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Autism: Independent Living

While I have not been posting on my blog site often in recent months, it isn’t as if I have stopped writing altogether (as if that would ever be possible!)

Several months ago, right after I had struggled in getting my vision testing done, I did a Google search on what to do when vision testing doesn’t work for you.  I came up with the site “Quora,” and have been answering questions on there ever since.

For example, the question from this morning was:  “Can adults with Autism live independently without support?”

So I answered it:

Some might be able to. It really depends on many factors.

I, for instance, am what would be considered to be “high-functioning.” I have an average or above IQ, am (sometimes) verbal, can read, write, completed college with honours, have held a job for months, even years at a time…

But…

I have a tendency to panic attacks, am prone to depression, struggle with time management (time seems to go too fast for me, and I move to slow in it, so working more than a couple of days a week is too much for me and I can’t live outside of that.) I get burnt out easily, and shut down when I am overwhelmed.

When I lived on my own, I could never make enough to pay all of my bills. I wasn’t out spending money on things I didn’t need, but still ended up frequently short on money. Not enough for rent, hydro, gas, other bills. I couldn’t do it.

Also I struggle with abstracts – and thoughts of the future are pretty much entirely abstract. For example, I moved across the country, after completing my Early Childhood Education (with honours), to open a home daycare in a community that needed daycare.

My view was that I was allowed to care for 7 children, including my own. (5 under 5.) So even if I only filled those 4 spaces left for young children, I would have no trouble paying my bills. I took out a loan, moved across the country (fully expecting I would have no trouble flying home a couple of times a year to see my family) and opened my daycare.

What I could not see was that most of the care I would provide would be part time. Those 4 spaces would be filled by 10 children – and frequently I would be juggling and having to communicate to the parents in order to never go over 4 children at a time. Communication was hard. Getting enough income to pay the bills was very hard. Working full time to try and make enough to live was exhausting.

I couldn’t continue long term, ended up NOT being able to pay my bills, struggling to get money to eat, having my gas shut off, defaulting on my loans, and having to claim bankruptcy. NOT because I was out spending money on things I didn’t need, but because no matter how hard I tried (and 20 years later, this is still very true) I could not make enough to deal with everything.

In fact, trying to deal with everything a home requires to run (even excluding money – which had I been diagnosed, and been put on disability, I might have been able to manage) is so overwhelming that my brain shuts down (like an overloaded circuit breaker.)

Running a daycare was not the only factor in my inability to live independently. I also tried working in construction, and working in a small motel. Even in jobs I really liked, and could work at part time, I would become so panicky I couldn’t keep going. I am now at home on disability, as that issue became worse the more I tried, not better.

I am married now, and my husband works and takes care of the bills. He also helps me to socialize, and does the majority of the driving (even though I do drive, the unpredictability of other drivers and pedestrians causes me to panic and become exhausted too fast to actually get much done once I reach my destination.)

Maybe if I had a good level of disability payment support, and lived in a place where I was walking distance to most things I needed (groceries, church, etc.) and was on a very good bus route to anywhere else I might need to get to, I might be able to live independently. As it is, even as a high functioning adult with Autism/Aspergers, I can’t do it.

Easter 2015

 

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Autism: Me Trying to Live Better

I don’t tend to do New Years resolutions. For one thing, January doesn’t feel like the start of anything for me. From the time I was very young I have considered a year to go from September through August – and when I say something happened ‘last year’ that is often the time frame I am going by.

For another thing, I don’t tend to stick to things long enough to say, “this year I am going to…” and mean it. I get burnt out too fast. I get overwhelmed too fast. I quickly fail. Again and again I fail. I really don’t need anything more to be considered failures for me as I carry them all around with me, and they weigh me down, and make it harder and harder to do anything well (or even have the energy to try.)

So I don’t make New Year’s resolutions, and this year is no exception.

Only I have been thinking about this a lot.

I am a compulsive person. I need routine. I need to know what is expected of me – even if I am the one putting those expectations on myself. I don’t do well with open ended suggestions, or time frames, or flexible commitments (what does that even mean?!)

Because of this I tend to push myself way beyond what is good for me (though I do realize it isn’t much in terms of what other people do) and I… make a mess of things. I push myself, and push myself to keep these commitments – and while I am keeping them, I am failing.

Take this blog, for instance (and for instance here means this is what I am talking about.)

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In the beginning I was writing six days a week. My decision – not based on what anyone else asked for – yet a commitment just the same. I pushed myself to burn out, and finally decided to go down to three days a week.

That was more manageable (after all, most of my posts take less than 20 minutes to write – and it isn’t like I am doing much else) and yet I was still burning out. I have been writing now for 2.5 years, and for the last 7 or 8 months I have been pushing, panicking, overwhelmed trying to schedule three posts for every week.

And why???

I keep asking myself that. It isn’t like someone else told me I had to write three posts a week. It isn’t like missing some here and there would have been the end of the world. But I am compulsive, and I couldn’t not write.

Yet I have been painfully aware that because I am pushing beyond what I can handle, I have noticed that my posts (at times) have been suffering. It isn’t even so much that there is a badly written post here and there – that could happen, and I know it does, but… It is that when I am overwhelmed – whenever I am overwhelmed, I tend to become negative and start venting.

Venting.

It isn’t a good thing.

The purpose I had for writing this blog was to say “Finally I have been diagnosed – now what?” I expected things to get better. I expected maybe that others would understand my struggles more, and that I would understand my struggles more, and that because of that, things would get better.

But I still struggle badly with depression and anxiety – even though I am no longer working. I still struggle with sensory issues, and burnout, and irritation. I still fall into moments of despair.

And I don’t think that it is good for me to be writing so much that I turn this blog into a journal instead. I am trying to remind myself that not everything needs to be shared in order to be honest – I really struggle with over sharing; I have for a long time.

So though it is not like me – and I am not even sure I can function this way – I have decided that it is best to only write my blog when I have something to say. No schedule. No pressure. No venting.

So not like me – yet so what I need, I think.

And this decision, I have to remind myself, is a good thing. This is not failure, this is making the right decisions for me. This is making the right decisions for my family.

This is me trying to live better.

 

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Autism: Life Speed

I have been reading a book that was recommended by a friend. Though I am only about 1/3rd of the way through, and have no idea where it is going, it has brought me to think a lot.

In the book a man is given an unknown substance which causes his body to slow down. To really slow down. Something like four years passing feels like hours to him, and he is unable to register much of what is happening in the world around him.

When he began to slow down, people sounded like they were talking too fast, and their words were all strung together. People or objects would move around him in a blur. As it progressed, he couldn’t hear the words at all, and much would happen without him knowing it.

It just got me to thinking about how I have said on several occasions that the world moves too fast for me. I can’t keep up, and am easily burnt out by what is nowhere near the typical pace of people in the world around me.

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Obviously my challenge isn’t nearly as severe as the man in the story, but…

On what feels like an exceptionally busy day to me I might do 2-3 loads of laundry, vacuum and wash the floors on one level of my house (and not even all of that since one room is storage and one room has carpet that doesn’t get washed so frequently) and clean 1.5 bathrooms – and really, since I generally wash the shower when I am in there the night before, I really only clean 2 half bathrooms.

I will rinse the dishes and load them in the dishwasher, feed, take outside, and maybe walk my dogs (they won’t go out if the weather is bad.) Visit one person for 2 hours, and possibly make supper for my family, which I do 3 days a week.

That is an exceptionally busy day, and even writing it seems overwhelming to me.

I can handle a day like this maybe once every other week, and even then I often struggle to push myself through it. Afterwards I will crash for days.

The book got me to wondering if perhaps some people (like me) actually do experience the world at a different speed – and maybe that is why we are incapable of keeping up (though people who don’t understand this consider us lazy, and are certain that if we put in the effort we would not only be able to keep up, but get used to it – so not true, for me.)

The truth is that life moves too fast for me.

  • The grass grows too fast.
  • The years pass too fast.
  • The night is over too fast.
  • The house needs cleaned too often.
  • The renovations need done too often.
  • Food needs to be bought and consumed too frequently.
  • Life is just… too much – all of the time!

I am never ready for what is coming. Though I don’t work anymore, I am still overwhelmed most of the time – and when I did work, even part time, I was completely burnt out right from the beginning.

 

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Autism: Poor Time Management

While I was working I fully believed that I was good at time management. I would arrive at worked 15-30 minutes before my shift… one time I was only 10 minutes early, and my coworkers were worried that something happened to me as I was never that ‘late’ (even though pretty much everyone I worked with would get there the minute they started, and one was nearly always 5 minutes late.)

I would panic before work, and that panic would grow as the time drew near, so I would go early. Besides, I needed that time to calm down before I had to start. I needed that time to transition.

I would get to work with a list in my head of things that I would like to accomplish on my shift. When I got there, I would add in anything extra that still might have to be done (like if there were rooms that hadn’t yet been cleaned, or a lot of laundry still to be done – I worked at a motel; front desk, but we did it all.)

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Unless there was something unusual – like a snowstorm or an accident that closed the highway in both directions thereby requiring me to be at the front desk helping guests the entire shift – I would get my work done. I knew just when the wash would be done and needed to be switched over, and the exact time I should check the hot tub, add chemicals… I knew how long everything took, and most of the time would be exact in getting it done. That was unusual among my coworkers.

In my life I only ever forgot one appointment – a speech therapy appointment that I had made for my middle ‘foster’ daughter that occurred within days of getting back from a week long trip to the children’s hospital in Vancouver BC for assessments on my youngest ‘foster’ daughter (a week where I was alone with my four children, taking buses in a city I didn’t know well, and wasn’t sleeping as my middle two couldn’t sleep in strange environments…) I felt horrible. I was sleep deprived, and not thinking well, and not functioning well, and…

It wasn’t at all like me.

However, the older I get the more I realize how much that level of time management is bad for my mental health. It causes extreme anxiety to focus for such long periods of time. It causes exhaustion and burnout to live at such a pace (even though I was only working part time.) I can’t hold on for very long.

And perhaps that is a lot of the reason I have not been able to hold on to a job, or continue with school, or do anything lasting any real length of time without it ending in failure.

Time moves too fast for me.

One short activity in a day takes all of my energy and focus and leaves me exhausted for days after. I require a LOT of breaks (which is not something freely offered, or which I would feel comfortable asking for at a job – they are paying me for that time after all.)

Without a lot of breaks and time for thinking, my mental health and functioning declines very quickly.

On a good day an hour or two of work or activity is about all I can handle. That is a full day for me, and even then I need days (DAYS!) off in between to rest. If I do more than that and I crash – often for months after. And that is when I am doing well – which in itself is a rare thing.

Looking at these facts I would then have to admit either that I am not in fact good at time management or that at the very least being good at time management is too hard on me.

 

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Autism: Rather Than Feed The Greed

After years of consideration, and many days spent going back and forth between being absolutely sure this is what I wanted, and fearful that it would only add to the number of experiences I had failed at, I finally gave in and bought my pressure cooker.

With research, I chose the smaller model – despite only about $2 difference for the larger capacity one which would hold 7 quarts more! After all, it would be used mainly for myself and my small dogs – and I would likely be overwhelmed doing large batches. Plus, aside from holding a few less jars at a time, the determining factor came down to whether or not I wanted to use it to hot water bath can quart jars, since that wasn’t an option in the smaller size.

While my husband and son might share some things if I canned them – cherries, pie fillings, etc. It is highly unlikely we would want to open a quart of anything at one time. We just don’t eat a lot of the same things.

Besides, the larger model would take a lot more power, and a lot more time to operate – which in the long run would end up being a lot more than the original $2 difference.

Even then I wasn’t sure. I have failed at so many things… not so much because I was really bad at it to begin with (or any worse than any other beginner) but more because the longer I try to do something, the more guaranteed it is that my confidence and energy will give out on me.

Short projects of a few days to a couple of weeks, with a definite end in sight (and no further obligation after) are much more likely to be met with excitement and success than something I have to do week after week for long periods of time – and anything without a clear end is pretty much doomed to failure from the beginning.

But there was still more to the decision than a matter of failure. I am not one to just spend money – I know that since my bankruptcy pre-marriage, many people still respond to me as if I were bad with money. Yet I have never been a big spender, and every purchase is given much research and consideration both before and after the purchase. My challenge isn’t that I have a problem with spending, but much more that on my own, I am not capable of making enough money to live on (no matter how thrifty I am.)

Now, it may be somewhat different with items I get from the thrift store – especially during bag sale – but I still have to think about everything I bring into my home (for clutter weights me down, and is a constant source of stress for me.)

And whatever I choose to do, and whatever I choose to buy, it must be in line with who I am.

Since the capitalist society in which I find myself appears to be built on encouraging and measuring success on greed – which lies, and cheats, and allows people who haven’t the money to pay for food or medical treatment to die – is the complete opposite of what I believe, I really must make my choices based on something that doesn’t feed that greed.

So while I am enjoying (if it can be called that) the ability in this society to earn gift cards towards ‘something for myself’ I still feel an obligation to spend those gift cards wisely.

Now what is ‘true to me’ is that I feel we’ve drifted far from what is important, and to live well, I need to get back to that – back to the basics. And in the end it was that which made the decision. The money and time spent now learning to grow and preserve my own food can only help me to live in a way that is good, and honest, and true.

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Autism: The Trouble With Sharing

It was my own fault. I saw a question, and I had to answer it. And it isn’t like the people who read it know me – not really know me. They are an online group. So if I don’t follow through, it isn’t like they will come up to me and say, “liar.”

The question? What are your plans for today. An easy enough question. I had a list in my head. I nearly always wake up with a list. It helps me to organize my day, and do something productive.

Today I thought I would:

  • clean the bathrooms
  • wash my husbands clothes
  • vacuum the floors
  • write my blog
  • practice my Spanish
  • practice my keyboard
  • possibly do some shopping since due to car trouble earlier in the week, we now have two vehicles insured for a few months (my husband couldn’t get less than 3 months insurance, or at least, it would have cost more for less time, or something like that.)

It was a good list, I though. A good amount to intend to do – however, the shopping thing… even thinking of going shopping floods me with anxiety, and I am burnt out before I even begin. I know that if I go shopping, I will perseverate on Pinterest or something for the rest of the day, so I have to plan it well.

And then I wrote out my list for ‘all the world to see,’ and it was commented that “wow, you have a lot of energy.” (or not!) That was my list. The blog, Spanish, and keyboard are the easy parts – they require thought, not energy, and not a whole lot of time. Only once I am anxious, it is very hard for me to focus, function, think…

So I wrote my list, and became anxious (now I have to do these things, since I wrote them down. Otherwise it is a lie, right?) And that anxiety left me fixated on Facebook of all places – I go to Facebook for news, and groups, and anything beyond that mostly just annoys me. Facebook is ‘too much’ most of the time. And I was fixated for nearly 3 hours before I could get myself to do anything.

I pushed myself to get up and start the laundry. That had to be done at the very least. I always do my husband’s laundry on Saturdays. The routine helps me to keep up with it – and I know that I struggle to get anything done while he is home on Sundays and Mondays – so Saturdays it is.

The laundry was in, and I was up. I made my lunch, and mixed up some gluten free banana bread (gluten free – that was the topic I had in mind for today, but…) This is the first time I tried making it gluten free, and it is baking as I type. I hope it turns out okay.

Of course, then I sat down again, and my anxiety grew. What was I thinking making a list so long? Only it didn’t seem so long before I wrote it out, because until then, it was only an idea. Now??? How can I possibly get through it all?

I picked up my tablet, and forced myself to practice my Spanish. Ten minutes, or not even – and I do like it. I do. But now I have to do these things, it makes it so much harder for me to actually do them.

With my heart racing, I prayed for calm enough to focus as I started writing this blog. But my mind is pulling me to the book sitting beside me, and I have a strong feeling I won’t get much else accomplished today.

And once again I wish I was more like the little girl I used to be – the one who had so much going on inside, but was mute to the world 99 percent of the time. If no one knew what I was thinking, they would have no cause to doubt me. I think I was wiser as a child, before I tried so hard to be ‘normal.’

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Autism: Not Detail Oriented

It used to be that I believed I was a detail oriented person. I would have said it about myself, and trusted it as fact. However, the longer I go about this life, the more I learn that this is not true.

I am a perfectionist. Is that vanity? I hate to be wrong, or to do wrong, or to ‘mess up.’ It fills me with shame, and leaves me fearful of trying again. The thing is, I know that I am not perfect. I know that I make mistakes even more than most people. I know that whatever I do, most people will do it better. Yet I still strive for perfection, and I am still upset with myself when I don’t reach it (which is always.) However, because of this, I am careful. So very careful about the things I do and say.

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Perhaps because of this perfectionist ‘dream’, I am also very compulsive. Whether I am given a list of tasks to do, or make up the routine myself, I will repeat the steps over and over in my head – even after I have made them a habit. I will do my absolute best to do those tasks well, and to never forget any part of them. I will push myself even to the point where I will not take a break to eat, or drink, or even hardly breathe. At the end, I will be shaking, and find it hard to stand up, or think at all – but at least I will have completed the task that was set for me.

For those reasons, I was a good employee. Those I worked for liked me, and felt I did the job well. The cost, which they didn’t see, was to myself – to my emotional, mental, and physical health. I would have said my job was hard, and required me to ‘run all the time.’ The thing was, however, that those I worked with – those on the same job as me – sat for quite a lot of their shift (and were therefore calm, and happy with the job.) When I tried that, I was filled with shame as if I were being dishonest, and then pushed myself harder – until I burnt out. I couldn’t work any other way.

So I worked hard, and I pushed myself hard – and while I was working, I did the job well, and hardly ever left anything undone (so much so that my coworkers often complained that I didn’t leave anything for them to do on their shifts.) I did it well, and I burnt myself out, and filled myself with fear and anxiety over missing something, or failing – and I thought it meant that I was detail oriented.

But all it meant was that I was obsessive, compulsive, and perfectionistic – and it wasn’t a good thing. Not for me. Not for others. It set a standard that none of us could reach for long, and since I couldn’t let go, it cost me a lot.

Of course I noticed the mistakes I made – putting down the wrong date (that happens often… what month is it again? What year?) or being called out of my routine, and missing something because of that. But that only meant I needed to try harder. Still detail oriented – just with too much on my mind. It made it hard to think.

After writing this blog for – has it been ten months already!? – I can no longer make the claim that I am a detail oriented person. I write, and I think about how to say what I want to be said, and I even pray over it. I check my spelling, and I consider the pictures and tags (I know I am not good with the tags,) and then I copy and paste, and schedule…

And every once in a while, I will re-read one of my posts… and just about every time I found that I have made a mistake – often writing in the wrong word (read for write, for instance – or the wrong form of their/there/they’re… even though I know the difference, and get caught up/confused whenever someone else uses those words wrong) and then I know… I know!!! That detail oriented isn’t the right label for me.

 

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Autism: The Cost of Working

It often happens this way. I have been very anxious for the past week, due to appointments that I had earlier in the week. While I should be able to find a sense of calm now that those appointments are over, instead I struggle from the burnout of having experienced them in the first place.

I am glad that I went – especially for the first one – as these are appointments that are there to put supports in place for the future. One for my son, and the other for myself. These are things that I want… I think… but that doesn’t lessen the exhaustion that I feel now having come through them.

Motivation this week has been a real struggle. While I am still walking with my son, reading my Bible, practicing my Spanish and keyboard, writing my blog, journal… in short, completing my daily routine, I am also having a really hard time getting through even this.

So when I consider the one appointment – the one that was there to get me support to help find employment – I wonder if I will be able to follow through. The thing is, while I am grateful to have been accepted into the program, I have not actually had much trouble in finding work. I could go back to my old job, if it came to that.

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The trouble is that while I can find work, make it through the interview, even do the work well – what I can’t do is keep it up. I get so anxious when I am working, and my energy is extremely low to begin with, that I burn out too fast. It doesn’t take me a year, or several years, or even full time work (let alone overtime) to reach the burnout stage.

Depending on whether I am working alone, or with other people (and how many other people), whether the routine/schedule is the same day to day, or I am on shift work, whether it is a physically or even mentally demanding job, I will burn out within a week to a few months. I always do.

And if they do find me a job that seems like a good fit for me, and then I become so anxious or so exhausted (or both as is usual) that I can’t keep going… well, each failure becomes harder on me than the one before. I am just not sure I can do it again – especially so soon.

Then there are the issues around disability – for I did qualify for disability, but as it is federal rather than provincial, the rules are quite different. For one thing, the payments are about 2/3rds of what I would have gotten on provincial disability (which I disqualified for since my husband works – really this shouldn’t be considered on the same level as income assistance or welfare – people shouldn’t be punished for being disabled.)

Even though I get so much less on federal disability, I am also not allowed to earn even close to the same amount of income above the disability before getting cut off. Now I am not saying that I would rather be on disability than work, but with these rules in place, in order to come to a more financially secure place in my life, I would have to work quite a bit just to break even. It isn’t like I could start small, and work on my tolerance, for even a small amount of work would cost me my disability.

I am sure that I am not expressing this well.

My fear, that has come out of this appointment, is that they will find me work – but that it won’t help. I will be burned out, falling apart, and severely anxious (as I have always ended up when working) and have nothing to show for it – and after all of that effort and pain, I will fail anyway.

I am thinking that, for now at least, I should really just stay home and work towards healing. But how do I tell people that?

 

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