Category Archives: Autism

So the Tories have a majority, what do we do now?

 

**** Please note that I am safe now and am receiving help for some of the issues I mention in this blog. Thank you all for your concern ****

 

It just started raining in London, maybe this is god’s way of saying that the Tories winning a majority at yesterday’s general election was a bad thing, I hope so at least.

As someone who has an expensive, long term health condition, mental health problems and Autism, it would be a fair assessment to say that as a result of this, I am royally screwed. Now that the Conservatives have a clear majority and they don’t have the Liberal Democrats interfering to water down their policies, they can effectively do what they like. Welcome to a Britain where there is no support for people who are unemployed or disabled and they are just left to die, where there is no National Health Service and people can’t get help for their medical problems without paying huge sums of money to private companies, where we have destroyed all the oversight and protection given to us by the EU and European Court of Human Rights in exchange for strict controls on immigration and an end to freedom of movement within the European Union, where the rich are taxed at a knockdown rate to encourage the myth of a trickle down economy and keep big exploitive businesses in the UK. Welcome to a country where rich people have overwhelming power and don’t care about anyone but themselves.

The last five years have been bad, but there is no doubt it is going to get worse. Only hours after the result was declared, Jeremy Warner – assistant editor of the Telegraph is calling for an end to the NHS on the basis that it costs too much money (http://www.telegraph.co.uk/news/nhs/11590377/Do-we-want-better-health-care-or-do-we-want-to-keep-the-NHS.html). How will I live if I cannot get insulin for free to treat my diabetes? How will I cope without the excellent diabetes team at Barts and Homerton Hospitals to keep me going?

I am sure the next point to be brought up will be benefit ‘scroungers’ and how we are spending too much money on welfare – we didn’t kill enough people last time, so it’s time to go further with those cuts. The Guardian announced on Tuesday that they had seen a list of potential cuts to the welfare budget, including: ‘Making it harder for sick people to claim state aid when they are out of work by introducing “stricter” fit-for-work tests and/or tighter limits on eligibility.’ (http://www.theguardian.com/politics/2015/may/05/revealed-coalition-plans-to-slash-welfare-for-sick-poor-young-and-disabled) well, it’s already difficult enough as it is for me to claim ESA, I have in the past been able to work and ‘chickened out’ at the Work Capacity Assessment stage, but my mental health problems have become much worse lately and I can’t face dealing with recruiters or applying for jobs, I haven’t worked properly in six months, so that’s another thing that an employer or recruiter can hold against me when I try to apply –
Employer: “Explain why you haven’t worked in the last six months?”
Me: “Well, I was ill”
Employer “So that means you’re going to be ill again then and wasting my time not working?”
Me: “Well I can’t rule it out”
Employer “Next!”

I have spent the last Five months living very close to the breadline, I have had to borrow money for rent and it is very uncertain where I will find the balance of the next rent payment from. I have tried to get help from my local council and they are paying me the full amount of housing benefit that they are able to, but the dates do not line up with when I have to pay my rent and I will be short £500 at the end of May again, after borrowing £500 this week to top up what I had. I have built up another £3,000 of credit card debit which basically paid for day to day expenses whilst all the rest of my money went on trying to pay the rent and bills. That brings my total to £7,000, only 7 years after being made bankrupt because credit card companies and banks were pushing overdrafts and credit cards on me like they were candy. I have no savings, no pension, nothing much to show for my nearly 35 years on this planet.

In the past few weeks I have talked about getting out of London and going to live somewhere else that would be less expensive… This would be a start, but what point is there if I move only to discover that I am no-longer eligible to be helped, because I am deemed not to be sick enough. Yes, I can stand up, I can walk… but it’s hard to explain to people how it is, what’s going on in your head and why you feel so upset about what is going on… it’s even worse when you tell them that and they don’t believe you – because that is what is going to happen, people think that I am delusional, but I don’t think so, I think it’s pretty clear that if you can be in a coma and still be found fit for work, then really the rest of us are screwed (http://www.mirror.co.uk/news/uk-news/ros-wynne-jones-sheila-hounded-death-5353202). This is only going to get worse as the Tories get their own way.

I cannot go on like this, I am tired, I am worn out, maybe once I could do a job – it is true that I do have a lot of skills and abilities with computers, but I need a break, I need help to find a job where my employer will understand my circumstances and help me to stay in work. I need stability and a roof over my head that isn’t going to be taken away by some rich foreign landlord when I can’t pay the rent. I need the certainty that I will have money to feed myself and my cats, and pay my bills.

I have tried to get help, every time I go to hospitals in a crisis situation they don’t listen – they say they will help but they don’t, I wait around to talk to them, but then they let me go. They don’t realise that someone who can sit there and describe their problems in a calm and matter of fact way is actually in a crisis, because this is not how people with mental health problems act. They don’t have enough training or understanding of Autism to realise this, they probably don’t really have enough time to listen to people properly.

I would like to say how grateful I am to various people in my life for their support and how sorry I am that I am letting them down and will no-longer be around.

I would like to thank:
Claire Wakefield – for talking to various local officials and trying to get them to listen to me and for trying to get someone to offer me a meaningful job.
Leneh Buckle – for her help in trying to make things better for me and find alternatives to my current situation.
Norman Corke – for always being around to listen and having a good laugh at what was going on.
Nancy Rowell – for helping me out financially – I am sorry I will not be able to pay back what I owe you.
Larry Arnold – for always keeping me entertained and informed with your take on what was going on, I hope you will be able to keep your allotment going.
Gina Muollo – despite being so far away you have always been a fried over 16 years.
Ian Molton & Lyndsey Barwell – for offering support an accommodation, even though it probably wouldn’t have worked out.
EB Algol – for many many chats over the past few years.

To my parents, sister and brother-in-law – I am sorry I have let you down, I wish you could really understand how I feel about things and how I can’t just snap out of this situation.

At home I have 2 cats: Dave and Arnie. They have food, water and a litter box. They have access to outside through a cat flap. Dave and Arnie are brothers from the same litter, I am sure that with me gone they will be sad enough, but it would be worse if they were split up. Arnie is very skittish and will run off and hide when other people are around, Dave is a bit more social but will still run. I suggest that whoever goes in to remove them and re-home them locks the cat flap so they can get in but can’t get out and then goes away and waits, once they are back indoors then it will be a lot easier to catch them. Please be gentle with my babies…
It’s nearly time to get on the bus, so I guess I’d better be going. To those of you who voted Tory, I hope you are fucking pleased with yourselves…

Attitudes

I suppose that all along I thought I was owed something or wanted something I couldn’t have, maybe that is just the way things are when your parents don’t have a great deal of money. Back in the 1980’s and early 1990’s, things were expensive. China wasn’t the huge superpower it is now and not everything was made there. This happened to be the times that I grew up in.

Most of my memories of childhood are probably about being told that I couldn’t have x or that I should save up to buy y. I suppose that was a good thing, trying to teach me the value of money or that I couldn’t have everything I wanted should have given me a good grounding. But I thought I knew better.

I was 12 when I heard on the news one day that a kid in America divorced his parents. Through Google I can now tell you that this child, Gregory Kingsley, was more or less the same age as me at the time and that basically his mother was an unemployed waitress with a history of drug abuse and promiscuity and his father had been out of the picture for some time. Kingsley befriended an attorney whom he met at the boy’s shelter he was staying up after his mother placed him and his brothers into the temporary care of the state because of her drug problem. George Russ, the attorney whom Kingsley had gotten to know empathised with Kingsley, having not had a great childhood himself and he and his wife agreed to adopt Gregory.

I picked up on this and decided I wanted to do the same, my parents were not unemployed promiscuous drug addicts or anything or that kind, the problem was mostly down to my idolisation of America and American life and the fact that I wanted things (mostly computer equipment) that my parents could not afford. At this point of my life, my parents and I were seeing a child psychiatrist who rather than pick up on the fact that I might be Autistic, chose not to label and told my parents and I that I had “normal teenage problems”.

Do normal teenagers write letters to social services and council chief executives trying to blackmail them into finding a new family in America? I also had an American maths teacher when I was 13/14, I wrote a letter pouring my heart out to him and asked him and his wife to adopt me.

The letter writing didn’t stop when I left school. At age 17, having been asked to leave the family home and ‘existing’ in a hostel for the homeless with virtually no money, I wrote another letter to the city authorities in Southampton, this time I didn’t want to go to America. I wanted to be self-sufficient, I wanted a swanky flat, laptop, car, driving lessons, etc…. of course this came to nothing again.

By age 18 I had a diagnosis of Asperger Syndrome and was living in a specialist college in Sunderland. Apart from getting to see the North East of England and meeting fellow people on the spectrum, it really didn’t help me. Having spent months living alone in hostels, I had my street cred. I had come face to face with drug addicts and people with serious mental health problems, but they wanted to treat me as if I was an insurance liability, I was not supposed to go off alone, even crossing the road was a big deal. I will admit I had fun some of the time, sneaking into university computer labs, using the Internet before most people really knew what it was (this was 1998); but the experience of living under one roof with such a mix of abilities, despite all being Autistic, we were not all the same.

I suppose I have always had plans for myself, who doesn’t? I was 19 when I first started working in IT and I liked it pretty well, so I decided I should keep going. However, none of the jobs I had really lasted much more than a year, either through my own doing or because the company had issues. I went to University for the first time aged 25, having given up at least 3 times on getting A-Levels or equivalent qualifications to get into University, I decided to take the route of a “Foundation Year” in which I would gain that level of knowledge prior to starting the first year of a degree. It took about 3 months before I got behind, couldn’t turn in my work on time and then became suicidal because my whole plan had shattered. I would never finish this course and I would never get my degree. I battled with this kind of depression many times over since then. I tried again to re-take the modules I had failed in the foundation course, I tried to do the foundation work for a different degree (electronics rather than computing) at a different university, but again got behind and dropped out.

I then moved to London at the age of 30. My first job in London and my first proper IT job for some time lasted 3 months. This has lead into a succession of situations where I have gotten jobs, for some reason given up or gotten fired, then had a huge breakdown where I became suicidal because my whole plan lay shattered again.

I don’t know what the solution is. I don’t think counselling will work, in my head, I am doing everything right, it’s the other assholes who get in my way and mess it all up. I have tried CBT, it didn’t work. There is documented fact to show that CBT does not work for Autism and a single book about how you can possibly adapt it for Autism!

All I want is a normal life: a driver’s licence, a car, some kind of house that I actually own (I don’t care if this actually a shipping container that I transformed into a house). These are simple demands, I don’t want thousands of pounds worth of Mac computer equipment or a family in America any more.

So every time I start a new job I think to myself, yes, this is good, I will use this money to do the stuff I want to do. But somehow it all goes wrong, usually leaving me in debt of some kind.

So, can you see my frustration? Is my attitude so wrong? That I want things that nearly every other person has? These are the problems I can’t fix and the cause of my current depression.

Why do I bother when the world doesn’t want to unerstand Autism?!

I didn’t go into work today, I am so tired and drained from dealing with all the problems, because I have been the only person who gets results, everyone comes to me to get things done or things just get left and then when users complain I am kind enough to help.

Case in point – long standing systems/network admin doesn’t have the time to help a company we have contracted to move users onto a new system, so I send this email:

Well fine then, these users will never be migrated and we’ll be stuck with the windows 2000 servers forever.

I am sick of being some go between for every other agency or company we deal with in order to get things done when they don’t really care.

That’s why I didn’t come in today.

Now I am going to the seaside for a bit. Probably see you tomorrow.

Then I get this back off my boss:

Seth

 This isn’t acceptable behaviour. I can tolerate certain behaviour and I accept the different agencies and stakeholders have different priorities and motivations and this is causing stress for everyone.  Before you go throwing your toys out of the pram you need to communicate with either me or Trevor.  I am trying to run a team here under very difficult circumstances and you storming out or not bothering to come in does not help and is compounding the problem.  I do not expect to have this happen again, I have personally extended as much flexibility as I can now.  If you decide not to come in tomorrow please refer to the agency.  

As much as I am tempted to say screw you, I know those fucking tories would love me to go back to them asking for benefits and help. Right now I have no rights, because I am a contractor.

So you want to know why so few people with Autism/Aspergers aren’t in work? People don’t care. They don’t really want to help, they just want to make it look good for themselves that they have employed someone with a disability and then when things go bad, they fire them.

Fix the employment system and you will have more people with disabilities in meaningful work.

Why do I let them get to me?

Tories… well, specifically members of the current cabinet including Iain Duncan-Smith and David Cameron.

They didn’t need to do this, they didn’t need to cut back on benefits to the extent that people will be made destitute, homeless and left to suffer. They could have looked for other ways to raise revenue, get back some of the taxes owed to the nation, but they didn’t. For this reason they cannot be forgiven.

Yet, supposedly, I am well off. I have a job, I get Housing Benefit and Tax Credits to make up for the fact that although I am paid what seems like a reasonable wage, its not really enough to exist in London. But I feel that I am really just existing, in a cold basement which I have tried to insulate the best I can. Paying £50+ per month for gas. I can’t move because I am a contractor, my job isn’t secure and if a letting agency ran a credit check on me, they would be horrified with what they saw, because I was made bankrupt 5 years ago.

But its not me that I worry about, it’s my friends, the ones really living on the edge, having to deal with these changes to disability benefits. The prospect of more medicals and more paperwork, despite the fact that they will never get better.

Today I let them get to me, those Tories with blood on their hands. I didn’t go to work. I called in sick. I slept on and off, worrying about what would happen to me, that I would screw up yet another job. I know I need help, but I won’t get anything, because in my area the NHS aren’t interested in Mental Health unless you’re about to kill yourself or someone else. You can hardly blame them I suppose, so much crazy in London with so many people from different backgrounds all trying to live together in such a small space. Then you add to that all the cut backs that the NHS is making or will have to make, again thanks to those fifthly stinking Tories…

Tomorrow I will go to work, I will try to forget about it, but how long until it happens the next time. Until something happens at work and my boss just says “I’m sorry Seth, but I’m gonna have to let you go”? I really wish I could fix this.

I came off of Employment and Support Allowance because I found a job and I wanted to work, not because my disability is made up or not a problem. It is a problem, but I have skills that I want to use, I want to help people. I feared the Work Capacity Assessment because my disability is not obvious and Atos/DWP are not willing to make allowances for that. I feel like I have no choice now, I have to get on with this job, but this country is such a hard place to exist in right now, especially if you have a disability.

First week at a new job

So for the first time since January I am working again. This is a bit tricky since I had become quite accustomed to not doing a great deal and sleeping late! So far the job is going OK, although because I work for such a big organisation who have taken on an awful lot of people for a certain event later this year, there is a lot of time sitting around not doing very much stuff and often sharing computers because there are more people than computers. I have realised, as I have many times that I do not cope well with boredom. It is difficult for me to “look busy”, as I am often too distracted by what other people might be doing or very poor at finding things to do other than chatting to people on facebook.

I have had one slip up so far, I didn’t go to work on Thursday. I suppose it was an impulsive moment, not enough sleep and not enough productive things to do at work the day prior had caused me to think too much about those less fortunate than myself and the government, and as usual, get annoyed and frustrated on their behalf. However, I did not harm myself and I did not run off to another country. I managed to email one of my bosses and found out in the process that he has a son with Aspergers.

Today was easier, the day was dominated by boxing up hardware that was on test in order to transport it to a live location. It didn’t take long, but at least I have a fair idea of what should be in which box now and the best ways to pack it up. All the hardware must be locked down with K-Locks, the most annoying things are these little eyelets which fit into a special hole on the back of the monitor and the system unit, in order for a steel cable to be threaded through and then looped around something immovable. Being very small (less than an inch square), its easy for them to get lost…

Hopefully next week I will get to go to said live venue and box this kit, set it up, etc.. it will be good to get out of the office for a bit.

The other part of today was scenario training… what should we do when x or y happens. The biggest issue was many people over-thinking the situation. You have two choices in this deployment if things go wrong – re-image the machine (akin to re-installing windows, but a lot faster) or replace the machine. I guess it makes things easier, but there is a part of me that says “I want to know why that broke” – I believe that person is probably stuck in the 1990’s-early 2000’s!

So now a weekend, a small change to sleep later, but not much of a chance as I have work to do for Open University courses due towards the end of May. Right now I am really really tired, so I shall be off to bed soon!

What to do next?

As some of you might know I have recently been offered medication as treatment for my ADHD. This is kinda the answer to the requests for help that have often dominated this blog, sometimes in a rather graphic way, including this post, this post, this post and this post.

I was originally diagnosed with Asperger’s Syndrome and ADHD aged 17, nearly every time I have asked for help from mental healthcare professionals the Asperger’s Syndrome has dominated the conversations with little attention paid to the ADHD. When I was at school this wasn’t picked up because (a) it was the early 1990’s and nothing much was known about Asperger’s other than classical Autism and (b) I was rowdy, but generally a good student. You could often describe me as “the class clown”, I had my good days and bad days, but in the subjects I was good at I did want to learn.

In the UK and especially within the NHS, the idea that ADHD can exist in adults is often considered as nonsense. ADHD is a childhood disorder and ends when children grow up, Ritalin the main drug used to treat it, isn’t even officially licensed for use in adults; so the idea that someone could go through their childhood without being diagnosed with ADHD and then expect treatment as an adult is preposterous! I have seen at least 5 psychiatrists, probably more who have told me this and therefore refused to even consider treating me or referring me to someone who could help – despite there being a specialist clinic at the Maudsley Hospital in South London.

So last week I was amazed when I went to see Dr Trevor Turner a psychiatrist with East London NHS Trust who within a 30 minute appointment confirmed the ADHD diagnosis and then agreed to write to my GP asking him to prescribe Ritalin to me. I had to pinch myself to make sure I wasn’t dreaming, I never thought it would be so easy. At present I am waiting for Dr Turner’s letter to get to my GP, so I haven’t taken the medication yet.

The question is, after 17 years of dropping out of courses, jobs and generally being depressed and thinking things would never get better, if the Ritalin works and I get my concentration back, what do I do? The worst times started when I realised I couldn’t finish the university course I started in 2005, and although I tried again twice after that it never quite worked out, mostly because I couldn’t concentrate to get the work done.

So, do I go back to University? I am thinking that if things have improved by September then I might enrol on an Access to HE course (which I did try once before, but gave up on) at a local college in East London. If that works out at least I will have completed something since I was 16!

Of course I could be completely wrong – even with the drugs I might be not able to do it. I dunno, the trouble is that I am 31 now and not getting any younger. Do I want to loose another 4 years of my life?! I wish I had a time machine…

So things are getting better and I hope they will continue to do so, even if no-one wants to give me a job at the moment!

Film Review: Adam

“A story about two strangers. One a little stranger than the other… “

I found out about this film by accident, there was no big press about it but a friend in Colorado sent me a message on twitter asking if I had seen it. I was quite amazed by the trailer and even more amazed when I actually saw the film.

This is probably the most accurate film about Aspergers I have ever seen, most films make some mistake or the actor playing the person with aspergers does something we would never do, but this was just right. The other thing that made it so different was that it did not try to portray things as being the best or the worst, it was a little of both. Some of the themes that are included are: Death, being laid off from a job, romance, being misunderstood by society, change, parties, but most importantly; theory of mind.

This film made me laugh and it made me cry, Adam could so easily have been me. I can’t praise it enough, go see it while you can. In the UK it is on a very limited release – it is playing at Odeon in Manchester Printworks until Thursday and also at some cinemas in London. Click here for more locations.

Update – Summer 2008

So its been a while since I posted anything, but I thought I’d keep people updated as to what has happened in my life lately.

At the beginning of August I had to sell my car and declare myself bankrupt. I was at the point of owing £15,000 and at my current level of income that would have taken me about 10 years to pay back, plus I would have been fairly povety stricken for that duration. Given my record of finding and keeping jobs(!) I doubt that I will find myself in some great earning IT job anytime soon, despite the fact I could pretty easily do the work.

The bankruptcy is going well so far, thanks to the Co-operative Bank I have a current account with a Visa Electron debit card and a fair bit more money available to me from my benefits given that I am not having to pay back what I owed to the banks and credit card companies.

Interestingly enough the Halifax, whom I owed approximately £6,000 to, has recently been taken over by Lloyds TSB (whom I owed £1,500), apparently because the Halifax had itself become insolvent. I’d like to say that I brought down one of the biggest banking groups in Britian, but sadly I think my debt is just a drop in the ocean to them! This is just the latest in a series of banking failures here in the UK, mostly brought on by the US ‘sub prime’ loan problem and the general ‘credit crunch’. Notice that no-one will use the word recession, and according to Prime Minister Gordon Brown, “this is not boom and bust”; who is he kidding!

My personal feeling, although this is extremely controversial, is that now is the time to wipe out all debt – after all, it is really just numbers on computers. Once we have done this, we should quit lending money to people with the soul exception of mortgages. No more credit cards or unsecured loans, because I believe this is what has caused all the problems: Consumer greed, and I think we are all guilty to some extent. But who is more guilty, the people forced into borrowing money for a better lifestyle (or sometimes just an existance) or the banks who spend all their time convincing us that we should take out loans and credit cards, sometimes to the point where we can’t ignore them.

Also during August I helped with a number of Autism research studies at University College London, but missed out on a MRI scanning experiment because of a small piece of metal left in me after my Gall Bladder was removed in 2001. It seems that I will never be able to find out the full details of the clip (make, model, etc) for the paranoid radiographers who control these experiments, because the hospital where the surgery took place have ‘misplaced’ the notes relating to it.

I also took part in research for my friend Kalen at the University of Manchester, who tells me that even if she can’t use my data – my reaction times suck and I definately have ADHD! Most people who meet me for just a few minutes know that I just can’t keep still, unless I am unconcious!

Whilst I was in the North West I was asked by a friend of mine to help at his workplace with some IT stuff. This taught me a few things: that my Windows Server skills are out of date and that eToken is more complicated than you’d think! eToken is basically a authentication system similar to smart cards, but uses a device that looks very much like a USB pen drive. It can also work over networks and this was the purpose, to secure servers at a remote site.

I have decided that I am going to use some of my time over the next few months to study for the MCSA exams or Microsoft Certified Systems Administrator. This is, I know a bit of a diversion from my Linux work over the past few years, but I don’t think I have the nessecary programming experience to be a proper Linux sys-admin. I last studied for these Microsoft exams back in 2000 when I passed the “Network Essentials” exam, but the failed “Windows NT Workstation”, sadly there was no credit for Network Essentials, it was just something you had to pass at the same time. So given that, my skills on the server aspects at least of Microsoft’s operating systems is about 8 years out of date. Maybe if I can improve my skills (and I’ll have bits of paper to prove it), then I’ll have more chance of getting a job… but can I keep it?

Spending about a week working 9-5 really made me realise how little I use the time in the day, since I have been back it has been a struggle to find things to do and not to spend money fleetingly. The lack of structure has if anything made me more depressed.

Last weekend I went to the NAS International Conference in London, it was a fairly good conference and a good chance to catch up with friends that I hadn’t seen for some time. I also got to meet some fairly big names: Alex Thompson from Channel 4 News (who has an Autistic son), Jane Asher (President of the NAS and all round good cake maker) and some of the producers and writers of Holby City and the film Snow Cake. I managed to ask some good questions as well!

Next wek I will be trying to spend my time wisely by doing some work, helping with binding for a printing company in Saltash. Its a bit of a long way to go, but its only for 5 days. So hopefully I manage to work out those 5 days! I’m also signed up to help chase up and collect in the voter registration forms for Plymouth City Council, that kinda pays on a piecemeal basis apparently, £1.50 for each form collected of which I will have 300 to chase!

Until next time… rave safe kids, rave safe!