Recovering From Autistic Burnout

Posted on by Astrid

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)

Posted on by Astrid

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?

Enneagram Type Four: The Abandoned Inner Child

Posted on by Astrid

Over the past few days, I’ve been reading more about the enneagram. Since I figured I’m probably a type Four, I read up on that type first in Helen Palmer’s book The Enneagram.

Let me say up front that Palmer doesn’t show pity for type Fours at all. We aren’t portrayed as the special snowflakes we often see ourselves as. That hurt, but in a good way.

First, Palmer describes the typical dilemma Fours face within themselves. Many remember abandonment or loss in childhood and are constantly focusing on regaining that which was lost. As a result, they constantly find themselves second-guessing themselves.

All Fours are prone to depression, though they may handle it in various ways. For example, some accept it fatalistically and succumb to despair. Others cope by constantly being on the move. That would be me, quite literally. Still others find a type of beauty in their sadness and convert it to melancholy.

When describing the typical Four’s family history, Palmer showed a bit more compassion towards us, but it was mostly through the quotes from type Four interviewees. One of them explained that she was an incubator baby and, while she was not literally abandoned, she did feel that way. Boom, that hit. I was an incubator baby too. Even though I was never literally abandoned – my parents aren’t divorced and I lived with them till age nineteen -, I often felt like I was only conditionally loved.

When I read up on core beliefs and schemas when I did schema-focused therapy back in 2013, I most clearly related to the abandonment/instability schema. I still do. I rarely felt safe with my parents and, after leaving the house at age nineteen, I moved from one temporary placement to another until I moved into long-term care in 2019.

Indeed, like the typical enneagram Four, I keep life at an arm’s length distance. I am always on the lookout for something that’s unavailable. Not really in relationships – I have been happily married since 2011 -, but in all other areas of life, certainly. I find myself constantly looking at another place to live, even though the staff and manager of my care facility have reassured me that I can stay here for as long as I want to. I think a core misconception I at least hold is that I can find happiness by chasing what’s unavailable. That’s not true, of course, but my abandoned inner child constantly looks to be rescued in all the wrong ways.

In the book The Enneagram Type 4, the author asks us how we’ve tried to rescue ourselves and how successful we’ve been. The underlying message is that we can’t and don’t need to rescue ourselves, since God is in control. God, will you please rescue me?

Joining in with the Hearth and Soul link party.

I’m Not Broken (And Neither Is Anyone Else)

Posted on by Astrid

A few days ago, I got a notification on WordPress that someone had liked a post of mine called “People Aren’t Broken”. It was probably on an old blog of mine and I can’t remember exactly what the post was about. From what I remember, it was written in response to a person being officially diagnosed as autistic and seeing this as a reason they weren’t “broken”.

Indeed, before my autism diagnosis in 2007, I always thought I was “broken”. Same once my autism diagnosis got taken away in 2016. I still had a personality disorder diagnosis (dependent personality disorder and borderline traits), but I believed strongly in the stigma attached to it. That wasn’t helped by the fact that my psychologist at the time used my diagnosis to “prove” that I was misusing care. I wasn’t.

Today, I found out people applying for benefits are completely screened by some kind of information gathering agency. It made me worry that the benefits authority or long-term care funding authority will do the same, even though I already have both.

It’s probably the same internalized ableism (discrimination against people with disabilities) speaking up that tells me that, if I don’t have a “legitimate” disability (like autism) that warrants me getting care, I’m just manipulative and attention-seeking and generally broken. I am not. And neither is anyone else. Including those who actually do have personality disorders.

This post was written for today’s Five Minute Friday, for which the prompt is “Broken”. Of course, I could have (should have?) written a more spiritual post and, from that perspective, everyone is in fact broken. What I mean with this post, though, is that there’s nothing that makes certain people broken based on disability or diagnosis.

Starting to Explore the Enneagram

Posted on by Astrid

A few days ago, I read on another blogger’s post about the enneagram and suddenly got interested in exploring it. At first, I thought it may be against Christian values, so I shouldn’t be exploring it if I’m serious about being a Christian. Then I checked out some books on it anyway and discovered that several actually look at the enneagram from a traditional Christian perspective.

I first got Helen Palmer’s book The Enneagram, which explained the basics of how the enneagram works. I honestly had no idea at first. I mean, I saw it as just another personality typology just like the MBTI and had little idea that the points are actually connected in several mathematical ways.

I took an enneagram test and it showed I’m a Four with a strong Five wing. I’m still undecided whether that’s correct or I’m really a Five with a strong Four wing. After all, I really do feel deeply (which is consistent with type Four), but I don’t easily verbalize my emotions.

I got a book off Bookshare called The Enneagram Type 4 by Beth McCord. This book is rooted in the Christian faith and the enneagram alike. The first chapter explores faith and the enneagram from a type Four perspective. It starts out by giving an overview of the type.

In the first part, Fours are described as having a deep and rich emotional life. My gut response was: that may be me, but is it truly me or is it what I want to be? Then the explanation goes on to talk about how Fours see themselves as somehow apart from the rest of humanity. They often feel that they’re missing something that everyone else has. Wowah, that’s so me! When I read on, I got a flashback of my father telling my psychiatrist shortly after my admission to the psych hospital, that I just want to be different. Maybe he’s right in some way.

Fours also long for the ideal life and are constantly seeking to change their circumstances and themselves to try to find that “missing piece”. Wow. I read somewhere that most Fours keep the door even in a committed relationship ajar, always keeping the possibility open that their truer love will come by at some point. I don’t do this with my marriage, but I certainly do this with my living situation.

At the end of the chapter, there are some questions for reflection. One of them is about rescuing yourself or bringing about change on your own. How have you attempted to rescue yourself?

Well, for me, I’ve constantly been on the lookout for a better living situation. Even just yesterday, for no apparent reason, I started looking at another care agency’s website to see if I might fit better into one of their homes.

I feel constantly insecure because of my childhood trauma. Then again, maybe I’m also hopelessly looking for an ideal that doesn’t exist.

A thought that has been on my mind for a while now, is what one of my fellow patients at the locked unit told me back in 2007: I need to work on me, not on circumstances. This ran totally counter to my admission’s objective, which was to find a suitable living facility for me. However, now, over thirteen years later, it’s truer than ever. I am in the best possible living situation already and there’s no perfect place. Besides, I always take me to whatever place I go.

The last question for reflection is how realizing you belong to Christ helps you? It is still hard for me to truly surrender to belonging in Christ, so I’m not 100% sure how to respond. However, when I can get myself to understand that I truly am God’s beloved child and belong to Christ, it will radically transform my life. I no longer need to be on the lookout for the perfect life, since I’m made whole through Jesus.

#WeekendCoffeeShare (April 11, 2021)

Posted on by Astrid

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?

The Most Important Milestone

Posted on by Astrid

This week’s prompt for Reena’s Exploration Challenge is “Milestones”.

I am a big calendar girl. As such, I always remember important dates. As a teen, I used to commemorate an important event in my life at least once a month. For example, September 24, 1999 was the day I realized I hated mainstream secondary school and I remembered it for several years afterwards. Similarly, on November 2, 2001, I was in crisis. Same on November 2, 2007 and I was sure the reason (or part of it) was the day (Friday) and date. I still to this day commemorate the day I landed in the psychiatric hospital, even though it’ll have been fourteen years this year.

I realize now that all of these are negative. Don’t I have positive anniversaries? Sure I do. September 19 is the day my husband and I first met (in 2007) and the day we got married (in 2011). On May 7, 2008, we started officially dating and on June 4, 2010, my husband proposed to me.

Then there is the day I was approved for long-term care funding, also June 4 but in 2019. Finally, the day I moved into the care facility, September 23. I only now realize that there were twenty years minus a day between the important event that defined my teens and the important event that I hope will define at least most of the rest of my life.

Okay, that makes me feel ashamed. After all, shouldn’t the most important milestone of my life be the day I met my husband or the day we got married? It probably should be, but right now, honestly, it isn’t. Sorry, hubby.

#WeekendCoffeeShare (April 4, 2021)

Posted on by Astrid

Hi everyone on this chilly and cloudy Easter Sunday. I am rather late joining in with #WeekendCoffeeShare. The reason is that I’m participating in the #AtoZChallenge too and couldn’t find the time to publish another post until today. I just had my afternoon coffee and am going to have a soft drink in a bit, so if you’d like something to drink, that’d be great. Let’s grab a drink and let’s catch up.

If we were having coffee, I’d share how much fun I’m having with the #AtoZChallenge. It is a great way of connecting with new bloggers and challenging myself to write (almost) everyday. For those who don’t know, the challenge is to write posts using each letter of the alphabet on each day of April except Sundays. This is the reason I have time to write a blog post today. My theme is aromatherapy and natural wellness.

If we were having coffee, I would share that this week was rather eventful in general. On Monday, I was very much triggered. I have been having emotional flashbacks a lot, as well as paranoid thoughts about my former clinician reporting me for care fraud if she finds out I’m in long-term care. My staff try to reassure me that I’m not responsible for my care funding. After all, my staff, the manager and behavior specialist applied for me. I am still unsure though.

Anyway, on Monday, when I was particularly triggered, I did an exercise of hitting a pillow to symbolically kick my former clinician out of my life. It was truly empowering!

If we were having coffee, I would also share that, on Friday, I had a treatment review at the mental health agency. My nurse practitioner tried to tell me that I’m already actually processing my trauma with the steps I’m taking now, such as the exercise on Monday. This validated me. My community psychiatric nurse, however, wasn’t fully sure of her role in my treatment and wondered whether she could visit me less frequently. For now, we have decided against this in order to maintain weekly appointments with mental health, alternatingly with my nurse practitioner and CPN.

If we were having coffee, I’d tell you that I finally managed to go to Lobith over the weekend. My cold is still not fully gone, but it’s gone enough that I could see my husband. We had delicious Airfryer fries, turkey and peas for dinner yesterday, as well as pudding for dessert. This morning, we had breakfast in front of the television while watching Hour of Power. It was great!

How has your week been? And how’s your Easter weekend?

Angry and Dissatisfied

Posted on by Astrid

Today, I feel flooded with emotional flashbacks that I’m not 100% sure about what triggered them or even what they are about. To give myself some insight, I picked up the book Journal Writing Prompts for Child Abuse Survivors again. Somehow, the prompts about anger appealed to me.

Growing up, I was always described as “too quick to anger”. There is some truth to this, in that I have and always had an extremely low level of distress tolerance.

My parents would react to this with resentment, but they’d generally solve my problems anyway. This at one point was described as having low expectations of me. When the psychologist who did my latest autism assessment, said that, I was triggered. After all, if my parents had expected me to be able to work stuff out myself, would that have been any better? I understand all about letting babies “cry it out” and I’m not a fan of it. I don’t have a clue whether I was left to “cry it out” a lot. I think so, as I was in the hospital for the first three months of my life and I don’t expect the nurses to have attended to each baby’s every cry. As such, even if my parents did attend to my every cry for attention, I must’ve been allowed to learn some self-regulation through “crying it out”.

My parents weren’t the most patient people in the world. At one point, my father explained to me that a family is like a business, in that it has to be run efficiently. As such, I can understand why my parents rarely let me work stuff out on my own. I also understand why they resented helping me.

Growing up though, my poor distress tolerance skills were seen as mere anger and oppositionality. I’m not sure why people perceived me as always angry. They weren’t just my parents, after all. Maybe I am quick to anger. I don’t know, but to be honest I think distress is different from anger.

When I became an adult and was admitted to the psych hospital, my nursing diagnosis at least off the record was “angry and dissatisfied”. Again, I’m pretty sure the staff confused distress with dissatisfaction. Distress is an inability to cope. Dissatisfaction is an unwillingness to accept the situation. I was perfectly willing to be discharged back into independent living if that was what was deemed necessary, but I didn’t promise I’d cope. This was considered blackmail.

Now that I’m in long-term care, my staff no longer see me as angry or dissatisfied a lot. Even so, I haven’t changed much. I still swear and scream when my computer or iPhone won’t cooperate. Staff do help me now, but they don’t resent it anymore. This has also allowed me to practise asking for help in more productive, proactive ways, which, in turn, helps me become frustrated less easily. I like it that way.

Runaway #SoCS

Posted on by Astrid

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”.