Contributing to Parish Life

As Orthodox Christians, we know (even when autistic) that we don’t believe on our own. The concept of being a believer but wanting nothing to do with any church or community of believers is alien to us.

With good reason, I might add. When accepting no authority but our own (thinly veiled as ‘the Holy Spirit shows me’) and having no interaction with other believers to keep us on the right path, it is just a matter of time for heresy to crop up.

However, we do have trouble interacting with others, and we do experience difficulties. Being part of the Church in concept is all fine, but the practical application of this – and no concept within the Orthodox Church is without a practical application – is that we live in a parish with actual people. Some of us don’t manage that; that’s the way it is. The communication and social difficulties we experience can be completely overwhelming, and aside from our ineptitude in these matters, there is also the ignorance or unwillingness on the part of our fellow parishioners that may lead to a situation where participating in services and parish life is not an option.

It is, however, very much the way things are, but not the way things should be. Like so many times in the history of the Church and in the practices of local parishes, sometimes we go with what works, or deal with the situation as it is, when circumstances are not as we’d like them to be.

Still, I gather most of us do want to contribute if it were in any way possible.

When talking to my therapist the other day about employment and what kind of jobs suit people with autism best, she said, “Three things. You need a job where A) it is very clearly defined what your responsibilities are, B) there is little or no time pressure, and C) your work does not depend upon the work of other people and you need not work together with others too much.”

This goes for parish life as well, I have found.

From experience, I can tell you that trying to work with people in a parish or para-parish (is that even a word?) group is doomed to failure. Working with volunteers is even more difficult than working with co-workers, because generally speaking, volunteers are even less reliable. Alright, it usually fits the ‘no time pressure or deadline’ qualification, but unfortunately in many cases that means ‘we’re not going to make ANY sort of agreement on time-frames at all and even if we do, we’re not going to keep it.’ That is not something we can comfortably do.

There are other things, however, that we may be able to do. I’ve mentioned the choir, in an earlier blog, as a way of making services easier. Since I am wretchedly unmusical, that is not an option for me, but I have found something I enjoy doing.

Our parish likes to put the sermons on their website for people to read, later. My job is to transcribe the recorded English and Dutch sermons into text, and, if necessary, translate them from one language to the other.

It requires a little bit of interaction with others – with the reader to get the sermons that I have not recorded myself, which he generally sends within days of me sending a note which ones I still need. With the priests for their preferences – two like to get their sermons sent to them so they can add notes, one likes to read the translations, and the fourth is the only one whose sermons I send along without any comments at all. But these are all fixed agreements that needed to be made only once.

Serving in the altar (for boys) may be possible and provide a structure for services.

Depending on what other activities your parish employs, there may be things to do that fit the three qualifications my therapist mentioned. We don’t need to avoid people altogether, but find things to do where our dependency on them to complete a job is limited.

One of the other things I am doing is writing this blog, hoping that together we can help ourselves live more fulfilling spiritual lives, preferably within the context of a supportive parish.

For that to happen, however, we need to speak out, explain what is going on, why things are difficult for us, why we react the way we do, and what we need to function. Unfortunately, that requires a LOT of the skills in which our autism limits us, so it can be tricky. Start with one person at a time. Write a blog. Get someone you know and trust and who knows about autism to explain it for you. It is important to get key people aware of our autism. We hardly need to announce it to the entire parish, but it may help if some people within the parish are aware of it, understand what it is, and are aware of what this means for us in terms of our strengths and our limitations.

Please, do comment below on what you do/did/plan to do in your parish, how that is working out for you, and what you learned that might be of benefit to others.

 

 

 

Wibbly Wobbly Brainey Wainey Stuff

(Again I must credit Father Meletios Webbers book Bread&Water, Wine&Oil for an explanation of mind and heart. But don’t blame him if I get it wrong. Assume I’m a really bad student. Hesychasm is not my strong point.)

I’ve mentioned this in an earlier blog, but it bears repetition and further exploration because it is a very important point:

Autism is a brain difference, not a mind difference.

In the mind rests our ego, our logismoi are partying in there, through it we perceive the world around us. It is a useful thing and created by God, so intrinsically good, but it has been, since the Fall, running rampant and making us believe that it runs the show.

It does not, or at least, it should not. It is right that we must strive to rest the mind in the heart, however vague and incomprehensible that may sound. It has to know its proper place. It doesn’t get to run the show. We are in control of the mind, not the other way around.

However, our mind is not the same as our brains. And autism is a brain difference. The mind uses the brain, certainly. But so does the heart. The heart may quiet the mind, but it cannot shut down the brain. (and a good thing too, or we’d end up dead.)

The goal – whether the road we travel is that of hesychasm or any other – is only one: To connect to God, to attain unity with Him. That is where we, all of us, ultimately belong.

Our brain works differently. It works differently ALL THE TIME. Autism isn’t something we can switch on and off at will (or even at random). Yes, we have days where we are not overstimulated and can deal with things that are difficult. That is not the same as autism being absent, because overstimulation lurks just around the corner – because details can hit us hard – and while we may muster the energy for a while to practice our social skills, they still are a learned behaviour at best. If it truly were a mind issue and not a brain issue, then the act of getting the mind to quiet and the heart to take over would take away all difference between neurotypical and autist.

But – and this is very, very important – this is not the case. People who have accomplished this have not stopped being autistic. Many do not accomplish this because of being asked to use tools that are alien and inefficient. Autism renders those tools alien and inefficient, and there are few alternatives available.

All this affects how we connect to God. Not THAT we can connect to God – that is something that nothing in the world can ever take away – but HOW.

Last week I wrote in a blog about my action-prayer experiment. Other experiments are ongoing, and what works for me may not work for another. After many attempts and frustration, I’ve concluded that at this time, in the ways I have been taught, the Jesusprayer does not work for me. I may find a time and place where it will work, but for now, that’s the way it is, and I direct my energy to finding things that do work.

And that is the whole crux of the matter. We need to find our own ‘how’. Someone mentioned in an earlier blog how her headcovering has helped her feel more secure in church, enabling her to attend services. While it is usually only common for women to wear headcovering – if this is something that works for autistic men, as well, then why not? Give it a try. Granted, people may give you some strange looks, but they were already doing that anyway. (Also, if you use enough covering, you will no longer see them).

Suppose someone has been travelling to a certain place for years and years by the same road. At a crossroads they take a right. But then someone else comes, and to this person there is no road to the right, or if there is, it is closed off. This person takes the left road, and eventually ends up at the same destination – only approaching from the other side. What right or wrong is there in that? Only if the person who goes right, tries to force the person going left to take his preferred route instead. Or if the person going left forces the person who has been comfortably reaching his destination by the road to the right, to go left instead. (Encouraging this person to try the left road sometime, as an alternative, could be good, but that is another topic).

Lucky are those who can take both left and right without problems!

What we need from our priests, from our neurotypical brothers and sisters, is the freedom and possibly the help to find our own ‘how’ without condemnation – unless we really do something unwise – and what we need from ourselves is to take that freedom and use it responsibly. What we need from each other is to share our experiences.

It is especially important that we do so, because a new generation is growing up, a generation growing up in a Church that is becoming more and more aware of their autism, but doesn’t always know what to do with them. Keep them quiet, yes. Tend to their spiritual needs, not so much. Yet the Church has a responsibility to teach these children, too, how to connect to God. For her to refuse to do so, to assume that autism means that such a connection is impossible, would be extremely unorthodox. We cannot expect neurotypicals to understand exactly what is going on with us, just as we cannot understand exactly what is going on with them. The children and teens with autism that are growing up now are going to need adults who have explored and are still exploring the how of connecting to God with an autistic brain. We need to teach them not to be afraid – God is there and waiting, wanting to be connected to, and perfectly capable, from His end, to do so once we find our ‘how’.  We don’t have to become saints to do that – ordinary unholy people struggling daily to make sense of this alien world, struggling to get through services, struggling to understand other people, finding their way over unexplored terrain towards the loving embrace of God, those people will do.

 

 

 

 

 

 

 

 

What Diagnosis Did

As I was going through the process of getting a diagnosis – which started with yet another treatment for over 25 years of depression and anxiety until I met a therapist who finally became suspicious and suggested we first exclude the possibility of autism; which, it turns out, we could not exclude – some people around me asked, “But what will a diagnosis do for you? It’s not going to change anything. Do you really need a piece of paper?”

Technically, of course, they were entirely correct. A piece of paper doesn’t change anything. Reality stayed the same. But fundamentally, a few things did change and a piece of paper does make all the difference – most of all in being believed.

First of all, I finally got to the bottom of the problem. Depression and anxiety were only symptoms. For years I struggled to function in a world I did not understand, believing that I was lazy, uncooperative, stupid, stubborn, manipulative, lying…and so on. As it turns out, I’m not – my brain just works differently. I found some of my own worth as a person.

Second, I am more free to be myself – now that I know a bit more about who that self is – and can spend my energy on what I’m good at, instead of waste it trying to do things I will never be able to do properly. I found direction.

Third, even though many people still do not understand after many many explanations, I can at least now explain what is going on, and why I cannot do some things, and can do others. Why I react the way I do, and why the way I react is slowly changing as I am returning to my default setting, and get rid of the many unnatural changes I made over the years in an effort to fit in. A few people get it, most don’t, but that doesn’t matter. I am learning to protect myself. I found boundaries.

In church, this translates to finding that I am not unspiritual, no more so than the average believer, at any rate. I am not a control freak (well…no more than autists usually are. Lack of predictability and clarity will cause us to try and create it for ourselves, and that shows up as control-freak-like behaviour as we try to make sense of the world around us, but it is a survival strategy, not a personality trait). I WAS going to type ‘I am not a heretic’ but I think, after what I’ve written in this blog so far, that the jury might still be out on that one 🙂

It also sets me free to explore why some things seem to be so difficult, some things do not work properly, and why some things work so very well. To not be forced into behaviour that, to me, is unnatural, and thus takes an enormous amount of energy. Not continually hold back what are natural reactions, just because they are not socially acceptable. Leaving church on the verge of tears most of the time from sheer frustration and exhaustion is not how it should be. I’m pleased to report that I now only leave church on the verge of tears less than half of the time, so that’s a major improvement.

It sets me free to work out my salvation – MINE, not anyone elses – and connect to God in the best possible way, instead of only barely getting in touch with Him because I am trying ways that my brain just won’t do.  It’s been like being told that to connect to the person living down the street is utterly, vitally important, more important than anything I’ll ever do in my life – but I can talk to them only via smoke signals and Morse code. Now, I can find ways to walk down the street and talk properly, meet for coffee, set up a joint project to trim the hedge and all the other things that allows the building and growing of a relationship. Yes, the smoke signals and Morse code would have done, in the end. If that’s all I would have had at my disposal all my life, and had done with them what I could, I am sure the mercy of God would have done the rest. But this is a lot more fun and a lot more satisfying.

So, no – diagnosis hasn’t changed anything, and yet it makes all the difference.

 

Speechless

In this blog, I’d like to share the results of an experiment I’ve been conducting over the past weeks.

Prayer has always been very challenging to me – at least, getting a hang of morning and evening prayers. After writing about prayer, I decided to see what would happen if I started to pray without words, only actions.

Well, for one, my icon corner has never been more decorated than it is now.  I made beeswax candles for the little hanging lamp, and some to put on the little table beneath the icon corner. So there are plenty of candles to light. (and also, due to feline interference, to blow out when I leave the icon corner, except for the hanging lamp)

Then I got flowers and put some with each icon, the remaining ones going in a vase on the table.

Intercessory prayers consist of two bowls, one filled with small stones. I transfer these stones, representing people, from one bowl to the other, one by one (although, quite quickly sometimes).

I make sure to do this when I have enough time to give it my full attention, and to brush aside any thoughts that wanted to interfere (like dishes not being done…) and only ACT. Although any remarks aimed towards God I did allow, but found that at some point, there were no words anymore there, either.

The result was a very peaceful and refreshed feeling, despite never once speaking or even opening a prayer book and despite not even looking to find such a feeling. All I did was, with all the attention I could muster, look after my icons as if looking after the actual people, with care and no particular expectation.

 

 

 

A Note for Neurotypicals

Since some of us have run into somewhat similar problems, I’m posting this ‘guest’ blog – guest blog in the sense that for once, this post is for neurotypicals, and not autists.

 

We’d like you to know a few things about us.

  1. You don’t know everything about autism. WE don’t know everything about autism, and we have lived with it for 30, 40, 50, 60-odd years. Psychiatrists don’t know everything about autism. It’s relatively safe to say that beyond God, no one does.
  2. Not everyone with autism is the same. That you know one person with autism doesn’t mean you know them all. That would be like us saying that because we encountered one neurotypical, we know them all. Autism is a huge spectrum. Severity of autism often, but not always, corresponds with severity of symptoms, symptoms vary from one person to the next and from one situation to the next. Yes, there are limitations and specific symptoms. But what combination of symptoms shows up in any one person may vary. And aside from that, we have our own personalities.  I’ve worked with autistic children and not met two that were exactly alike, even at a young age.

And then there are a few things that happen to us, that may need some explaining.

Open Files

For a moment, say the brain works like a Windows computer. We, like computers, need extremely precise information, predictability, and reliability to function. Information is sorted in files. If a piece of the information needed to complete the file is missing, the file opens. And stays open.

That file then acts like a pop-up. It will constantly appear on the screen, no matter how often you try to click it away. It will only close when that missing piece of information is somehow resolved.

Now imagine not one file open and popping up, but three. or four. or ten.

You’d never get any work done with a screen full of pop-ups. And that’s what it’s like for us. Our brains are dealing with these pop-ups and when there are too many (and how many we can handle varies per person and per situation) we no longer function. The files take over everything.

Sounds simple, right? And not particularly troublesome. Just need to keep files from opening. Or close them as soon as they do.

You wish. We don’t have a detail/important filter. So files open for things that you never even saw. Information we needed and you failed to give us because you didn’t realize we needed it. An agreement that you failed to keep, possibly because you never realized it WAS an agreement. “We should get together for coffee” is an agreement to us. A solid declaration to do something, requiring only a date and time to be finalized. You, however, may have long forgotten ever even saying such a thing. And you want to know what it feels like when that happens and you dismiss it because it didn’t seem important to you? Well, like this:

I walk up to you with a baseball bat and proceed to casually break your leg in passing. Whilst you are moaning on the floor, I raise an eyebrow and inquire what you are doing there. And why on earth you’re not getting up and getting things done. You’re supposed to run up to the attic and get some things. Get going.

…What do you mean, you can’t because I broke your leg? What a horrible thing to accuse me of! Besides, it’s not like a broken leg is that important. You’re just whining. You’d better repent. Oh, and get the stuff from the attic.

And I walk off, shrugging, leaving you behind on the floor to deal with your broken leg. Oh yeah, and that stuff that’s still in the attic, too.

When I say we need reliability and predictability, I don’t just mean you need to be more reliable and predictable than the average person. No, you need to be reliable in the 95-100% range.

That’s right, you’re not going to get there without putting in some effort. Few people are naturally up in that range. But when you’re not there, you’re constantly breaking our legs.

Now, you may think that we’re an awful lot of work. And yeah, we are. But look on the bright side – being incredibly reliable is not a bad thing. It will help you in many areas in your life, not just in your relationship with us.

 

Communication

Again, no two of us are alike, and while some general issues hold true for almost all of us, not all do and everyone has his or her own quirks in communication. And that includes YOU, you neurotypical! (Else, no two neurotypicals would ever have miscommunication amongst themselves, and I know for a fact that’s not true!)

Puzzling

No, I don’t mean that we are puzzling. Or that you are. Although, admittedly, you are.

What I mean, is that we often require a bit of time to process things. We see details, and need time to create the bigger picture from the details, as if we’re constantly solving a puzzle.

Any new incoming details end up on the pile of puzzle pieces yet to be sorted. How long it takes for your question or remark to get through, depends on a whole lot of things.

First of all, some of us are better at it than others. Second, it depends on how full our head already is with other pieces of various puzzles. If we’re trying to make five at the same time and have a huge pile of pieces to still sort out, you may imagine it will take a bit before we get around to replying. Third, it depends on what it is about.

For example, if you catch me at a friend’s office where I often hang out and ask me to make a cup of coffee, the response time will be almost instant. Familiar place, familiar activity, familiar to the point where it is almost automatic.

But if you are in a conversation with me that provokes an emotional response, you will likely never even see my reaction, because it can take literally days for me to get around to reacting. I need to discover that an emotional response has taken place, first. Then discover what the particular emotion was. Then discover why it occurred. Then discover that it has to do with our conversation. Then find out what it was in our conversation that triggered it…and so on.

So, give us a bit of time if you don’t see an instant reaction. We’re probably not ignoring you, but busy processing.

Also, if we’re trying to do five puzzles at the same time, chances are that in the midst of sorting, puzzle pieces will be lost and one or more of those puzzles will never show the complete picture. Or pieces get connected in the wrong way, to the wrong puzzle, even.

 

We’re not always wrong, even though we are.

We get genuinely upset. It’s not fake, even if you think it’s over something completely trivial. And sometimes we get upset over things that would upset anyone.

We have a disorder, we are told, that comes with some difficulties with empathy and a tendency to not understand social conventions, meaning we can, at times, be awkward, say things we probably should not, and disregard peoples’ feelings because we missed the nonverbal clues that they were having them.

If that is a *disorder*, then what makes it alright to shrug off OUR feelings as unimportant, disorder-induced, or irrelevant?

Aside from all that, we also have our strengths (no, not all of us can count the matches falling out of a box instantly or count cards at poker) which means in some areas, we may be able to contribute something very worthwhile if you bother to invest in an environment that enables us to function to the best of our ability. And many of us are capable of telling you what we need. Just talk to us (or better yet, write an e-mail with a list of points and a clearly specified request).

 

There are many more things I could write down, but again, one person with autism is not the other, and really the best thing to do is get to know the person you’re dealing with at that time.

 

 

 

 

 

 

Not A Conclusion

So how do we connect to God?

Unfortunately, there’s not one single answer. Generally speaking, there are a few things we can try:

  1. Communicate with God. Words are optional. Our world is often one of details, but God made every little detail, so He sees and appreciates them as much or more than we do. Share the obsession!
  2. Find the manner of prayer which works best. Practice some that don’t work perfectly, but are more common, so you can fit in if needed. If you do best with action as prayer, then try to do those action prayers at a time when your head is empty and you can give it your full attention.
  3. If an emotion occurs, fine. If emotion does not occur, fine. If you don’t understand the emotion and it bothers you, get someone to explain it. If no one can and it bothers you, tell God ‘there’s this freaky emotion and I don’t know what it is’ and close the file. You may find out later. Or maybe not.
  4. Love is NOT a feeling. It may CAUSE feelings. Do onto others as you would have them do unto you, because that’s probably where your strengths are. Be reliable. Be responsible. Show integrity. And if you do feel the overwhelming urge to hug someone, that’s fine too (if it’s someone you don’t know well, it’s probably best to ask first). Love God by putting in the effort on your part to build a relationship with Him.
  5. It’s not that our ego’s are more massive than anyone else’s, but we do have trouble seeing beyond our own minds. There isn’t a great deal we can do about it since that is part of what autism IS, but we CAN learn and memorise by heart what other people generally do and do not like. It may seem like total nonsense to us, but it’s real enough to them, so we’re going to have to make an effort here. Again, they can’t help it. Their brains just work that way. Likewise, there are things that we know God likes and dislikes. (Although God is generally far more consistent and predictable in His likes and dislikes). Part of what He likes is all of us making an effort to get along, so it’s important that we give it our best shot.
  6. Give it your best shot. But ONLY your best shot. It is not required that we somehow try to be something that we are not. Very little else is required of us on this topic, since God is perfectly aware of what we can and cannot do.

There’s much more – feel free to contribute to this list in the comments.

On another note, a few people have indicated an interest in writing something for this blog, so hopefully we’ll be able to put up a guest-blog-entry by them soon. Contributions are always welcome – sharing our experiences and difficulties may help all of us.

Moving Towards God – Forgiveness

Forgiveness

Forgiving is not optional; we’re supposed to love our enemies by forgiving them and praying for them. And if we’re expected to forgive our enemies (if God expects it of us, then obviously it is possible to do so) then we should forgive the people who are not our enemies even more.

There is, however, a bit of a snag for us when it comes to forgiving.

There is a difference between being reluctant to let go of anger to forgive, and suffering from unclosed files. They occasionally go hand in hand, but are in fact two separate things.

For example: someone promises to get some work or some article or whatever it is, to you by a certain date. The date arrives and passes, but your mailbox remains empty.

What happens then is an open file situation. Anxiety skyrockets, increasing and severe discomfort occurs, possibly resulting in anger because the situation is so unpleasant. The person involved does not react to our increasingly desperate requests (and then demands) to supply the promised material. The file remains open.

So, what do we do with this thoughtless and unreliable person causing all this?

At this point, with an open file and increased anxiety, don’t even bother trying to think about the command to forgive. It’s not going to work. In fact, all it’d be doing is opening ANOTHER file that won’t close.

First of all, the file needs to be closed. Until it is, it will not be clear whether or not forgiveness even comes into play. It’s not a matter of being unwilling to forgive. What we need is to be given a new date when to expect the material (and this one being kept) or an immediate delivery of said material. Most likely either of these will close the file and solve the problem.

Chances are that once a file like that is closed, forgiveness won’t even be an issue. Although some of us might appreciate an apology for the discomfort it caused, in others such a thing might not even register.

But we certainly are *capable* of holding a grudge! If that is the case, then we should take a good look at the command to forgive, and attempt to do so.

Forgiveness, however, comes in three levels of difficulty.

  1. The person who wronged us is aware of it, is sorry, apologized, and wants to make amends. This is an ideal situation (although it might still be difficult!) in which to forgive, especially if the person involved is a friend.
  2. The person who wronged us is unaware of it. This is a bit more difficult. There are two choices here: forgive with the situation being as it is, and the recipient of forgiveness unaware of even needing it. This is what we will encounter frequently, since a lot of people will be unaware that they cause us problems and pain. The other option is to make the person aware of our sense of being wronged. They will inevitably revert to situation 1 or 3 in that case.
  3. The person who wronged us has been informed of this, but is indifferent, uncaring, or even hostile. This makes forgiveness a bigger challenge.

Expect to encounter 2 and 3 most frequently. The things that trouble us are usually incomprehensible to others, and most often they will simply not realize, not care, or shrug it off as some quirk of ours. In fact, that we have autism will often lead people to think that any upset in us is due to our autism – which it may often be, but that doesn’t mean it doesn’t hurt, or that dismissing our feelings is not painful.

We DO sometimes react in ways they do not understand. This is not necessarily a fault of theirs. It is one of the biggest differences in their brains compared to ours.

To us, almost everything is of equal importance. Our brains do not do a lot of filtering. We see loads of details…LOADS. We tend to remember a lot as a result, but not always in its proper context, or in any context at all. This is probably also why we may completely freak out over something ‘unimportant’ but be completely unconcerned about something neurotypicals would consider a big deal if it were done to them.

Neurotypicals, however, not only differentiate between ‘important’ and ‘unimportant’ but the ‘unimportant’ things ACTUALLY DISAPPEAR FROM THEIR BRAIN! They get caught in the filter and are washed out as if they’d never entered in the first place!

So what upsets us may, to them, never even have happened. It’s completely crazy, but apparently that’s how it works for them.

Knowing this may help us in forgiving the shrugging off.

A subcategory of this topic is:

Asking forgiveness

We wrong people all the time. It’s a given. Often, but especially in a meltdown, we can be rude, aggressive, ignore people, reject those who wish to help, or a combination of those. We may believe others guilty of willful hostility and malice, when most of the time they are only ignorant.

A lot of the time we don’t do any of this on purpose. We’ll not go into the matter of sin again here, as we’ve already said enough on that earlier.

But sin or no sin, guilt or no guilt, we can always apologize, especially to those we consider friends, and/or those we encounter frequently.

It is not necessary to apologize to random passers-by, people we most likely encounter only once (like on the bus or train). In situations with people we encounter frequently, however, an apology and some explanation may be acceptable social behaviour. Take care not to go into unnecessary detail in an explanation. ‘I got overwhelmed/stressed out/my brain had trouble with all the noise/I need a lot of clarity and in this situation I did not know what to expect’ usually is plenty of explanation in such situations.

Our friends are a different matter. They will already know what went wrong, and most likely have forgiven us already, if they even held it against us in the first place. That would negate the need for an apology, except that we, of course, do not mean to hurt our friends any more than they mean to hurt us. An apology serves in this case as an acknowledgement of this. It says ‘Even though I could not help the situation, the result was that I treated you in a way that does not belong to the behaviour commonly associated with friendship. I wish you to know that I acknowledge that, and do not mean to treat the situation as if rudeness/aggression/rejection towards you is in any way unimportant or pardonable’. That whole paragraph can be summarized by ‘I’m sorry that this and that happened.’
Jonah: I find forgiveness in the case of abuse to be complicated. Forgiveness does not excuse the abuser, nor does it mean I will trust. It means that I no longer motivate myself in the relationship based on the abuse. To suggest that forgiveness is initially more is not safe.
The depth of forgiveness for me requires focusing a lot of energy on getting to know myself. I begin to understand the ‘why I do certain things’ of it all. At the depth I meet my own needs and attempts for survival and get to look at how those survival skills have both helped and hindered me.

Moving Towards God – Ego and Logismoi

Yet another note:

I am indebted for anything I know about ego and logismoi (which is, well, almost nothing) to Father Meletios Webber. For an explanation of ego and logismoi, check the first chapters of his book Bread&Water, Wine&Oil.

Ego and Logismoi

This is going to be unpopular – but ego is a major thing for us. Now, don’t immediately confuse ego with sin.

We on the autism spectrum are naturally more inclined to be egocentric. Our brains are less equipped to step outside our own ball of experiences and reactions, as our problems with empathy and tendency to get things connected in the wrong way shows. Our brains more easily get overwhelmed with stimuli and all sorts of input from the outside, and we protect ourselves by attempting, in any way we can, to limit the amount of ‘noise’ coming in. And if we don’t do that consciously, our brain will do it for us and just go haywire once the limit has been reached.

All of this combined means we often live more in our own world, with ego’s far more rigid than that of other people.

Now, a few paragraphs on ego and logismoi, as I’ve understood them. (I may have understood totally wrong!)

Ego is, basically, how we see ourselves and the world. A sort of story consisting of our views, our (sometimes paranoid) fears, our desires and expectations, all lumped together. And through it we see and react to the world around us.

Of course, in everyone, this ego is bound to be incorrect about a lot of things. It lashes out to defend from attack when there is no attack going on, likes to make its views known to everyone else (because obviously, we are right and others are wrong). Unfortunately others have their own ego, so this is unlikely to work. In fact, since every other ego will consider it an attack, the result can be nasty when none of the parties involved are capable of recognizing their ego and keeping it in check.

The ego seems to work in conjunction with logismoi, a constant stream of thoughts that, when left unchecked, is the starting point of almost every sin.

In all of this we have both an advantage and a disadvantage.

Because the minds of others are often closed to us, and we are already used to motivations being a complete mystery to us, we’re often also oblivious to the ego-boosting others indulge in. Stating a view, to us, is just that – stating a view, and an opportunity for an exchange. Yes, we may hold very rigidly to our views, more rigidly perhaps than others, but we do tend to react more factual than emotional. Many times, our own ego does not consider a challenge of our views an attack, although the challenge, especially an emotionally charged one, may puzzle us.

At the same time, the fact that others act in ways that confuse us and often cause very real pain – people not keeping appointments, changing views and instructions, or triggering one of our sensitivities by being loud, or touching, or any other way – may mean we consider ourselves under attack when the other person’s ego is not even involved at all and they are blissfully unaware of the problem they just caused. We may have difficulty relating to and rationalizing the other person’s motivations or ignorance of offense.

Ego is probably not actively involved in most meltdowns (the ones caused by an overload of incoming stimuli, at least) and even on the occasions where it is – because we listened to our logismoi and managed to get *ourselves* overloaded – our brain has already shut down and there isn’t anything we can do about it at that moment, until we get it reset and emptied.

There are only three things we can do, and they are not so very different from what every other christian, fighting ego and logismoi, will do:

  1. Try and prevent overstimulation that leads to meltdown. Try and close open files in your mind, plan activities and social interaction carefully. Closing files may be difficult to do on our own, it may be sensible to enlist the help of someone who knows how that works. Learn to see the early signs of overstimulation, and take steps to rest and recover.
  2. Dealing with other people, especially in situations where there is discord or discomfort, is difficult. Try and get things off your mind by talking to those persons about it, or unloading about it to a trusted friend, so that it won’t stay on your mind as a feeding ground for logismoi. We are known to get a hold of the wrong end of the stick, and are not particularly good, generally, in understanding the emotions of others. Some clarification from someone who knows us well might help.
  3. If that doesn’t work, when the meltdown is over and brain has reset, make a conscious effort to remind yourself that a) it is a meltdown. it happens. don’t feel guilty. b) it bloody well hurt. pay closer attention next time to prevent it. c) the person or persons causing the problem, if it was a person who provided the last straw, most likely did not do so intentionally. he or she was not out to get us. d) if the meltdown was a result of overloading yourself by giving in to logismoi, confess it and make a plan to prevent it in the future.

There seem to be several categories of logismoi. We are possibly more susceptible to some and less to others – ‘what if’ and ‘if only’ lines of thought require fantasy, predicting cause and effect in a hypothetical situation, and an understanding of how other people’s reactions may vary when our reaction changes. While some of us may excel in formulating scientific hypotheses, not all of us possess strong gifts in the things named above. Several of us, however, do, and combined with our tendency to obsess those logismoi might get a very strong hold of us indeed.

When it comes to rigid thinking, we may have a problem. Rules being broken is not something we like. Seeing other people break rules often has a detrimental effect on us. Part of it may be logismoi feeding ego or the other way around, and our brains, less equipped to fight against this sort of onslaught, may go with it. We, as humans in general, rarely have to struggle in areas where we are strong. We almost always struggle where we are weak, and in case of autism, there are some weaknesses we should try and be aware of.

Still, when we are aware of our strength and weaknesses, we may utilize that knowledge, and safeguard against logismoi and ego as best we can, as indeed everyone must. It is possible, again, that the ‘how’ of things can be a little different, since it is likewise difficult to *change* our way of thinking; we may have to find ways to simply cope and avoid.

Moving Towards God – Prayer

An important note at the start.

We’re getting into the area of the heart, now, and a few things need to be pointed out. While these articles are meant to offer support and practical advice, as well as a sharing of experiences that may help us all, there is much, much more that can be said about the heart and the mind and to get the mind in the heart.

It is important to realize that autism is a brain difference, not a mind difference. Since the mind is very closely connected to the brain, it manifests itself more prominently there, but the heart also uses the brain. We process things differently, and that applies to both heart and mind.

The pitfall here is thinking that the heart itself, while unaffected by autism – our potential to connect to God is NOT affected by autism – can without exception be reached in the same way as everyone else. The ‘how’ of reaching the heart may be different as well, since again, it also uses the brain.

This is largely unexplored territory, and the very reason to start this blog in the first place. Many of us have suffered in church; some of us no longer manage to attend church at all. If it were a simple matter of following instructions and our autism would disappear, we wouldn’t have such trouble. Our children wouldn’t have such trouble. Many things about autism are still unknown. Adults in general, and women in particular, are groups that are only now starting to be noticed on the autism spectrum. The transition of recently acquired insights from the psychiatrists’ office to the world in general, and the Church in particular takes far longer.

It is also why these blogs are speculative in some ways. They are based on experiences and knowledge of autism – I’ve worked with autistic children for years before being diagnosed myself – but it is also an area that has never really been explored.

Prayer

The number one tool to connect to God is, of course, prayer. To connect to someone you’re going to have to talk to them, somehow.

Prayer comes in many forms and flavours as well. Pre-written prayers and services that the Church has been using for centuries, our own prayers, as well as prayer that is action. The Orthodox  Church does provide ‘action’ as prayer, as we make the sign of the cross, light candles, venerate icons, kneel, prostrate, and basically, kiss everything in sight.

We’ll always be encountering a combination of all of this. Even neurotypicals have their ‘preferred’ form of prayer, so it is hardly surprising to find the same variation with us.

Take your time to find out what works best for you. Again, the goal is to connect to God, and we’re all looking for the right tools to do so.

The Jesusprayer

Lord Jesus Christ, Son of God, have mercy on me, a sinner.

A few words on this important prayer. The Jesus prayer seems to have become the ‘golden standard’, not just for monastics, but for all Orthodox Christians, and even beyond. Catholics use it, and even some protestants have discovered its use in one form or another.

It may seem, due to the emphasis on its practice, that the practice of the prayer is an absolutely vital element in achieving communion with God.

No doubt, it is a very powerful tool. By now, the benefits of its use are well-documented. There was, however, a time when its practice was not as widespread as it is now, and people still managed to achieve sainthood.

Do not fall into the trap of thinking that because it is the most powerful tool, and the most widespread, that it is the ONLY tool…or that not being able to work with this particular tool means achieving salvation is a hopeless business.

Right, then! What can we say about the Jesusprayer?

We can only speak from our very limited experience. I can do the Jesusprayer when I’m digging up the garden. Using a prayer rope distracts me from the prayer, because the sensations of the beads (I cannot bear the feel of wool, so I use a wooden one) override the far weaker grasp I have on anything verbal. Seeing the words ‘written down’ in my head already helps.

It is – and do not be shocked by this and call me a heretic – actually possible that this form of prayer doesn’t suit all of us. It may suit some of us extremely well; the repetition, the rhythm, combined with a physical object like a prayer rope might be heaven to some of us. If it is, wonderful! You have an amazing and effective tool at your disposal.

If, however, it isn’t, then ask yourself if the frustration of trying to learn to do it the ‘right’ way is bringing you closer to God, or is just taking up a lot of energy with no real results. Do not give up too quickly. It is perfectly sensible to make an effort to master this particular tool, since it is very powerful if you can get it to work, but be practical. If you find another form of prayer that allows for much easier interaction with God, why on earth would you discard a perfectly good tool that you know how to use, for one that barely functions for you, just because the general consensus these days is that it is the only way to achieve a connection with God?

For example, in our parish, all priests and quite a few of the people speak several languages,  and at times we need to try and find a common one. Sermons almost always require translation. I speak very little Russian. Some people speak very little Dutch. All of us speak at least some English, although for few of us it is our native language. So we frequently communicate in English.

When communicating, we need to find a common language. The same goes for communicating with God, although our task there is made easier by the fact that God speaks EVERY language, and we just need to find the one *we* speak, preferably our native one. Our mastery of another language, try as we might, will never be as complete. And learning an actual new language – I am working on Russian – is far easier than to try and learn another way to communicate, since our autistic brains are ill-suited to adapt that much. We may learn some, with various degrees of success, but we’ll never completely master them. So why would I speak Russian to someone who also speaks Dutch, when Dutch is my native language?

Phoebe: When visiting at the monastery, the service I find most difficult is Matins. It takes over an hour and half, and there is a lot of listening involved. Occasionally one of the sisters will let me stand next to her and read along. When, at Compline, there is only one sister to read the service, I sometimes get to help read it, and I find reading prayers with someone else much easier. Seeing words on paper is so much more efficient than listening to them.

Moving towards God – what’s love got to do with it?

Moving towards God.

This topic includes many subcategories. This one is on love. There will be others on prayer, ego and logismoi, and forgiveness later on.

That we move towards deification – move towards unity with God – is far more important than how we do such a thing. Obviously, some things are excluded. One generally does not reach unity with God by going on a killing spree.

Connecting to God is the most important. We would prefer a neat, organized, structured theology, resulting in a clean, defined path with obvious milestones, but the very fact that it isn’t, that it isn’t any such thing that moves to deification, that is our salvation. It sets us free to move towards that deification in any way we can, instead of frustrating ourselves in attempting to do what we can’t, in the full knowledge that God already knows and understands us.

Attempting to force feelings, emotions, and even behaviours does not work. Imitating behaviour in the parish may help in blending in more efficiently, but often does not help us in moving towards God. Those of us with high functioning autism – and especially the women – can be quite good at imitating and blending in. The downside is that autism isn’t visible, and the better we are at blending in for a time, the more sure many are that we’re just pretending the autism thing. Remember that they cannot see the amount of energy it costs us to appear even halfway normal, and the times where we cannot manage it may come as a shock to them.

Although the Orthodox Church does not, in any way, promote emotionalism, there is a certain element of emotion in prayers, even in pre-written ones. To some of us, having pre-written prayers ready to read may be a great help. The practice of the Jesus prayer may help or hinder – depending on how it is done. To some, again, the repetition may be heaven and be exactly their thing. To others, who do better with seeing things written down rather than heard or recited, it may pose problems.

Once again, a sensible priest can be a great help with this.

Orthodox theologians come in many flavours, and reading their work may result in finding some who may be of help to your specific situation. We aren’t all the same either. Long live diversity!

Each flavour is a different treatment for our spiritual injuries and illnesses. After all you may have the (spiritual) flu and I have a (spiritual) compound fracture of a leg bone. We both need treatment. But very different treatment.

To the nerds among us: there’s nothing wrong with being a nerd. If you connect to God by, for example, pondering the genetic makeup of ferns, by all means, do. Safeguard against science becoming a distraction from God, but at the same time, science can be a great tool towards God, as well, since science essentially studies and appreciates God’s creation.

 

What’s love got to do with it?

It is, of course, a gross misconception that we cannot love. Empathy and love are not the same thing, and trouble with empathy does not mean we’re incapable of love.

However, like with many things, the expression of it is often different in neurotypicals. The constant demand for love, and more importantly, the expressions of love that are standard can very quickly exceed our capacity. Not all expressions of love by neurotypicals are recognizable to us as such, but neither are ours to them.

Remember that all love comes from God. He’ll loan us the use of it when needed. After all, ALL love – neurotypical as well – originates with God. Even loving God we do with the love that comes from Him – in the end, we’re only using what is already His, in order to give Him what already belongs to Him.

To many of us, love is expressed in responsibility, integrity, reliability – not warm fuzzy feelings.  Perhaps not even in genuine divine emotion, and while that’s a pity, responsibility, integrity, and reliability are also aspects of God, and just as necessary. They are most certainly not an ‘inferior’ expression of love.

Neurotypicals, to us, often seem to lack these. This is actually not the case – they do not intend to be unreliable and untrustworthy, and in their own mind they aren’t.

Politeness requires lies. Little white lies that are still lies. The problem is that there is only one truth about any given situation or subject, but there are hundreds of ways to lie about it. Which one out of the hundreds of lies is the ‘right’ one for that situation? It makes far more sense to go with truth, and that’s where we often get into trouble.

Words, to them, simply do not carry the same weight as they do to us. They say them carelessly, forget them as soon as they have left their lips. That which, to us, sounds like a solid intention to do something, they won’t remember ten minutes after they’ve declared the intention. Dealing with neurotypicals requires a lot of patience, checking, rechecking, and checking again to make sure. A message, to them, doesn’t consist only (not even mainly) of words. They rely on those far more elusive gestures that convey it, ones that we tend to miss. They don’t, in general, do it on purpose and genuinely do not understand the pain they cause, as we do not understand the pain we cause.

We’re the same, really. Only different.

So show them you care in the way you know how. In the end, they will reap the benefits, even if they cannot recognize it as love. If you are always on time for any job for which you’ve volunteered, and see it through to the end, it may not look like love to them, but they will appreciate it. Christ only says to love our neighbour as ourselves. He didn’t put in that the neighbour gets any input in *how* we fulfill this commandment. If only He had – then the people around us would be required to act towards us with perfect clarity, consistency, and would never, ever be late.

But He didn’t. So all of us, autistic and neurotypical alike, can only love each other the best we know how.

Joe: Being honest overruling being polite I believe is where Autistic people get the reputation of lacking empathy.  I have found people tend to tell me what they think I want to hear instead of telling me what they think and know. So over the years I have come to not believe what others say. I instead wait to see what actions come after their words. Actions seem to be the goal standard for honesty while words are about trying to be polite- Thus words are useless in most settings. Little *white lies* are not so little and are LIES! Autistic’s feel the truth is always better, and work to be as tactful as possible without resorting to lying for politeness sake.