Weekly Gratitude List (August 24, 2018) #TToT

Posted on by Astrid

Wow, it’s Friday again! Time flies! This means it’s time for me to write my weekly gratitude list. Here goes.

1. The fact that I did in fact exercise everyday last week. Thhat means I broke a record! I could go this far this week again, as so far I’ve been doing some exercise-worthy moving each day of the week.

2. An even longer walk last Monday. The staff who’s gettinb back into work was at our day activities group again last Monday. This time, we walked for over an hour. I loved it.

3. Finding a cool Turkish shop in the nearby city. This city is called “the capital of Turkey” by people from the surrounding area. I went grocery shopping in the city on Monday with my support worker, because the next town’s supermarket, which is closer by my house than the city’s, had sold me rotten blackberries on Friday. The supermarket visit wasn’t too much of a success, but I hope to be able to get more delicious fruit at the Turkish shop next time.

4. A very good psychiatrist’s appointment last Tuesday. It still has me in awe, as I felt so thoroughly validated.

5. Having made delicious toast with cheese, salami, tomato and pesto at day activities on Wednesday. It was a little chaotic, but still it was a lot of fun.

6. A lie-in yesterday. My support coordinator wouldn’t be here till 3PM and I had no other obligations, so I slept in till past 11AM.

7. Being able to discuss my wishes with the day activities staff. Today, the day activities coordinator had heard about my enjoying the long walks. Because this extra staff who took me this week will eventually go back to her own group and no longer be extra, the coordinator offered to try to find me a volunteer. That’d be so cool.

We also discussed my creative endeavors. The day center have a stand at the town’s Christmas fair each year and they make crafty things for that. I got talking about all my creative endeavors, like jewelry-making and soap making. I may try to get some of these things going at day activities.

Linking up with Ten Things of Thankful again.

Emotional Flashbacks: I Tend to Fight

Posted on by Astrid

I just read up on trauma-related symptoms and was flooded with emotional flashbacks. An emotional flashback is where you are reminded of a past traumatic event but don’t remember it in visual detail. Rather, you feel the emotions associated with the event. You then respond in a usually maladaptive way that is associated with your trauma.

According to Pete Walker, there are four types of trauma responses related to emotional flashbacks: fight, flight, freeze and fawn. I have yet to read up on them all in Walker’s book Complex PTSD: From Surviving to Thriving, but I think I most relate to fight, followed by freeze and fawn. Interestingly, in this book, Walker also discusses specific combinations of responses, such as the fight-fawn hybrid (I think that would be me).

I feel sad, because Walker calls the fight response, which is my most common first reaction, “narcissistic” and on his website relates it to being spoiled. I have yet to read up in his book on whether this is the only trauma that can elicit a fight response, as I was not usually spoiled. Or was I?

When discussing my upbringing with the psychologist who gave me my autism diagnosis back in 2017, after another psychologist had taken it away, I mentioned my parents not letting me develop my independence skills. That is, when I tried to develop independence skills, I was often left to my own resources and not consciously taught. Then as soon as I got frustrated (which I reckon is a natural response), my parents gave up and would do stuff for me. The psychologist called this simultaneous over- and underestimation.

I was rather frustrated with the fact that I was seen as having been underestimated, as this didn’t resonate with my feeling of chornic overwhelm. Also, it somehow feels like it’s a character flaw on my part that I got let off the hook, whereas I consider other forms of bad parenting that I endured to be my parents’ responsibility. Really though, ultimately, it’s my responsibility to heal.

Linking up with RDP #83: Remember.

A Profound Psychiatrist’s Appointment

Posted on by Astrid

So we had a psychiatrist’s appointment today. Originally, our psychiatrist had asked to see our husband too, but he didn’t want to come. I was a little late due to transportation issues, but we still covered many profound topics.

First, we went into why our husband didn’t want to come to the appointment with us. The psychiatrist was careful not to let me speak through her for my husband or vice versa. I liked this.

Then we went into our treatment goals and why we’re going extremely slowly with the dialectical behavior therapy program we’re following. Our nurse practitioner had already explained that he’d like us to fully understand the concepts before moving on to the next chapter, so that’s why in three months we’ve not gotten beyond the second chapter, which covers core mindfulness skills. There are 24 chapters in the course. Normally, BPD clients in group therapy do one chapter for each session and so they can finish the course within six months.

I started to explain how I find it incredibly hard to apply the skills into my daily life. Like, there’s one skill called observe, which is intended for taking a little distance (without dissociating) from an overwhelming emotion. For example, you can start by observing what you feel or think without describing it. I thought an example of this distance-taking was to do arithmetic in your head. My psychiatrist says that’s a step too far, as we first need to observe that we’re experiencing an overwhelming emotion (or physical sensation). Then we can take a step back and decide what to do with it. I mentioned the physical sensation of needing to use the toilet, which commonly overwhelms me to the point where I can no longer act fully functionally. (Because I am blind, in most places, going to the loo requires me to ask someone to show me where it is, which requires communication we don’t have access to when overwhelmed.) The psychiatrist told me that, if I do observe this feeling on time, I can still decide what to do with it out of my Wise Mind (DBT jargon for the right combo of feeling and thinking).

Then we went on to discuss the “pieces”, as we call the alters qwhen our mental health team are around (as to avoid self-diagnosing). Our psychiatrist asked us to describe some experiences relating to them, like how many are there (around 25) and what happens when we switch. She then asked whether all of us could agree that there is just one body, whether we like it or not. This was a truly profound question. First, she had us clap our hands and asked whether any of us are still convinced they could use those hands to cover their ears and not listen to what she had to say. That didn’t work, as we still dissociated a little. Then, she held our right hand and asked the same, repeatedly. This brought on a ton of emotional reactions, mostly wonder. We couldn’t say much, but later, when in the taxi back home, some of us were like: “I may not be able to cover my ears w ith those hands, but I can still run from that psychiatrist. Oh no, I can’t, as she’s holding my hand.”

We also went into how to do treatment from here on. We sort of sarcastically said maybe it’s going to take us five years. Our psychiatrist said that, if we truly want to make this work, to count on it that it’ll take that long indeed. I’m not sure how we feel about this. I mean, when we first started DBT a year ago, we were told by this same psychiatrist to do one chapter every two weeks and finish in a year. Of course, we found out pretty soon that this wasn’t working and a lot of other issues got in the way, so we restarted about three months ago.

We’ll meet with our psychiatrist and nurse practitioner together someday in September. Our psychiatrist will then explain a little about how to go from here and then we can hopefully decide whether we want this or not.

At the end, the psychiatrist shook our hand and said: “Now I’m giving you (plural) a hand and say goodbye.” That was such a validating experience. It was good to be validated like we’re multiple minds but also contained in that we only have this one body. As a side note, neither of us ever mentioned DID or dissociation. We think that’s a good thing, in that we don’t need to conform (yet) to any diagnostic box. After all, we don’t “want” to be DID, but we are multiple whether we want it or not.

Dropping the Mask: Does It Take a Diagnosis? #TakeTheMaskOff

Posted on by Astrid

Today, the theme for #TakeTheMaskOff is diagnosis or self-discovery and its effects on masking. This is applied mostly to the experience of being autistic, but I can relate to it from a trauma survivor perspective too.

I haven’t yet read any of the other contributions for this week, but I assume the idea behind this challenge is that discovering you’re autistic, either through professional diagnosis or not, can help you drop a facade.

This is definitely true for me. When I was first diagnosed with autism in 2007, my staff claimed that I was using it as an excuse, because I reacted more to for example loud noises than I’d done before diagnosis. Similarly, my parents claimed that I was over-protected by the staff who felt I’m autistic and this led to my psychiatric hospitalization in November of that year.

To be honest, yes, I may’ve started to use autism more as an explanation for my behavior once I was diagnosed than I did pre-diagnosis. Note that I say “explanation”, not “excuse”. I don’t feel I need an excuse to act like myself, unless acting like myself were harming other people. Saying that we use autism as an excuse for our behavior is really saying that we should conform to non-autistic standards of behavior at any cost. Autism is an explanation for why I can’t conform to these standards, but even if I could, that doesn’t mean I should.

Then again, once my autism diagnosis was taken away in 2016, I did feel like I needed an excuse. And so did many other people. I was kicked out of autism communities that I’d been a valued part of for years. Suddenly, I’d been faking and manipulating and “acting autistic-like” all those years rather than just having been my autistic self. One Dutch autistic women’s forum’s members and admins were notorious for spinning all kinds of theories on why I’d been pretending to be autistic all those years and had finally been unmasked.

<PAnd at long last, I started to believe these people. I started to believe that self-diagnosis may be valid for other people, but it isn't for me. I started to wonder whether my parents were right after all that I'd been fooling every psychologist and psychiatrist before this one into believing I'm autistic.

This process of self-doubt and shame led to my first real episoede of depression. After all, if I’m not autistic, why did I burn out and land in a mental hospital? I’d been diagnosed with dependent personality disorder by the psychologist who removed my autism diagnosis, so were my parents right after all? I suddenly felt like I needed an excuse to act autistic-like, as if being autistic is indeed less than, not just different from being neurotypical.

I sought an independent second opinion and was rediagnosed with autism in May of 2017. I still am not cured of the idea that it takes a professional diagnosis to “excuse” a person from acting non-autistic. I don’t apply this to other people, but I do still apply it to myself and that’s hard.

I use this blog to counteract this self-stigmatizing attitude. This, after all, also applies to my status as a trauma survivor. I got my autism diagnosis back, but I never got and most likely never will get my trauma-related diagnoses back. I still mask, hiding my trauma-related symptoms when I can. And that’s not usually hepful in the long run.

An Eighth Grade Memory

Posted on by Astrid

I’ve been meaning to write a lot, but I can’t. I am having a lot of memories. That’s what they’re supposed to be. I already survived and am now safe and an adult, age 32, living with my husband. I don’t care, this pretty freakin’ hurts. One of my inner teens, Karin, hurts the most.

On November 17, 2000, I hid under a coat rack during recess. I don’t even know why. I mean, yes, I was feeling miserable and lonely. Kids in my class were bullying me and I had no friends. I was mainstreamed at the time, being the only blind student in my school.

My French teacher found me and called for the coordinator. My tutor had just gone on sick leave the day before and never returned to our school. The coordinator would act as my tutor from that point on. He sat across from me in the room where I’d been hiding under the coat rack. He held my hands and said: “Is something wrong?” I couldn’t communiicate. Not speak, not move, nothing. I was completely frozen.

Several months later, by the time my now tutor had become aware that I was feeling left out and lonely and being bullied by my classmates, he organized a class conference. Without me there. My classmates were allowed to say what they didn’t like about me. Then I was supposed to change those things. I was supposed to take better care of my personal hygiene and develop better social skills, so that I’d be less curt.

My tutor died in 2016. He cannot read this now, but my old tutor, the one who went on sick leave just before the coat rack thing, can. She found my Dutch website last year. Granted, it has my real name in the URL and this one doesn’t, but still. Maybe I shouldn’t write this, or publish this. But I want to. I want to get this off my chest.

I want to show that it’s not okay to blame a bullying victim for being bullied, even if the victim “elicits” it by acting weird. It’s good to teach a child about social skills and personal hygiene. I won’t deny that. It’s quite another thing to link that to bullying and say “You bring it onto yourself”. That’s what many people around me did say. That’s victim-blaming and it’s not okay.

Another thing I want to say is, if you wouldn’t subject a non-disabled student to something, chances are you shouldn’t subject your disabled students to it. Another boy in my class was being bullied too. My classmates asked for a class conference similar to the one held about me. The boy didn’t want it and this was respected. I was never even asked whether I wanted a class conference, because apparently, being blind, I was so special that I shouldn’t have a say. For clarity’s sake: I think class conferences like thsi one are an example of victim-blaming whether the bullied student agrees to them or not.

I Am Autistic #SoCS

Posted on by Astrid

I am autistic. Or I have autism, as politiically correct parents of autistic children would say. I prefer “autistic”. After all, autism is an essential part of my identity. It’s not like labels don’t define me and are just there for insurance coding purposes. Yeah, well, diagnoses do not define me. I am, after all, also multiple even though I don’t have a diagnosis of dissociative identity disorder anymore. Others do not define me. But my characeristics, including being autistic, do.

Saying “I am autistic” rathr than “I have autism” is preferred by the majority of autistic people. We also refer to ourselves as “autistic people” or even “autistics” rather tha “people with autism”. This is called idetity-first language, whereas “people with autism” is called person-first language and is politically correctly preferred by people wanting to erase the impact of autism.

I know, there are some situations in which a person may prefer person-first language regarding their own disability or identity. I don’t think this is wrong at all. However, people without said disability or belonging to said group should not dictate how we identify.

Identity-first language does not mean we can be called whatever the heck someone wants to call us. For example, a person with an intellectual disability should never be called “retarded”. That’s a slur. Even if said person has reclaimed that word – the R-word has not been reclaimed yet that often, but it might get to this point -, you cannot assume as a non-disabled person that you can just go about calling them the R-word. If in doubt, ask what a person wants to be referred to in regards to their disability or identity.

And of course, I want to be referred to by name most of the time. Unless another part or alter has taken over, but then some of them will be rather in your face about their name.

Don’t assume that political correctness is always preferred, but don’t assume anything really. We are all humans, all different and that’s valid. We should be loved and respected for who we are.

Linking up with Stream of Consciousness Saturday (yeah I’m late). The theme for this week is “-ic” or “-ical”.

ABC Tag

Posted on by Astrid

Over at Therapy Bits, carol anne shared the ABC tag. I love it, so I thought I’d fill it out too.


  • Age: 32 body-wise.

  • Books: ah, I love them! I’m not currently reading much, but love to read.

  • Colors: blue, green and purple are my favorites but I mostly wear dark colors.

  • Dream: to have a happy life.

  • Everyday starts with: opening my eyes, LOL. As for what I most enjoy about my morning routine, that has to be my breakfast of yoghurt with crunchy muesli.

  • Flower: hyacinth.

  • Goals: improve my wellbeing both phyysical and mental.

  • Height: 5 feet exactly.

  • In love with: my husband!

  • Job: blogger according to my Facebook profile, LOL. I’m unemployed but blogging is what I most enjjoy.

  • Kids: no outside kids but lots of inside littles.

  • Last thing I ate: yoghurt with crunchy muesli. Yeah, I just got up about an hour or two ago.

  • Magic power: I don’t know.

  • Number of fears: too many.

  • Outfit: currently I’m wearing jeans, a T-shirt and a golf shirt over the T-shirt.

  • Passions: writing, reading, soap making, walking, swimming.

  • Quotes: love them, but my favorites keep changing.

  • Reasons to Smile: a lot. Sunshine, a good book, tasty food, comments on my blog.

  • Season: summer! Love it.

  • Travels: would love to visit the United States and Ireland. Been to a lot of countries, but never outside of Europe.

  • Under water animals: dolphins are way cool! Oh and all kinds of whales really. I love their sound and when I still could see, I loved what they look like.

  • Vacation: my last one was to the Black Forest in Germany in 2014. I don’t really like going on vacation.

  • Worst habit: biting my nails.

  • X-Men character: no idea.

  • Your favorite food: fried chicken!

  • Zodiac sign: Cancer but if I weren’t a preemie, I’d have been Libra.

Weekly Gratitude List (August 17, 2018) #TToT

Posted on by Astrid

It’s Friday again. I don’t usually look forward to the week-end, but I love Fridays. They’re a wonderful day to reflect back on my week and remember what I’m grateful for. So here is my weekly gratitude list.

1. A stay at my in-laws last Saturday. My husband was visiting his grandma but, due to her cognitive decline, she would most likely not have recognized me, so I didn’t go. My mother-in-law took me on a walk with their dog and my father-in-law served us homemade pizza for dinner.

2. A long walk on Monday. At day activities, my group usually goes for a short walk on Monday mornings, but there’s another group who walk for like 50 minutes. An extra staff member was available last MOnday, who usually works at the group who go for the long walk but was at my group that day. She asked whether I’d like to walk with the other group while she was my sighted guide. I loved it in spite of a little rain. I really hope that I can regularly go walk with this other group. It depends on whether they think I need a one-on-one guide, which I don’t think I need.

3. Probably the last day for the year I could wear a skirt. Yesterday, the weather was good. It was warm, but not hot and there was a cool breeze too. As a result, I was able to go for another long walk with my support coordinator.

4. Managing half an hour on the elliptical on Tuesday. If I go on the elliptical tonight, tomorrow or on Sunday, I’ll also have crushed my five-day exercise goal. Not that I’ve been on the elliptical that often, but walking counts towards my goal too.

5. A good meeting with the Center for Consultation adn Expertise consultant on Tuesday. We don’t know yet what route she’s going to recommend us going re my care, as the next meeting won’t be till late September. However, I’m glad I was at least somewhat able to communicate my needs.

6. Walking around the day activities center almost with no help. On Wednesday, I asked the staff to accompany me on a walk around the building, so that I could see whether I can learn to do this independently. On my second try, I walked independently using my white cane but the staff was still close by. I’m confident that I can learn to walk this route independently. It’s only about a five-minute walk, but baby steps cunt too.

As you can see, most of the things I’m grateful for this week involve physical activity. I truly love this. I didn’t get to ten things of thankful this week, because I’ve been feeling a little off, but reflecting on the things I can still be grateful for sure does help lift my mood.

Linkign up with Ten Things of Thankful and Thankful Thursday.

How to Proceed in Our Mental Health Treatment

Posted on by Astrid

So we met with our nurse practitioner for dialectical behavior therapy again. This was our first session since I started considering dropping out. I am still unsure as to what I want, but I’m pretty sure that just working the manual in a very structured way isn’t working for me. I also wondered out loud how long this treatment is going to take and whether I think it’s worth it. With regards to this, my nurse practitioner explained that behavor change takes a long time because we learned our patterns from babyhood on.

We started discussing the “pieces”, as we call the alters when talking with our treatment team. My nurse practitioner said he wants to discuss this with the psychiatrist. I doubt much will come out of that, as the psychiatrist keeps the status quo as to whether we’re dissociative or not. She most likely believes we’re not, but wants to bring it diplomatically.

We went some into our original trauma, which involves my parents not having been given a choice as to whether I should be actively treated after my premature birth. They weren’t sure themselves and were told the doctors were keeping me alive and not to interfere or they’d lose parental rights.

My nurse practitioner also mentioned a book and movie about a person with multiple personalities (possibly Sybil). I am pretty sure my psychiatrist is going to stomp that association right out of him, as like I said, she probably doesn’t believe I’m dissociative.

After leaving the session, we were pretty unquiet. Katinka tried taking over from Clarissa, who usually does DBT, to get back into daily functioning mode. That was only partly successful. Our support coordinator arrived ten minutes after we got home and we were still pretty unquiet. We were able to calm down eventually and enjoy a walk.

In the evening, when our husband got home, we discussed the session with him and asked him to come to our next psychiatrist’s appointment on Tuesday. The original reason the psychiatrist had asked him to come is that she’d gotten the impression that we have relationship struggles. That upset my husband, of course. I finally managed to say that I want to discuss where to go from here regarding treatment.

There are several options. I could proceed as I have until now, which seems like the least productive option. I could stop going to therapy altogether or just stay with the team for med management and the ability to call someone when not feeling well. Or I could do more supportive therapy focusing on my emotional pain. This then could again be focused on several aspects of my life and it could or could not involve the “pieces”. I think that last option sounds best to me, but since it wouldn’t likely be based on a protocol such as DBT, I don’t think my psychiatrist would accept this. A fourth option, which I just realized when talking to someone on Facebook, is staying with my current team for med management and crisis support and going to another therapist for formal psychotherapy. I don’t think that’s a realistic otpion though.

Remembering the Onset of My Temper Outbursts

Posted on by Astrid

I have been a member of groups on the topic of disruptive mood dysregulation disorder (DMDD) for the past year or so. DMDD was introduced to the psychiatrist’s manual with DSM-5 in 2013. It is a condition in which a child or teen is irritable or angry most of the time and has severe temper outbursts on average at least three times a week for a period of at least twelve months. The diagnosis cannot be made in a child under six or a person over eighteen. This being the case, I’m not in these groups because I currently think I may have DMDD, but because I think I may’ve had it as a child.

According to my parents, I was just a little immature emotionally until the age of around seven. I switched schools, transferring from mainstream Kindergarten to a school for the visually impared, when I was nearly six in 1992. In 1993, I started to learn Braille. This is around the time my temper outbursts started. According to my parents, I wasn’t even regularly irritable up to that point. They describe me as a relaxed, cheerful child.

My own memories are hazy. Of course, I remember temper tantrums from before age seven, but what child doesn’t have those at times? Between the ages of seven and nine, my mood got worse and worse. I remember being suicidal at around the age of eight.

So was this DMDD? We will never know, as the diagnosis didn’t exist back in 1993. Was it, like my parents believe, a way of expressing my frustration with the fact that I was going blind? Was I being manipulative, also like my parents think? Trying to elicit care from my parents and professionals by acting out? Or was it a form of autistic burn-out? Had neurotypical developmental expectations overwhelmed my autistic brain?

Like I may’ve said, my parents don’t believe I’m autistic. They believe I have some traits, but not enough to impair my functioning or warrant a diagnosis. They say I’m just blind and of genius intelligence. And oh, the rest is just me trying to manipulate people for attention. They don’t seem to realize, then, that I, too, suffered from my irritability and anger outbursts.