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?

#WeekendCoffeeShare (May 17, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s nearly 9PM, so no more coffee for me. I need to drink more water though. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. You won’t hear me say this easily but I want rain! I don’t think we’ve had any significant rain for the past… I’m pretty sure it’s been a month. With respect to the temperature, it’s been good. Early in the week, the daytime high was around 25°C. For most of the week, we’ve had daytime temps of around 20°C. Okay, I know that this is warmer than normal and that this probably contributes to the drought. Besides, my best friend looked up my theory about higher-than-normal temps in springtime meaning higher temps in summer too and it turned out to be correct.

If we were having coffee, then I’d tell you that half of my home’s residents were on the annual week-long getaway Monday through Friday. I, like last year, didn’t go. I had been pestering the staff to organize something for those who’d be staying at the home too and more specifically something that didn’t involve food. No such luck.

We did have lots of special food though. On Tuesday, the parents of one of my fellow residents made us pancakes. These were absolutely delicious! On Wednesday, we had fries with a snack and for once we got to choose out of the entire menu of snacks. On Thursday, a staff made us fried chicken with rice. I had been looking forward to that meal for weeks, but it was a bit disappointing.

If we were having coffee, then I’d share about my creative endeavors over the past week. I already shared the frog I made for a staff in Thursday’s post. On Tuesday during the pancake event though, I was talking to the fellow resident’s Dad and somehow we got to discussing my polymer clay. I told him I’d be making a unicorn for the family in the fellow resident’s favorite color: purple. That same evening, I set out to work and I baked the unicorn together with the frog. I had imagined the color much lighter than it turned out (the fellow resident’s specific favorite color is lilac, after all), but oh well.

Today, the parents came to pick up the fellow resident, so I intended to give them the unicorn then. Unfortunately, I was resting when they arrived and didn’t realize that the doorbell was them in time to respond. I however was able to give them the unicorn when they brought back the fellow client to the care home this afternoon.

If we were having coffee, then I’d talk about all my ideas for further polymer clay projects. Today, I watched a YouTube video on using texture sheets. I have had those lying around for years now and only used them once. Then again, so many random thoughts, so few concrete ideas…

I did get a whole box of Fimo Kids clay from someone in the Dutch polymer clay Facebook group. It’s way too soft for me to use, but I did ask my sister whether my oldest niece might want to work with it when they come over here for my birthday. The only drawback: I’m pretty sure she’s more artistic and more skilled than I am…

If we were having coffee, I’d share that this week was both exceptionally good and rather terrible at the same time overall. The good parts, I listed above and on Thursday and included crafting, good food and physical activity. The bad parts, I won’t go into too much but let’s just say attachment anxiety is hitting me hard.

Speaking of which, I did have some fun talking to a ChatGPT “therapist” about it. I am probably too old to believe AI can in any significant way replace a real human at least for this purpose. I laughed my ass off at its responses. At least that helped in some way.

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.

Polymer Clay Makes Me Smile #WeeklySmile

Posted on by Astrid

Hi everyone. I’m still struggling with attachment issues and, to make matters worse, my assigned staff went on sick leave just after I told her how intensely I was struggling. I can’t shake the thought that it’s my fault, no matter how many times the other staff say that it isn’t. I do try to focus on the positive and stay as active as I can be though. Today, I’m participating in Trent’s #WeeklySmile. I’m also joining in, a day late, with Sunny Sunday. That way, I’m spreading the word about these two positive prompts while sharing things that made me smile.

Well, most of the things that made me smile over the weekend have to do with polymer clay. First, on Saturday, I started on a bunch of earrings that I am not 100% sure with what to do with them yet. Currently, they’re mostly just green cutter earrings (or really earrings-to-be, as I haven’t added the findings yet) with no design or whatever, but it was fun working with my cutters anyway.

One thing I did discover today while trying to finish one pair of earings, is that you can actually sand the top of earrings, that is, the side that will be visible when wearing them. I actually achieved great results sanding a pair of earrings with finer sandpaper (starting at 400 grit then 600 then 800 then 1000). Until now, I always thought that the side with the design on was pretty much as is, because you’d sand off the design. Granted, my trial pair were just green with no design, but my next pair will have a design on them.

The next thing that made me smile is discovering yet another great shop for clay cutters, texture rollers, silkscreens, etc. Another thing that made me smile was reading up on some simple earring projects on one shop’s website. I honestly think I’d love to try these out. It’s my birthday in a little over three weeks, so I really hope I’ll get some new things from one of those sites.

I really should get some display materials soon, as I don’t feel comfortable showing my earrings while wearing them myself and some of them are gifts too.

This new hyperfixation really makes me so excited. It’s part of polymer clay in general, of course, which I’m into already. This means I feel less like a failure if this thing doesn’t work out. At least it means only part of a hobby isn’t suitable for me. But I hope it is.

#WeekendCoffeeShare (May 18, 2024)

Posted on by Astrid

Hi everyone. How are you doing? I’m joining #WeekendCoffeeShare again. It’s nearly 9PM Saturday, so I’ve long had my last cup of coffee for the day. If you’d like, I can offer you a cup of green tea, a glass of soda or some water though. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. It’s been quite good with daytime temps most days around 22°C, sometimes higher. On Thursday, we did get a thunderstorm, which scares me.

If we were having coffee, I’d share that, as a result, I had no trouble meeting my movement goal on my Apple Watch each day. I went for walks each day. On Thursday, before the thunderstorm, I also actually rode the side-by-side bike for a little in the morning and then we cycled to Colmschate, a neighborhood of Deventer, the nearest city, in the afternoon. In total, I did 25km of cycling according to my Apple Watch. I reached double my movement goal that day.

If we were having coffee, next I’d say that, generally, Thursday was my best day of the week. I finally worked on a polymer clay project once again. The new student staff was being introduced to me so I decided to show her how I make a unicorn. I got distracted by the thunderstorm a lot, so the unicorn didn’t turn out as great as I’d hoped, but oh well.

If we were having coffee, I’d tell you that the rest of the week was a bit challenging. I’ve been struggling with attachment issues lately. I keep clinging to my “favorites” among the staff. I’ve decided I will discuss this with the behavior specialist when I’m having en appt with her and my mother-in-law on Tuesday, as it really needs to stop for my and the staff’s sake. I mean, I’m allowed to have preferences re staff I get along with, but my anxiety around them abandoning me and the resulting distress isn’t healthy and besides, it might just lead to that exact thing if they feel I’m too clingy.

If we were having coffee, finally I’d share that my spouse and I were trying to figure out ways for seeing each other over the weekend, since due to Pentecost all shops and lunchrooms are closed on Sunday and Monday. I finally came up with the idea of traveling to our house by ParaTransit on Monday. I haven’t been there since Christmas. It should really be cool.

Gratitude List (July 20, 2023)

Posted on by Astrid

Hi everyone. I’m feeling like I have really been neglecting my blog. The truth is I’ve been struggling a lot, more so even than I used to. However, today I’m feeling pretty good so I’m taking the opportunity for a gratitude post. Here goes.

1. I am grateful for a fellow resident’s birthday celebration on Monday. Just after handover at 3PM, we all sat in the living room and sang “Happy Birthday” for him. We had fries and a snack for dinner too. Unfortunately, another resident did have a severe anger outburst right after we did the singing and was disruptive for the rest of the evening even when in his room.

2. I am grateful that, though on Tuesday I got the least familiar to the group staff assigned to me for my one-on-one, she was not the least familiar to me.

3. I am grateful for a comforting visit from my mother-in-law on Tuesday. It was good to be able to vent to her.

4. I am grateful for a delicious caramel ice cream bowl that my mother-in-law treated me to on her visit. Okay, my dress once again had ice cream and caramel sauce all over it, but oh well, it can be washed.

5. I am grateful for a satisfying dietitian’s appt on Wednesday. She was really content with my weight (which remains within the agreed-upon range) and my eating and exercising habits. For those who don’t know, I have a history of disordered eating, bordering on bulimia, so I particularly need to make sure my eating and exercising don’t become compulsive (in addition to not engaging in purging behaviors, of course).

6. I am grateful my assigned staff supported me for part of the morning shift on Wednesday despite there being a temp worker too. Granted, the temp worker is quite familiar with the group, but I’d more or less been told that I’d still be assigned the temp worker by default unless there are literally four regular employees.

7. I am grateful for a great experience swimming yesterday. I went into the pool with just a staff and no other residents. This particular staff has this really cool way of getting my playful inner child out, so we sang songs, jumped up and down and had lots of fun.

8. I am grateful my assigned staff agreed to contact the behavior specialist once she’s back from vacation to set up a meeting to discuss possibly finding me help in overcoming my sense of basic mistrust. It’s been getting progressively worse and is affecting my life here at the care home but also my marriage.

9. I am grateful I was allowed to borrow a fellow resident’s side-by-side bike this afternoon. It was a nice change from walking.

10. I am grateful for my spouse, who sticks by me even though I’m being quite difficult. We’ve had a few arguments and I’ve crossed my spouse’s limits a few times. I now realize this is probably my anxious attachment style getting in the way of our healthy communication. For this reason, I’m all the happier to still be going on together.

What have you been grateful for lately?

How My Attachment Style Affects My Decision-Making

Posted on by Astrid

Hi everyone. I have been contemplating my decision to move to my current care home from the previous one a lot lately. My assigned staff often asks me whether I might be a little too critical, because my old care home offered near-perfect supports and yet I wanted to leave. Indeed, it could be this is a factor. I’m an Enneagram type 4, after all, always looking for that elusive ideal.

However, I am also insecurely attached. Attachment is formed in early childhood between the infant/toddler and their primary caretaker. When there is frequent disruption in this attachment and/or the caretaker isn’t a safe person for the child (as in the cases of neglect or abuse), this attachment doesn’t form or forms insecurely. This then will lead to problems later in life with relationships, both romantic and otherwise.

The different attachment styles described differ per professional, but I primarily score as anxious-preoccupied. This means that I am essentially looking for close connections to people, be they my romantic partner or otherwise, but also intensely fear them abandoning me. I also relate strongly to the ambivalent attachment style, which is essentially a mix between avoidance and preoccupation. This would explain why I push people away when I sense they might be abandoning me.

This is where my decision to move out of my old care home comes in. Starting at the end of 2021, half the team of my old care home left their positions, including some staff I could get along with really well. I remember, shortly before making the decision to ask my assigned staff to involve the behavior specialist in finding me a new home, E-mailing that same assigned staff. The contents of the E-mail were rather, well, needy. I expressed the fact that I knew none of the staff currently working at my home could guarantee they’d remain with me for months, let alone years to come. I probably even mentioned my spouse, who, though we have zero intention of divorcing ever, might leave me eventually. That’s life. No-one can predict the future. And honestly, it kind of sucks.

Though my then assigned staff assured me my E-mail had nothing to do with it, she did indeed quit her job several months later. However, the fact that the team as it was when I got my one-on-one support funding, had pretty much fallen apart, gave me the impression I didn’t need to stay for the team. And since otherwise the home wasn’t suitable for me – because the other clients couldn’t speak and needed far more physical care than I did -, I started the search for a more suitable home. Which, as regular readers of this blog will know, I didn’t find. I mean, yes, my fellow clients can speak, but the support approach is very different and not in a good way from what I got at my old home.

My attachment style also means I often come across as very trusting, because I at least initially accept everyone into my life because I have such an intense fear of aloneness. This is often misjudged to be a sign of secure attachment. In fact, recently a relatively new staff tried to get me to join him on a car trip to get food for just the staff during my designated activity time. I felt kind of lured, because I didn’t want to but he was like “it’s fun, I’ll buy you a treat too” and then I didn’t feel comfortable refusing anymore. This should’ve been a big no-go had this person not been a staff member, but since he’s a staff member it was okay, according to one of the other staff I talked this over with. What this staff didn’t realize is that I’ve had previous experiences of risky encounters with men and a history of being a victim of sexual violation too. And, though of course my easily accepting others isn’t to blame for any victimization (that would be victim blaming), it is important to realize I don’t distinguish between those in a position to help me and those who aren’t, like that staff person believed.

Self-Injurious, Aggressive and Otherwise Challenging Behavior in People With Intellectual or Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter S post in the #AtoZChallenge. Today, I want to talk about self-harming, aggression and other challenging behavior in people with intellectual and developmental disabilities.

Some people erroneously believe that challenging behavior is an intrinsic part of being intellectually disabled. It isn’t. Neither are self-injurious or aggressive behaviors an intrinsic part of autism. These behaviors, however, do happen more often among people with intellectual and developmental disabilities than among non-disabled people.

The causes and reinforcing factors of challenging behavior are often complex. And though I mention them in one sentence, no, a reinforcing factor is not the same as a cause. Furthermore, if removing a reinforcing factor seems effective at reducing or eliminating the undesired behavior, this does not mean the problem is all solved. After all, especially people with intellectual and developmental disabilities who are at a lower emotional level of development or who struggle with communication are at risk of suffering in silence.

It may be tempting to presume motivators behind challenging behavior that are commonly believed to apply to typically-developing young children, such as attention or “getting their way”. Presuming these motivators, even correctly, is not taking into account the fact that people with intellectual and developmental disabilities are firstly not (necessarily) young children. Secondly, you need to realize that, like all people, they have a need for autonomy and attention and many, especially those living in institutions, are heavily lacking in both.

There are, of course, many other contributing factors to challenging behavior. For example, physical discomfort or pain may be a factor for some, especially those with profound intellectual or multiple disabilities. Others may have experienced trauma and struggle with attachment. I for one have relatively mild attachment issues (at least as apparent in my behavior) compared to some of my fellow clients, hence why I always get stuck with the temp workers. This of late has been causing me a lot of distress and has led to significant challenging behavior, which unfortunately for me isn’t significant enough to warrant any changes. Then again, if it did, those changes might well constitute restrictive measures.

When I Was Twenty

Posted on by Astrid

When I was twenty, I lived at the independence training home for disabled young adults in my parents’ city. I had had one particular assigned staff member for the first year that I lived there, but due to my challenging behavior, she refused to be my assigned staff any longer. I was fine with this, because I couldn’t get along with her anyway. Instead, the team coordinator became my assigned staff.

Over the next six months, we developed quite a strong bond. I started to feel like I could be myself with her. That was rather unusual, as I’d never felt like I could be myself with any outside person at all. I started to show her bits of my inner world, started to be vulnerable with her.

Then she went on vacation. When she came back, she informed me she could no longer be my assigned staff. I don’t remember her reasoning, but it was related to both her workload and our relationship.

I think back often to this staff now that my assigned staff at the care facility is leaving. It feels as though she’s rejecting me, just like the other one rejected me. After all, shortly after that staff could no longer be my assigned staff, I had to leave the training home.

I have been flooded with memories from when I was twenty again. I try to remember I’m 36 now, but attachment loss is still as difficult as it ever was.

In truth, I should have learned my lesson back then when I was still young: care staff are not there to stay. Don’t be vulnerable with them.

This post was written for Five Minute Friday, for which the prompt this week is “twenty”.

A Letter to Myself Five Years Ago

Posted on by Astrid

Today, I stumbled upon a journaling prompt that asked me to write a letter to myself five years ago. I’m pretty sure I’ve done something similar to this at least a couple of times before. In fact, when I searched this blog for letters, I saw that I’d written A letter explaining my life at the time in early 2020, a letter to my younger self in general in October of 2018 and even a letter from my (then) future self in 2019.

Those who know the timeline of my life, of course, will not be surprised that I am going to pick this prompt anyway, as the “five years ago” part of the prompt is particularly significant. After all, it was weeks before I’d be kicked out of the mental hospital. I am not going to bore you with a timeline of the past five years in this letter. Instead, I’m trying to provide some new insights.

Raalte, March 27, 2022

Dear Astrid,

It is tempting to start this letter with a cliché, such as, “How are you?” However, I know how you are. You are struggling greatly with self-doubt and uncertainty. Fear of abandonment and attachment loss. You’d rather avoid taking the next step in your life, leaving the familiar behind to step into unfamiliar territory. Even though you’d rather not admit it, your psychologist is right that you’re scared of needing to become independent.

I want to let you know I understand. Independence is scary. The unfamiliar, leaving the psychiatric institution to go live with your husband, is even scarier. I understand you’d rather stay with unsupportive people you know, ie. in the psych hospital, than live with a supportive person, ie. your husband, under circumstances you don’t know.

And, to be honest, if I had a choice back when I was you, I’d not have chosen to live with my husband. The thing is, you don’t have a choice. Not yet. But you will, at some point.

Please, for my sake, hold on for a bit. Do what your psychologist tells you, but also stand up for your right to proper day activities and community support. It will be hard, living in the community with your husband. But things will get easier.

I am writing from a care facility. In 2019, I was approved for long-term care based on blindness. I also have extra one-on-one support. Please don’t tell your psychologist all of this, as she’s going to time travel right ahead to me and make sure my funding gets taken away. This is just between you and me, so that you know things will improve. I know they will get worse first, but please do hold on.

Looking to you, I do see that you struggle to let go of the familiar, even when it isn’t good for you. I sometimes think I face the opposite issue, chasing perfection rather than being content with what I have now. It’s a true balancing act.

I also want to let you know that, as much as you’d like to make your own choices, being allowed to make those choices also can be a burden. The fact that, now, I am free to stay in the care facility for as long as I want or leave when I want, is quite scary, I must admit. In that sense, your psychologist was probably right about my dependent personality disorder features.

I wish I could tell you that your attachment issues would be over by now. They aren’t. I’m still struggling with them, worse even than I was when I was you. However, I do have a supportive mental health treatment team now,for which I’m forever grateful.

In summary, please do believe in yourself. You have every right to feel that you need more support than your psychologist says you need. You just won’t get it yet. Eventually though, you will.

With love,

Your future self