Another update

Hi all.

It’s been a while. I’ve been working on what is now a ‘manuscript’ instead of just a ‘document’ (doesn’t that sound official?) and still learning to live with autism, instead of merely existing.

The most difficult part, I think, is that I know  acknowledge that things are difficult, where before, I just did them. This is undoubtedly confusing for people – I used to do those things and now I’m complaining I find them difficult.

Truth is, I always found them difficult, and ignoring that cost me my happiness and the chance to lead a productive, fulfilling life. Balancing is still tricky to learn, and of course I sometimes do things that I find hard because it is necessary to do them. But I’m learning to plan time off to unwind, and tricks to not make difficult things any more difficult than absolutely necessary. It’s the downside of being diagnosed so late in life, I guess.

I don’t seem to have it in me to become very spiritual. I think I’m sort of okay with that.

Meanwhile, the manuscript is at the end of the ‘first draft’ phase and being read by a couple of people who will provide comments and suggestions for improvement. (I fear getting back a list of ‘throw it out and start over’ comments).

So…that’s about it!

Also, I attended my first Orthodox funeral last week and was struck by the…practicality, intimacy and down-to-earthness of it all, right next to looking towards the resurrection. Even so, I hope not to attend another one.



Progress, not Perfection

Hi again.

As promised, an update on the book. Or booklet, really – it’s not very long. I’m quite happy to be able to say that I’m done with a first rough draft. More stories are definitely still welcome, and I hope some more trickle in for the next couple of drafts, but the basic outline is done!

The process was surprisingly emotional, even though I have not yet figured out what kind of emotion. If I ever write a book again, however, I’ll write a fantasy novel or something like that; that ought to be easier than to write on something that a) I am living through and b) has so much potential for saying something completely wrong.

The title of this blog refers to that  – a friend of mine used this as a nickname long ago and it’s how I learned of this expression. It’s what I’m keeping in mind in writing: that I’m seeking to make progress, and perfection is, has to be, still a long way off. I don’t have to get there. That’s not my responsibility, or at least, not mine alone. Making a tiny bit of progress is good enough.

So – again – I’ll invite adults with autism in the Orthodox Church to share their experiences and stories for this book (all contributions will be anonymous, of course, never fear) and I hope in the end I’ll be able to say I’ve helped make a little bit of progress.





A Short Note

A short note to let you all know why I haven’t been posting lately.

Well…the thing is…I’m sort of accidentally writing a book.

Only a tiny one, mind. But I reworked a lot of these blogs, added bits, restructured bits, asked for advice, and, there you have it. Halfway through writing a book.

Actually, it is quite self-serving. I am hoping that by writing a short booklet for orthodox adults with autism, other people will take up where I leave off, and write the dozens of books I wanted to read, but couldn’t, because they don’t exist.

Also, I’m looking for stories, experiences, weird/funny/odd questions you get asked about autism, things you do to make your life in church easier, things you do that have improved your spiritual life (or things that definitely didn’t). If you are willing to share and let me use it in this book, I’ll be very grateful. Leave a comment with your email and I’ll get back to you. Think of it as an opportunity to share, for us with one another, but also with your non-autistic fellow parishioners, on what things are like for you. After all, how will they know if we don’t try and explain?




It’s not a problem, it’s a challenge! *ugh*

That title is just bullshit, don’t you think? (pardon my French). Of course some things are just problems. They’re annoying, they’re painful, they’re standing in the way.  (For a further, excellent, exploration of this, see David Mitchells Soapbox)

Our autism provides us with some strengths, but we’d be crazy to deny it also causes problems.

Still, when it comes down to it, there is a grain of truth in the expression.

We HAVE been given unique opportunities. People around us cause us near constant pain and confusion, to which they are either oblivious or indifferent. Only very rarely will we encounter someone willing to accommodate us.

That means we live in an almost permanent state of being forced to forgive people who are not in the least remorseful. We live in an almost permanent state of not knowing what’s next, forcing us to rely on the only Person who IS constant and reliable.

And because of this, when we do encounter those rare people willing to make an effort, we have all the more reason to be thankful.

So all things considered, maybe we’re not that badly off. We certainly have been provided with loads and loads of practice material on our way to sainthood (whatever route we need to take there).

Also – our own peculiarities provides plenty of practice material for other people, so we contribute quite a lot to their deification process, as well 🙂

Of the above, only the latter comes easily. The other two – forgiving and relying on God – require practice. Especially when our brain difference requires that we take a different and sometimes uncharted road towards that goal.

Let’s explore those uncharted roads. Let’s make roadmaps for future generations, for the children with autism who are growing up. Let’s set aside all those things, excellent and godly though they might be, that do not work for us and make our way to our salvation by finding the ways in which we can.

It’s not just that we owe it to ourselves – a true, if cheesy, sentiment – but we owe it to Christ Who came to save us, came so that we may have life. After all, if there’s *anyone* who has shown Himself willing to make an effort, it’s Him, right?


New Year Wishlist

Happy New Year everyone.

I find myself pretty relaxed and with a head almost empty after nine days at the monastery. Since right now, everyone is still asleep after the New Year party, I have time to write down my wishlist for the new year. And this year I’ll have 366 days to work on the items on the list, since it’s a leap year!

  1. I’ll be nicer to neurotypicals and remember that they can’t help it. The poor souls have an overactive secretary in their brain – we must make allowances for that.
  2. I’ll work on improving communication with others. There’s a whole box of tricks that I’ve not yet tried out. Time to do some experimenting.
  3. Now that I’m no longer working with morse code and smoke signals to try and build a relationship with God (see a previous blog) I will invest as much as I can into said relationship, and continue to find new ways to do so.
  4. I will continue to find ways to make services more bearable, and implement them. I will give thanks for the people willing to assist, encourage, and suffer me.
  5. I will continue with this blog, in the hopes that one day I’ll be able to be at least of some assistance to others.
  6. I’ll be nicer to neurotypicals. (Yes, I know I said that in point 1. It bears repeating. They really frustrate and annoy the hell out of me and provide rich opportunities to practice all sorts of virtues. It’s not their fault and I will try to remember that.)
  7. I ran out of points. But I wanted a nice list of seven. So, as point seven: I will try to be less obsessive about such things.


That’s it on this New Years Day. I’ll get back to you when I’ve had more than two-and-a-half hours of sleep. Wishing you all a rich and fruitful 2016.




A Nerdy Take on Spirituality

What I plan to say in this blog I’ve touched upon many times in previous blogs, so don’t expect anything new, just something slightly more nerdy. And possibly even more heretical – I really should get a warning sign for that.

I was pondering existence. That in and of itself is not yet nerdy, but I arrived at the ‘what exists?’ point. There are things we know exist because they are concrete. You can smell or hear them, and, if you are violently inclined, kick them. Then there are things that definitely exist, but are not concrete.

Neither the mind nor the heart are concrete – they exist but cannot be touched or heard or seen directly. They have to manifest themselves through a medium that IS concrete. The brain.

The brain itself is neither heart nor mind, but like a computer holds the information for both. In the brain both mind and heart manifest themselves. The ‘data’ from heart and mind is ‘read’ from the brain and ‘data’ meant for the heart and mind is ‘uploaded’ there.

The mind likes to think it can have all of it, and quieting the mind and getting into the heart means giving the mind less bandwidth to read or upload.

The result of a brain difference like autism is then, not that there is no mind or that there is no heart, but that the ‘reading’ and ‘uploading’ processes to the concrete medium in which they manifest themselves – brain – is not standard. Different procedures are required, and the results may look different.

What is spirituality? It is difficult to define, especially in this day and age where almost every stray thought is labelled as ‘spiritual’. Frequently people say that ‘this or that is spiritual’ or ‘this or that is unspiritual’ but what is, at its core, spirituality?

It has to be, once stripped down, that spirituality is the process by which the human spirit is attached more and more closely to the Spirit of God.

If that is so – and I might be very mistaken, seeing as I cannot be considered even a novice in these matters – then any act that promotes this attachment can be considered spiritual.

From that might follow that there are acts that are always spiritual in nature. They always aim towards this attachment. It is not automatic that they also work to the same degree in everyone, but neither will they undo that attachment. They have no other purpose than to try and enable it.

Likewise, there are acts that never promote this attachment because by their very nature they detach. It is their purpose to do so. To what degree may once again vary for each person.

And then there are many many acts that either attach, detach, or do nothing at all, also depending on the person. They are in and of themselves neutral, and only their use will determine the result.

Stripped down to that – spirituality is any act that promotes the process of attaching the human spirit to the Spirit of God – the tools and methods available to us to do so become numerous. And living a spiritual life consists only of doing those things that are most efficient for us – determined by the programming of the concrete medium through which our heart will then manifest itself, our brain – to achieve this ever-increasing attachment to Gods Spirit.

Autism is still relevant in this in the sense that it determines how the brain functions. But spirituality is not beyond our grasp at all – in the huge toolshed available there must be something we can use.

It’s just a matter of trying them out until we find the right ones.