Recovering From Autistic Burnout

Today, the prompt for Reena’s Exploration Challenge is one word: burnout. This word evokes so many thoughts, feelings and memories in me! After all, though I was never diagnosed as suffering with actual burnout, the reason is more that burnout isn’t a DSM-IV or DSM-5 diagnosis than my not having suffered it.

That is, I did indeed not suffer the classic shutdown-type burnout where people are too exhausted to function. Rather, my burnout was more of the meltdown type, where I got so irritable and dysregulated that I couldn’t function anymore.

In 2007, I suffered autistic burnout. This is an actual thing and is more and more recognized by autism professionals too. It involves an inability to function in daily life as a whole, not just work, due to the experience of being overloaded, being autistic in a neurotypical society.

I have shared my experience of landing in a mental crisis in 2007 many times before. I was at the time living independently (though with a lot of community support) and going to university. That all changed within a matter of days: on Tuesday, I was sitting an exam, while the following Saturday, I was a patient on the locked unit of a psychiatric hospital. First, while there, I had to stabilize. I had to get back into a normal sleep/wake rhythm and regain my will to live.

Once I was no longer nonfunctioning and suicidal, however, I had to get my life back on track. My social worker thought I could go into supported housing for autistic people. I, at first, thought so too. Until I saw all the criteria relating to independence, lack of challenging behavior, trainability, etc. That wasn’t going to work out.

To be quite fair, I never fully understood my actual level of functioning until sometime in 2020. I had wanted to prove myself for so long. I had worn so many masks that hid the real, messy truth of who I am. Consequently, I constantly overestimated myself and my abilities. So did the people around me. Until one day, in November of last year, I crashed again. I probably suffered another burnout. That was when my one-on-one support was started.

There still are voices in my head telling me I could, should in fact go back to my life of before my first burnout in 2007. Back to independent living and college. Otherwise, how can I claim recovery?

The thing is, people who experience work-related burnout, usually don’t go back to their exact jobs from before their burnout either, if to the same job at all. Why should I then go back to a life I hated from the get-go? I try to see recovery from burnout not in terms of recovering lost functioning, but in recovering lost pieces of myself.

#WeekendCoffeeShare (May 2, 2021)

Hi everyone on this first Sunday of May. I still honestly can’t believe it’s May already, but it is. Today I’m joining in with #WeekendCoffeeShare. It’s still early in the afternoon, but I didn’t want to be very late with my submission. I’m having my afternoon coffee in a bit, so if you’d like one too, that’s okay. Let’s have a coffee and let’s catch up.

If we were having coffee, I’d tell you that this week was a mixed bag weather-wise. We’ve had sunshine, clouds, wind and rain. The temperatures are still below normal though.

If we were having coffee, I’d be excited to share that, on Tuesday, I went to a playground in a neighboring village with my one-on-one staff. It was King’s Day, so we had the day off from day activities, but I had a lot of fun anyway. The playground had a trampoline, a seesaw and several swings. My husband wondered why I had my shoes on while jumping on the trampoline, but this was apparently allowed.

Me on the trampoline.

If we were having coffee, I’d also share that, on Thursday, I revived my Instagram account. That is, I had posted exactly one photo some four years ago and had deleted that a few months back. On Thursday, as you can see, I uploaded a photo of a soap I’d made with my one-on-one last week. I am not yet certain I will really be posting to my Instagram more often, as I don’t think my pics are really Instagram-worthy, but well. I had fun making the soap and wanted to show it somewhere.

Speaking of soap making though, I’m planning on making a lip balm real soon. I also found out early this week that I will be able to make shampoo bars after all, since it doesn’t require saponification with lye. Now the stuff that is used to make shampoo, is quite concentrated too, but I think I may give it a try after all.

If we were having coffee, I would tell you that the physical therapist once again urged me to wear my AFO after all. It still hurts and, to be honest, I feel as though she dismisses my pain. Then again, I understand the need for the AFO. Let’s just hope my semi-orthopedic shoes will be here soon. I doubt it though.

If we were having coffee, I’d tell you that the manager came by on Thursday to inform me that the opening for a new staff had finally been filled. The new staff will start orienting at my home tomorrow. At first, she will not be working with me, but eventually she might.

If we were having coffee, lastly I would share that I spent the weekend in Lobith with my husband. We had delicious meatballs for dinner yesterday. We also had rice and cucumber. In the evening, my husband gave me a picky eater test he’d found online to see if I had a high score. I scored eleven points, he scored six. Then again, I probably was a little strict on myself, as I said for example that I wouldn’t eat celery. This morning, it was in a salad we had for breakfast and, while I didn’t love it, I didn’t hate it either. There are only a few foods I definitely will not eat. That being said though, the list of foods I’d rather avoid, is quite long.

How have you been?

#WeekendCoffeeShare (April 11, 2021)

Hi everyone on this cloudy and slightly rainy Sunday evening. I’m rather late writing my #WeekendCoffeeShare post this week. I’m having a rather hard time planning when to write, as I cannot concentrate on it when my one-on-one staff is with me and yet struggle to feel well enough to write when alone. I just finished my dinner, so no coffee for me as of yet (though with my parents, coffee after dinner was a ritual). If you’d like a Senseo though, I can make you one. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week was rather bad weather-wise. It’s been raining all week. On Monday and Tuesday, it even snowed a bit. It’s been near freezing cold too. How is your weather?

If we were having coffee, I’d share that this week, the physical therapist and orthopedic shoemaker came by to discuss my getting semi-orthopedic shoes. My current, store-bought shoes aren’t great for fitting my AFO in. They also have laces, which I can’t tie myself. I’ll hopefully hear next week what models they have available. I did try on a pair already, but this was just to get an idea of what I’d need.

Thankfully, the shoes will be fully covered by long-term care. This did lead to a bit of self-loathing, in that I feel like a burden for costing so much with my one-on-one, the weighted blanket and all the other costs and now this. I try to calm myself by thinking it wasn’t really my decision. Besides, I will most likely experience less pain when walking and be able to walk longer distances. Still, I can hear my inner critic say that I fake my mild cerebral palsy.

If we were having coffee, I’d share that, last Friday, I was in a crisis. I don’t even know what led to me starting to feel triggered. At some point though, I left my room at night. On my way to wherever, I bumped into something and swore. Then I decided I’m unforgivable anyway now and decided to self-harm. I’m okay physical wound-wise and the night staff eventually calmed me down. Still, I have been feeling really unsettled all weekend.

If we were having coffee, lastly I’d share how proud I am of myself for continuing to blog each day and sometimes more than once. Of course, I’m busy with the #AtoZChallenge, but I also managed several other blog posts. That’s pretty awesome if you ask me.

How has your week been?

Things That Made Me Smile (March 29, 2021) #WeeklySmile

Hello everyone. I’m still struggling quite a bit today. Like I said yesterday, I have been flooded with emotional flashbacks. To end my day on a positive note, though, I am participating in The Weekly Smile once again. Today, my smiles are food-related.

On Friday, one of the staff came to me to say that she was going to cook a meal for that evening with one of my fellow clients. He and I are the only ones who can eat solid food. Well, that isn’t 100% true, but the other client who can, is a very picky eater, who doesn’t enjoy the types of meals we do. Anyway, the staff gave me the choice between three different dishes we could make with Knorr’s World Dishes series of packages. These are packets of rice, pasta or the like, seasoning and spices, to which you add veggies and meat. The meals I could choose from, were köfta (a Greek meatball dish), nacho casserole and lasagne. I chose the nacho casserole.

The staff and this other client set about preparing the casserole in the afternoon. At around 4:30PM, the evening staff put it in the oven. It was so delicious! The casserole contained nacho chips, minced meat, onions and bell peppers. There was also lettuce to go with it as a side dish, but I didn’t have that.

These packages are for two to three people, so I had more than enough. I have fond memories of cooking köfta myself when in independence training in 2007 and would really like to help prepare it when we get to this one.

Then yesterday, my one-on-one support staff had brought ready-made cookie dough. We made cookies with this and they tasted awesome! Yesterday evening, I had two. I then had the staff take the cookies to the living room to give to her colleagues or any clients who may be able to enjoy them. I fully expected them to be all gone by today, but there were still some left! That definitely put a smile to my face.

What made you smile lately?

Runaway #SoCS

When I was still in the psychiatric hospital, I’d run off often. At the locked unit, this was dealt with by introducing seclusion and restraining measures. On the other hand, at the unit I resided at later, I was made to be accountable myself. This meant that staff wouldn’t go after me if I ran off. They believed that, if I got lost enough times, I would unlearn to elope. I didn’t.

I am a truly frequent runaway. Always have been. When I still lived with my parents, I would often run away too. Same when living independently. I had frequent police encounters because of this. They would invariably call the crisis service, who would refer them back to my home support team. They all had no idea how to handle my elopement.

Then, when I went into long-term care in 2019, I still ran off a lot of times. I usually didn’t get far, as my staff would come after me. I also did get some restrictive measures, such as a sensor that alerts the staff when I leave my room. The door of my care home is locked at night because of my elopement risk too. (The other clients can’t work the key and most aren’t safe outside of the home alone either.)

Since my one-on-one support got introduced last December, I hardly ever run away. It’s been a true blessing. Sometimes though, I still wonder whether I’m indeed just manipulating, like the people in the psychiatric hospital would say, and need a lesson in accountability.

This post was written for Stream of Consciousness Saturday or #SoCS, for which the prompt this week is “Run”.

Things That Made Me Smile (March 22, 2021) #WeeklySmile

Hi all on this lovely Monday! I am so excited to have discovered the Weekly Smile. This is, as the name suggests, a weekly blog event in which participants share what made them smile. Having discovered this meme itself is a reason to smile. I love being positive! Let me share what else made me smile.

First up is my new assigned staff’s kindness. Like I said in my #WeekendCoffeeShare post on Friday, I have a new assigned staff. She is calm, kind and very dedicated to her job. I initially worried she might get too attached and then have to withdraw as my assigned staff. She reassured me though that she maintains her professionalism.

Yesterday, I was feeling a bit triggered. The student staff, with whom I am not fully comfortable yet, had been my one-on-one for the evening. In addition, a male staff may get to work in my home soon. He seems kind enough, but still, it’s an adjustment. All this led me to feeling a bit stressed out when I was going to bed. Thankfully, my new assigned staff comforted me.

After the staff had taken me to bed, I pressed the call button a few times for the staff to come back, but she didn’t mind. She has this little rhyme she tells me each time she puts me to bed. It goes something like this:
Sleep well,
Head on the pillow,
Ass in the straw,
Then Astrid sleeps soon.

This time, the staff adjusted the rhyme to address not just me, but all of the voices (alters) inside my head. That definitely made me smile.

Second is my sensory room experience that I was able to create in my own bedroom. First, I found a calming essential oil blend to put in my diffuser. Then, I found the album on Spotify that I used to have in the CD player in the day center’s sensory room. It is called Songbird Symphony. Lastly, I crawled under my weighted blanket and had my staff cover me with the ball-filled blanket that came with the sensory bed from our makeshift sensory room. In total, I had at least 20kg of weighted blankets on top of me. This probably isn’t healthy for actual sleeping, so I threw off the ball blanket before actually drifting off to sleep. However, the feeling before this was so peaceful. It reminded me of Temple Grandin’s “hug machine”. Reading about that introduced to me the comforting effect of deep pressure years before I felt able to explore my own sensory experiences. Now, I totally appreciate my care staff, physical therapist and the manager for having helped me find my sensory comfort.

What made you smile this past week?

#WeekendCoffeeShare (March 19, 2021)

I am once again early at least for me with my #WeekendCoffeeShare post. It’s right between my dinner and my evening coffee now, but I can make you a Senseo coffee if you want it. Let’s have a drink and let’s catch up.

If we were having coffee, I would tell you that I’m still having a cold. It’s a lot better than it was last week, but I’m still sniffy. This morning, I had a bad cough, but that seems to be gone now.

I am so glad though that it’s not COVID. This afternoon, I was informed that another home within my care facility is in isolation due to a client having tested positive for COVID. This does worry me a bit, since that client must’ve contracted the virus after being fully vaccinated. The staff do try to reassure me though.

If we were having coffee, I’d share that, now that I’m feeling a lot better cold-wise, I picked up the walking habit again. I managed to reach my goal of 10K steps both yesterday and today.

I did fall on my knee today while walking. Thankfully, I just suffered a slight scrape to the skin.

If we were having coffee, I would tell you that yesterday marked one year since the day center closed due to lockdown. A staff and one of my fellow clients made cheesecake to celebrate. Yummy!

A photo of me in front of the cheesecake

If we were having coffee, I would share about some changes to my care. First, I have a new assigned staff. She isn’t new to me or the home, just new to being my primary support worker. My former assigned staff is in college getting her nursing degree and was a bit too busy to have me in addition to two other clients to be assigned to. I really like my new assigned staff.

However, I was briefly triggered too. After all, my new assigned staff is really involved with my care and I worried she might get too attached and then have to step back. I thought this might’ve happened to my old assigned staff, but they both reassured me this isn’t the case.

Also, my one-on-one got extended with half an hour each day as of today. This might not seem much, but it prevents me having to deal with too many staff changes. After all, in the old situation, I’d have day activities till 4PM, then have to rely on the regular evening shift for half an hour before my one-on-one comes on. Now I’ll have that half an hour covered by one-on-one too. I’ll still have some time without one-on-one in the evenings and on week-ends in the afternoon, but that’s totally okay.

If we were having coffee, lastly I would share that my husband plans on visiting me briefly tomorrow. That is, if my cold isn’t too bad. We’re planning on going to a fast food chain drive-through.

How are you all doing?

#WeekendCoffeeShare (March 7, 2021)

Okay, I’m so very late with my #WeekendCoffeeShare post for this week. Sorry! I was in Lobith yesterday and, though I returned already before noon today, I really didn’t find the time to write. I have so many things I want to write about and yet none come out clearly onto the screen. So let me just ramble. There might still be coffee here or you can grab a soft drink. Let’s chat.

If we were having coffee, I would tell you that I’m still struggling with hypervigilance and emotional flashbacks. If anyone is familiar with complex PTSD, I’d love to know your tips for dealing with these. I mean, I’m constantly on high alert and on the edge of flight.

It doesn’t help that I have no idea what triggered me. I mean, could it still be the dentist’s appointment at the main institution last Tuesday? I’m pretty sure that’s not it. In any case, I’m trying to cope the best I can.

If we were having coffee, I’d share that, on Friday, I showed a staff a case video from the Center for Consultation and Expertise on a woman with severe (complex) PTSD. It helped clarify some of the issues I’m facing.

If we were having coffee, I’d share that I had a bit of a meltdown when I came back to the care facility from Lobith early this afternoon. I wasn’t happy about the student staff doing my one-on-one this evening. Thankfully though, the staff reassured me that the student or I could call for another staff if needed. It wasn’t needed ultimately.

If we were having coffee, I’d then try to lighten the mood by talking about the weather. It’s cold here for March, with tempts dropping below freezing at night. Still, it’s quite sunny. The weather forecast predicts rain for all of the upcoming week though.

If we were having coffee, I’d share about my husband’s great chicken wraps that he’d made me yesterday. They were especially great with tabasco sauce in them.

If we were having coffee, lastly, I would proudly announce that I got in over 10K steps five days in the past week and over 12K steps on three of those. Today and yesterday, I didn’t do so well, but I still got in over 5K steps each day. That’s what my husband says the scientific community has calculated as the real recommended minimum step count each day. My husband said the 10K mark was made up by the inventor of the activity tracker. Regardless, I did average over 10K steps over the past seven days. Unfortunately, my sister still beat me on Fitbit. Oh well.

What’s been going on in your life?

#WeekendCoffeeShare (February 13, 2021)

Hi and welcome to another #WeekendCoffeeShare post. I just had my soft drink of Dubbelfrisss and some Pringles for today. However, I can make you a cup of Senseo coffee if you’d like. I can also make you tea. A staff brought me some green tea without additional flavoring earlier this week, which I’m so grateful for. I love this kind of tea! Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that it’s still pretty white outside here. The below picture was taken on Thursday, but not much of the snow has gone yet. That should change tomorrow, as temps are supposed to rise above zero.

A picture of me in the snow

If we were having coffee, I would tell you that I’m happy to report feeling much better than I was earlier in the week. Like I said yesterday, I had some worrying health symptoms on Monday and Tuesday that were probably attributable to constipation (and possibly some stress too). Like I mentioned, the doctor prescribed me magnesium tablets. I’m feeling much better now. Not yet completely normal, but almost so.

If we were having coffee, I’d tell you that I got a wonderful stuffed bear from my husband as an early Valentine’s Day present today. I gave him an airdry clay heart I’d made.

My husband paid me a quick visit at the care facility on his way back from buying a trailer for his car. The trailer is truly huge for one that’s behind a regular VW car!

If we were having coffee, I’d share that my support coordinator told me that I thankfully no longer need to tell the staff several days in advance when my husband is going to pick me up. The reason they so far required this, is my one-on-one support. However, my coordinator and the manager agreed that it’s possible for them to schedule the staffing regardless. This is a huge relief, as especially with COVID and all, it’s hard to plan ahead.

If we were having coffee, I would tell you that today, my one-on-one support staff took me to a farm with my care agency where we could see the horses, goats and rabbits. Unfortunately, they were eating, so they didn’t show me much attention. I didn’t take my phone with me, so no pictures. That will have to come next time.

If we were having coffee, lastly I would tell you I’ve done a lot of reading and book hoarding lately. I will have to do another reading wrap-up soon. Let me say for now that I’m totally inspired to read more SciFi. I totally love the escapism!

That being said, I’d also like to moan (probably for the third or fourth time) about the fact that Amazon doesn’t accept payment methods other than credit cards for their digital products. This is really annoying, as I don’t own a credit card. I really wish I could benefit from their Kindle deals, but apparently Amazon doesn’t want me buying anything there. Okay, I could still buy physical products, but what’s the point? We have Bol.com for that, and I want Kindle books! *Whines.* Okay, I can still get the free ones, but well.

What’s going on in your life?

#WeekendCoffeeShare (February 6, 2021)

Hi everyone on this windy Saturday! Welcome to my contribution to the #WeekendCoffeeShare. It’s past 8:30PM, so I’ve long had my last cup of coffee for the day. However, I still have cold water in the fridge, as well as several flavors of soft drinks. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week went by relatively smoothly. I did struggle a bit early in the week because I felt guilty that the one-on-one support I’ve been getting lately isn’t helping me as much as I’d like. The staff reassured me that things have just settled down and I shouldn’t expect an instant great improvement. Besides, in a way, I am doing better than I was.

If we were having coffee, I’d tell you that I got some wonderful new essential oils. I got lavandin (which is like lavender but milder), lemongrass, ginger, clary sage and white fir. I am so happy about being able to make some new diffuser blends. I’d totally expected to sleep like a log because of the clary sage, but I didn’t. That’s okay though.

If we were having coffee, I’d share that I also finally purchased a talking scale. That way, I can weigh myself each week at the same time rather than relying on when I remember to ask a staff to weigh me. The scale wasn’t too kind to me when I first stepped onto it.

If we were having coffee, I’d announce that I got my first shot of the COVID vaccine on Thursday. It hurt a little more than the flu shot had, but the pain was over within the hour.

If we were having coffee, I’d tell you that my husband didn’t visit me today. We already established on Thursday that I wouldn’t be going to Lobith this week, because of the heavy snow and wind that’s been forecasted for tonight. We’re supposed to get up to 30cm of snow with a possibility of snow dunes. I originally thought snow dunes were the ones that would be 30cm high, but my husband said they might be up to a meter or even two. I can’t really imagine we’ll get this much snow, but I know how quickly it can come down indeed. Looking back, my husband could’ve come by for a quick visit this afternoon.

If we were having coffee, lastly I’d share that I made banana bread with my one-on-one staff this evening. We used just eggs, bananas and oatmeal for the batter and then added nuts, cranberries, dates and raisins. The other staff didn’t like the nuts in it, but I loved it.

Banana Bread

What’s been going on in your life lately?