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Autism: The Cost of Working

09 Apr

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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