Reflecting on My Life: 2003

Last night, I couldn’t sleep. I was looking for some link-up parties to join in and came across the Life This Week linky. In this week’s edition, host Denyse shares her memories of the year 2003. As this is my first time participating in the linky, I should really start my story from the beginning on, but for some reason, I can’t.

I may have shared this before, but in secondary school, I always had this superstition that life ran in circles. There’d be a year of struggle and crisis, a year of renewed hope and finally a year of disillusionment, after which I’d spiral back to struggle and crisis. The year 2003 was a year of disillusionment.

In 2003, I was sixteen. I turned seventeen at the end of June. I was in the tenth grade for the first half of the year and in the eleventh for the last half.

In the summer of 2002, I had barely moved up a year. My grades weren’t that good and I only moved up because I worked very hard the last few weeks of the year. I had been struggling with feeling like an outcast due to my blindness the entire 2001/2002 school year. That was to change by late 2002, or so I believed. My high school tutor promised me he’d help me feel better.

What he did was come up with a social skills assessment for blind students and have the teachers fill it out. That was no good for my self-esteem, as I showed considerable weaknesses. No-one knew at the time that I was also autistic, even though I suspected it.

The year 2003 was the year I started to learn about myself from a possibly autistic point of view. Even though I had started suspecting I was on the spectrum in mid-2002, I didn’t feel comfortable joining online support groups for it till 2003.

This was also the year I expanded my horizons where it came to using the Internet in general. I had gotten an Internet connection in May of 2002. By April of 2003, I started keeping an online diary on DiaryLand, which several years later morphed into my first WordPress blog.

In the summer of 2003, I attended the International Computer Camp for blind students in Switzerland. I had attended it the year before, when it was held in England, too. This year, I felt a bit disappointed in the end, because it didn’t provide me with the cathartic experience I’d felt the year before.

In 2003, I also explored fictional storytelling as a way of expressing myself. I was experiencing some significant selective mutism at the time, which I could circumvent by pretending I wasn’t talking about myself. This is how my “mirror image”, Kirsten, came to be. She is one of my main alters to this day.

Finally, this was the year I was first starting to explore future planning. Here in the Netherlands, students with disabilities attending mainstream education didn’t get any type of special transition planning at the time. I was expected to just get by and go to university straight out of high school in 2005. In 2003, I started to doubt this would be a success, but I didn’t voice my doubts yet. As it is, I didn’t actually make it clear that I wasn’t going to university right out of high school until April of 2005.

Where were you on the path of life in 2003?

Empathy

I’ve been thinking about empathy lately. A few weeks ago, I wrote that I have been looking at my personality from a highly sensitive person or empath theory perspective. Though this is still somewhat fitting, I indeed experience this strange mix between low empathy and hyperempathy.

I mean, I pick up on the general atmosphere in a room pretty easily. I also absorb others’ emotions. I feel when other people are sad or angry in distress. I cannot pick up on happiness as easily, but I’m learning.

Then again, when presented with a social situation, be it in theory or in real life, I show very little empathy according to neurotypical standards. I have absolutely no idea how to articulate how people are feeling.

I recently saw a post by Ashley on alexithymia. Ashley contrasted alexithymia with borderline personality disorder, in which people are overly emotionally sensitive. Well, I have both. Or maybe I just have the autistic women’s general mix between high and low empathy.

The interesting bit about alexithymia is, when being assessed for it in 2017 as part of my last autism assessment, one of the scales was on interest in talking about emotions and such. I scored normal if not high on that one. Similarly, when taking personality tests like those based on the MBTI, I usually score higher on feeling than thinking. That’s because I somehow want to see myself as a sensitive person. That doesn’t necessarily mean that I am though. Like I said before, my husband sees me as an obvious INTJ.

My community psychiatric nurse signed me up for a psycho-education course on autism this past week even though I know quite a bit about it already. Looking over all the criteria, I thought: “That must be so hard to deal with… Oh wait, that’s supposed to be me.” There was a bit about lack of empathy too and that made me feel awful. As much as I “wanted” an autism diagnosis when last assessed for it, I don’t want to be seen as having low empathy.

This post was inspired by today’s RagTag Daily Prompt.

When I Was Five

This week it’s 29 years ago that I spent a week in the children’s hospital with a collapsed trachea. It closed up on the night of April 28, 1991, the night after we’d celebrated my mother’s birthday, two months before my own fifth birthday. I was unquiet all night or so I’m told, getting up to go to the bathroom a dozen times. Eventually, my parents discovered what was going on and I was rushed to the hospital.

Thankfully, my trachea opened again within a day or two. I don’t know whether I had to be on a ventilator. In fact, I remember very little of these first few days. Then, on May 3, I had surgery to take out my tonsils and adenoids. That surgery had been scheduled for May 21 at another hospital anyway, but the children’s hospital could fit me in earlier now that I was there anyway.

After surgery, I had to stay in the hospital for another few days because I had a breathing tube inserted. That is, I’m not 100% sure the breathing tube was before or after surgery. I remember trying to talk through my tube, which was pretty much impossible.

This was probably also the time in hospital that my parents brought me their supermarket’s brand of peanut butter to eat, as I wouldn’t eat the premium brand the hospital had. Can you tell I was spoiled or autistic or both?

Finally, I got home on May 7. I was already a calendar freak, so I actually remember this without having been told.

As I write this, my inner five-year-old is trying to speak up, but she can’t. I don’t know whether this hospital stay was particularly traumatic for me, even though the going to the bathroom compulsively became a habit of mine in my teens. I may have made Lisel (that’s my inner five-year-old) up, because after all I remember this particular hospital stay so well.

I do think falling ill in early 1992, was more of an adverse childhood experience for Lisel (or me, if you think Lisel is made up). I remember I had some form of the flu, but in my own memory, it wasn’t entirely medically explained. My parents will probably say I’m trying to find clues that aren’t there so am making them up. I mean, they never talked about this experience when, in my teens, I was trying to remember when my negative mood started. They claim, as did I at the time, that it started when I was seven and having to learn Braille. In other words, I was going blind and I knew it but refused to accept it, so was becoming defiant to show a middle finger to the world. It’s easy to say it doesn’t matter. In a way, it doesn’t, but too often, I feel my parents are hiding the truth from me as a way of denying that I had significant mental health issues before the all-important age of seven. I mean, if my problems started at seven, I cannot possibly be autistic or have a dissociative disorder or anything originating in early childhood, right? Besides, I could have been old enough to be manipulative.

Am I being manipulative indeed? Or am I an early childhood trauma survivor? I don’t know and I’m not sure Lisel knows the answer.

Joining in with V.J.’s Weekly Challenge.

Top Ten Books Younger Me Would Have Loved

I’m a day late joining in with Top Ten Tuesday (#TTT), for which the theme this week is books your younger self would have loved. I wasn’t much of a reader as a child. I loved being read to, but hated reading myself, especially in Braille. I was fourteen when I first discovered reading for pleasure through Caja Cazemier’s books.

I didn’t know enough English to read any of these books at the appropriate age. Actually, I didn’t know enough English to actually understand most books much until I was at least fifteen. Even then, only classics were available in accessible formats here in the Netherlands. For this list, I’m pretending that either younger me knew enough English or the books were available in Dutch. Most of these books weren’t published when I was young anyway.

1. Peter’s Asparagus by Angela Nicole Krause. This is a chapter book about a young boy with Asperger’s (autism). I read it in early 2014 and loved it. Of course, younger me didn’t know I am autistic and Asperger’s wasn’t even added to the DSM as a diagnosis till 1994, when I was eight. Still, well, my inner children find it incredibly validating.

2. A Boy Called Bat by Elana K. Arnold. This is a book for slightly older children on the same topic. I read it in like 2018 and really feel it would’ve been a delightful read for younger me, even though it isn’t as relatable as the above one.

3. Deaf Child Crossing by Marlee Matlin. I didn’t finish this one, but I think my younger self would have loved to read it.

4. Lila and Hadley by Kody Keplinger. Okay, I see a theme emerge here. This one wasn’t published till a few weeks back and I haven’t read it. I want to, but it’s nowhere to be found in Dutch eBook stores. This one would definitely have encouraged younger me.

5. Amina’s Voice by Hena Khan. As a child and tween, I loved learning about different cultures. There was a whole series of children’s books about different countries and cultures out there back then, but as far as I know, the authors weren’t from those cultures. Khan is Pakistani-American and I loved her book. See my review.

6. Pictures of Me by Marilee Haynes. I read this one over New Year’s and loved it. It’d for sure be a comforting read to fifth-grader me.

7. Wonder by R.J. Palacio. I am 75% done with this one and think it’d for sure have given younger me some perspective.

8. Unspeakable by Abbie Rushton. Okay, I’m branching out into young adult books now. I really loved this one when I read it some five years ago and teen me would have loved it too.

9. Scars Like Wings by Erin Stewart. This would definitely have comforted teen me that she’s not alone in having problems. See my review.

10. Diagnosis Asparagus by Catherine O’Halloran. Okay, there are no doubt a ton of other books in the fiction category that younger me would have loved, but I just had to include this one. This one provides a teen’s perspective on being diagnosed with Asperger’s.

As a bonus, I’m going to mention Freaks, Geeks and Asperger Syndrome by Luke Jackson. That one was published around 2003, when I was self-diagnosed with Asperger’s. I would have loved it if my parents had allowed me to read it then.

What books would you wish your younger self had had access to?

X-Patient: Psychiatric Rehabilitation and the Recovery Movement #AtoZChallenge

Okay, welcome to my letter X post in the #AtoZChallenge. I’m not really motivated for this one, but I don’t want to give up on the challenge either. My topic today doesn’t really fit in with the rest, but well. Today I’m writing about what it is like to be an ex-psychiatric patient. In the anti-psychiatry movement, some people choose to write this without the E, so it counts.

When I first heard of psychiatric rehabilitation around a year into my psychiatric hospital stay, I hated the entire concept. It was all based on training people to be more independent whether they wanted to or could do this at all. I knew already that I needed long-term care, so I was like: “Didn’t I just complete 18 months in a training home only to have it fail?”

Then, a few years later, I heard of the recovery movement. Unlike psychiatric rehabilitation, this is entirely patient-led. I signed up to participate in a recovery course. What surprised me immediately was the fact that my mental hospital chose to only allow those staying there as inpatients on the course. They later started a course for outpatients too. I loved this course. Going into long-term care wasn’t frowned upon but seen as a means of getting my life back on track. Unfortunately, that’s not how most professionals, at least on my last unit, saw it.

A few weeks ago, I watched a short video on a Center for Consultation and Expertise case in which the recovery viewpoint was misapplied to an autistic man. Indeed, I’ve never felt that concepts like “rehabilitation” apply to autistics. I mean, the idea that we all want a meaningful life, is good. However, considering a meaningful life as the same as independent living, is in my opinion rather misguided.

#WeekendCoffeeShare (April 26, 2020)

Hi all, how are you all doing on this fine Sunday evening? I just had a drink of my favorite soft drink, called Dubbelfrisss. I had my favorite flavor too, apple and peach. I also had some chips. If you’d still like a cup of coffee, I’m sure I can make some for you. I’m joining in with #WeekendCoffeeShare.

If we were having coffee, I would tell those of you who follow me from the coffee share linky that I’m rather active in the blogging department. I’m still going strong with the #AtoZChallenge. I in fact still have a long list of things I want to blog about even after this challenge is over. I really hope the writing juices keep flowing.

I did downgrade my WordPress plan from Premium to Personal. I, not being very tech savvy, can’t use most Premium features anyway and I don’t need the upload space, as I hardly ever post images. The only thing I used from the Premium plan, was Google Analytics, which was rather depressing.

Also in the tech department, I’d like to tell you that I’ve been struggling for weeks to get an eHealth app called Minddistrict working. Somehow, the E-mail that should have been sent to me to sign up, didn’t reach me. My CPN from mental health contacted some guy in IT about it, who replied rather bluntly that his role is not to teach clients to look in their spam folder. Well, if that had been the problem, my CPN could have told me. I’m not stupid! I eventually contacted my hosting provider, who want to look into it but need the headers of the bounce message Minddistrict should have received. My hosting provider was trying to be very helpful, but still the whole thing frustrates me to no end.

If we were having coffee, I would tell you that I reached my 10K steps three out of the seven days of this week. On two more days, I got over 8K steps.

I also got weighed in on Thursday. I didn’t use the same scale I normally use, because that’s at the day center. As such, my results may not be accurate. However, if they are, I lost over 1kg. According to this scale, I just about crossed the line back from obesity to overweight. Yay!

If we were having coffee, I would share that the client who came to our home as an emergency placement two weeks ago, left again yesterday to go to a more suitable home.

If we were having coffee, I would share that I’ve been exploring personality traits a bit more. Like, I’ve joined some Facebook groups for what I think is my MBTI personality type. Most other people see me as INTJ, but I honestly think I’m more INFJ, as the feeler/thinker dichotomy is based on how you make decisions. Note that I learned in psychology class in college that one changes personality type about every month if dichotomous scales are used. I’m a clear introvert, but have no strong preference on all three other determiners. I’ve heard cognitive functions can make the MBTI more reliable, but I find most tests that include that pretty inaccessible.

I also have been exploring the concepts of HSP and empath. I read Elaine Aron’s book The Highly Sensitive Person in Dutch back in like 2006. I downloaded the 2013 English edition on Bookshare a few days ago and got some books by Dr. Judith Orloff too. It does remind me that, when the Dutch translation of one of Aron’s books first came out in 2004, my father read me a skeptical article in the newspaper about everyone needing labels nowadays. He said I was an “asparagus addict”, making a bad pun on the Dutch word for asparagus being similar to Asperger. That got me to stop self-identifying as autistic. Well, I guess I don’t care now.

What have you been up to lately?

Valid? #SoCS

I’m not sure I’m valid. I joined some groups for highly sensitive people and empaths on Facebook. I relate to literally almost every trait associated with being an HSP/empath. Then again, I’m also autistic and this means I don’t have the cognitive ability to know what’s expected of me in social situations.

I’ve heard there’s some theory about autistics being hyperempathetic where it comes to feeling others’ emotions but less able to know what another person needs. Something with cognitive empathy being lower than emotional empathy. Or was it the other way around? I have no idea and am too lazy to google it now.

I always feel like I want to see myself as a lot more positive than I am. I mean, some people close to me have said I even have some narcissistic traits. Some people think of me as a pretty stereotypical autistic and I’ve always felt good about that, as it validates my feelings of being different and my need for support. Empath/HSP only validates my feeling different.

Yet sometimes I feel that my seeing myself as somehow highly sensitive, is a way of obscuring my negative traits. It’s not that I don’t see them, but that I label them positively in a way. I mean, 90% of empathy traits are worded at least somewhat negatively. For example, have you been told you are “too sensitive?” Do you need alone time a lot? When a friend is distraught, do you feel it too? Heck, I sense negativity a lot, but isn’t that just me being a generally negative person?

I have a feeling that part of the reason I want to see myself as unique somehow, has to do with an external locus of control. I don’t want to see my huge flaws and instead go label them as assets or blame them on my childhood trauma.

And yet most people say I have a negative self-image. My CPN from mental health wants me to do a module of cognitive behavior therapy on helping me get a better self-image. Maybe I need to learn to see myself as just the ordinary person I am without either negative or positive stuff that make me different. After all, when I say I’m a pretty good writer, people close to me often say: “Well, about average for someone with your education.” Apparently I’m quite arrogant in this respect.

So am I allowed to feel different or is that just an excuse to set myself apart from the herd? Remember, feeling like you can only be understood by certain people, usually those with high status, is a narcissism trait in the DSM. I’m not sure. I want to feel okay about myself, but doesn’t that mean seeing my negative traits too? And seeing them as well as the positive ones for what they are: just traits? I guess I’ll learn this in the module.

I’m joining in with #SoCS, for which the prompt today is “val”.

A New Client Came to Our Home

Trigger warning: mentions eating disorder behaviors
So a new client came to our care home yesterday. It was completely unexpected also to the staff. They didn’t hear she was coming till Friday evening. She has some form of brain injury, dementia and she broke her hip, which is why she had to come here. She lived independently until this. She seems okay, but due to her dementia she needs a lot of support. This did upset some of us, particularly Rachelle. It completely wrecked with her sense of structure and also the trust she had in the staff.

Today we had an Easter dinner. We had had the choice between pizza or fries. We chose pizza, but weren’t sure about it after all, as everyone else got fries. This further upset us, particularly Agnes. Agnes was feeling off, so she wanted to binge, but the staff prevented her, saying she was full already. This led her to a teenage tantrum.

Then once we talked to her about the importance of sticking to a somewhat healthy diet, she wanted to purge. Thankfully we were able to talk her out of it. Then however Rachelle took over again, with me (Eleanor) being present too. We were able to articulate our feelings to some extent.

Part of the problem is Agnes wants to be independent and make her own choices, including unhealthy ones, but Rachelle really needs more support than we’re currently getting. Thisdispute between them was also triggered by the new client getting pracctically one-on-one support all day, while we were in our room by ourself a lot. There is an extra staffer for the new woman, but we still feel like a burden.

We talked to our assigned staff about maybe making some form of communication cards that don’t require speech, so that Rachelle (and others) can ask for help when we can’t quite talk. We also talked about us getting a more structured daily routine particularly on week-ends.

We’re not sure this will help, but we’ll see.

Eleanor with some others chiming in here and there

#AutisticBliss Is…

A few days ago, I came across a discussion on Twitter with the hashtag of #AutisticBliss. I don’t follow many autistic bloggers, so I cannot be sure the conversation has been taken over to WordPress yet. Regardless, I wanted to write a blog post in contribution to the topic. Here are a few things I consider sincere bliss as an autistic person.

1. The sensory room at the day center. I mentioned this in my Twitter reply too. Back when I was trying to prepare for leaving the mental hospital in 2017, I asked my psychologist whether I could try out snoezelen® at the intellectual disability unit. She said I couldn’t, as it is only offered to people with severe intellectual disability. I’m so extremely grateful I ended up attending a day center for people with intellectual disability once kicked out of the hospital. Ever since, I’ve come to very much enjoy the sensory room.

2. My own sensory equipment in my room. When at my first day center after leaving the psych hospital, I discovered an online sensory equipment store while looking for birthday presents for myself. I currently own two lavender-filled, microwave-safe soft toys from that store, one in my room at the care facility and one in our house in Lobith. I also have a lot of soft toys that aren’t specifically sensory. I enjoy my exercise ball too, as well as my essential oil diffuser.

3. Being able to hyperfocus on my special interests. One of the main autistic characteristics I love about myself is my ability to perseverate. I love it when I’m in hyperfocus mode and actually have an interest I’m passionate about.

4. Being able to collect things, particularly if they’re cheap or free. For example, I have at least a dozen books of journaling prompts on my phone. Most were free either on Kindle or in Apple Books. Now that I am more money-conscious than I used to be, I no longer spend as much on my special interest du jour. However, I really love collecting free stuff.

5. Stimming. Especially if I’m happy. Stims were often so discouraged that I struggle to find ones I can engage in for fun, but when I can, that’s utter bliss.

6. Having found my tribe. I love being part of the autistic community. It helps me feel that I belong somewhere.

What surprising aspect of life do you find is utter bliss?

Writer’s Workshop: If I Could Change One Thing About Myself

Mama Kat in one of her prompts for this week asks us what one thing we would change about ourselves if we could. She also asks us to think on why it can’t be changed.

This is pretty much a no-brainer to me. If there’s one thing I could pick to change about myself, it would be to widen my window of tolerance. The window of tolerance is the window at which point someone is stimulated enough that they aren’t bored too much, but not so much that they are overloaded. Each individual’s window of tolerance is different. Some people thrive on challenging activities and exciting stimuli. Others can barely handle any sensory or cognitive demands. I belong to the latter category.

If I’m correct, the window of tolerance also refers to the ability to tolerate distress or frustration. My distress tolerance is and has always been extremely poor.

So why can’t it be changed? Well, I tried. Ever since I was a little child, psychologists have recommended I work on distress tolerance. Now I must say I really wasn’t aware of the problem at all until I was about eleven, but even when I was, I had no idea how to heighten my distress tolerance.

My tolerance for sensory and cognitive demands was manageable up until I suffered autistic burnout at age 21. I mean, I was in classrooms with 30+ students in them, doing my schoolwork at a high level high school. Ever since my burnout though, I’ve hardly been able to function in group settings without getting overloaded. I also can’t seem to handle any sort of pressure.

In 2017, when I was being kicked out of the psychiatric hospital, it was recommended that I do dialectical behavior therapy (DBT). One of the modules of DBT is distress tolerance. The community psychiatric nurse (CPN) who started DBT with me, even wrote increasing my frustration tolerance as a treatment goal without my having asked her to. I didn’t see how I could work on this. After all, seeing this goal written on my treatment plan already created such immense pressure that I felt overloaded without even trying to work on the goal.

I know I have a bit of an external locus of control. This seems to be tied in with poor distress tolerance. I mean, it isn’t that I genuinely think the world owes me a sensory-friendly, low-demand environment. However, I can’t see how I can work on changing my ability to handle sensory stimuli, demands and distress.

Mama’s Losin’ It