Living with Asperger's syndrome, by Larry Arnold

Two years beyond my mothers departure

I got as far as the Globe theatre and was exhausted by the heat.

On returning I discovered my mother. short of breath, and complaining of an asthma attack. This was not such an unusual occurrence, however it was particularly severe. She could have contacted me as I did have a mobile phone, but she had wanted to remain in the meeting.

On the journey back up, it was touch and go. I treated her with the portable nebuliser, which we always carried. She remained on her inhaler for most of the journey to the caravan site.

The following day, we drove back and the doctor was summoned. I was not too worried as this had occurred often enough before, she had let an infection develop and was reluctant to bother the doctors with it as she knew it would be yet another stay in hospital.

This time it was more severe. She waited on a hospital trolley in admission from about two in the afternoon till sometime near 3 am before a bed was found, and were it not for Norma who had lost her own mother a year before, I would not have had a break at her bedside.

In the afternoon I was back, there had been a serious turn of events, her breathing was as pro as ever and her heart rate an astounding 200 or more. I tried to be practical, she was hooked up to a machine telling her blood gases and heart rate, by positive feedback we willed the one up and the other down, but it was a losing battle.

A nurse disconnected the machine saying that it was only a bother and a worry to me watching it. Visiting time ended and I was allowed to stay. Eventually my mother drifted into sleep and I was worried by the change in her breathing. I tried to talk to her, as did the other patients, saying come on chatterbox, you're not usually like this.

A sleepy voice just intoned "sleepy". While she was in this state, a nurse came and administered the nebulizer. It had had a paradoxical effect earlier raising her heart rate, and I was worried about it but couldn't contradict the nurses.

Eventually I called a nurse to say switch it off, she's dead. As I felt the life ebb out of her taking me with it. I should say that I made a good job of disguising to the hospital how ill I was too, with no doubt the same infection. else they would not have allowed me on the ward.

The nurse said not to be silly, and connected up the machine again. No pulse of course, but then she did start to life again breathing very shallow and calm in a mechanical way.

We had already decided together that she should not be put on a ventilator if she got into this state.

I did not believe she was really alive, but continued to talk to her as told. I left later to tend to the cat, and returned to find she had died officially this time.

The effect on me and my life was devastating. I was living in her flat, and receiving a government benefit to look after her top up by whatever she could give me. The flat was in her name solely and s it was adapted for disabled people I could not continue to live there.

I had all the funeral arrangements to make, I had to dispose of all her goods as quickly as possible, find some way to earn my living. as well as tidy up the administration of Coventry Council of Disabled People which had been using her flat as an office and headquarters.

My first act was to see an emergency doctor as I needed treatment for my own chest infection. I was deprived of my car because the insurance was in my mothers name, and being a limousine it was next to impossible for me to get insurance for private use. The hospital was some distance away where I needed to sort things out, as was my own original home, which fortunately I still paid the rent on, although in the previous years I did little more than visit it and spend the odd token nights, in order to retain tenancy. when my mothers care needs allowed.

My benefit would continue for a short period of time, after which I would have to look for work, regardless of the responsibilities I still had tidying up my mothers affairs, which went on for weeks and weeks.

I moved with difficulty most of her things, including her electric wheelchairs and most of the files of Coventry Council of Disabled People into my third floor flat, living there with just about enough room for a bed and everything else piled from floor to ceiling. I am only just now, two years on clearing the backlog from that, and regaining a place to live.

The rest of the stuff went to Norma, who was and still is secretary of the Council of Disabled People.

For myself I did not know what to do, I was in a total daze, recovering from my own illness. I was worried sick about how the benefits agency would treat me now, and how I could maintain all the costs which my mother had been paying for storage of a caravan, for a mobile phone, for rental of TV's and a washing machine, all out of £70 benefit which was then reduced to £50 as I no longer qualified for what they call a premium.

I went to the doctor, and he sensibly gave me a sick note. When the DSS challenged him for more information, he made out another, indefinitely. I would not have to worry about looking for work in the short term at least.

I tried to claim the sickness benefit I had been assured had been protected by credited contributions over all those years of caring, and discovered that the government had lied about this. I was not entitled to it, because of no paid contributions having been made before I became her carer, not only this, I was not going to be entitled to a retirement pension when I reached 65 either. It was a time of great worry and concern, never mind the bereavement.

I organised the funeral remarkably well, driving the car, reading a poem and playing my flute as her ashes were scattered. suppressing emotion. People maybe found this odd, but it was me. My brother left me to organise everything, perhaps I am stronger than he?

Anyway as time went on, I inherited one half of my mothers savings after going through due legal process. This meant I had something to live on, as she had quite a sum invested from the proceeds of selling her house a year or so after my father died. My brother was able to use his share to buy a house. He was working, so he did not need the money to live on.

After a while, coming to terms with my mothers loss, I realised that I no longer knew who I was, or where the future lay. My identity had been submerged in hers, for all the period I had been caring and working with her for her causes. I did everything behind her, and if I came into conflict with people on occasion because they could not understand my manner, well it did not matter, because I did not count for anything. Now it had to be different, and I was brought face to face with my own inadequacies for the first time in 17 years.

I underwent some counselling at this time, as I knew that I needed to manage certain situations, and this did some good, however mine was not an ordinary bereavement. I had lost not only my mother but my mentor, in fact it was if I had lost a part of me, my communicator to the world, my reason for existence.

I mourned at first the things we had planned to do in that year, the holidays we would take together and the things she would now never see.

I realised of course that I was mourning for me, as she was beyond missing those shared things.

I plunged myself into looking for work, in spite of the fact that I was officially incapable of it, and had no skills or even a job description I could apply to myself.

I sought work in the voluntary sector, and had some early and bitter disappointments, no doubt because of badly prepared applications when I was really in no state to be filling them out.

Later I had the odd interview, as I refined and doctored my CV, to look more positive, overlooking the fact that I had not worked before, but trying to imply that the voluntary work I had done was sufficient.

The interviews were my sticking point. I did not know what to do at interviews and I was not aware of my mistakes at the time. I did not know then, that I am deficient in body language and that that matters. I did not know that eye contact matters, nor did I know how to modulate the pith of my voice to a small group of people as it usually sounds as if I am delivering a lecture to a large hall. In fact I still can't do it.

Well I should not really have been looking for work as I was "on the sick" however I realised that most people define themselves by what they do, so I tried to find something I could do, so I could call myself by that name.

Eventually I had a bit of luck and was able to work part time, freelancing for a business newspaper. There I was able to employ my talents as a writer and photographer. There I had to develop some rudimentary social skills in order to make contact with business people, and I managed to act the part of photographer quite well. After all it was a long-standing hobby of mine, and I was able to use my mothers inheritance to buy the necessary kit and equipment, behind which I could hide.

Photographers have a way of isolating themselves from the subject, merely by looking through the eye of the camera. This is the reason why so many war correspondents are oblivious of danger. They are not part of the scene, they are an observer. Thus I was.

At the same time I needed to develop some business skills, as I had to formally establish myself as a business. It had been my intention to continue working for the paper, whilst developing my own contacts and branching out.

Like most things in my life it was not to be. I parted company with the paper for a number of reasons, I won't go into, but I was not happy with them. Although I had minimal contact with the people there, they were sending me on too may assignments without proper preparation on there part.

It was making me look bad, and did not fit in with my own way of doing things, putting the customer first. I pride myself on reliability, and cannot abide situations where I cannot control this.

It was hard trying to grow the business, as I did not really know who and what the competition was or what the market was like. I was to learn later of all the mistakes I made, but that is to skip what happened in between. I had discovered an identity for myself at least, but the worst was yet to come.

A year to the day, after my mother died, I had spent the day with Norma, and in the early morning had gone with my cat, to keep vigil at the hospital where she died.

When I returned to my flat, It had been burgled and all my photography equipment stolen, as well as a lot of computer equipment.

Insurance companies were suspicious and did not pay out for nearly two months and I was incurring debt to replace things I needed to immediately. Worse than that, my savings had become exhausted to the point where I had to sign on temporarily for work. Or so I thought. It was actually the end of the business.

You can see from my bulletins to the world, in my "mission" pages where my mind was at, at that time, and before, when I had lost my mum.

I will back track a little, as it is at this point that my learning and cognitive disabilities begin to assume a more prominent role in my life.

I had in fact got an inkling of something when I advocated for a child with ADHD, as part of my voluntary work. I found instant recognition of my own school days in a lot of his problems. It was also the first time I came across DSM IV (the diagnostic and statistic manual of psychiatric disorders)

I did not think to take this line of enquiry any further as regards myself, only to note that, if this was a problem considered severe enough to warrant the high levels of benefit, we won for the boy, then my parents must have had a hard time bringing me up to, not to mention my brother who had his own difficulties.

However whilst looking for work it became apparent that, although I might not think I have any difficulties employers do not share that optimism.

In the British system, I was allowed to look for work as photographer first and foremost, but if there is not any work in that you have to look for anything that is available and within your capability. As I had already discovered that there is no shortage of photographers the hard way, I had to think about what else I could do, based on what I had done voluntarily. I saw no reason to introduce any restrictions, however I still had hopes of returning to business.

It was during one job application in particular where I was required to take an aptitude test that all the old bogeys returned to haunt me. I failed at it spectacularly. Not only was my co-ordination slowing me down, but my reading ability, particularly where figures are concerned. I decided I needed to do something.

In fact I approached the dyslexia institute ( I was aware what dyslexia is, though I was still in denial) and they informed me that co-ordination difficulties are due to something called dyspraxia, which I had never heard of. At this time, having access to the net, I found out the dyspraxia foundation, and discovered the description to fit and my childhood like a glove, explaining so many of the things, which had simply been passed over before s being due to a lack of effort on my part. It was a neurological disorder as real as dyslexia, and also having much in common with ADHD.

There are however good reasons why I did not go rushing off to my doctor demanding a Diagnosis, as that is not how the health service works over here. It is a low priority, if the doctors have even heard of an adult diagnosis of dyspraxia, which is mostly seen for the first time in children.

Well the next stage on my journey of discovery was doing a business course. I was able to do this as the department of employment does approve certain courses and they are set up so you can attend and still claim benefits. I should have done this course a year before I had leapt into self employment, as what it taught me was all of the things I had done wrong, the lack of a proper business plan, of market research and more than anything else competitor research. It is a catch 22 thing because you have to be unemployed in order to go on such a course and a year before I had been considered incapable of work according to the system and was not entitled to benefits either.

The upshot is that my learning difficulties made some parts of this course difficult, particularly with regard to forecasting costs and revenue. I gave it up knowing that I did not in reality have the necessary skills to market and administer my business as a photographer, all I could do was take pictures and write good copy. If I am to succeed in business I need a partner to take care of all of that, and by now I had no more money to invest.

If you give up on a course the department of employment wants to know why, as they are paying for it.

It was then I needed to make the PACT (placement advisory counselling team) aware of the extent of my learning disabilities, and it was they who sent me for a psychological assessment

To cut a long story short, the assessment confirmed the obvious, which was I am dyslexic, my mathematical skills are particularly poor, and I have problems with memory and attention. All this I knew. My co-ordination difficulties were perversely ascribed to my visual problems (they are not due to this at all it is a common misconception, and one on even held for a long time)

What I did not know, was the extent to which my social skills were impaired, which is what got me into looking at Asperger's syndrome.

How had I heard of Asperger's ? Well it seems that this is something which is discussed amongst other dyspraxics and it is through the dyspraxia mail list that I came across others on the same path.

I have since found out all I can about it, and I am reasonably sure that it accounts for the bits that the other diagnoses don't. A number of other people have in fact suggested it to me as a possibility and from my reading of the literature, and analysis of my own behaviour now and in the past, I did not see anything to rule it out.

Well, I might have been content to leave it at that but during a visit to London I took the opportunity to visit the National Autistic Society and asked them how I could secure a diagnosis. They were very helpful and actually had the names of consultant pyschiatrists in Coventry who I could get a referal to, though that would be up to me how to go about it.

I took away some leaflets and contact numberws for the West Midlands who they said much the same. I was very nervous of how to approach this with my own GP, however I had been waiting to get an appointment for counselling for some time. I am afraid there are aspects of my behaviour which do no credit to me, and the counsellor was convinced I needed a pyschiatric referal of some kind. I showed her the Autistic Society literature and explained that an evaluation for this might be more apropriate. She agreed and offered to mediate with my doctor to suggest this.The upshot is that my Doctor raised no objections to this and refered me to a clinical neuro pyschologist who subsequently confirmed Aspergers Syndrome.