Fear (Or Another Four-Letter F Word)

Posted on by Astrid

Fear. I’ve used this word as a starting point for my writings many times. The idea comes from Mari L. McCarthy’s journaling prompts. The idea is to pick a four-letter F word and write about it or use it as a prompt. Well, I’m doing that now, but I doubt I’m actually going to write about fear. I honestly don’t know what to write at this point and am not feeling anything in particular. That is, I guess I “should” be feeling something, but I don’t know what. Alexithymia. That’s what I believe this is called. Any emotional state for me is “good”, “bad” or “neutral” like right now. I don’t ever feel totally relaxed I believe. There’s always some level of stress or anxiety or fear in my body or mind.

My movement therapist tries to tell me that my body needs to get used to the feeling of being relaxed, because due to my early childhood trauma, it never learned to trust this feeling. That makes some sense, in that I almost always feel like I’m on high alert even when I’m half asleep. Is that even possible? And if so, isn’t it just normal? Do I even know what “normal” is, being that I’m autistic and otherwise neurodivergent, multiply-disabled and a trauma survivor? I doubt it. But if I’ve lived my life like this for nearly four decades, is there any way of changing it? I hope there is, because this feeling of always being on high alert is exhausting.

This is another freewrite I originally typed up in Google Keep, then finished here.

Disabled Ace Day

Posted on by Astrid

Hi everyone. I once again haven’t been active on the blog much. I’ve been listening to a lot of podcasts lately, mostly true crime. Today though, I decided to check out the podcast The Ace Couple. In their most recent episode, which came out today and which I’m currently listening to, the podcast hosts said that it’s disabled ace day today. Ace, for those not aware, is short for “asexual”.

Like I shared when writing my post for coming out day, I’m for the most part asexual. I’m still figuring out where exactly I fit on the asexual spectrum. For those who don’t know, since sexuality isn’t an all-or-nothing thing, asexuality is a spectrum describing anyone who experiences significantly less sexual attraction to other people compared to the general population. People who are not asexual, are commonly called allosexual (“allo” being Greek for “other”). This also clarifies that people on the asexual spectrum, even people who are altogether ace, may experience sexual desire and pleasure.

I do not claim to be an authority on asexuality. Had I been able to be open about my queerness all this time, I might’ve been able to gather more information without feeling guilty. Like I said, I’m still figuring things out.

This is also where disability comes in. Commonly, it’s thought that disabled people, particularly those with intellectual or developmental disabilities, don’t experience the same sexual feelings as non-disabled people do. This is simply not true, although disabled people are more often taught to suppress our sexual feelings. After all, particularly those with intellectual and developmental disabilities are too often seen as “children in adult bodies”. I myself have used these analogies when describing emotional development. Because it finally enabled me to get sort of okay care, this analogy appeals to me even though it’s inherently ableist.

When a disabled person identifies as asexual or somewhere on the ace spectrum, it is then too easily thought that this is because of the way the person was raised or educated. This is the counterstereotype I so often used to talk about in my early days on WordPress (oh my, I need to bring some of those old posts back): if we want to defeat the idea that disabled people can’t have sex, asexual disabled people could be seen as harming the cause, similarly to how I’m seen as harming the cause for community-based support by living in an institution. In reality though, prejudice and oppression are systemic, not individual. Besides, it’s not our job as marginalized people to fit ourselves into society’s neat boxes, whether these are stereotypes or counterstereotypes or other ways of telling us who we are and how we should live our lives.

This doesn’t mean I’m not influenced by prejudice. Regularly, I think I’m too disabled for a relationship and that’s why I’m ace. I’m pretty sure that’s not true, as I do have many years of being in a relationship with my wife before either of us clarified our authentic needs and wants to the other. I remember writing a post back in 2008, which I’m not going to bring back here (don’t worry, wife!), in which I described not knowing whether I was actually attracted to her and thinking I certainly wasn’t interested in sex. If that doesn’t tell me I’m ace, what does?

The more I write, the more memories confirming that I’m indeed asexual, come to mind. I was quite repulsed as a teen, purposefully skipping the biology chapter on reproduction and refusing to read the sex ed material that my parents brought me at around age nine. Then again, I’m pretty sure my refusing to read it was because I hated reading Braille at the time and my parents made quite a big deal of me reading this book.

However, what if my asexuality is in fact related to my being multiply-disabled, including autistic? Does that mean I’m doing the disabled or autistic communities a disservice? I don’t think so, because like I said before there’s no value in dictating who I am. Besides, as someone who lived for twenty years not knowing she’s autistic and yet who was autistic all along, chances are we’ll never know for sure.

I’m joining in with #WWWhimsy.

Care Needs

Posted on by Astrid

Last year, when I was first feeling like I was falling apart at my current care home, I wrote a list of my “needs” and E-mailed it to my assigned staff and support coordinator. I heavily watered down my wishes, thinking a need isn’t the same as a want and whatever comes out of a discussion of my needs, should be working for everybody involved, not just me. For example, I asked for more clarity on what activities I’d be doing each day and offered to use my whiteboard, but also said staff could just ask me what I thought I’d be doing and help me find a suitable activity; this last one was then put into my day schedule, ie. “Staff upon leaving asks Astrid what she’s going to do next”. Needless to say, this didn’t work for me, being autistic, at all, as it leaves the same amount of unstructured chaos as the old wording, which was simply that I had “alone time”, did.

Now, more than a year later and with the Center for Consultation and Expertise involved to help me and my staff improve my quality of life, I’ve written another list, but this time, it doesn’t offer solutions for my unmet needs; rather, it’s simply a list of problems I encounter at this home. In a way, I feel that being solution-focused should be more constructive, but then again this time I have the consultant to think up possible solutions to come closer to meeting my needs.

This post was written for the Six Sentence Story linky, for which the prompt this week is “need”.

Am I a Monster?

Posted on by Astrid

Hi everyone. I’ve been struggling really badly once again. Nearly three weeks ago, I had an outburst that caused the second staff so far at this home to request to the team manager that she not be required to support me for a while. This staff used to be one of my three assigned staff. Another was a student and has since left this home to continue her education at the intensive support home I used to live at. The third one is still my assigned staff, but she only works a day or two a week.

With the staff who previously requested to not support me for a while, I’ve since talked things over, though she still refuses to be honest about the thing that got me to be angry with her, ie. her using literally every opportunity to assign me a temp worker. Because of this, I’ve felt like I had to apologize for my anger (which I see is necessary) but she wouldn’t have to apologize for or explain her behavior that upset me. With the current staff, I don’t have this issue, but I do mistrust her for having pretended to have talked it over then decided she couldn’t handle it anymore a few days later.

I realize part of the problem is my attachment anxiety. As a result of this, I mistrust people who try to come close and be there for me, because I know that if they truly knew me, they’d reject me. Which is, of course, true in theory at least: no-one in life is there for anyone else unconditionally. And, given that I sometimes don’t know who I truly am, I worry that I’ll be worse than even I can imagine if I let my guard down.

Of course, it’s also a self-fulfilling prophecy, as you can see from the fact that two staff in the past year have already rejected me. The current one even claimed she wouldn’t.

Even if I’m in the midst of severe self-doubt, I am (almost) certain that I won’t become physically violent if I let my guard down. The problem is that words hurt too, and I can unfortunately say quite nasty things even without meaning them. I mean, there’s been one instance, back at the intensive support home, when I hurt someone’s feelings with a literal personal attack: I said that it was her fault that she got hurt during a fellow client’s outburst. This staff never requested to not support me anymore. With the two who so far did here, my comments weren’t intended as they came across and, while they could literally be seen as hurtful, I didn’t mean them personally and had no bad intentions whatsoever.

I struggle intensely with this knowledge, that I don’t intend to hurt people but that I do it nonetheless. I also struggle to figure out a way to stop this. After all, they are not insults that caused these staff to reject me (though I called them both bad names too). If they were the insults, it’d be doable to erase these from my vocabulary, as I’ve mostly successfully done with certain other words. However, like I said, they were their interpretations of my comments about how they don’t know me that hurt their feelings. This is harder for me to process, as it means being aware of every possible interpretation of something I literally say. This is quite hard for me as an autistic person with virtually no cognitive empathy.

Besides, as I now realize, I probably have low emotional empathy too, as I wasn’t able to predict that the staff was just going through the motions when I thought we’d talked things over. She in fact supported me through an intense movement therapy session and I didn’t pick on her struggling at all. This makes me feel even worse than the fact that I didn’t realize at the time that my words were hurtful.

This low emotional empathy realization makes me feel like I’m a monster. Aren’t autistics supposed to have high emotional empathy? Aren’t psychopaths and narcissists the ones with low emotional empahty? I mentioned possibly being a narcissist to my wife and she denied I am. Then again, aren’t narcissists masters at making their loved ones believe they are the victim? Is all this my attachment anxiety talking, or is there some truth to the idea that I don’t deserve to be supported?

Do I Have a Mental Illness?

Posted on by Astrid

Hi everyone. Several happenings today, including my reading today’s Friday Faithfuls post, made me think about the question whether I have a mental illness. Or should I say mental health condition? Is there even a difference?

People who know me, may be surprised at the fact that I even ask this question. I mean, of course! I spent nearly a decade in a psychiatric hospital. Then again, when I was first admitted, the psychiatrist deciding to admit me made it very clear that she wasn’t diagnosing me with a serious mental illness. I had a diagnosis of autism, of course, which though it is in the DSM and though here in the Netherlands it falls within the realm of psychiatry, isn’t technically speaking a mental illness. To be added to this diagnosis was adjustment disorder, which in short means an inability to cope with the stressors of daily life. Nowadays, people with this diagnosis alone don’t qualify for mental health services, let alone admission to a psychiatric hospital.

But once I was in the system, numerous mental health diagnoses which may fall under the realm of mental illness, were added. My first was impulse control disorder not otherwise specified, which I’m pretty sure was just a way of explaining away my meltdowns without admitting they were due to less than adequate care. I often wondered why they singled out impulse control as the only issue on which they gave me the vague “not otherwise specified” diagnosis. I guess it’s because, unlike my anxiety, depression, disordered eating, etc., my meltdowns did bother other people.

Then, several years later, came (complex) PTSD and dissociative identity disorder. These are mental illnesses, but they are caused by overwhelming circumstances, just like adjustment disorder.

Later came borderline and eventually dependent personality disorder. Finally, I was diagnosed with recurring depression in 2017.

All this to say, whether I have a mental illness or not, isn’t as straightforward as it may seem. I do know that my current care plan lists “mental health problems” as a general “diagnosis”. I honestly try not to care about the specifics of my diagnosis, but I’ve learned the hard way that the specifics can be used against me. For example, when I had the personality disorder diagnoses, I was kicked out of the psych hospital with almost no aftercare because of allegedly misusing care. I wish the higher-ups would look beyond the labels and at the individual.

Neurodivergence and Emotional Dysregulation

Posted on by Astrid

Hi everyone. On Monday, I listened to an episode of the Navigating Adult ADHD podcast. It was on emotional dysregulation and it’s been on my mind ever since.

I don’t have a diagnosis of ADHD, but have wondered for years whether my emotion regulation issues are “just” autistic meltdowns, whether I have borderline personality disorder like my psychologist in the psychiatric hospital used to believe, or whether something else is going on. So far, I haven’t found a satisfactory answer and, with that, I have not found something that helps.

I tried a ton of medications but none truly helped me, except for maybe my antidepressant. That is, obviously my antipsychotic did lessen my emotional outbursts, but it didn’t do so in a pleasant way. In fact, I only felt irritability or I felt nothing. That’s not emotion regulation but being numbed down too much.

I tried dialectical behavior therapy, which I still believe could’ve been helpful if the clinician hadn’t been so horribly invalidating. I mean, there’s quite a world between going along with every single emotion I describe without question (which I realize could be counterproductive) and telling me, albeit implicitly, that my entire way of experiencing things is invalid. I haven’t been involved with DBT for long enough to know whether it in itself is invalidating or whether it was just the clinician being judgmental.

In the podcast, the speaker described six ways in which emotional dysregulation can show up. I related to all of them, though some more than others. For example, my low frustration tolerance is truly debilitating. So is my inability to calm down. I literally still fret over things that happened at the intensive support home and these influence how I react to my current staff. My spouse and I also regularly fight over both of our (but more so my) inability to let go.

The things I relate less to, interestingly, are things I see as relatively “positive”. For example, I do get slightly over-excited at times, but not to an extreme degree. Then again, the fact that I don’t experience it to an extreme degree, is probably why I see it as “positive”: after mulling over negative things for weeks, I’d love something to get overly enthusiastic about. In reality though, finding a new hobby and buying all the “needed” supplies within hours, isn’t actually good for me financially. I just wish I’d experience that rush of excitement. Then again, when, rarely, I do, it often leads to even lower lows afterwards.

I’m joining in with #WWWhimsy.

#WeekendCoffeeShare (July 12, 2025)

Posted on by Astrid

Hi everyone. It’s been a full week since I last wrote a blog post. I really would like to write more, but I’m struggling massively. Today, I’m once again joining #WeekendCoffeeShare. It’s 7:30PM, so no more coffee for me. I didn’t end up having the green tea I mentioned last week, but I might today. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Honestly, I can’t remember what the weather was like early in the week, but the last few days, it’s been good: partly cloudy with some sunshine and daytime highs around 25°C.

If we were having coffee, next I’d tell you that I’m still going strong with my movement goal on my Apple Watch. I never ended up doing those fitness mat exercises I mentioned last week, because I had to cancel my movement therapy session this week. I’m hoping I can do some exercises next week.

If we were having coffee, then I’d share that I’ve been quite depressed lately. On Sunday, I was even talking ending my life and, on Monday, I had a meltdown in which I self-harmed.

The staff who witnessed me talk suicide and who was the only one able to comfort me after my meltdown, asked the behavior specialist and team manager to come and talk with me. This meeting took place on Wednesday morning, but another staff attended it with me. I was masking heavily during the meeting and constantly rationalizing my feelings away. The team manager at the end said that he was glad I was doing okay, because there’ll be a time when he won’t have time for a meeting. That plus something about things possibly getting worse. This caused my thoughts to spiral and this got me intensely desperate. I was able to tell the staff who’d attended the meeting with me, that this comment caused me distress and she would try to relay this to the team manager.

When, about an hour later, the staff who’d witnessed my meltdown etc. came on shift, I expressed my despair to her, By this time, I was inconsolable. I cried and cried and cried and was intensely hopeless.

Finally, the staff contacted the behavior specialist, who came again to talk with me and this staff. This was an okay meeting. I’m still skeptical things will improve, but not entirely hopeless.

If we were having coffee, I’d share that I’ve been reading some books about autism by autistic authors. One is The Autistic’s Guide to Self-Discovery. I’m unfortunately struggling quite a bit to concentrate on it, which in turn reinforces the belief that I’m too broken to benefit from it.

If we were having coffee, lastly I’d tell you that my best friend’s mother came by on Thursday. She brought the new nightstand that she and my best friend had bought at Ikea to replace the one that broke when I fell over it several weeks ago. She also brought me a birthday present: some colors of Sculpey Soufflé, which is a brand of polymer clay I don’t have yet.

We went to have lunch at Hema and then went to the supermarket to buy blueberries and candy bars for me and carrots for her. I also told her about my state of mind, since she’s currently my informal representative. I do want to make my best friend informal representative for me too, especially once we’re formally divorced. I still want my now mother-in-law on it too because she has the capacity to attend meetings with me. However, I mostly want to make sure that in no way are my parents or sister contacted to make decisions about me.

Blindness Doesn’t Bind Me

Posted on by Astrid

I am blind. This is, in a sense, an advantage. Not because it means I’m more capable in some way than sighted people. Of course, I could be more capable than some sighted people in some ways, but that’s not due to my blindness.

I say my blindness is an advantage in that it allows me an easy explanation for my challenges when I don’t want to elaborate. Other blind people – those in the “competent blind adult” community – may think I’m setting a bad example. Honestly though, I don’t care.

I know blindness shouldn’t bind me. It shouldn’t keep me from achieving my goals. But neither should autism. Or mild cerebral palsy. Or any of my other disabilities alone.

But I don’t want to have to pull my every disability apart to see how it does or does not – or should or should not – limit me. I am not blindness, autism, cerebral palsy or whatnot. And yes, I know I’m more dependent than other people with my diagnoses. But I am not my diagnoses. I am myself and I lead a meaningful life as much as I can. And that includes not letting other people define what that is.

Written for Three Things Challenge #MM75. I didn’t know how to fit in the word “abound” and actually had to look up its definition to be sure I would, if using it, use it correctly.

Neurospicy Burnout

Posted on by Astrid

Hi everyone. A few days ago, I listened to a podcast episode on autistic burnout. It’s the most recent episode of Beyond Chronic Burnout, a podcast for autistic women (and other marginalized genders, I hope) and their helping professionals. It discussed the Spicy Pepper burnout questionnaire, which apparently is a questionnaire to determine your level of burnout. I got overloaded trying to find the actual questionnaire amid all the ads etc. and it looks like the website it was published on, isn’t particularly screen reader friendly, so I wasn’t able to take the test. However, from the descriptions discussed on the podcast, I believe I’m in quite a significant burnout and have been for, well, years.

What is autistic burnout, you might ask? Autistic burnout is like regular burnout from being overworked, but it is really more like being overworked living life in a world not designed for autistics. As I have said for many, many years, just living in a neurotypical world is hard work for me.

I want to clarify that autistic burnout is often amplified by co-occuring conditions such as ADHD. In fact, writing this just reminds me of something I read several years ago that said that having fibromyalgia, which is often agravated by stress, is often correlated to ADHD. This is why I refer to neurospicy burnout.

The podcaster claimed that the first signs of burnout in autistics usually appear between the ages of four and six and many autistics experience their first actual burnout between the ages of six and ten. This was hugely validating. I, at age five, fell ill with what my parents claim was the flu, but it did lead them to get me into special ed quicker than originally intended. Age seven is always when my parents claim I changed from a cheerful, happy child to angry and depressed. This correlates with my having to start learning Braille, so according to my parents I then became aware of my declining vision. This is probably correct, but it doesn’t mean that my difficulty accepting my blindness was the only or main problem.

The first warning sign of autistic burnout, the podcaster says, is suicidal ideation. Oh my, can I relate! I honestly always thought that the first sign of burnout, whether neurospicy or work-related, was exhaustion. That with the fact that I react to overload with overactivity and irritability, always made me believe I’ve never had “real” burnout symptoms. Now I realize that I may not have fully collapsed (yet), but I do certainly experience burnout. And have for, well, my entire life since I was seven, I guess.

Highly Sensitive People (HSP) #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m once again incredibly late writing my post for the #AtoZChallenge. Today, the reason is the fact that I’ve been hyperfocusing on other things. Anyway, I still have some time, so let’s get into today’s post. Today, I want to write about the concept of the highly sensitive person (HSP).

The concept of the highly sensitive person as something specific was first introduced by psychologist Elaine N. Aron in the mid-1990s. Her book, The Highly Sensitive Person and its companions about highly sensitive people at work and in love and about highly sensitive children, are still quite popular. I read The Highly Sensitive Person when I was about 20 and, though I related to a lot of traits of being an HSP, it felt somehow off too.

What are the traits of highly sensitive people? At first, I thought the concept referred just to being sensorially and emotionally more sensitive than others. It’s been nearly 20 years since I read Aron’s book but now that I look over the current ideas for these traits, I can see what felt “off” about them: they are highly desirable traits, but not ones I possess. These traits include:


  • Being deeply empathetic and caring (on an emotional level).

  • Cherishing reflection.

  • Taking things personally a lot and/or having a hard time handling negative feedback.

  • Being detail-oriented: you notice little things that others miss.

  • Being deliberate and slow to make decisions.

  • Being “in your head” a lot.


Oh well, I relate to about half this list, but I did this deliberately (the list is more extensive) and it’s actually the less desirable traits I relate to.

There are many people who claim that being an HSP is just a positive way of looking at being autistic. Looking at the lists of traits I find online, I can see how a high-masking, low support needs autistic person could relate to some traits (heck, even I do and I’m not high-masking or low support needs). Then again, even Aron at first estimated up to as many as 20% of the population would be highly sensitive. In other words, everyone is a little HSP. And for clarity’s sake, I do not believe everyone is a little autistic. Quite frankly, I don’t believe that many actually autistic people have most of the traits of being an HSP. Yes, there’s some overlap and my father actually used a newspaper article about one of Aron’s books to shame me about self-identifying as autistic, but autism remains a disability. Being highly sensitive is not.