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.

Knowing God When I’m at a Fork in the Road

Yesterday, I finished the First steps with Jesus Bible plan on YouVersion and I immediately wanted to start a new Bible reading plan. I looked through the most recently added plans and found one called: Hey God, Can We Talk? I’m at a Fork in the Road. I clicked on it and apparently loved its description, although I can’t remember it right now. So I decided to start the plan.

The plan walks us through Jacob’s story. For the first day, we were asked to read the verses in Genesis 28 where Jacob leaves for Bethel after Esau plans to kill him. I had no idea about this. I mean, I thought the idea that Jacob would receive Isaac’s blessing rather than Esau had been mutually agreed upon. That’s how my father explained it once when we ate lentils for dinner: that Esau voluntarily swapped his firstborn’s right for a bowl of lentils. He then personalized the story to my younger sister and me. I probably thought to myself that my sister could keep her yucky lentils and eat mine as well.

Anyway, apparently not. Rebekah had urged Jacob to escape the family home and go to her brother. This, the plan author compares to us leaving home to go off to college. Except, she says, Jacob didn’t have his family to support him should catastrophe strike. This hit home to me.

When I lived independently in Nijmegen in 2007, I didn’t have my parents’ support either. That is, when I wasn’t coping, they made it very clear that I wasn’t to rely on them. I had my community support staff, of course, but they too had their conditions for supporting me.

At one point while resting in Bethel, Jacob has a very important dream. In it, the Lord speaks to him and promises him the land on which he lay. Okay, fine by me. I don’t need land. but I do need comfort.

The plan then goes on to highlight verse 16: “When Jacob awoke from his sleep, he thought, ‘Surely the Lord is in this place, and I was not aware of it.'” (Genesis 28:16 NIV)

This, then, was comforting but also slightly scary to Jacob. This is so relatable! In 2007, I had no idea there was even a God, let alone that He cares about my life. Now I do know, but it’s sometimes scary too. Maybe because I am not used, with the exception of my husband (and I doubt that all the time), to being loved unconditionally.

Of course, Jacob’s story takes place long before Christ. However, the God of the Old Testament, unlike what some atheists told me when I first learned about religion, isn’t a horrible dictator. He is still the same and He was with Jacob. I love this. Do you, too?

Linking up with Grace and Truth.

Learning Never Stops #Write28Days

Okay, here’s my post for #Write28Days for today. I know I already wrote a post today and at first I wasn’t inspired to write another. The prompt word for today is “Learn”. This at first didn’t inspire me, until I read Carrie Ann’s response. It completely resonates with me!

As regular readers of my blog will know, I did college for one year in 2006-2007, doing an orientation in psychological and social studies. I only passed the year because the communication skills instructor had given me a passing grade on the condition that I never continue into this field. I was diagnosed with autism a few weeks before the dreaded communication skills exam. Now I did poorly on the exam and don’t really want to use autism as an excuse. Other autistics, in fact, can become social workers or psychologists or work in other such fields the program would be training me for. But I cannot.

Then I transferred to university to become a linguistics major, only to drop out two months in. I took a few psychology classes at Open University in 2009, of course skipping the practice ones and doing only theoretical ones. I think that instructor back in 2007 was right, after all.

Despite the fact that I haven’t been in formal education in over eleven years, I however still learn. At times, it feels like I don’t. I mean, I am not in any type of training or education.

The last time I was in formal training, was to learn to use the iPhone in 2017. I fully expected I would no longer be capable, but thankfully I was.

And now, having become a Christian within the last two months, I am trying to learn all about the faith and memorize scripture. It’s hard, but I trust that with God’s help, it is possible.

Carrie Ann truly motivates me to keep trying to learn. I really want to learn to write better. I also still want to take some free classes. I mean, ideally I’d sign up for some university courses in education or psychology, but these usually require a prior college degree. Maybe I can use FutureLearn or the like. In any case, I really hope that, like Carrie Ann says, learning never grows old even when I do.

New Normal

Earlier today, Stevie Turner wrote a great piece on adjusting to the new normal of serious illness. In her case, it’s cancer. I have so far been able to avoid serious physical illness, but I get the idea of adjusting to a “new normal”.

In 2007, as regular readers may know, I suffered a serious mental health crisis. It was probably autistic burnout, though it got various labels over the years. I was 21 at the time and attending university and living on my own.

In the early months of my psychiatric hospital stay that followed the crisis, I was convinced I could go back to college, university or work and living more or less independently if I just had a little more support. I rejected the first place offered to me because I wouldn’t be allowed to cook in my own apartment. This, looking back, is ridiculous! After all, now, thirteen years later, I live in a group home with 24-hour care. I cannot cook, clean or even do some personal care tasks without help.

Now to be honest, I at the time didn’t have a realistic picture of what living in my own apartment in supported housing would be like. The training home I went to before living independently, had a 1:4 staff/client ratio during most of the day. That’s pretty high and it allowed for staff to help with most household tasks. If I went into supported housing in my own apartment, I’d be expected to clean it all by myself. The fact that I wouldn’t be allowed to cook, was understandable, as there wouldn’t be the staff to supervise me.

Then again, I thought I could handle a low staff/client ratio. It was 1:7 on week days at the resocialization ward and 1:14 on week-ends. I did okay with this. Now, not so much. The staff/client ratio here is 1:6 at the least and I get one-on-one for several hours during the day.

I often look back at myself before my crisis. When I was eighteen, I attended mainstream high school despite being blind. The autism or other issues hadn’t even been diagnosed yet. I coped with classrooms of 30’ish students with just one teacher. Sure, I had meltdowns multiple times a week, sometimes multiple times a day, but I somehow survived. Now, I can barely handle having my coffee in the living room without my one-on-one present to calm me if I start melting down. Oh my, this feels sick. I feel shame admitting this. Yet it’s my new normal. Whether I’m just lazy and manipulative and unwilling to be independent or I’m genuinely unable, it’s the way it is.

I often feel sad when I am reminded of my old life. I often dream that I go back to university. I most likely never will.

That being said, I’m also grateful for what I do have. I am forever grateful that my staff and behavior specialist saw the need for one-on-one. I am grateful whenever I can do a small activity, like this morning I made clay punch-out figures. Back in the psych hospital, I often couldn’t blog even once a week. Now I blog almost everyday.

The most frustrating aspect of my “new normal” is not knowing why. I constantly second-guess myself, wondering if I’m truly such a terribly manipulative attention-seeker. That thought is scary. Worse yet is the fear that this might be some type of neurological thing, that I might actually be deteriorating. There is apparently no reason to think this, but it’s still on my mind. Then again, it is what it is and I’ve got to deal with it.

The Kindness of Strangers

Okay, it’s past 2:30AM and I just said I wasn’t going to blog right now, but CrunchityFrog’s prompt for today (well, yesterday) has me thinking. This is supposed to be a daily prompt thing, so I might join in more often. Anyway, the prompt is to write about the kindness of strangers.

I’ve probably written many times already about overbearing, intrusive strangers. Particularly when I was a teen, I didn’t realize that my autistic behavior (of which I was unaware that it was autistic) combined with my blindness often caused people concern. I am more appreciative of people’s attempts, even awkward ones, to help now. That probably changed on the evening of November 2, 2007.

Okay, I’ve shared the story of my mental crisis probably more often than anyone cares to know. Today I’d like to focus on the kindness of the people who helped me stay alive and safe.

As regular readers of my blog will know, I was in a suicidal crisis that evening. I had left the training home I was a former resident of and had hoped to find safety in, because I was told the staff had no responsibility for me and I was to leave.

I took the bus to the city’s train station, talking into my former care coordinator’s voicemail. I told her I was going to take my life that night. I was completely unaware that people could hear me until a woman across the aisle from me started to talk to me. She told me that the bus driver had heard me, which initially only caused greater panic. She kept saying over and over again that he was getting help for me. (“Help”, of course, came in the form of the police, as is customary here in the Netherlands if someone’s safety is in question.) I was in utter shock, constantly crying and very overwhelmed. I am forever grateful for this woman’s kindness. And of course for the bus driver’s. It most likely, after all, wasn’t within his duty to report his concerns to the police.

Looking back, I realize I rightfully worried random people on the streets many times before and they were kind enough to help. Even if “help” meant to call the police. My parents often felt that people were just stupid, assuming that a blind person shouldn’t be traveling independently. Some were, indeed, but in some cases my parents were stupid, assuming that I was just blind.

The One I Love: My Husband #Blogtober20

Welcome to day two in #Blogtober20. I realize that when I wrote about myself yesterday, I never mentioned the fact that I’m married. Thankfully, the second prompt in the series is “The One I Love”, so now is my opportunity to talk all about my husband, Jeroen. I usually don’t refer to him by his name, but right now it’d be confusing to refer to him as my boyfriend, now husband or whatever constantly.

I met Jeroen on an Internet forum in 2007. Neither of us were looking for a relationship. I wrote on the forum that I was bored and lonely living on my own in student accommodation in the city of Nijmegen, Netherlands. He went to school in Nijmegen at the time. He was also looking to expand his social circle, so he PM’d me asking if we could drink a cup of coffee or tea in Nijmegen somewhere. We met at the bus stop near the university’s dentistry department, because that was the only bus stop near the uni that my bus would stop by. We went for a coffee or tea at the uni’s cafe. I was so nervous that I tumbled off a step and dropped my coffee.

Thankfully though, Jeroen didn’t mind. Though he had been nervous too and had mixed feelings about our first time meeting, he did want to meet again. I invited him to my student apartment, just because I had no clue where else to meet. That could’ve been really stupid, but thankfully it turned out well.

Six weeks after first meeting Jeroen, I was hospitalized onto the psychiatric ward, which didn’t have an Internet connection for patients. I didn’t have Jeroen’s phone number, so asked my staff to log onto the forum and send him a message. The staff didn’t include my phone number, because I hadn’t requested it.

Several weeks later, my father called to ask whether he could give my number to Jeroen. It turned out that Jeroen had found my father’s E-mail address by googling the whois info for his website. I am so grateful my father didn’t have privacy protection on, as I do with my websites.

It certainly wasn’t love at first sight (oh, that sounds stupid for a blind person) for me. On the contrary, when Jeroen told me he was in love with me, I let him wait four months before reciprocating it. Similarly, when he proposed to me in June of 2010, I replied: “So do you think that’d be cool then?” He did really want to marry me and we had our wedding date on September 19, 2011, exactly four years after we’d first met.

Jeroen and I don’t live together. Like I said, he fell in love with me while I was hospitalized. This hospitalization lasted 9 1/2 years, after which I was kicked out to live with Jeroen. I really struggled to cope living semi-independently, so eventually applied for long-term care funding.

Jeroen is 31-years-old (32 next month). He sometimes jokes about my having married a younger man, as I am 34. I am glad he isn’t significantly younger than me though, as, when I was hospitalized on the locked unit, I wasn’t to leave the ward unless with someone 18 or over. We loved going to the hospital cafeteria to have tea or hot cocoa. We also loved playing cards.

Jeroen and I have the same sense of humor. We love wordplay and have our own phrases and terms for communicating certain things. For example, when we get bored of each other, we say “banana spider”. He is also really inventive with new nicknames for me. I, not so much.

I really love Jeroen and want to be married for the rest of our life. Not living together has its ups and downs. Particularly in these times of corona, we’ve had to be separated more than we’d like to. Thankfully, our love has survived.

#Blogtober20

A College Memory

One of Mama Kat’s writing prompts for this week is to write about a college memory. I wrote about the very same topic on my old blog in 2016, some weeks after it was also a prompt on Mama Kat’s blog. I reread that post just now and was actually going to share the exact same memory. Now I don’t think most people who read my blog now, read my blog then. Still, I want to choose a different memory.

In 2016, I shared the memory of my first day at Radboud University as a linguistics major. I had a massive meltdown upon entering the lecture hall then, because I hadn’t known that there were over 200 students in there. I left and called my support coordinator, who took me to her office. This was the first time the psychiatric crisis service was called on me, but they said I wasn’t “mad enough” (my support coordinator’s words) to be admitted to the hospital.

Roughly eight weeks later, on October 30, I had my last day at Radboud University. I didn’t know it at the time, of course, since I wasn’t admitted to the mental hospital until November 3.

I had an exam that morning. It was my first introduction to language and communication exam. Passing this exam wouldn’t award me any credits, as the credits for the course weren’t applied until you passed the second exam some weeks later.

As always, I took a ParaTransit taxi to the university that morning. I think I had a meltdown right as I went into the building the exam was supposed to be held in, but I’m not 100% sure. I definitely had a meltdown when I was finished. The taxi driver driving me home threatened to dump me at the police station.

Regardless, I did sit in on the exam. Introduction to language and communication is basically a course in dissecting words into morphemes and sentences into their different components (no idea what those are called). That’s why the course was also sometimes called universal grammar.

Several months later, when I was home on leave from the hospital, I retrieved my E-mails. Back at the hospital, I sat down to read them. Among them was an E-mail from the director of studies telling me that the intro to lang and comm instructor had been missing me so had I dropped out? I also found an E-mail from administration notifying me of my grade on the exam: I scored 85%.

Several months ago, when my husband was clearing out the attic for our move to our current home, he found a letter from Radboud University. It was my provisional report on whether I could continue my studies or not. “Your studying results are grounds for concern,” it said. I’m so glad I never saw this piece before.

Mama’s Losin’ It

My Medication Musings: Phenergan

It’s been a while since I last did a post talking about one of my medications. Today, I want to talk about one I’ve not used in a while: promethazine or Phenergan.

Phenergan was the first PRN medication I got prescribed while in the mental hospital. I remember clearly the state of mind I was in. I had been irritable for most of the afternoon and finally burned my hand using boiling water. This act of self-harm got the nursing staff to fetch the physician. I apparently had a smile on my face when I disclosed my having self-harmed, so he said there was nothing to laugh about. Obviously not, but I struggled to express my emotions. He offered me a PRN medication. I’d heard of Phenergan before and what I’d heard about it from autistic people, wasn’t good. However, I still agreed to take it.

Phenergan, for those not familiar with it, is a low-potency classic neuroleptic. It is currently mostly used as an antihistamine to treat allergies and such.

That evening, I was totally wiped out from the effects of the medication. I just lay on the couch or in bed feeling stoned out of my mind. That was what I needed at that point.

After that, unfortunately, I was prescribed oxazepam as my default PRN medication. Some years later though, I got prescribed Phenergan again after I’d pretty much exhausted all benzodiazepine options.

Unfortunately, by then, Phenergan did nothing. I only took it to make myself and others feel like I was doing something about my distress. At one point, my new psychiatrist once I was living with my husband, even suggested I swap it for a vitamin C pill so that I would still have the placebo effect but not the side effects. Not that I was having any side effects.

A few months later, however, I took an overdose of Phenergan that landed me in the general hospital. That was when I decided not to request a refill of the Phenergan. I by that time had lorazepam, which worked some but of course had the addictiveness as a negative. However, I’m not supposed to take PRN medications regularly anyway.

My Medication Musings: Risperdal

I started this should-have-been-series a long time ago, but never got beyond the first post. Today I’m not very inspired to write, but I want to write something anyway, so I am deciding to continue with my medication musings. The medication I’m covering today, is the first daily medication I was evver prescribed.

Risperdal, which is now sold under its generic name risperidone, is an atypical antipsychotic. It was approved by the U.S. FDA for use against irritability in autistic children in 2006. I was not a child when I was prescribed Risperdal in 2007, but I was definitely irritable and autistic.

I remember very clearly when I saw a psychiatrist I’d never met before and who may or may not have read up on my psychiatric history on July 25, 2007. She had a strong Flanders accent. My CPN had referred me to her after my staff at the independence training home called her because I had been very irritable of late. Looking back, it’s no wonder, since I was due to move out of the home and into independent living the next week. But my staff were desperate and so was I.

My CPN had suggested a sleeping medicationor tranquilizer, as I was also sleeping very poorly. Not that the psychiatrist agreed, since when I reported how many hours of sleep I got at a later phone consultation, she said that wasn’t worrysome. The psychiatrist listend to my symptoms and suggested Risperdal.

I agreed without much further questioning. That evening, I wrote a blog post saying antipsychotics in autistics are a matter of really well-informed consent. The post was a response to the general consensus at the time among vocal autistics that antipsychotics should never be considered.

Looking back, while I don’t feel that antipsychotics are completely off limits for autistics – I still take one -, I do agree with another notion from said vocal autistics: psychiatric medication is no substitute for proper support. And yet, at the time, there was no convincing my staff that I shouldn’t move into independent living, so I felt I had no other option if I wanted to have somewhat of a life worth living.

And yet, I was scared. When, after two days, I started experiencing palpitations, I was extremely anxious. It happened on a Friday night when my staff were already gone. Don’t ask me how I got through that night. The next morning, I rang the out-of-hours GP, who recommended I stop taking the medication for a few days and consult my psychiatrist on Monday. Said psychiatrist didn’t believe that this could be a Risperdal side effect or I’d have experienced the palpitations right from the start. So back I was on Risperdal.

I was on a low dose of 0.5mg twice a day. My psychiatrist was in the training home’s city, so when I moved the next week, I had no psychiatrist nearby. My GP ended up prescribing my medication. When I complained to both the training home city psychiatrist and my new GP about continuing palpitations, both dismissed me. The psychiatrist even suggested I up my dose. I refused.

Because of the abrupt change in my living situation soon after starting Risperdal, I had no idea whether it was working. I was still experiencing a lot of meltdowns.

After two months, I took myself off of the medication. I more or less informed my GP, because she was really against me going off of it. I probably lowered my dose way too quickly, going from 1mg a day to 0.5mg for a week and then stopping altogether.

We will never be sure whether Risperdal worked for me, as I never went back on it. However, three weeks after stopping the medication, I started to spiral down into crisis and had to be hospitalized four days later. The crisis service psychiatrist didn’t say a thing about me having discontinued Risperdal.

An interesting thing I need to note, is the fact that Risperdal is notorious for increased appetite and weight gain. However, I experienced the opposite if anything. This could’ve been due to stress though.

A Day I Will Never Forget

I’m a day late with this topic in 7 Days 7 Posts. The Tuesday topic didn’t appeal to me and besides, I was really anxious then. Yesterday I had a lot of meetings to discusss my anxiety and the reasons for it. I made it clear that I really needed some more care and particularly more consistency and clarity in my day. I went to bed at 8:15PM, having taken an Ativan to help me sleep.

Yesterday’s topic was to describe a day you’ll never forget. I already described how I met my husband sometime during the #AtoZChallenge last April. Another day I will never forget, though for less pleasant reasons, is the day I landed in crisis in 2007. I probably described that day a few times before already, but right now I can’t find where. If you’ve read this before, I apologize.

On November 2, 2007, I was in my parents’ city to get a landline phone I wanted to use in my student apartment. The reason I wanted a landline was the fact that I was scared of mobile phone radiation causing Alzheimer’s. It’s weird that now I use my iPhone like all the time and don’t worry about it much.

I had come to my parents’ the previous evening and was planning on going back home to Nijmegen that Friday afternoon. However, on the train station, I had a meltdown. The police were called and removed me from the station.

I went to the independence training home where I used to live until that summer. I wasn’t really sure what I wanted, but I needed to look up some phone number on my laptop. I knew I shouldn’t go back to my parents’, as they’d probably be angry with me.

After having called whoever I needed to call, I wandered around the training home neighborhood for some hours, not sure what to do. At one point, a fellow client at the training home realized I was struggling, so she offered me to come into her apartment and stay for the night, so that we could find a more long-term solution the following day. However, the staff came to her and told me to leave. They weren’t going to take responsibility for me.

At that point, I had another meltdown. I walked to the nearby bus stop, catching the 8:01PM bus to the train station. In my memory, it was still light outside, even though that’s not possible at such a time in early November. I called my support coordinator to let her know I was going to commit suicide. The bus driver overheard me and called the police.

I was terribly scared, because the police had kicked me off the train station that afternoon. However, I willingly went with them to the police station. They called someone called a community physician, who is in charge of triaging people not known to that city’s mental health agency. He was a really blunt man, telling me that I made people feel responsible for me in a way as if I was just seeking attention. He even used a kind of threatening voice when he said he was going to call the crisis service. I didn’t mind.

The crisis service psychiatrist and CPN came out to the police station. After assessing me, they asked me what I wanted. To this day, I’m not sure whether I really didn’t know what I wanted or felt too embarrassed to ask for help. After all, when talking to the behavior specialist for my current care facility yesterday, I also said I didn’t know what I needed even though I did. Anyway, the psychiatrist proposed that I be admitted to the mental hospital and I agreed.