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.

 

 

 

 

 

 

 

 

 

 

A Letter to the Church

Dear Church,

Hi. I am Monica, and I am an autist.

I’m a grown-up, too, according to the calendar anyway, and have been Orthodox for about six or seven years.

Diagnosis came late, in my case, only about a year ago, so for most of the time I’ve been with you we’ve not known this. However, even before I knew this, I noticed there is a serious lack of knowledge in the Church when it comes to adults with autism.

Mind, that’s hardly surprising. The world in general has only just caught on that autistic children grow into autistic adults, and it’s not a childhood condition only. Still, we have always been there, you know, even though neither you nor we knew what was the matter. You just never saw us, because we couldn’t cope, or you saw us and thought us weird.

I write about autism, but this goes for many more people than just us autists. See, the Church is in many ways inclusive. No one can be turned away – that would be a serious ignoring of commandments. Excommunication is no doubt at times abused, but it is recognized that abuse is abuse, and it’s not supposed to work that way. It’s simply a flaw in human nature that these things happen.

Might I draw your attention to another flaw? You see – Church is inclusive in that there are no statements made regarding salvation of people with brain differences, people with mental problems, people whose IQ scores do not reach triple digits etc. Quite the opposite, it is frequently stated that the Church believes that Gods mercy most certainly extends to people such as us, and He’ll know what to do with us.

I fully agree, He certainly will. Yet by stating that God will know what to do with us, you make it abundantly clear that you do not. By stating that because of a disorder, there’s no responsibility for our salvation on our part, and God will know what to do, you basically absolve yourself of responsibility as well.

God will know, we can be sure of that and freely depend on His mercy. Yet what are you doing in the meantime? Church is for those who are already healthy in many ways, or those who can be made healthy. But I will never not be autistic.

Many of us have at least difficulties in services, and some do not manage at all. If anything is done to help, it is usually a tolerance towards the things that we, ourselves, have come up with to survive. You don’t realize how much we need predictability and reliability, and how disabling sounds and smells and touch and all the things we see can be, once we get overwhelmed by them. You may misinterpret our substandard social skills and trouble with emotions as ‘not caring’, but I assure you, we do care. We express it differently, or not at all, but given the chance, we will show you, once you know what to look for, that we do care.

Still, all that is only a minor issue, all things considered, compared to the bigger problem of our relationship with God. Yes, God will be merciful. But in using such a statement as an excuse, you rob us of the means to develop what relationship with God we can, the best way we can. I know you probably mean it as consolation – that our salvation is not hampered by our disorder. That is good. Using that consolation as an excuse yourself to not help us find ways in which we can connect to God and grow spiritually, as a way to keep things exactly as they are because to help us do that, you might need to change more than just sticking us in a quiet corner of the church building with some earmuffs on, that is saying that you don’t want to invest the effort. That you are throwing us entirely to Gods mercy, not because you have such unwavering belief in Gods mercy, but because you don’t know what to do with us.

You know what? It’s okay. It’s okay not to know what to do with us. We don’t know what to do with neurotypicals most of the time, so it’s only fair you get to be confused about us in return. But please, help us. Our way into the heart, our way towards God goes via a slightly different route – but we still want to take it.

And autist or no, disorder or no, disability or no, everyone’s life improves by growing closer to God. Not in some distant future when all of this won’t matter anymore anyway, but HERE. And NOW.

Include us. We want to grow closer to God, we want to get into the heart (as soon as we figure out what on earth that means), we just don’t always do well with the available tools, and need a hand finding those that do work. We want to be a part of the Church, and part of our churches. We need your help.

We will thank you (well, probably you will have to remind us to thank you, but we will anyway) for your patience and assistance in this matter.

Kind regards,

Monica

 

 

 

 

Passions and Passiveness

Today, I read a story told by a priest about ostrich eggs. Particularly, that the ostrich egg-shaped balls above the lamps are to remind us that, just as ostriches guard their eggs and never leave them out of sight for a moment, we must guard our prayer.

Leaving aside the prayer issue for a moment, a simple google will reveal that this is not actually true.

What ostriches do, is scrape a bit of ground, and then the females lay their eggs in the same spot – sometimes such a nest can contain 40 or so eggs as a result. A communal effort. However, to hatch the eggs must be covered. They generally cannot cover up more than 20, so most of them will not hatch. The dominant female shoves around the eggs to make sure hers, at least, will be incubated and hatch. Her competitors eggs are shoved to the side.

In a way, that is how a lot of us feel in Church. All of us gathering in one place, but the conditions do not allow all to prosper – and the weak, the eggs of the inferiors are shoved aside to make sure the dominant ones can make use of the available resources.

A far too high number of us no longer manage to attend services. Those of us that do, often find that the energy required to simply survive, means we cannot appreciate Liturgy as we would like – and perhaps ought – to.  We do not want to be shoved aside; we want to have a place in the Church.

Aside from that, our brain difference means that a lot of the time, the trends and fashions of spirituality these days do not fit very well.

We tend to be fairly placid emotionally. Professionals say that it is still not known whether autists experience less emotion, or simply display less emotion, or experience emotion and do not know what to do with it.

Possibly all three. Despite my autism, I have no idea either; how am I supposed to know what other people feel, which is requirement to compare my level of emotion to others?

But the truth is that we do not always ‘get’ emotion. Not our own, not other peoples’. Regulation of emotion can be a problem – often IS a problem, and one where average or high intelligence does not protect us. As calm as we may normally be, occasionally there may be outbursts. Or we get stuck in the emotion for an unreasonable amount of time – possibly this also relates to the earlier mentioned open files.

The temptation in Church is to call this passion, or refusal to forgive, or indulging in one’s passion.

Again, as with ego and logismoi, this is an unexplored area. It is possible that it may be both. Yes, we have trouble regulation our emotions because of a brain difference. There may be ways we can learn to better handle them. Yes, we may also, or at other times, be indulging in passions – I would certainly not want to state that autism means we do not have passions.

What I do want to argue is that care must be taken not to confuse the two. Problems with emotion regulation because of autism is not the same as indulging in passions. After all, autists’ lack of facial expression and gesticulation, or simply not feeling much at all, certainly is not ever interpreted as apatheia!

Logic would dictate that if problems with emotion regulation can sometimes team up with passions, that we do not always experience emotions very deeply may aid us in achieving apatheia – but once again, it is beyond me to speculate too much about it. For this blog, all I want to do is suggest that we very carefully examine what the origin of our problem is, and not assume that it is solely a spiritual problem before we have examined if it may also be caused by autism. It can certainly be both – but even if it is, we must be aware of that brain difference that can get in the way.

A secondary problem is that once emotion regulation is a problem, we may no longer be in any shape or position to examine ourselves, certainly not at that moment. That is why not only do WE need to be aware of what is going on with us – and that is difficult enough as it is – it is also why it is necessary that within the Church, awareness of the peculiarities of autism in all its manifestations grows. So that when something like this becomes a problem, a sensible priest will say ‘wait a second – let’s not be hasty here. Have we missed any open files that we can close right now? If not – let’s wait this out and later examine what was going on. Let’s not make assumptions just yet.’

Why?

For the simple reason that assuming a spiritual problem lays an unfair responsibility on that person who may not be having a spiritual problem at all, but something caused by a brain difference. Something caused by autism cannot be solved by repenting, confessing, and working harder. Someone who is missing a leg likewise cannot make a new leg appear by repenting for not being able to walk, confessing he has failed to walk in the past, and working harder at growing a new leg. No sane person would demand that he do that; it should not be demanded of us, either, simply because a limb difference is visible and a brain difference is not.

Also, the resulting frustration and exhaustion often doesn’t bring us one inch closer to God, Who, after all, is where we all wish to be.

 

 

Tug o’ War

Neurotypicals are infuriating. We know this. Interestingly, they frequently feel the same way about us. Although my frustration with them undoubtedly shows in these blog posts, in reality it isn’t so much a matter of blame as it is two very different brains playing Tug o’ War. Sometimes people WILL do things that are wrong. As will we. Humans have a tendency to do that. On the whole, it may prove more efficient to leave the matter of guilt aside for the moment.

In my own struggles, and what I hear from others, a word that tends to come up is ‘hypocrisy’. Hypocrisy in neurotypicals, that is. Hypocrisy in the sense of ‘play acting’ is something we engage in quite a bit, in order to survive this weird world.

I’ve Googled hypocrisy, and it turns out that what it means is ‘the contrivance of a false appearance of virtue or goodness, while concealing real character or inclinations, esp. with respect to religious and moral beliefs; hence in general sense, dissimulation, pretense, sham. It is the practice of engaging in the same behavior or activity for which one criticizes another.’

From our point of view, neurotypicals engage in this sort of behaviour with depressing frequency. We are diagnosed with a disorder where one of the symptoms is decreased ability to empathize. (It should be noted that there is a distinction. We don’t do well with empathy in the sense of taking on and reproducing the other persons feelings ourselves in order to relate to them. We don’t do well with sympathy but CAN be very compassionate. All of this is, of course, fairly generalized). The word ‘autism’ itself means ‘focussed on oneself’.

We have some limitations, and to function properly within any group, and that includes church, we need some help. We don’t do well with change, we do need a lot of predictability and clarity, and we can be completely oblivious to any unspoken communication going on around us. We’re not all that good at adapting; it’s part of the disorder.

And yet time and again all of us notice that the neurotypical people around us are reluctant to learn what autism is, do not empathize with us, are not predictable or clear enough, and expect us to keep up with their odd ways of communicating.

And expect US to adapt to THEM.

When we’re doing very well, when our head is empty, when we feel good and function as we wish, we possess a degree of flexibility. When stressed, faced with something unexpected, in situations that we do not understand and have not encountered before, whatever flexibility and ‘normalcy’ we had goes right out the window.

To us, neurotypicals lie. Almost all the time. They make promises they do not keep. They make assumptions. They say one thing and do the other, their words do not match their expression.  And they do not realize how hypocritical this makes them seem to us, because to them it is mostly normal.

Are they hypocritical? Sometimes, yes, they are. Neurotypicals too can be breathtakingly callous and careless. There can be several reasons for this.

  1. They genuinely do not care. They want things their way, and if you cannot keep up, tough luck. They’ll throw you to the wolves. These people are best avoided.
  2. They are ignorant (1). A lot of the time it is a matter of misinformation. There IS a lot of misinformation about autism around, and it can be tricky to really understand autism and its underlying problems, particularly when it comes to highfunctioning autists who have developed coping methods. Offer these people information. If they refuse the information and persist in their ignorance, leave them be. Your relationship with them is not important enough to them to educate themselves, so don’t waste precious energy trying to build one.
  3. They are ignorant (2). Many times, just like we aren’t always aware of our own behaviour patterns, neurotypicals do not realize the hypocrisy and unpredictability of their own behaviour. It is not usually such a problem to them – in fact, we live in a society that takes great PRIDE in being unpredictable and unreliable. 9-5 has become a dirty word, dependable has become ‘inflexible’ and being late is fashionable, because it shows how incredibly BUSY that person is, and how many things have to be accomplished in too little time, preventing arrival at the agreed upon time. There is very little we can do about it; if highfunctioning autism proves to be an evolutionary adaptation, we will eventually create a counterweight to this behaviour and restore balance to the Forc…eh, societies we live in. Until then – tough luck. All we can do is explain to them that to us, it IS very important, and could they please accommodate our inflexibility since they are so very flexible?
  4. They are incapable. Let’s face it – we can be incredibly difficult at times. The level of predictability and reliability we require to function optimally is so high that without a lot of effort, most neurotypicals aren’t going to get there. They also miss a lot of what they consider details, which means their information supply isn’t always sufficient. Just as stress can cause us to revert to more ‘autistic’ behaviour, stress can cause someone who is normally very predictable and reliable to drop the ball once in a while. As difficult as it is, we must make allowances for that – meaning, accept that there are legitimate reasons that may cause such things to happen. If a person is normally reliable and suddenly shows such behaviour, it may mean something is wrong with them. Inquire after their health and well-being. If it is par for the course for them to behave like this even after you have provided information and requested their support, they simply are not able or not willing to invest the effort. Minimize your efforts to build a relationship with them or even interact with them.

You will have noticed that many times I have recommended not to invest in relationships with people that show are certain behaviour. I am only just learning to follow my own advice here, and I do not mean to be rude. However, we have a limited supply of energy to devote to social interaction and limited skills in the area. We easily overexert ourselves. We must economize. Not because those people are inherently evil or wrong, but because we do not have the energy required available to us.

It is very simple home economics, really. If I have 1000 dollars a month, and I need to pay 350 dollars in rent, 150 in utilities and 150 in insurance, and I need 200 for groceries, I have 150 dollars left to spend as I wish.  There are numerous ways I can spend it, however, I am limited by the 150 dollars. I wish to buy some new clothes, but I also need to get my bike repaired. My mother has her birthday and requires a present.

I may be able to do all three if I shop at thrift stores for clothes, and give my mother a mostly home-made present – this is coping. I know what is available to me, and I make choices accordingly.

But what if I have 1000 dollars a month on average? And I am not entirely sure how much is available to me each month, and my expenditures vary? One month I have 800 dollars available, one month I may have 1200. One month my utilities are 100 dollars, the next month 175, and the months do not coordinate. The utilities bill may be 175 in the month where my income is 800. That makes budgeting a bit more difficult and calls for a careful preservation of reserves and budget cuts to compensate the ‘rich’ months with the ‘poor’ ones.

Although like all comparisons, this one goes astray at some point, it is pretty much like this with us. We’re on a tight budget. If we’ve managed our reserves well, we may at times be able to do something we’d normally not be able to do – like one might save up to go on holiday. Likewise, we are on a tight budget when it comes to energy we can devote to social interaction. The less predictability and reliability, the more energy we have to expend. That is why we do best to avoid or limit our interaction with people who are not reliable and predictable, because doing so easily causes massive budget overruns. That is not their ‘fault’ per say, but it is important for us to live within our means as much as we can. People who are willing to help us and cooperate with us increase our budget, or at least, take little out of it. With people who do not, we must make careful calculations of how much we can afford.

It’s easier said than done, however. We are constantly being pulled in all directions by the demands of the world around us, who have far more ‘funds’ in social energy available and also seem to acquire more by spending it. That being the case, it makes sense that they are occasionally baffled by our refusals.

As for the hypocrisy – at times we can provide an eye-opener to people. At times we can explain and reach a compromise, or at least, understanding. At times we will just have to suffer through it. And at times we will, for the sake of our own sanity, have to cease our interaction with people.

 

“But you don’t look autistic!”

Recognize that title?

I suppose this blog is for both audiences -autistic and neurotypical – in some ways.

My first response was ‘What I am supposed to look like, then? Green with purple tentacles maybe?’

One member of our group pointed out that we’re all supposed to be ‘mute headbangers’ all of the time.

I don’t know about anyone else, but it makes me feel both frustrated and insecure (YESS!! I’ve managed to identify the feelings!). Frustrated because of the lack of understanding, and insecure because the world is already incomprehensible, and being virtually accused of faking a disorder is even more confusing.

Even though it has slowly seeped into the collective consciousness that not all autists are Rain Man, there is still the expectation of us acting like him.

But the autism spectrum is wide and varied. Symptoms and behaviour vary wildly from one person to the next, depending on where on the spectrum one is, IQ, culture, upbringing, education, gender…and so on. I can look normal a lot of the time. I did look relatively normal for most of my life, but at the cost of severe depression and anxiety that made my life unbearable. I am a woman, of average intelligence, reasonably well-educated, so I have developed coping habits on my own. Not all of them helpful or healthy, so unlearning and relearning is part of what I do now.

Imagine, for a moment, that the brain is a box, where everything incoming is dropped. There is someone in charge of deciding what needs to go in, and what doesn’t. In most people that box is of rubber, and when too many things are dropped in, the box will strain and stretch, but unless the stress is severe, it will not break, and rest (taking out most of the content) will restore it to normal.

Not so with autism. The box is smaller to begin with, and of cardboard. Drop in too many things (and too many things GET dropped in because there is NO person in charge of selection, and if there is, he or she pops off for a coffee break with alarming frequency) and the box will tear, spilling everything.

That makes for a lot of cleanup, discarding whatever items  were in, and getting another box up and running. This takes TIME.

No, the box will never be flexible. It MAY grow a little bit bigger, but mostly we just learn to avoid situations in which a lot of stuff is dropped in all at once.

So, why do we not ‘look autistic’ – whatever that might mean?

Most likely because what people think autism should ‘look like’ is very limited and very skewed – maybe 0.01% of autists exhibit such behaviour all of the time.

Also, when the box in our head is nice and empty, it will allow the dropping in of stuff. And we can do something we find difficult. No one sees the energy it costs us, or the time before and after we need to empty out the box, but for the time being, we may act reasonably normal. Neurotypicals also have their good and bad days, times where they are fed up and tired, times where they are energetic and focused, and it’s the same for us.

The best response I’ve found to this so far is “Thank you. May I respond by saying that I think you don’t look normal?”

Another good one is ‘but I thought all autists are retarded?’

In this case, try: “Well, thank you. Please clarify whether your question means you think I am retarded, you think I do not have autism, or that you’ve failed to obtain accurate information before approaching the subject, in which case I will be happy to provide you with several outstanding books or websites where you can seek to remedy this deficit.”

Just because we have autism, it doesn’t mean we are automatically wrong about everything. Our opinions deserve to be heard just as much. And if we state that something is causing us problems, then something is causing us problems, it’s as simple as that.

Although I am never in favour of the whole ‘minority’ mentality, in this case it is true that women are confronted with these misconceptions even more than men. There are less women with a diagnosis of autism, and women as a whole are slightly better in hiding and adapting. Our problems with autism tend to turn inside more. It is quite common for women to first be treated for depression and anxiety.

So, except for collecting some witty/sharp remarks to try and get people to think about what they’ve just said, what can we do?

Again – explain. Or have someone explain. Or give people a book. Assure people that we generally know when something is difficult. And that despite our difficulties with social interaction, it IS possible to talk to us and acquire information. No, we can’t speak for every single person on the spectrum, but if anyone wants to know what autism is like, chances are that speaking to someone on the spectrum yields more results than talking to neurotypicals, even though we’re very much not all the same.

That is, after all, the reason for this blog – to find a way to function in church and grow spiritually.

I am afraid that a lot of the time we will just have to put up with ignorant remarks and disbelief. Remember that neurotypicals have this overactive secretary discarding half the incoming information, so they might actually not realize what it is that causes us problems. It is unreasonable to expect them to be able to do that. But it IS reasonable to expect them to *believe* us when we say something is a problem.

We are human. If that cannot be respected, then perhaps one day we will all have dress up in a purple tentacle suit and paint ourselves green.