Nigel, the Autistic Companion

Why did I seek out a late diagnosis of Autism? The chaos within and without, that is why.

The hardest thing in life is to accept yourself as you are…now that does not entail being entitled and just doing and thinking anything you are inclined to. Not to me. But it is knowing what is that part of you that you cannot change and you must accept and come to terms with, and those parts of you you can change and should change. So I see it as a balancing act.

For me I could never get this balancing act to work at all.

I tried various job situations, part-time, full-time, self-employed…I have tried that vocation in the Catholic Church route, both modern and traditional versions…none of those cured it. As far as work goes the only one that did help was unemployment!

Unemployment was years ago in my young days. It helped because it gave me total control of my life. In those days the rules and structure the government had on the unemployed who were claiming was very minimal. I am not money orientated at all and can adapt to low income…in fact I saw it as the cost of having freedom from the world and its demands. I could set up a daily routine, in detail – time up, time to wash, time to do this and that and eat, time to bed, literally every moment was timed. I could spend massive amounts of my time in nature, walking and sitting, and in studying. To me it was peaceful and beautiful. The amount of human contact was very minimal. In some of those periods I might have easily only known 2 or 3 people that I actually spoke to in my weekly life.

Once I finished secondary school I decided I wanted to do one of two things. Either enter the Church, or become a writer. So I was advised I was far too unintelligent to enter the priesthood, so that was not an option. So I must be a writer I said. Because this was a strange choice no one knew what to make of it and the school couldn’t do much. Not that they could do much about anything – the whole system was unfocused and useless. Thankfully my parents supported me in this at that time, I was only 16 and they allowed me to live at their and pay my way, no benefits to claim.

The reason I was told I was not intelligent enough to try for a Church vocation – priesthood or monastic – was my background at school. I was classed as remedial. This was based on my lateness to learn to read, my total inability to spell…my non-existent ability to deal with numbers in any way…my incredibly poor memory…I couldn’t tell the time (this only started to change around secondary school age, age 11/12 onwards).

I never understood anything, and literally no one tried to help me. The remedial class was just a few of us going into a side room and me being told how thick I was and useless. If I had an inability to do the work I was just nagged about it and told I was not trying, disobeying, being awkward, and I was thick. Then they gave up and left me. In my perception they were right and I was wrong, and I was useless at at life and could never do anything. I never questioned. This was installed in Junior school, and though secondary school wasn’t as severe in approach it was the same story and attitude.

Socialising, fitting in, making friends. Well, I didn’t. At all. I did prefer the company of older/old men. As a young child anyone 20’s up was of interest. But my preference was or 50’s upwards. I didn’t have a comprehension of age as a number, but for me each age has a feeling and men of those ages I liked the feeling of. But who wants to know a kid at those ages? No one. But I wouldn’t of known how to approach them anyway. My own age group I just really, really disliked. Playground mixing, groups, parties, discos, all the rest of the social side was painful for me.

Let me not exaggerate here. I did speak to people, there were one or two in the playground I actually talked to (and we are discussing junior school years here, up to 11/12 years old). But I cannot claim to have had a friend. Same out of school. I would ride my bike and there were times when others were there, but there was no bond, no friend, nothing like a coherent group. I have two brothers and a sister, but I cannot recall so much hanging out or much depth being there. I can recall lots of arguments and trouble, I can recall that very easily.

As I became a teenager it got worse, distinctly worse. I really did withdraw and the social problems became way worse, and that never let up till my late thirties – at which point I started to create strategies to try cope and make connections.

Why did I mention all of this? Because – to bring it back to point – these are my ongoing mental concepts. I am unintelligent, I cannot socialise or cope with humans, understand humans, find a way to make a living that is in harmony with my state of mind (due to making a living involving humans). That is my base line self-concepts.

I tried to become a writer then I could utilize my inclination to think and visualise, but at the time I did this (teens to twenties) I was suffering bad dyslexia without knowing it. I also had problems describing feelings and emotions in fiction, so my writing was rather too logical and cold and plot led with emotionally dead characters. No one like that, nor do they like terrible spelling. I also have a problem with fiction – while I can come up with concepts and scenarios, I contradict myself and cannot see the point in it…fiction is false and falsity is useless. It is not, but my brain insist it is. So since everything I do is rigidly purpose driven, and fiction has no purpose, I do not write much or for long. I can write short pieces and treatments, but then it dissipates quickly as there is no motivation. Yet all this stuff is in my head and wants to come out. So make sense of that. I can’t.

I tried the Church route – that is an entirely different series of disasters. Mostly due to how the modern post Vatican II Church has focused on community – I don’t do community in the way they do community. But in entering all that mess I did get my IQ tested and found out I was actually quite intelligent, which was a big surprise to me.

So then I ended up through a series of logical steps working in Support Work for disabled people. So this is basically the kind of work I spent the first part of my life dreading and not wanting ever. I just didn’t ever want to work directly with humans. Yet, I choose to stay in this line of work and develop it…why? Because part of me needs to help others. Because it counters my reclusive nature that I know is not good for me if allowed to go to its natural extreme. Because I have a brain that actually does work and it actually can help others to achieve whatever they want. It is still a great strain on me to counter that reclusive nature.

The imbalance problem – drawn to hide away and live a peaceful life where I have total control of my days, where I live from the mind primarily, where the control stops outside forces from causing inner demands and disturbances. That would be heaven to achieve! To cope with the drive to assist, help, whatever you want to call it, but overdoing that inclination and sacrificing myself for others. So the over focusing problem, making others my ‘special subject’ as they say in all this Autism literature. To find a way to use my intellect in intellectual pursuits, but deal with the practical job/personal life issues that need my mental energy, then physical activity…then coping with the meltdowns, disasters, emotional chaos, mental confusion, moon cycles, without having control to just down tools and recover.

You have to keep in mind that working with any person, whatever way, involves a massive amount of mental energy and intellectual processing, and if you are doing that as a job it relates directly to income, which relates directly to where you can live and how you can live…and in all that there is no space for endless meltdowns and recovery periods – rehabilitation doesn’t generate money.

So, I got to a point in my life that no matter what I did, or how I lived, I was in repeat cycles:

• Whatever job I did and however I did it (employed or self-employed) it did not bring peace and harmony;
• I always ended up in meltdowns and crashing (though I didn’t know it was this, it was just a breakdown to me);
• I put in place breaks, breaks in nice places, other distracting events in my life that were supposed to relax me but didn’t;
• I tried to socialise and could not cope. Stress, anxiety, misunderstandings, emotional drama – that is all I got. I cannot cope with groups at all and when I tried to do them I just got horrible childhood flashbacks to how depressed and horrendous I experienced life back then;
• And the endless attempts with natural remedies to boost energy and mental states was only half working, never enough to stop the meltdown, anxiety, collapse;
• And when I looked at my clients, our routines, our goals and situation; my home situation – I was happy, none of it could be done better, everyone was helping, the whole of my life should be working. There was no reason for a crisis at all. I was happy working with humans, I found good ones to surround myself with, and wanted in my own will to do this work.

Hence, I knew there was another layer somewhere. My experience of life was terrible, but there was no normal, logical reason for it to be terrible based on a normal person dealing with his normal problems…and I had dealt with every problem. I researched, read myself silly, logically practiced every technique, did life plans, dealt with my needs. Still, life was a burden and not peaceful, not happy, not working for me.

I found myself in a situation where I was very open to suggestions to what was this hidden problem. This aspect of me I could not see at all.

So, on unexpected day a complete stranger (via a work situation) suggested I was probably Autistic. It was based on very little information, since they were a stranger, obviously. It took me very much by surprise. I was startled.

The reason I was startled was that though I had been working quite some years with Autistic adults, they also had rather extreme co-conditions. Learning Disabilities and Difficulties, brain damage, schizophrenia, etc. So I just never recognised my own symptoms from learning about these people. The co-conditions covered the underlying Autism in practice to such an extent I could not self-identify via them. There was something going on, I knew that, I spoke about this to people – I always knew what to do and what I did worked really well to help others. Why this was I had no idea at all, and this particular point is what this stranger picked up on.

I did not take it seriously at the time it was said. I didn’t read up on Aspergers, or Autism, as present in those without co-conditions. I didn’t pursue it at all. But the problems in my life just relentlessly continued and there was no other suggestion as to why and I was so tired of suffering this way. This suggestion I was Autistic nagged and nagged and nagged. I did not believe it, but it was the only thing that I had not looked into and was a possibility. So after four months I started looking into what Autism was in itself and how it looked in an adult.

What I found was extremely surprising. I had two sources of information. One was a current client with Aspergers, and he started opening up to me about his experience of life and I started to recognise it was very close, if not the same, to mine. I am not one for online information, so I went to books, my first point of contact. I started reading lots of books. Truth to tell it took me no time at all to recognise myself in these descriptions. I basically was a stereotype and not at all original!

Did it help me to find this out about myself? I am what I am, so that did not change. Knowing that the problems are not real problems helped. That I just have a different inner state of being and that needs a different environment to exist, that helped. I stopped fighting myself. That is the biggest thing for me – stop fighting. Stop trying to be like others, stop the expectations.

The other element it did change in me was realising why I could do my type of work, why I wanted to do it as I was doing it, and created focus to then not just do this blindly on instinct (as I had been doing), but be able to use my intellect to co-operate with my needs.

I was not going to pursue a formal diagnosis, but in the end I did – so I had assurance I was not misunderstanding myself. Because I do recognise I have trouble with self awareness and get very confused in that area. So a professional outside opinion gave me a base line to start understanding myself from. Autism as a concept, an identity, is a baseline – it is a completely different perspective on life. It involves a unique sensory experience, a unique internal experience of emotions, thoughts, feelings. A unique experience of assimulating everything there is in life, so obviously a totally different outcome on actions from a totally different comprehension of data.

And that is why I sought a formal diagnosis!

That, though, is only the beginning of the journey. And as you soon find out that bit of paper, that rubber stamp, gets you nothing outside of your own thoughts. And that is what this is about, this blog, this idea of being a Companion (which is what I was doing anyway)…and anything else I will do from now on. No, there is nothing unless I create it. If anyone else wants to create it with me, that is so much the better! Being alone with Autism is no fun.