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Autism: Employment Barriers

For six months I have been struggling with the words spoken to me by my psychiatrist during my last appointment, “So you can work, but you don’t want to,” she summarized after I was explaining that I had tried working and going to school so many times in the past twenty years, and failed all along. Her summary was completely off, but that is what happens with me: I feel like I am being completely clear – and when people summarize them for me, the meaning is all twisted and wrong. I don’t know what I am doing or saying to have my words interpreted so poorly – or what I can do to communicate better.

So I wrote, and wrote, and wrote again trying to express my struggles to her so that she would not misunderstand me the next time. However, as is true for me, even my most condensed versions were pages and pages long. So I tried again. And again. And again. Until finally I was able to cut it down to little more than a blog page in length. What was left was this:

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Can’t work, or won’t work? These are the most pressing barriers standing between me and being able to succeed at employment.

  • Severe anxiety – I am told this has to be healed before I try to work again.
  • Easily overwhelmed – prone to ‘crashing’ that can last several weeks or months after just a few days of work, or meltdowns/shutdowns that I cannot avoid.
  • Multiple sensory issues – really, I need to be home, as I can’t avoid these in public.
  • Very low energy – can’t do active jobs (stocking shelves, housekeeping, construction, landscaping, etc.) as I struggle for weeks or months with very low energy, which gets worse the busier I am supposed to be.
  • Emotionally draining – being near people (even not talking to them) leaves me drained after a couple of hours, and lasts days to recuperate.
  • Arthritis – back pain, joint pain in fingers, hands, and toes that gets worse with use – cannot do physical or repetitive jobs, stand long periods of time, sit long periods of time, etc.
  • Physical issues – digestive issues, allergies, stomach upsets, etc that are all made unbearable when away from home. I can’t use public bathrooms (have nightmares) and this makes me sick when away, too. Any work I find would have to be at home.
  • ‘Exposure therapy’ doesn’t work for me. The more I have these experiences, the harder they are for me to bear.
  • Social anxiety – I am paralyzed trying to work with other people around, and must work alone (also no phones, no problem solving, no customer service, no criticism, no handling complaints… I can’t.)
  • Further education is out of the question. I went to college twice, and (through extreme stress, and only being able to get through due to a definite short term end date) did well, but the resulting jobs were overwhelming for me. I can’t seem to apply my knowledge out of the classroom. We can’t pay for more schooling for me – and again, leaving home to go to school includes all of the above issues.
  • Multiple sensitivities – from smells of people’s food in the lunch room, to the smell of smoke on a person, or chemicals that leave my nose bleeding, my hands sore, unable to function… There is much I cannot work around – and such are in each workplace.
  • Sleep issues – I get sick if I try to do things in the evening/overnight. It takes a long routine (8pm to 8am) for me to get the sleep I need. If this is interrupted, I cannot function. Also, there are many nights I struggle to sleep anyway, and then can’t function the next day. I am immediately affected by lack of sleep.
  • Daily Routine. I can’t do changing shifts. I can’t work outside of my routine without getting sick/not being able to function. I can’t just change rules, make exceptions, be flexible…
  • Physical routine. Not so much routine, but I have to eat meals on my schedule, and snacks as I need them, or I ‘crash’ and can’t function. Need to use the bathroom at a moment’s notice, too, so can’t be tied to anything I can’t move away from – and causes panic, sickness, frequent meltdowns when away from home.
  • Multiple triggers – especially when I am in public. These are caused by dates, attitudes, certain personalities, smells, sounds… any reminders of traumatic events and failures – and I have a lot!

It isn’t that I won’t work. If all of these could be addressed, and a suitable job could be found for me (which would pretty much have to be something I could do at home on my own schedule) I would do it – but I am told I am asking too much, and won’t be able to find work like that. Anything less is a setup to failure. I can’t go through that again.

Being told I should go to work when these things aren’t addressed (and some are such a part of me, they won’t be healed, but must be worked around) is like telling me I have to return to a severely abusive relationship – and it terrifies me. After my last appointment, it took me months to be able to get past the depression, and back to the activities that were adding value to my life (but seemed to be dismissed in favour of finding a job.)

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Autism: What Was I Thinking?

I walked past the house, and 4 men were on the roof, happily working away. I looked to see if they are attached to safety lines. It was hard to tell. They were wearing harnesses, but what I saw could have been ropes, or could have been extension cords. I don’t know.

Fear filled my gut. I could never work so high.

I would probably fall off just because of my fear of falling off, and I would have stressed the men out worrying about them.

What was I thinking, going into construction?

It seemed like such a good idea at the time. I would learn how to renovate my own house, the pay is good – at least, a whole lot better than my motel job. I would have winters off, and could afford to visit my mom, maybe… I had my reasons, and they sounded good.

People were encouraging, and thought I would do well at this. Some were with me on our missions trip to Mexico, and thought I was a good worker.

“Go for it!” They told me.

While in school, my grades were top of the class. Even the guys came up to me to help them.

By the time we started building, however, I knew it was a bad fit for me.

When the teacher said, “Do this,” the others in the class jumped in to try, while I held back. “He hasn’t shown us how,” I would tell them. “I don’t know what I am doing.”

I couldn’t learn that way. I have to watch. I have to know – to really feel I KNOW how to do it, before I even try. Even then, if others were watching…

And then there were the safety videos.

I understand their purpose – usually a construction class is a group full of young men who feel invincible. Not me. I could go to a job sight, and see everything that could go wrong.

So they would climb the walls, and I would cringe. They would walk the floor joists, and I would visualize them falling through.

Too much stress – for them, and for me.

Too much fear – the heights, the tools, the mistakes…

Too physical – I could not lift a 75lbs sheet of plywood once let alone again and again over an eight hour shift. I haven’t the energy to be on the move for 30 minutes most days.

What was I thinking? I guess since people had told me if you push yourself enough, you can do anything… I believed them. Maybe I believed them. I had to.

But that was wrong. Don’t try to be someone you are not. That is what they should have said, maybe.

But who am I?

 
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Posted by on November 11, 2015 in Autism: Jobs and Careers

 

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Inside This Room

The majority of the first three years of my marriage were spent in this room, as well as a large portion of the five years following. It was a place of laughter, happiness, and play. I don’t think it was a favourite room those years so much as the best one suited for its purpose.

We purchased this house for my daycare. The finished basement, with its own access, was as large as the upper level. It was a really good size for the seven children I would have in my home each day. We had a room for stories and naps, a room for eating, crafts, and baking, a laundry room, bathroom, and this – the play room.

I have spent many contented hours in this room, tending to the needs of the children in my care. Later, it was my own foster children who played in this room. I enjoyed those years, and sometimes… sometimes I ache to go back to those days.

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Today the house is quiet. It has been for years. While in my autism, I struggle with noise, I also miss it some days. It was my job. It was my identity, and I was good at it – maybe… I think.

Some days, I think I could go back to that life – although my son now calls the nap room his own. The food room has become a place of storage. The outside stairway to the basement has been overtaken by spiders. Our front yard play area has been given over to our pets. The house is too big for the three of us – but it has been filled with stuff.

I miss having children in my life.

After losing my children, how could I ask parents to trust me to care for theirs? I know that technically they weren’t my children… that is what the ministry says. My therapist says it wasn’t my failure – it is a broken system, and there was no way I could have won. She worked in it for years. She knows.

The ministry even encouraged me to go back to babysitting after they took my kids. How could they say I couldn’t have my three – yet encourage me to take on others?

I never did have the confidence to get my daycare license back after that, but I did babysit for a while. The children were happy. The parents were pleased with the care I gave to their little ones. But as they left one by one – because they were laid off… because they had shift work and got a nanny instead… because they were taking courses online at home and didn’t need me anymore – I did not seek out more.

I moved on to other work, and never got my confidence back in working with the children… but I miss them.

My adult son lives in the basement now. He likes the quiet. He doesn’t like children – they are loud and unpredictable, he says. He doesn’t want me to babysit, and I don’t want him to leave.

It was a dream, but that dream is gone.

I spend a lot of my time in this room, these days. It is very quiet. My dog likes to visit me in here; sometimes my son does as well.

These days the room is full of plants, and books. I spend a lot of my time writing in here. I like to write. The house is too big for me – but I like this room. I would put a wood stove in here. I might change the carpets. I like this room, though; it is a good room for remembering.

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Autism: The Benefits of Home

Yesterday was a sunny day – the first we’ve had in about a week. It was so nice. My son and I were home alone, so he came upstairs to talk to me quite a bit (he hides in his room when we have company.) I got so much done, and I went around the house cleaning, singing, and just generally feeling happy.

I guess that you could say I am ‘solar powered.’ When there is sun, I almost always have energy. It is rare for me to feel good on darker days. In the winter I have to use a special light just to get through those months without sinking into a full depression. But when the sun is out, it takes a lot to get me down.

While I was going around the house singing, and cleaning, and talking with my son, the phone rang. Most days I will hear the phone, immediately go into a panic, and decide not to answer, but I was feeling good yesterday.

The phone still scared me, and I responded with my usual, “Oh no!” but then I answered it. It was my boss calling to see if I would be willing to go back to work for them. I am on medical leave at this time due to my severe anxiety and social anxiety issues. I left suddenly right at the beginning of summer – tourist season – after all of us having been told in a group meeting that we would not be able to take time off during the summer.

That must have been really stressful for them, and I felt bad. The last time I left that job, I gave them 3 months notice, and found a good excuse to leave. Really at that time I had decided to leave for stress reasons also, but found a way to make it seem like a positive change (going to school through a government funded program to train women in the trades – for me, that was construction.)

This time, however, it was my psychiatrist who took me off, and wanted me to stop working immediately. She was right… of course she was right. I was not doing well at all – but I needed the work.

I was good at that job, for the most part, though in those last days I was so paralyzed by anxiety that I couldn’t do a lot of the extras that were called for at quieter times. Although I didn’t ask to be taken out of work, I really was praying for it to be taken away – so it wasn’t even exactly unwanted. It was frightening, though.

It has been over two months since I was taken off work. I only have two weeks left of my medical leave before my employment insurance runs out – though it is highly likely my psychiatrist will give me the 5 week extension, as she doesn’t want me going back to any job for a very long time, and certainly not that one. At the end of October, however, I will have used my maximum time on EI, and will have to come up with another solution.

So my boss called, and I was in a good mood. I told him I would have to talk to my psychiatrist, and couldn’t give him an answer before September 15th, and then hung up.

The rest of the afternoon I was anxious, trying to decide what to do. I know that job. I am good at that job, and they even want me there… but the anxiety is so severe that my marriage (all of my relationships, really) suffers quite badly. I cannot live outside of work, I spend all of my time trying to block out thoughts of work. When I work, my anxiety is so bad that I have constant panic attacks throughout my days, and that brings about a lot of pain. I can’t sleep, I can’t think, I can’t function.

On the other hand, we need the money, and I feel guilty and selfish to not be working. If I have to go back to work, any job outside of my home would cause at least that much anxiety, and likely much more. If I have to go back out to work, I might as well go back to that one, as I know how to do it… But should I go back out to work?

As the afternoon went on, I was thinking about what my boss said. They would even take me back one or two days a week, if that was all I could handle. One or two days a week would still cause a lot of anxiety, and for the first month, since I would lose my EI, I would actually be making less than if I didn’t go back – but is that a dishonest reason for staying home? Only I know that my psychiatrist will advise against it. I know my therapist will advise against it. I know that for me, it would cause the very trouble that caused me to leave in the first place… even though I like the job, know the job, and am good at it.

I talked to my son about it, and he immediately said it wouldn’t be a good idea, as I would go right back to the level of anxiety I had before (and it was horrible for all of us.) He said that even going back one day a week would cause me to be severely anxious for three to four days, and he was right. He would rather be broke than to have to deal with me like that, he said.

Still I thought I should at least try to go back… maybe push myself to four days again so we could get the renovations needed to our house so we could either sell and downsize, or make a basement suite and rent out the upstairs to pay our mortgage. But even the thought was exhausting. I know that I wouldn’t last. One to two days a week would cause the struggle, but provide no real financial help.

In the two months that I have been home, my marriage has been better than it has been in about 8 years. My house is clean and organized enough that I feel good to be here, which also hasn’t been true in years. I am calmer, and enjoy visiting, and want to give more of myself than I have in so many years… I am so much better than I was, and I am afraid to have that taken away again. But I feel a responsibility to work if that opportunity is there, and yesterday my boss called.

When my husband got home from work, I just simply told him that my boss had called and asked me to go back to work. My husband said, “no.” He said I would be good at my job, but for the sake of my mental health I can’t go back there.

I asked him what I should do, and he said either I could find a job I could do from home that wouldn’t cause such issues, or we would work with what we have.

Today I am home, and happy to be here. There is a fire in the fireplace, my pets sleeping on the bed, my house is clean, and I am writing. It is good to be home.

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Autism: The Life of a Housewife

In the mornings now I wake up and think of all of the things that I have to do.

Today I will:

  • clean the kitchen and bathrooms
  • sweep the floors like I do most days now
  • do a couple of loads of laundry
  • I should vacuum the master bedroom and rec room (if I can talk myself into cleaning out the vacuum canister that is full of spiders from cleaning the workshop the other day)
  • write a blog post or two
  • exercise
  • practice playing my keyboard
  • work on my book (I am now typing corrections and additions into the computer)
  • maybe I will wash the floors, too.

I think of all of these things that I have to do, and I am content with my life. I didn’t choose to be off of work – I was told it was necessary. It is a good lifestyle for me, though.

By 11am I have one load of laundry in the washer, the other is hanging on the line. I am still debating about the vacuuming – I don’t like spiders. The rest of my cleaning is done, and I am working on my blog. I look around my house, and it is clean. It calms me. I don’t have to block out my environment like I had to when I was working, and too stressed and burnt out to take care of my house, too. I am happy here.

I look forward to my planned activities for the afternoon. There is so much to learn, and to do! Life is interesting. I can feel my depression and anxiety lifting each day that I am home.

Considering the fall I think, for perhaps the first time, that I could handle hosting life group in my home. It is clean. I can keep it clean. Maybe I can do that. Maybe I would even bake desserts to share with people when they come. Maybe I can!

Somehow I have to find a way to contribute financially to my family. I really don’t want to go back to work. I am happy here, doing what I am doing. But I need the income. It is a battle. I love writing this blog, and working on my book. I want these things to be shared. To get some money from them would be nice, but I know that for me, I have to write for a better purpose. I would rather it not become something I had to do for the money, but could continue to be something I want to do because I have so much to share.

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Maybe I could learn to garden, and grow more than pumpkins and sunflowers. I could learn to can and dehydrate the food that I grow, to lessen our food costs through the year. Maybe I could do that – but it wouldn’t be enough.

I try to remind myself that God brought me here. I didn’t ask for it, but I sure did pray for it. If God brought me here, He can also provide for me to be able to stay. I try to trust in Him. Faith is hard! It isn’t something that just comes, and we walk pleasantly along, never worrying about anything. Faith is a lot of work, and needs to be strengthened moment by moment, day by day.

There are many fears that come from being here, but not like the ones I have from going to work. I could live like this. I could thrive here. My hope is that I will be able to stay.

 

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Finding Work That Works For Me

What I have found in these weeks since my psychiatrist took me off of work and placed me on medical leave, is that I need to have the freedom to form my own routine.

For 17 years, plus all of my years of schooling, I have tried so hard to form my life on another person’s schedule. I have been told that is what is “normal”, and that I have to find a way to make it work.

The truth is that I can’t make it work. Not that I won’t. I really have tried very hard. I can’t. I can’t live, and find peace on another person’s timetable. I can’t go out to work for so many hours a day, and then come home to my own routine.

Always I am overwhelmed. Always I am anxious, depressed, and unable to really “live” on my time outside of work. I cannot take care of my home. I cannot maintain what relationships I do have. I cannot find a place of calm. I cannot keep going for long without falling apart. Not when I am working like that.

So in these weeks of medical leave, I am going to have to find a way to work on my own. It is not that I am unable to work. I can do my work, and do it well. What I need is to find work I can do as I am inspired, such as this blog. Only I do need the income, and I haven’t the imagination to come up with the ideas.

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How many unemployed people with Autism, or other types of social disorders, would be able to work if we had someone to guide us and give us ideas of things that would truly work for us? Maybe we don’t fit in to society in the way that it has been created, but that doesn’t mean we have nothing to contribute.

 
 

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Holding on to Hope

Hope, I have found, is a very difficult thing to hold on to.  I am not certain how much this is an autistic trait, and how much it reflects my life experiences of being an undiagnosed autistic, along with all of the pain, criticism, and failure that came with that.

Yesterday I was encouraged.  I had found ideas for work that was available to do online, was flexible in scheduling, and seemed to be work that I would be suited for.  It seemed like the perfect opportunity for me to be able to rearrange my life in a way that I could live with.  My anxiety was the lowest that it has been in many years, my mind was clearing so I was able to think better than I have in years, and having been off of work for nearly 2 weeks, my house was finally getting cleaned and organized to the point where I could look at it without becoming overwhelmed and shutting down.

Then the fear set in. The questions started flooding into my brain:

  • Is this legitimate work, or is it another scam?
  • Do you really have what it takes to do this work?
  • Is there enough work available that you won’t have to compete for the job?
  • Are you actually smart enough to be able to do the work?
  • Is this work available in Canada, or is it only for US residents?
  • Could you keep this up, or will it cause you to become anxious and shut down again?

With those fears come the attacking thoughts within my mind:

  • These things never work out for you.
  • You are such an idiot for thinking things might be different this time.
  • You are such a failure. This will never work out.
  • You can’t do this, what were you thinking.
  • You are going to have to go back to your old job, and things will never change.

And so I woke up this morning feeling discouraged and without hope. Hope is so hard to hold on to when a lifetime of fears and failures are holding me back. How many times can I get up again before I am done with trying? How many times can I fail before my heart truly breaks?

Today has been a very hard day. But maybe… maybe tomorrow will be better.

 
 

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