attend the hospital one because the job centre knew about it and it formed part of my work search agreement. What I kept from the agency was that the appointment was actually to see a psychiatrist at a mental health unit!

Then  recently I had a job interview clashing with my job centre appointment. I chose to go to the interview.  Rearranging the job centre appointment was vital otherwise they would sanction me and leave me penniless.  Rearranging in reality was a pain.  Cannot do it with advisor by email or internet.  I had to again call a national number and wait over 40minutes listening to music.

Hi Starbuck,

I’m sorry you are going through such a tough time, it’s good that you’ve let us know what’s happening/how you feel. Many people have similar thoughts when coping with so much and we hope you’re okay.

If you are ever unable to cope with the distress or despair, it’s very important to tell someone about your feelings or thoughts of suicide. Call your GP and make an urgent appointment. Your GP can make sure you get appropriate help and support.

If it’s outside your GP hours call  111  to reach the NHS 111 service:   http://www.nhs.uk/NHSEngland/AboutNHSservices/Emergencyandurgentcareservices/Pages/NHS-111.aspx

The Samaritans also provide confidential non-judgemental emotional support, 24 hours a day on 116 123, or by email on jo@samaritans.org.

MIND have information pages on coping with self harm or suicidal feelings based on the experiences of people who’ve been through it that you may find helpful.

If you are very close to doing something to hurt yourself - call 999 or go to your nearest A&E department. There should be someone there to support you and make sure you get ongoing support.

If you need help with an autism related issue, our helpline can be emailed on autismhelpline@nas.org.uk or they’re open Monday to Thursday 10am-4pm and Friday 9am-3pm on 0808 800 4104.

Best wishes,

Nellie-Mod

The prescription charge case is not over.  I had to provide proof of earnings/income for that particular month!

Future prescriptions if the problem occurs will require new proof of income.  The new advice I've been given is that in addition to ticking one of the other boxes, I should also hand write Universal Credit on the back of the prescription.

My council tax problem was a complete farce.

To get council tax benefit, I have to attend regular appointments with an employment advisor.  For my first appointment I got a letter asking me to contact them within 28 days to make an appointment or face losing my council tax benefit worth almost a thousand pounds a year.

I rang them, went through all the security questions and made the appointment.

A month later I received a  letter and a new council tax bill for the full amount, saying because I had not engaged with them, my council tax benefits have been withdrawn.

I tried to phone them.  Lines engaged.  I went to visit their offices in person.  I got sent from one person to another.  Finally person no. 5 informed me firmly that my appointment is NOT in the system.  I tried again, giving her the details of the date, time and person the appointment was with.

She lost her cool, swung her computer screen round at me to show me that days appointments and that I wasn't there.  And there on the computer screen was my name!  I pointed at it and said that's my appointment.  Her response was, no it isn't, the names do not match, that is a different person.

The problem turned out to be that the name on my letter was.  

First name+ middle name + surname.

The name on the screen was.

First name + surname.

The middle name was missing on the screen appointment.

I placed my thumb on the middle name on my letter and tried to reason with her that the names match now.

She lost her cool and told me to get out!

With uniformed security guards patrolling the building I decided not to argue further.

Went home and wrote a formal appeal against their decision and my reasons and experience about that day.  

Finally got my council tax benefit back.

I still think the whole mess was ridiculous because in addition to my name they have my address, account number, claim number, national insurance number.

Another rant over for now.

Yeah, that’s exactly how I feel ~ I would like the world to literally stop so I can get my head together, have a proper rest from it all and be able to start formulating plans that are going to work for me. 

Your comment to Robert, regarding, letting the job centre know that the help isn’t working, is spot on. I had my meeting with my work coach last Friday, this was changed from the usual Thursday, so I was dealing with that, and although she’s been really supportive, on my last visit to her, I said something she didn’t ‘get’, so I was wondering if she’s actually helping me or I’m just kind of going along with it because I was so happy that I seemed to be getting support?!?!? 

So when I went on Friday, I decided to tell her how it is. She just looked at me for a second, and said, you need help! She said she wants me to do only one thing this week, towards my ‘job search’, and that was to call my psychiatrist and find out when my next appointment is. She said if he can’t give me the support I need, then we need to start looking for it, because, she said, I need support with day to day living before we can think about looking for work. I said I could maybe do a part time driving job, and she just looked at me, and said, but that’s still dealing with people. She said I’ve remembeted everything you’ve told me and I know you’re the type of person to keep pushing forward, but you have to take this in baby steps for it to work. 

So in conclusion, I was totally honest with her about how life is for me, and she responded by saying she will do everything she can to support me to get the support I need. And this morning, although I haven’t got out of bed yet, I’ve made a plan for the day (tidy my bedroom) which is going to benefit me in many ways. It’s a bit weird accepting baby steps, but slowly but surely, I think I’m getting the support I need. I know where I want to be, I just need help getting there, and once I’m there, I won’t need their benefits etc, so in the long run, it’s better that I get all the help I can now, so I am  able to provide for myself and live a life of my choosing, which I’ll be able to sustain. 

I’m realising that we are going to have to be the ones to show them what support we need. I realised that although I was being honest and open with these people, they weren’t seeing all the processes in my mind that go on in order for me to function, like what you were talking about Starbuck, and when I did open up about it, the work coach was amazed. She had worked with autistic adults in a large residential place; however, many of the people there are non verbal and the ones that are verbal, are not able to articulate how they’re feeling etc, very easily, so although she is skilled in working with them, she had no idea of what’s actually going on in our heads etc and that just because we appear ‘high functioning’ it doesn’t mean that we don’t have challenges that we face on a daily basis, which made me realise, most people don’t know what support we need, so I’m prepared to work with them, so long as they are prepared to give me the help I need which is going to help me instead of it simply helping me to ‘fit in’ with their idea of what’s right etc. 

The exhaustion is a big deal for me right now, but I am seeing now, that it’s actually working in my favour because it means I literally can’t just go and get a job etc, which is forcing me to look at my life and re-design it in a way which is going to work for me. 

I might not be back at the gym everyday which is important to me, but I’ve started to walk a bit more, even if it’s only to the shop, and I’ve got my bike out so I’m going to start going on some bike rides as well. So although I’m frustrated at not being back at the gym everyday, if I manage to go even once in 2 weeks, I now see it’s a step in the right direction. 

Bloody hell!  If I was as disorganised as these so called professional advisors, then I would lose my job!

It needs to be made clear that people seeking help from these individuals have normally exhausted all options and as such need structured and reliable support.  It all seems a bit slap dash from what you have described.

In relation to the prescription issue, can universal credit shouldn't have put you through that, but at least you have proof now to save this issue in the future.  I was once criticised by a psychiatrist for not taking my medication. I explained that I didn't think they were helping in the slightest (which I now know they weren't) and that I could see them being value for money based on the fact I was out of work, had little funds to survive on and the cost of the prescriptions would significantly reduce the money I had to use on food.  I felt food was more important for my health!  I couldn't get free prescriptions at the time and the psychiatrist told me to just fudge the form and say I could claim it as that's what they have done previously and they never got caught!  I was also told that if I didn't take my medication, then I was seen as not cooperating with the services offered and would therefore be removed from the service as a result.  I was shocked that I was being told and encouraged to do this.  As a result I removed myself from the service on morale grounds.

I hope the initial stress from this incident has subsided and you are able to collect your thoughts for other matters.  If the advisors are proving no help at all, is it worth letting the job centre know?  They might be able to recommend a better person or company to work with.

Back to my problems/experiences.  And my advisors!

Advisor 1 is from the city council.  I have to attend meetings with him to continue getting council tax benefit.  He is very down to earth, gives practical advice and wants to know everything I am doing to get off benefits.  He's told me off a few times.  Like when I described a job interview that went wrong when they drilled me about gaps in my work history.  And I admitted I was unable to work while recovering from heart failure in that particular year.

His opinion is that I must appear to be the perfect candidate, NO weaknesses,. NO illnesses, NO baggage.  

Advisor 2.  Is an employment specialist from a mental health charity.  He's rewritten my CV, got second opinions from experts who has suggested MOOCs and eventual self employment. Since I am virtually unemployable in the conventional senses.   

He however has his own problems, missing meetings, getting times and locations wrong and many short holidays.  Not sure what's going in with him.

Advisor 3 is a private recruitment company expert contracted to the job centre.  She tries by looking for jobs for me and going through application forms and her colleague does mock interviews.  

Unfortunately she sometimes gets things wrong like double booking sessions, sending me for a driver's job (I can't drive or ride a bike.  I have slight hand to eye coordination issues).

Advisor 4.  Is at the job centre.  She has a little autism experience, having dealt with ESA claims before her present post of Universal Credit work coach.

Then I have to deal with unexpected problems like.....

Prosecution for prescription charge fraud!

I am entitled to free prescriptions because I am on Universal Credit and below an earnings threshold.  But there isn't a box to  tick for universal credit on the back of the prescription.  The advice I was given was to tick one of the other boxes of one of the benefits that Universal credit replaces.

But the prescription was checked and they found that I wasn't on the benefit I claimed.  So pay a £150 fine  plus original cost of medicine.  Or it's the county court for fraud!!!!!

I ended up making several phone calls.  At the job centre I asked my advisor for help in providing me evidence that I was on Universal Credit.  She said it wasn't her problem.  She only deals with the job search part of Universal Credit.  To get proof I had to make an actual voice call to a national number. ( E-mail and internet contact was not an option)   Wait on the line for 40minutes Go through all the security questions and finally they sent me proof, which I forwarded and the prosecution was dropped.

Another rant from me.

Making first appointment to see council tax related employment advisor was also a long drawn out tale.  Don't want to bore people with it.  But I almost had a breakdown!!!