Nigel, the Autistic Companion

The New Year starts and the old problems have to be dealt with.

Fear of change and confrontation kept me from dealing with my problems in 2023. But I did my hypnotism for panic attacks, stress and procrastination. I studied Youtube videos on procrastination. I did my prayers. Then Christmas was over and the hyper anxiety it causes was gone…so I was able to address the issues at hand.

First problem is income. My work is funded by local Councils on a scheme called ‘direct payments’. So, this is where the Council gives the money to hire a p.a. to the client, and the client is then the employer. The Council is not very generous with pay and they obstruct as much as they can – too few hours at best. It is a scheme set up to really deal with the physical disabled, there is no real acknowledgement of psychological or neurodiverse issues unless they come with physical problems. Learning Disability does fit into this as there is an obvious inability to comprehend many things or be independent. But most everything else they will put quite a bit of effort into avoiding giving financial support.

Obviously I work with Autistic adults, and unless they have comorbidities there is little chance of help. That impacts on my work. Very few want to pay for a p.a. from their own funds, even if they can afford to. A huge amount of Autistics have no money, or very little. I can relate to that as that is me.

So finding clients at present is very difficult. And I have barely any income.

This leads to the problem of paying for the Masters in Autism. Because I chose a degree that was taken on a modular basis (one module at a time, distance learning), it is a minimum of 3 years study. That is more than double the full time…and that means I do not qualify for a Student Loan. As I do not have much income that means I cannot afford to continue. When I took it on I thought I could claim the Student Loan, not realizing the finer rules. I also thought I had set up stable clients, but I lost one and have not been able to replace them. I have a client I was volunteering my time with, and put in for funding for them, but the Council is finding all the reasons it can to not pay. No money means no education.

So what do I want?

The idea of a Masters was to give others a sense of confidence I knew what I was talking about. That they might trust me, and maybe it would allow me new opportunities to help people. It obviously would have given me structure to study, and structure is always very helpful. So I could of learnt a lot from it.

What I discerned about working with Autistics, and being Autistic myself, was that a lot of us have no resources, which includes money. Some want ‘coaching’, which I take to mean some verbal guidance at regular intervals. Some are filled with fears, problems in reasoning which causes trouble in planning, or making sound judgements and decisions. Some cannot go out. Some go out but cannot connect to others. So often there is no money, no ability to make connections, great fear, and an inability to tell when the reasoning process is not functioning well (which causes bad decisions and delusions). So it was these with the greater problems I wanted to act as a Companion for. No idea how, but I wanted to be able to reach out to these people, the most disadvantaged.

Yes, everyone wants to set up to do ‘coaching’ because it pays, because it isn’t time consuming. But it is only for those who can afford it and are already self-managing to a greater extent. Everyone wants to set up social groups of some sort. I am very much of two minds on that one. I do not want to be ‘normalized’ myself – group activity is the easy way out: do group classes on Autism, group meetings to address the social isolation problem…groups, groups, groups. None of it is personal. Sure, there are Autistics who can self-manage enough to attend groups of all kinds. But what about us who can’t, or don’t want to? We still need some human contact, but not that kind.

Online courses and forums – no thanks. What many need, including me, is a real human who is willing to be patient and caring enough to listen to me, put up with me, and respond to me with maturity, wisdom, and direction. The mind cannot self-manage for those like me. When it starts going negative, or loosing touch with outside reality, there is no way of knowing until it is too late. There is no perspective. Someone on the outside of my mind who can act as a touchstone to help regulate my inner life is vital. No group can do that. No online course or self-help book. No government scheme or charity. Only an actual person who actually finds a way to connect to me so I can trust. Many others are in the same boat.

That is what I wanted to provide.

So for now I cannot. I am alone in this. No one to work with, as in coworkers. No resources. No ability to educate myself.

For now I must withdraw from the Masters, I just cannot build up debt. I had to buy a car last year as my last one literally fell to bits under me. I have to pay the debt on that. I have no savings, no pension coming, nothing. I spent most of my life not working, not able to cope with the work demands or the people. I turned my life around in my forties and really pushed myself to learn to drive, to get a job and do my first degree. I started late and it has been tough, really tough. Where at my age (55) people are often retiring or winding down, I have barely even got going.

Where I go from here I have no idea. My period of intuition and prayer has led me to deal with the knotty problems I have; to figure out what is in my heart – but figuring out what I can actually do in reality evades me. Maybe this is as far as it goes.