Category Archives: Autism

Hello from Norway

View of Tromsø from Mount Stor­stei­nen (421m) – click for larger view.


This is the view from the top of the Cable Car on Mount Stor­stei­nen (421m/1381ft) near Tromsø, Norway. The island in the centre of the picture is Tromsøya which is where Tromsø is situated. At almost 70° north, Tromsø is 217 miles north of the Arctic Circle and the biggest European city in the extreme north.

I have been fascinated by Scandinavia and the extreme north for some time, but until now I had only visited Oslo (Norway), Stockholm and Arvika (Sweden). The opportunity came where I had some time between jobs and the flight prices were reasonable enough to consider it. It is a very very beautiful place and it fulfils my quest of being cold – It has not been above 10°C (50°F) the whole time I have been here, the average summer temperature is not much higher.

I suppose I should be proud of myself recently, for despite some issues, I managed to finish a contract job and hand over to someone who is taking the job on permanently. However, recently I have had a lot of pain my back and so I go to my GP to ask for help – is almost immediate reaction is “you are overweight”. Cheers for that, I couldn’t have seen it myself! 42% of men in the UK are overweight (BMI >25 <30) and 24% are obese (BMI >30 <40).

If this is the truth, then I have no idea how I am going to tackle this, I have enough on my plate to worry about as it is, without feeling anxious about every crumb that passes my lips. Yes the pain might be relieved if I lose weight and maybe I will have better diabetes control if I lose weight, but I do not consider myself to have a problem in the general scheme of things. My BMI is 29.7.

It is very easy for anyone sitting there to say “you can do this” and “don’t give up”, but they don’t understand what that is like for me. Being different is hard, end of story. You then add in having a disease that you have to treat multiple times per day which if you did not treat could leave you blind or seriously disabled then basically you are screwed. When I first realised I had diabetes, it wasn’t such a huge deal and I could cope with it fairly well. But back then, I needed far less insulin to reduce my sugar levels to what they should be. You should not confuse this as being a weight issue like Type 2 diabetes – the longer you have Type 1, the more likely it is you will more insulin, there is often a so-called “honeymoon period” when someone is first diagnosed, this may last from a few months to a few years. Also you must remember that the cause of my diabetes was damage to my pancreas by pancreatitis, the longer this has gone on, the more damage that has been done. I would be surprised if I had any beta cells now, these are the cells in the pancreas that make insulin.

Every day I become more depressed about life in the UK – whether it be from the way the poor and disabled are being treated by the government, the rise of UKIP and right-wing views, destruction of the NHS and the welfare state or the increase in hate crimes against people who dare to be different. I want to leave these islands and find somewhere that is better, but as fast as I am trying to do that – I hear that perhaps it’s not all as rosy as I thought it was elsewhere. It seems the march of the far right in Europe has stepped up a pace recently and I fear we may not be far from similar events to those of 75 years ago when WW2 started.

The reality is this: if my GP does think that there is nothing other to my back pain than weight, then it will be very hard to get a referral to a specialist who might have further insight or be able to use better imaging techniques to work out what is going on. A plain x-ray has been done but I will not know the result until next week. Also I think from a money-saving point of view (which the NHS has been trying to do for many years) then blaming and shaming the patient is a very easy way for them to save money. I pay taxes and in return I expect to have free healthcare, a welfare state to support people in times of need and to be treated equally and fairly by my government. THIS IS NOT HAPPENING.

I do not know what to do anymore, except that I will probably continue treading the boards until something strikes me down and takes me out. Please let it be soon.

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!