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.

#WeekendCoffeeShare (November 16, 2024)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare again. It’s nearly 9PM, so no coffee for me. I might make myself a cup of bedtime tea once I’m done with this post (or rather, have the staff make it for me). There’s of course always water too. Let’s chat.

If we were having coffee, first I’d talk about the weather. We’re still having an unusually mild fall season, with daytime temperatures at or around 10°C all week. We were supposed to get rain today, but I haven’t felt any.

If we were having coffee, I’d tell you I’m still struggling, but not as much as I was last week. On Tuesday, I spoke with my support coordinator and explained why I felt the Center for Consultation and Expertise may be able to help. She didn’t really respond, but I’m hoping she’ll take things up with the higher-ups.

If we were having coffee, next I’d tell you I’ve been learning more about autism and ways to support myself and for my staff to support me. There’s this support method called The Essential 5 in English. It was originally developed here in the Netherlands by Colette de Bruin and here has the catchy name “Geef me de 5” (which translates to high-five in English). I hadn’t ever remembered the essential five correctly, but they’re ways in which one’s activity should be structured: What, When, Where, Who and How. If there’s no “What”, as in my day schedule’s “alone time” or even during my supported activities (because I have to choose one on the spot), how can the other four be clear? This is something I struggle with a lot, as now with the shifts assigned to my day schedule, the “Who” is often too rigidly clear but there’s still no “What”.

I listened to a podcast episode by Geef me de 5 on empty time and autism and had a staff listen to it with me too. It was very eye-opening.

If we were having coffee, then I’d tell you that, on Tuesday, I went to me and my spouse’s house for my spouse’s birthday. We also stopped by Ikea and my in-laws’ house. We originally wanted to order pizza or fries, but both the pizza place and the snack corner were closed. My spouse eventually put fries into the Airfryer.

I also took a few things from our house back with me to the institution. First were a number of mounted rubber stamps I used to use for card making. I’m not 100% sure what to do with them now, particularly since most have old ink on/in them, but, if I can clean them, I can re-use them for stamping on polymer clay.

Then I also took a jewelry box with me that contained a number of rings, bracelets and necklaces. One of them was the ring with an amethyst in it that was passed down to me from my late grandma. Unfortunately, that one, as well as most other rings, are too big for me.

If we were having coffee, I’d share I have a ton of creative ideas floating around in my mind, but struggle to get to actually starting any of them. For example, I want to start making my own jewelry again, particularly bracelets and necklaces. I am still in doubt as to whether earrings are suited for me at all, as sooner or later I’ll almost inevitably develop an itch from them.

Anyway, I remember how I used to enjoy making jewelry and I think that with my current day schedule and staff, I should be able to pick the hobby up again.

So far, I did create one polymer clay pendant. I think I like it quite a lot, but still need to sand it before I can actually use it.

If we were having coffee, lastly I’d share a nutrition and exercise update. I saw the dietitian on Wednesday and endured the mandatory talk about all the opportunities to snack and get treats during the holiday season. Quite frankly, if I’m in the mood for snacking, I don’t care whether there’s a festive reason for it. I’m also happy to report I’m still on target weight-wise and intend to keep it this way.

However, I haven’t been all that physically active over the past week. I did meet my goals on my Apple Watch, but things could’ve been better. On Thursday, I had an opportunity to go swimming, but I felt too tired. I now remember that I was supposed to do my physical therapy exercises this afternoon but forgot. Going to do those now!

Variation and Deviation: What Is Typical vs. What Is Desirable

Posted on by Astrid

For today’s Friday Faithfuls challenge we’re encouraged to write about what “normal” means to us. I am reminded of the opening phrase to one of the Project 2025 training videos. Mind you, I didn’t see the actual video, but listened to an episode of the podcast, The Ace Couple, walking the listener through it. The goal of the video was to educate Project 2025 supporters about the language leftists (and presumably anyone else not in agreement with their garbage) use and what we (yeah, I’m one of those pesky leftists!) supposedly mean.

The opening phrase was: “I’m just a normal American woman.” The speaker then went on to describe what she supposedly would be called by the Left. The exact wording, I can’t remember but it included “cisgendered” (her words, never mind that it’s “cisgender” without the “-ed” ending), “ethnoimperialist” (a term I’ve never heard of but then again I’m white and assume this is just a parody phrase to say she is too), probably “heterosexual” and “pronouns she/her”.

Now what’s “normal” about all this? Statistically speaking, being straight and cis (which means, for those not aware, that your gender assigned at birth aligns with your gender identity, so the opposite of trans) are indeed “normal”, in that the vast majority of the population falls within this category. White, globally speaking, definitely is not: the majority of the world’s population are BIPOC (Black/Brown, indigenous, or people of color).

I was also reminded of an open discussion I had several months ago with a temp worker who happens to be gay. We were discussing sexual and gender diversity and relating it to neurodiversity. The neurodiversity movement says that autism and other neuropsychiatric conditions are merely a variation of the norm, not a deviation from it. The difference is that variants are statistically less common but not less valuable, whereas deviants carry a connotation of “less than”. Autistic/neurodivergent people are different, not less in a similar way that people under the LGBTQ+ umbrella are different, not less.

Now I would like to say that no-one is “less” as a person. However, some human conditions, traits and behaviors are both abnormal and undesirable.

I do understand that what are considered “deviations” from the norm rather than mere variations, changes over time. Autism, commonly, is still seen as a disorder in need of a cure and there’s hardly any protection against discrimination based on it. Homosexuality, thankfully, not anymore. At least, not in the Netherlands. This doesn’t mean gays don’t face discrimination, but in that case, society sees that it’s the person being homophobic who’s in the wrong, not the gay person.

I am a strong supporter of both neurodivergent and LGBTQ+ rights, and a member of both communities, for clarity’s sake. Though I am white, I try to learn about race issues. I may not statistically speaking be “just a normal woman” and thank goodness in this era I’m not American. However, I am a human being and this means I deserve human rights.

#WeekendCoffeeShare (July 13, 2024)

Posted on by Astrid

Hi everyone. I’ve once again not been blogging, but this time it’s not because I’m struggling. Well, I still don’t feel the greatest, but the main reason I haven’t blogged is that something else has caught my attention. I’ll talk about it in a minute. Want a coffee? I’m joining #WeekendCoffeeShare once again. It’s past 10PM, so no coffee for me, but since this is a virtual get-together, you can have whatever you like. Let’s have a drink and let’s catch up.

First, if we were having coffee, I’d share about the weather. It’s been all over the place. On Tuesday, it was hot and humid with a daytime high of 30°C. Then we got this giant thunderstorm. Wednesday and Thursday were still okay with daytime temperatures of around 22°C. Yesterday though, it was not just raining all day, but it was freakin’ frigid with a daytime high of 16°C. Today is slightly better.

If we were having coffee, I’d tell you that, despite having my new Apple Watch wristband, I didn’t meet my movement goals each day this week. I blame the weather. I thankfully no longer care as much as I used to and can sit back and relax every now and again rather than having to keep up with my activity rings. I did try to walk each day (except for yesterday) and went swimming on Thursday too.

If we were having coffee, next I’d tell you that, yesterday, I went to an Eye Association meeting for young people who are blind or visually impaired (and a few who have an eye condition but can still see quite well). I originally thought I’d be too old to qualify as a “young person”, but the target age group is 18-45. I had a good time, but towards the end got quite overloaded. I had a near-meltdown when the taxi driver called me but I couldn’t hear him over the noise in the cafe in which the meeting was held. I for a bit thought I upset the entire group and wouldn’t be welcome anymore, but thankfully it wasn’t this bad according to several people.

If we were having coffee, lastly I’d tell you all about my latest obsession. I originally wanted to write a separate post about it on Thursday, but got distracted by the actual thing. It’s learning Spanish on Duolingo. I’m currently still at the early A1 level of proficiency. My spouse and mother-in-law have both been learning Spanish on this app for several months. What got me into it though was a conversation in a Facebook group about language learning. Some people said Duolingo isn’t always correct, but I’m not sure whether they were referring to a specific language. I can see why though in a way, as for example early on in the Spanish course, you’re learning the word “elegante”, which Duolingo claims translates to “elegant”. Now I’ve never heard an English-speaking person use the word “elegant” in everyday conversation. I honestly couldn’t care less though, as if I ever get to a point where I can actually talk in Spanish outside of the app, I’ll teach myself the finer details of conversation.

Disability: Describing My Impairments #AtoZChallenge

Posted on by Astrid

Hi everyone. I know for sure I did a post describing my limitations on my now defunct blog, but don’t think I ever did one on here. Besides, even if I did, I learn something new about myself, including my disabilities, all the time. For my letter D post in the #AtoZChallenge, I thought I’d describe my disabling conditions in lay terms. Oh wait, the lay terminology is going to be really tough.

First, I am blind. I have what is called light perception, which means that I am able to see whether it is dark or light around me, but not what direction the source of light is coming from (that ability would be called light projection). Functionally speaking, even though I can still tell day and night-time apart and this is what sets the totally blind apart from those with any vision in medical terminology here in the Netherlands, I consider myself totally blind.

Next, I (most likely) have mild cerebral palsy (CP). I say “most likely” because my parents didn’t tell me whether I had any diagnosable condition that would explain my mobility impairment and I stopped seeing a physiatrist (physical disability doctor) when I was around nine. In any case, I walk with a drop foot on my left side that gets worse when I get tired. Though I can, with difficulty, walk a distance of about 5km at a time when I’m very energized that day, I do fall more easily than non-disabled people. I didn’t realize this until, several years ago, I read on a CP-related blog about fall risk assessments containing a question about whether you’ve fallen for any reason in the past year. Well, the blogger said hardly a week goes by that they don’t fall. That isn’t exactly true for me, since I hold onto someone’s arm or hand when walking, but I do fall at least once a month.

CP (or whatever it is) also means my fine motor skills aren’t great. I used to get physical therapy for this. I did exercises like touching my thumbs to each of the other fingers. I can now do that easily with my right hand and with some difficulty with my left. I cannot use a knife and f ork to eat with and, even with my specially adapted spoon, often make a bit of a mess. I can type and do so with both hands, but I much prefer to use my right hand and, even though I was taught the ten-finger touch typing, I don’t do it fully correctly. As long as it works, though…

Since CP is caused by brain damage, in my case a brain bleed sustained shortly after birth, it can also come with other difficulties, such as processing issues and lower energy levels. This can also be part of autism, which I was diagnosed with at age 20, of course.

Autism, of course, has its core symptoms of differences in social communication and repetitive behaviors and interests. Because I can hold down a reasonably normal-sounding one-on-one conversation about myself, as clinical assessments often are, I am diagnosed as “mild” or level 1. I am not “mild” by any means, truthfully.

I am tired. I was writing an entire rant on why I am nnot “mildly” autistic, but I was using all kinds of technical terms and I promised you a lay explanation. I don’t think this post makes much sense, but oh well.