Work and autism – Personal experience

Image depicting the quote "We must free ourselves of the hope that the sea will ever rest. We must learn to sail in high winds." on orange background. This quote is by Aristotle Onassis.

”So what do you do?”

My entire life I have hated that question. I still do. All my life my answer to this question was not on par with what everyone else around me answered. As always I was just not quite normal and good enough to be able to answer this question comfortably.

I went through the regular school system in Germany from grade one trough twelve. But not quite. After years of torment my body eventually gave in and I had to leave school in twelfth grade just shy from graduation.
It did not go nicely, there was a lot of missed days, a lot of illness, a lot of trouble at school, a lot of bullying, a lot of skipping school. I ended up being sent to a mental health clinic.
After that very unsuccessful endeavor I went on to a secondary education kind of thing. There I got a general education degree as well as a job training degree. It was clear from the beginning that I would never be able to work in the job I trained for but I had to do “something” as my parents always used to say.
Next I went on to do an internship at a preschool. After that I decided to try my luck at becoming a preschool teacher. I loved children, I loved working with them, and I was very good at it, too. Needless to say, that did not work out either. I was great at working with kids but assuming a leadership role, organizing a classroom, communicating with parents all of that did not work for me.
After that I met my husband, moved to the United States and tried several things there as well. Nothing worked out. I was unable to handle whatever the job brought with it and had to stop. My body would just not cooperate. I was unable to cope, physically, mentally and after years of failing also emotionally.

So since the end of my educational endeavors in 2009 I have been officially unemployed. I made some money here and there, on and off, doing things from home.
I did some medical billing, sold some jewelry on Etsy, did some writing, and tried my hand at childcare again because I am extremely passionate for that – to no avail. After roughly twelve years of trying and failing my body finally caved in. I ended up in the hospital.

I do not know if I will ever fully recover. I hope so. I am trying the best I can at any given moment. That includes learning to know and accept my limits. Not pushing myself to reach the goals of other people. Instead trying to work out what my goals are. Goals I can achieve. With my individual abilities.

What do you do if you don’t work?

After months of very slow recovery I felt strong enough to try work one more time. I felt the urge to work. I wanted to work. Do my part. Have a purpose. Feel needed. Useful.
I wanted to try one last time, even though I did not say that out loud to anybody. Only to myself. One last effort to try and get something to work out for me. And I decided that if I was to stand a chance I needed to start all the way at the bottom. Bottom that meant a job with no pressure. No requirements. No expectation. A job that could fully accommodate my every need. In a way that allowed me to take every step I wanted to take on my own time.
I knew I would not be able to find such a job on the regular job market. I am disabled. Currently severely. When you are in a position similar to mine in Germany you get help. Lots of it. When I was in the same situation in the United States I got none. None at all.

In Germany, when you are unemployed, you report to the jobcenter. You fill out forms, and you go to appointments. You get unemployment benefits. I am not ashamed of this anymore though I used to be.
At the same time you are required to be available for work found for you by the jobcenter agents. If you are unable to work for at least three hours a day in a job on the regular job market you are ineligible for jobcenter benefits and you get social benefits instead.
When I first signed up I was unsure of how life would go on and my agent and I decided to keep me on jobcenter benefits until things were decided. The amount is essentially the same as social benefits, just procedures are different.
When on social benefits you are no longer required to be available for work they assign you. You are deemed unable to work for at least three hours a day on the regular job market. And a different agency is assigned to you. That is pretty much it.

With the jobcenter always by my side I went through a half year ordeal of figuring out where to go and what to do. I went to two mental health clinics because of the crisis I had gone through before I returned to Germany. Neither helped.
I signed up for specialized autism therapy in September 2014 and was told I would have to wait one year to get a spot. I am scheduled to have my first therapy session on September 21st 2015.
I signed up for general therapy to hold me over but after being sent away by three different psychologists I gave up and decided to just hold out and wait a year. One admitted he was not qualified enough to help me, the one he referred me to said he does not even do therapy just referrals, the one that one referred me to said he had no appointments at all anymore.
Nobody I met knew enough about autism and related co-morbid disorders to feel they would even be helping me at all. I waited for each new appointment about two months and after six months had already passed I just could not sign up and wait again. It was draining.
I had a lot of physical health problems as well but those are extensive enough to become part of a post about finding the right medical care while being autistic.

At the same time as trying to find a therapy spot I looked for alternatives for my future. I went to several facilities that offer daytime occupation for people with psychological problems or any kind of disabilities. None of them were accommodating enough to allow me to go.
Finally I said to my husband “I am done. I cannot do any of this. I need a place that starts with me all the way at the bottom, allows myself to make all the decisions, and lets me move forwards, backwards, or stay the same depending on my current abilities.”
My husband is an optimist and he wanted me to thrive. He was not happy when I first suggested to go into one of the so called “workshops” that exist in Germany for people with disabilities.
Neither of us knew much about them but we had been to some during the winter holidays. They create wonderful art and sell that during Christmas time to make some extra money.
I knew enough to know that the people working there ranged from almost immobile to very active. That was enough for me to conclude that therefor the facilities must be very accommodating and offer all kinds of work in all kinds of areas for all kinds of individual abilities.
And I knew that there, for the first time ever, people would know what autism was. People would know the difficulties that come with it.

Finding a job that can accommodate my needs

After a few weeks of pondering I decided to go for it. My mother made an appointment for me after finding out which facility would actually be responsible for me (this depends on your place of residency). A very nice woman welcomed us on our first visit and my world changed.

The first thing the woman did was to show us around. And after a few steps into the place I realized that it was completely different from what I had expected.
It was smaller than I had thought. Quieter. More organized. And hidden inside the rather modest looking blue building was a real factory. Not one like you are probably imagining right now.
I mean – they are actually making things. They provide all kinds of services to all kinds of companies. They are the real deal. The areas in which one can work include woodworking, metalworking, manufacturing, packaging and shipping, tailoring, landscaping, parts assembly, printing, and cosmetics.

I was stunned. I learned that once approved one would stay in the facility for at least 2 years. That was the long-term home I had been looking for. I was completely flashed when I learned that after two years I could decide to go on to a job on the regular job market (which they help you find, get into, and keep) or you could just stay right there. Forever. Or until you choose to move on.

I could not believe what I heard but it got even better. I would have 35 days of vacation a year. I would get regular breaks during the workday and could take additional breaks as needed. They have rooms in which one can lay down and rest or sleep during the workday.
I can adjust my workplace to my needs. I can stand or sit. I can get up and go outside or walk around whenever I need to. I may bring noise cancelling headphones, sunglasses, a hat, anything I need to maneuver my sensory issues. I can use AAC to communicate.
I can even adjust the length of my workdays as needed. Full time? Sure. Part time? No problem! Start with half days and switch to full time later? Why not? Back to half days if it gets too much? Absolutely.
If I got sick I would stay home and come back as soon as I could. There would not be a limited number of sick days available to me. I would get picked up by a driving service in the morning and be driven back home after work. Door to door delivery so to speak.
I get to pick what I want to eat. I get to decide what I want to do. Want to try out everything? Go for it! Scared of that thing? It’s okay, do something else. Cannot do anything today? That is okay, just be there. Want to work in landscaping for two years, then find it does not suit you and want to try something else? Yes, you can.
Anything and everything can somehow be adjusted to make it possible for each individual to work there and do their part.

There is a social worker always on site, all staff members are well trained and able to help with any problem that could ever arise. Any question I asked was answered with a very clear “Anything is possible.” Anything.
There was nothing I could throw at them that they had not seen yet or did not know how to accommodate. I was completely baffled. And I signed up that very day because I knew that this was exactly what I needed. I would be able to start at zero and work my way to wherever I wanted to be.

From the day I decided I wanted to go until my first day of work six months have passed. Six long months. But I made it through that time of waiting and hoping and fearing that it might not work out.
I went through the physical exams to determine whether I am fit for regular work or not (I am not). I went to talk to the psychologist to determine whether I was actually autistic enough (I am). I filled out all the paperwork with help of my father who is awesome at it (I am not). I went to all the appointments along the way that were required to make sure that all agencies involved agree that this is where I belong.
Of course the government would rather see me in a regular job, paying taxes and all. But in August it was determined in a final conference, that I was in fact eligible to join the program. To be honest, I believe those were the most important news I had gotten in about ten years besides the marriage to my wonderful husband.

When the absolute will to work just isn’t enough

During my first week at work I worked half days. I got up at 5.45 am, got picked up by the driving service at 6.45 am, got to work at 7.30 am and stayed until 12.45pm. When I got home at 1pm I went straight to bed.
I did not sleep but I rested. For the entire rest of the day. Because I needed to. I was exhausted. I could barely keep my eyes open. I could not walk further than a few steps. The entire experience drained every bit of energy from my body and mind. I went to sleep at 9pm to start the whole thing over again the next day.

I did not sleep enough. My anxiety was so high it stole my rest from me at night. After one week and two days of work my body shut down. I had a breakdown at night due to total exhaustion and lack of sleep.
I woke up around two in the morning with vivid hallucinations, an intense panic attack, racing heart, palpitations, and severe pain in my back and stomach. I thought my ears were spinning on the side of my body. I could not feel my body. The world went by my eyes at light speed. My muscles were spasming out of control. It was a very scary and unpleasant experience. And I knew it was caused by my lack of sleep the past weeks. My body was just screaming for rest.

So I stayed home. I got a doctor’s note that allowed me to stay off work Wednesday, Thursday, Friday which gave me five full days to recover. It is Sunday today. My last day before I will try to go back to work tomorrow.
I have slept rather well the past three nights. I am melatonin free since last night. I am not constantly dizzy anymore. My muscles are still extremely weak but it is okay if I just sit and am. I am awaiting the arrival of my period today or tomorrow though and since that is always a struggle body-wise it remains to be seen if that will force me to stay home another day.

I am very disappointed, sad, and frustrated that all the accommodations still were not enough. I have analyzed everything and hope to have found the lead causes for my latest breakdown:

1. The bus ride in the morning is currently not doable for me.

I have to get up at 5.45am to make it to the bus. I then have to sit on that bus with a group of other people for an hour. This means 2 hours of stress before my workday even begins. Given my total lack of sleep this is not doable for me right now.

2. My workday is still too long for the beginning.

I get up at 5:45am. I get home at 1:00pm. That means my actual workday is seven hours long. That is not a half day. That is nearly a full day. Too much to begin with.

3. I do not get enough sleep to balance out the exhaustion I go through daily.

I have not slept more than two hours a night for the past three weeks. My body just cannot cope anymore. I can handle a lot of things and huge amounts of stress as long as my body gets the chance to recharge and rest at night. If I do not sleep I cannot cope.

So after five days of trying to rest and catch up on sleep (which worked well enough to be hopeful) we have decided for the following accommodations to be put into place:

1. I will not ride the bus. My husband will drive me in the morning.

This allows me to get up one hour later and skip the entire two hours of stress in the morning before work even begins.

2. My workday will end at 11.00 am instead of at 12.45 pm.

That means almost 2 hours less of stress at work and more time to rest and recharge after.

3. I will work on fixing my sleep.

My mother has just finished sewing a weighted blanket for me tis weekend. I am going to try it for the first time tonight and am hoping it will help me sleep through the night.
I am taking melatonin if needed. I am trying to figure out ways to keep my sleep hours high enough to make up for the draining experience of starting a new job.

4. I need to find a doctor who understands autism and can help me with related health issues.

I am highly motivated because I know if I can make it through this and adjust I can be very happy at my new job. I know that place and I have the potential to do great things.

I have a job. I am thirty years old and I have never been able to say this before. It is special. I have a job. And I am doing everything I can to keep it.


If you are now curious where I work – I have decided to share. You can get an idea even though the insight you can gain from a website is very limited.

Werkstätten Karthaus

Some writings of actually autistic people about their experience with working:

THEAUTISTICME
AUTISTICADVOCACY

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