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.

Book Review: Camp Damascus by Chuck Tingle

Posted on by Astrid

Hi everyone. A few weeks ago, a person on Reddit was looking for books with queer, neurodivergent characters. Someone recommended Camp Damascus by Chuck Tingle. All I knew about the book before starting to read it, was that it’s horror about a gay conversion camp and that the main character is autistic. I’d hardly ever read horror, but somehow, the book appealed to me. Tonight, I finished it, so here’s my review.

Book Description

A searing and earnest horror debut about the demons the queer community faces in America, the price of keeping secrets, and finding the courage to burn it all down.

They’ll scare you straight to hell.

Welcome to Neverton, Montana: home to a God-fearing community with a heart of gold.

Nestled high up in the mountains is Camp Damascus, the self-proclaimed “most effective” gay conversion camp in the country. Here, a life free from sin awaits. But the secret behind that success is anything but holy.

My Review

The book started out quite weird. Honestly, I had no idea what was happening until midway through the book. That, at first, frustrated me. However, having finished the book, I now feel this unknowing fits in nicely with the plot.

Once I got beyond the first half, I started rooting for the main character and her friends. I really feared the book would have a horrible ending. I felt all kinds of feelings as I made my way through the second half and was chilled to the core whenever something bad happened to the main character or her friends. I also didn’t expect the ending. Honestly, I still have many questions now.

The main character, Rose, is autistic like I said. This isn’t a main focus of the book, but the presentation of her autism is a bit stereotypical. That’s not a big problem though.

I don’t really know what I think of this book. Its weird first half sticks with me, but at the same time, I’m pretty excited to read the author’s next book. As pretty much an intro to the horror genre for me, it’s really good. I hardly do Goodreads anymore, but if I had to rate this book, it’d get 4 out of 5 stars.

Abandonment Wounds: What Will Happen If I Can No Longer Mask?

Posted on by Astrid

I’ve been struggling with attachment issues a lot lately. Not related to a specific person this time. I mean, yes, like I said on Wednesday, four of my “favorites” among the staff are either on leave or will be leaving (be it temporarily or permanetly) soon. That’s not the problem, since I’ve learned the hard way to expand my list of “favorites” when necessary. It’s in my best interest too to avoid a situation like the one with my assigned staff in Raalte, who was leaving and left me with just two other trusted staff.

The issue I’ve been dealing with lately, is much more existential: the knowledge that, if I’m truly myself, I’m unacceptable. Not because I’m some kind of criminal. I’m not. Rather, I’m an outcast. And while I won’t be in the prison system for that, being shoved around care home after care home while not having family to advocate for me, will be equally horrid.

I have been struggling with memories of the circumstances surrounding that assigned staff leaving. A few months before she left, I sent her a rather dramatic E-mail about how no-one will be in my life forever. Well, my spouse says we’ll always be in each other’s life, but truthfully we can’t know that. Besides, when we lived together, there were just a little too many situations in which my spouse (understandably) was disappointed in me that are however things I couldn’t help. For clarity’s sake: I don’t blame my spouse, but maybe with my being multiply-disabled, I’m not suited for “traditional” long-term relationships. Ha, now I’m reminded that my spouse often reminds me that I said when we were choosing to be a couple, that I didn’t want a traditional relationship.

Of course, the reason I’m undesirable by society’s standards isn’t my fault. Like, I can’t help being disabled. But just because it isn’t something I choose, doesn’t make it any less real or hurtful. In fact, it hurts more because I can’t choose not to be me.

I mean, I’ve masked more or less successfully for many years. Mostly less successfully, but my parents prevented me from landing in the care system at a much earlier age than I did by claiming the police and other people who thought I was disturbed, were just stupid. They were masters at manipulating the system. I am not.

Back to my assigned staff in Raalte. She was the first to take my wish to leave seriously. I assume she genuinely felt that the intensive support home could better serve me than the care facility, but I also assume she had a team and a manager to deal with and it remains a fact that some of her coworkers couldn’t cope with my behavior. Which was, for the record, much less challenging than it is now.

It genuinely scares me to think of what will happen if (when?) I can no longer mask at all. There was this news feature sometime in 1997 or 1998 about a girl, aged about sixteen, who was too intelligent for intellectual disability services but who still couldn’t cope in adolescent mental health services and was, as a result, restrained long-term. After her family sought media attention, she was transferred to a treatment center for youth with mild intellectual disability and severe challenging behavior. I don’t know what became of her.

Last week, when I had several severe outbursts related to my most recent frustration, I begged my support coordinator to ask the behavior specialist to involve the Center for Consultation and Expertise (CCE) again. I really want to get the ball rolling on getting them involved before it’s too late and I’m being kicked out again, like the last time they were involved in 2018. In this sense, a consultation might help more this time, because at this point, as far as I know, staff aren’t yet so much at their wit’s end that they see the situation as unresolvable. But I’m scared of what will happen if they do get to this point, like apparently some staff in Raalte were.

Echolalia

Posted on by Astrid

Hi all! I’m officially joining the #JusJoJan fun today, because the prompt inspired me. It’s “echo”.

There’s a resident at my home who repeats everything she hears. I was actually confused when I first got introduced here, because this resident has a very clear, high-pitched sing-song voice reminiscent of staff. When I asked why the staff were saying everything twice, one of them explained that this person wasn’t a staff but a client and she experiences echolalia.

I immediately assumed she’s autistic, but she isn’t. She has Sanfilippo Syndrome, a rare (albeit relatively common in the Netherlands) metabolic disease that leads to cognitive decline. Apparently, this person’s cognitive decline is so advanced that she doesn’t recognize anyone, except for sometimes her parents.

It’s interesting to note that, when I first got here, she always only echoed the staff, not the other residents. Now she regularly echoes me and sometimes other clients too. She still doesn’t repeat it when someone tells her off for talking too much. I think that’s funny.

I, being autistic, sometimes experience echolalia too. When under a lot of stress, I engage in immediate echolalia, like this other client: I repeat what has just been said. Sometimes, I also experience delayed echolalia. When this happens, I notably echo my fellow clients.

When I’m in a mentally good place, I sometimes feel guilty for it, because it feels like I’m appropriating them. That’s not my intention though and, well, I’m not echoing on purpose anyway.