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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: 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: Much As I Can Handle

For anyone who would have seen me the past few weeks, I believe the general opinion was that I was healthy enough to work. Day after day from early in the morning until later in the afternoon, I was out in the garden, with my girls. I was turning the soil, and pulling the weeds, grass, rocks, and lots of June bugs out of the ground, trying to get the gardens ready for planting.

The work was steady, and repetitive, and took a lot of work – though not a huge amount of focus.

At the end of each day, I was dirty, sore, and exhausted. Yet each morning, as long as the weather cooperated (and to a smaller degree when it didn’t) there I was. Working.

There was this time pressure to complete, as spring was coming fast. Well… it was spring, but… the last frost date, or whatever. We have a short growing season, and this year even shorter as it was a longer winter than normal. So things need to be planted ‘on time’, or so I have read.

Though I study the material, and try every year, I really don’t know what I am doing in the garden. But this task was pretty simple. Dig and flip the soil, crumble it in my hands, remove all weeds, grass, rocks, and bugs that look like they might eat my plants, throw the soil, worms, and ground beetles into the ‘good’ pile.

People walked by and commented, as they do. I tried to reply appropriately, and went back to work.

My ‘girls’ chased anyone passing, and ran through the garden, and very much enjoyed themselves. I gave them the attention they needed, watched for eagles (that live just down the road), fed them on their schedules, ate on mine, and went back to work.

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Unusual to me, I was somewhat thankful for the rainy days, for then we had to stay inside. Perhaps I should have rested then, but there was so much to do inside in preparation for my mother’s arrival, that I was nearly as busy inside as out.

For three weeks I worked hard, and anyone who saw me would likely think I was well enough to get an actual job.

Though it was something I really wanted to do, however, I started to crash at about the 1.5 week mark. By 2.5 weeks, I was really pushing myself. Those last two days I almost didn’t make it through – and had it needed more work, I couldn’t have done it.

Three weeks for a job I liked, that I could do at home with my girls, and where I was mostly alone doing something for myself. Three weeks, and I crashed.

And there lies the problem of seeking another job at this point in my life. I would go into the interview having to prove to the manager that I was the best person for the job (and in the beginning, I just might be.) I would take the job with everyone hoping, and even expecting, that this would last. It would almost be like I was telling them they could count on me – for what else are we really saying when we agree to take on a job?

Yet I would know it was a lie. I would give that job everything, because I can’t give less (for I am always concerned about what people think of me) and I would try really hard to keep going. But, as has been true pretty much my entire life, and certainly from the start of high school at not quite 14 years old, the crash would come.

If it was a particularly good time in my life, and the job was one that suited me well, I might (if not asked for too much change, or too much time, or too much…) last 5 or 6 months before I fell apart. And then, if it was still something I was enjoying, and I was getting along with the people I worked with and for, I might be able to hide the fact that I was crashing from the people at work for a few months more.

At that point, no amount of effort on my part – or incentive from outside – would prevent me from falling apart even there. Meanwhile, the effort would have taken a strong toll on my marriage, my home, and my emotional state.

And that is for a good job, that I want to succeed at.

If it were any less, I would still give my all (for I can’t give less) but I would likely not last a week before I was really struggling, and in less than a month, everyone else would know it.

So here I am, doing the very best I can to take care of my home (which is of top importance for me) and after three weeks of working hard, I am crashing. Thankfully I am at home. This is my work right now. Thankfully, though I could lose the work, and have everything come crashing down around me (it happens) a few days, or even a few months of ‘crashing’ won’t be viewed as a public failure. And that is about as much as I can handle.

Yet I always feel pressure from outside that I should/could be doing more.

 

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Autism: Really Wanted the Help

It has been four months since my last appointment, and is another two months until my next. From the struggles I am having with it, however, I am beginning to understand that going to see her does not in fact help. I really hoped it would.

When I first went to her, I was full of anxiety… panic even. But she acknowledged that she did believe I had Asperger’s, and gave me the diagnosis. She told me she would help. She heard me express my past troubles with medication, and decided to try something else, and start on a very low dose. It was hard to go and talk to her. It was hard to talk. But I was thankful that someone had finally heard me.

Then at my next appointment, she heard me again – and though I didn’t ask for it, and though it terrified me, she took me off of work and put me on medical leave. It was something that had to be done, and if she hadn’t seen that, I would have fallen apart at work and lost my job anyway. It could have been so much worse.

I needed to not work. In fact, I really needed to not work all of my adult life – and school in my teen years? That was bad, too. I needed to not be working, and really if they think about it, people should be amazed that I held on as long and as well as I did (even if it looked like failure to them) instead of being disappointed that I couldn’t keep going forever. But they don’t see inside of me, and none of them knew – not really. Hardly at all.

So it was good that I went to her. Because I did, I was finally seen. I was diagnosed. The multiple challenges were put into words so maybe people could know, even if they couldn’t understand, that the very act of living is often overwhelming for me – and working on top of that? Impossible to keep up.

At least they could know.

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And she referred me to my therapist – and though I believe I am very frustrating to her (since she gives all kinds of good ideas – which I have already tried, and found not to work; or hadn’t tried, but can’t seem to figure out how to work with them, or…) I really do believe she not only hears me, but remembers me, and cares. I also think that though she is not Autistic herself, she really understands what she is talking about.

I don’t visit my therapist anymore – but that is because she saw how anxious I was, how hard it was to talk, and how much better I am at communicating through writing – so I email her instead. See? She understands.

The doctor tried. But she doesn’t understand Autism – so she tried to treat with medication. I did very much hope that she would find something that would work (and not make me sick) but the more she tried, the more obvious it became to all of us that my body just can’t handle such things.

Even then she said she would continue to help me, though I could not take medication – but she seemed to be lost on how to do that.

My next appointments became harder and harder – and in fact, she tried to stop them altogether. “I don’t think we need to book another appointment,” she said, “if you are having trouble, you can call.”

Ummm – no I can’t! Phones, remember?

So I told her I wouldn’t call – not even if I needed to, and she booked the next appointment six months later. And each appointment became harder.

At the last, her suggestion was that I find work… it didn’t make sense – she took me off work because my anxiety was so severe. I did get diagnosed. My assessment and paperwork was enough to get me long term disability without question, and several other types of support (which I haven’t figured out how to use yet – I think I need support to figure out how to use the supports, but I don’t have that.)

Yet nothing has reduced my anxiety, save not having to work (and even then I struggle a whole lot of the time – as you might get from reading my blog.) So how can her solution to my struggles be to take me away from the only thing that has helped?

And the truth is, she doesn’t seem to remember me. She doesn’t seem to know me. She doesn’t understand.

So for months I have been upset about that suggestion, and the fact that she dismissed the positive things I was doing in my life (like learning Spanish, playing the keyboard, studying Latin and Grammar, and writing my blog, and…) For months I struggled even to get back into several of the things she ignored, and some I have never been able to return to. For months after that visit, I struggled with really bad depression.

To be honest, that appointment made me suicidal for a while – I mean, if nothing I do that makes me feel good has any value – and the only way to make my life worthwhile would be to find work, which caused me such anxiety that I don’t want to live – what is the point of living?

It took me a long time to settle back into a good routine after that. Is it any wonder I am terrified to return for my next appointment?

I think next time, when she says she doesn’t need to book another appointment, I will agree – and really hope that isn’t reflected as me refusing help, so I lose the few supports I do have. I mean, I really, really did want her to be able to help me.

 

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