Why Do I Need One-on-One Support? #31Days2021 #Blogtober21

Yay, it’s October and this means it’s time for Blogtober 2021. Last year, the prompts were based on song titles. This year, there are no prompts. However, Kate Motaung of Five Minute Friday also relaunched the 31-day writing challenge after a break last year and there are prompts for this year. The first prompt is “need”. We can do a five-minute freewrite, but I’m no good at sticking to five minutes or at not editing my writing.

Yesterday I had my care plan review. I was really concerned about my need for one-on-one support being reassessed later this year. Not that the care plan review would really matter for this or so I’m told, but now that we were all together (my home and day center staff, the behavior specialist and my mother-in-law), I wanted to raise the issue. It’s the behavior specialist’s job to write the reapplication paperwork and I questioned whether it sufficiently documented my need for one-on-one. To get things clear in my mind, I am going to write out why I need the support I need.

Firstly, I am blind and have a mild mobility impairment due to cerebral palsy. This, combined with my psychiatric illnesses, means I cannot move about outside the care home, or even outside of my room, independently much at all. This means that the staff need to be alerted when I leave my room looking for them, so that they can come out looking for me.

I am autistic. In my case, I get severely overloaded having to function in a group setting, such as at the day center. Even with noise-canceling headphones on, I still get distracted from trying to do things on my phone while there. Besides, if I do have functioning headphones, they will block out so much noise that I’m essentially cut off from my surroundings and can’t be alerted should something happen. This creates intense anxiety.

This anxiety also leads me to be unable to function on my own for long periods of time. I can, if I’m doing well, be left on my own in my room for up to about 30 minutes at a time. It doesn’t help that I know rationally that someone might be in the next room, because emotionally, if they’re out of earshot, they might as well be on the North Pole.

Autism also means I tend to fixate on routines. In my case, I tend to hyperfocus on the times my staff are going to leave me alone and this creates even more anxiety even when they’re still present. For this reason, staff need not stick to rigid rules of what time exactly they’re going to leave me, but rather to the order of activities.

If I’m left alone for prolonged periods of time, I can often feel incredibly unsafe and start to ruminate, which can easily escalate into self-destructive thoughts and actions. I may also run off in a fight-or-flight response.

I have complex PTSD, as well as dissociative symptoms. This means I can experience apparent age regressions. I get triggered very easily. Flashbacks, too, can lead to a fight-or-flight response.

Thankfully, now that I’m on the right medication, I don’t get as many flashbacks as before. However, I still do experience many serious behavioral issues that can be prevented or averted by the fact that I have one-on-one support most of the time.

I’m pretty sure a critical assessor would be countering that my one-on-one would not help me learn to cope with my anxiety. Thankfully, the goal of my long-term care plan is stabilization, not development. In other words, the original assessors for my long-term care funding did not feel I am trainable anymore. Otherwise, I would not have gotten approved for what is essentially lifelong care at all. The only thing is that my one-on-one care exceeds the care normally paid for by my long-term care profile. Oh well, let’s hope the assessor sees my need for it for at least another year.

The Puzzle and Its Pieces #SoCS

When I was first diagnosed with dissociative identity disorder (formerly known as multiple personality disorder) in 2010, I was already aware of some of my alters. I at the time explained to my therapist that the body or “Astrid” was the puzzle and the alters were the pieces. In other words, there was no host who “owned” the other alters as such. I felt that we needed to cooperate as one collective, not as one piece.

I was, at the time, unaware of the other significant meaning of the puzzle piece in my mental health experience, that is, its symbolism in autism-related lobbying. I mean, Autism Speaks and other cure-focused organizations employed the puzzle piece as a symbol of something being “broken” or “missing” about us autistics. That’s why autistic activists are so vehemently against it.

I personally till this day don’t mind the puzzle piece as much. I mean, I don’t like it that Autism Speaks uses it, but other than that, I’m not sure what I think of the symbol. I’ve heard the alternative is something like a rainbow-colored infinity symbol or something, which I have absolutely no concept of, never having seen the infinity symbol when I still had enough vision to picture it.

I do think the puzzle is a great symbol for plurality in general and dissociative identity disorder in particular. Another one is the kaleidoscope, but I don’t like that one as it is the name of the Dutch DID charity. That one is very exclusionary and kicked me out on the basis of not having a diagnosis given to me by someone they approved of.

So, the puzzle. The pieces, when cooperating perfectly, make up the proper image of what should be “Astrid”. Then again, that’s an ideal. Hard to achieve. I don’t think we ever will. And that, in my opinion, is okay.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “Puzzle”.

Riding the Train

Back when I still lived on my own in 2007, I would frequently ride the train. Or go to the train station planning to go on a train somewhere but melt down once at the platform. Then, people would often call the police.

I shared my experiences of riding the train, or wanting to do so, as an autistic and blind person on a public transportation users forum in 2008. I shared pretty much every little detail up till my crisis on November 2, which happened at a train station too. The person who had asked me to share, then pointed out that it might be a little TMI, but that’s how I am.


This piece was written for the Six Sentence Story blog hop, for which the prompt this week is “Train”.

My Worst Fear

This week, one of Mama Kat’s writing prompts is to share one of your fears. I have a lot of fears and phobias, to be honest. I probably would even meet the criteria for generalized anxiety disorder if it weren’t for my autism, which encompasses a lot of worry in itself already. In fact, when my former psychologist had removed my autism diagnosis, she at one point considered diagnosing me with GAD.

She ended up diagnosing me with dependent personality disorder though. And, as much as I used to fight this diagnosis, it fits in some important ways: being left all alone is probably one of my worst fears.

I obviously didn’t tick that box when filling out the screening questionnaires for my independent second opinion after said psychologist’s diagnosis. I also ticked the box for “very difficult” rather than “impossible” on the WHODAS (assessment of level of disability) question on being on your own for a few days. Obviously, that only got me assigned a lower number on level of disability, not a different diagnosis, but I wasn’t aware of this. Besides, my diagnostician was able to see through my not having ticked that one box, so, though she didn’t diagnose me with DPD, she did recommend I work on my self-confidence.

Whether it means I’m pathologically dependent or not, I don’t care though: I fear being left to my own resources. And to be honest, no amount of kicking me in the butt has helped with this so far. Neither have so many years of independence training and therapy. I guess I just need to live with it. And that’s okay at least as long as the authorities aren’t going to see this as a reason to revoke my access to long-term care.

I mean, it’s not just fear. I fear being left to my own resources because I legitimately have no clue how to live my life independently on a daily basis. I can, with a lot of difficulty, perform most activities of daily living, such as showering, brushing my teeth and getting dressed. I now mostly get help with these, because it costs me a ton of time and energy having to do them on my own. For those saying I used to do these things by myself, I would like to add that this came at a cost to my dental health and physical hygiene. But if I really had to, I probably could do all of this. However, where it comes to housework, I’m pretty much lost. I cannot prepare my own food. Like, when I lived on my own in 2007, I ate bread without toppings because I couldn’t put them onto my bread. I wouldn’t die doing this for a few days, of course, and there the “very difficult” answer on the WHODAS may be correct. But it would be my worst fear come true.

Mama’s Losin’ It

How I Cope With Stress

Today in her Sunday Poser, Sadje asks how we cope with stress. We all face stress in our lives, yes, even the most laid-back people out there. Maybe they’ve just found better ways of coping with it.

I for one find that a major stressor for me is frustration with my disabilities. For this reason, it may be that my parents thought I was very laid-back until I became aware of my blindness when I was around seven. Now, frustration in general, such as with failing technology, can set me off, but really so can frustrations when trying to accomplish something.

So how do I cope? Over the years, I’ve found several ways to ride the waves of frustration. Dialectical behavior therapy and in particular the ACCEPTS skill set has helped.

I find that distracting myself by focusing on something other than the frustrating situation or thing helps. This is hard with my autistic tendency to perseverate. For example, when I get frustrated with a polymer clay project, it’s currently hard to let go and focus on something else. But it is necessary. This is why my staff encourage me to take regular breaks and also do other activities, such as walking, besides polymer clay.

I also find that talking through my problems sometimes helps. Then, I may realize I’m catastrophizing or using other cognitive distortions. Often though, to get rid of a stressor, I need someone to take over part of the problem, or all of it, from me. After all, my problem-solving skills are practically nonexistent.

Other things I do to cope with stress include finding relaxing activities, such as diffusing an essential oil blend or lying under my weighted blanket. Lastly, writing about my stressors, problems or frustrations also helps.

What helps you cope with stress?

Hyper #WotW

Hi everyone! I haven’t felt like writing over the past few days because I’ve been perseverating on polymer clay. Today, I thought I’d write a post after all to sum up my week and my word for this week is “Hyper”. After all, I’ve not just been perseverating on a special interest, but it’s been costing me my sleep too. I was almost going to choose “Manic”, but that would be appropriating the bipolar community, as I doubt my episodes are bad enough to qualify even as hypomanic. They’re more like autistic or ADHD (not that I have that last diagnosis either) hyperfocus. So yeah, hyper.

I’ve been literally working with polymer clay for hours everyday except today for the past week. I’m improving, but not as fast as I’d like.

And it’s not even that I’ve created anything worth mentioning really. I mean, yesterday I decided to bake a project, but it didn’t turn out as good as I’d hoped.

Multi-Layered Polymer Clay Star

Okay, I did create a purple cat on Wednesday, because my husband had been asking for it everyday for a week. Purple because it’s the least ugly color for a cat out of the ones I currently own. My husband said it was pretty well-proportioned except for its whiskers, but then again that’d be practically impossible to do with actual polymer clay. I didn’t bake this figurine though.

Purple Polymer Clay Cat

Yesterday, like I said, I did bake something, but I was quite disappointed in its outcome. For this reason, I was up late ruminating about how to prevent it from getting ugly again. As you might see, it is a multi-layered star, so I figured if I baked the bottom layer first and then attached the unbaked second layer, baked again and so forth, it should work. I also figured I’d create my piece directly on the baking surface as to not have to move it too much. Well, there I made a mistake, because the baking surface I normally use is an oven dish normally also used for food. I until now figured it wouldn’t be a problem since I lay parchment paper under my polymer clay. Until today, that is. So now I promised my staff a new oven dish.

After this happened, I decided to give up polymer clay until I can go to the hardware store to get myself a tile to bake on.

In addition to hyperfocusing, I’ve also been spending more money than may be considered sensible. I mean, like I said a few times before, I won’t go broke anytime soon with my current spending habits, but with the fact that my special interests tend to be short-lived, it may not have been wise. On Thursday, I ordered some cookie cutters and an alphabet clay stamp set at an online store, only to be told yesterday that not everything is in stock and hence my order would probably be processed a week later. Then in the evening, I impulsively bought a whole lot of polymer clay supplies, including cookie cutters, from someone on Facebook. It seems to have gone alright, both the paying and the actual supplies being on their way. I decided to cancel my store order that evening. I might order the stamp set separately later.

Overall, though my perseverating might be a little worrisome, I’m trying to reason that I’m not getting into trouble yet and won’t in the foreseeable future even if my state of hyperfocus continues for a while. And it most likely won’t. The only thing I can hope for is that I won’t give up on the craft entirely then.

Word of the Week linky

My Top Ten Favorite Inspirational Memoirs

Hi everyone! Today I’m joining in with Top Ten Tuesday (#TTT), a weekly book-related meme. Since I don’t read nearly as much as I would want to or as book bloggers do, I don’t participate in this meme that often. I love it though! Today its topic is a freebie, so I get to pick one. And you know, I’ve always wanted to share about my top favorite inspirational memoirs. Here goes, not in any particular order.

1. The Hospital by Barbara O’Hare. This is a truly gripping memoir by a woman who survived secret experimentation and sexual abuse in a children’s psychiatric hospital. I read it back in 2018 and still love love love it.

2. Who Will Love Me Now? by Maggie Hartley. This is my favorite foster care memoir by this author. I reviewed it last year.

3. Where Has Mummy Gone? by Cathy Glass. This is another foster care memoir. It is my absolute favorite Cathy Glass memoir, but I love many others. See my review.

4. Today I’m Alice by Alice Jamieson. This is a memoir of a woman with dissociative identity disorder. Since I have this condition too, I wanted to share at least one memoir by someone wiht DID and this is the most recently-published one I’ve read. It was still published back in 2010, but I think it’s still available.

5. Let Me Go by Casey Watson. Yet another foster care memoir. Can you tell I love this genre? I was almost going to make this list all about those. Let Me Go came out last year and I reviewed it back in October.

6. No Way Out by Kate Elysia. This is a truly gripping story. It deals with sex trafficking of young women in the UK. I was going to review this one last year too, but didn’t get down to it.

7. Finding Stevie by Cathy Glass. Yes, another Glass book. This one deals with a genderfluid teen who is being exploited online. I really liked it. See my review.

8. A Road Back from Schizophrenia by Arnhild Lauveng. I had to google its English title, as I read it in Dutch. I am not sure it’s still even available, but it was definitely a great read.

9. Born on a Blue Day by Daniel Tammet. This is another older book which I read in its Dutch translation before I had access to Bookshare or eBooks. This is a memoir by an autistic person.

10. A Real Person by Gunilla Gerland. Okay, I’m getting annoying with my older books that I didn’t even read in English. Sorry. This was one of the first memoirs by an autistic person I read after being diagnosed myself.

Do you like memoirs? Any recommendations?

A Very Intense Day Today

Today was an intense day. I started it with a weigh-in. To my surprise, I had lost almost 2kg. Last week, I had gained 1kg compared to the week before, so I had decided to try to cut back on snacks. That lasted all of one day and then I was back to snacking as usual. I don’t really trust my scale, as it isn’t officially calibrated, but well, who cares? I feel pretty fit and healthy and at least remain within the same 2kg range.

At 11:30AM, I had a nurse practitioner’s appt. My new’ish assigned home staff attended it with me rather than my assigned day activities staff, who usually does. Yesterday, this staff had been my one-on-one too and we had discussed my frequent dissociation and switching. She asked me whether I wanted to talk about it to my nurse practitioner and at first I said yes. Then later in the evening, I got anxious and decided to E-mail my nurse practitioner. I explained about the frequent switching and flashbacks. I also expressed my concern that, if the alters take over too much, my team will resort to denying their reality and ultimately to denying my reality as a whole. Then I will have lost all the trust I’ve gained in my team so far.

I can’t remember the entire appt, but at one point, Jane popped forward. She is the one most in denial of my trauma-related symptoms and yet it seems like she’s always the first to pop out and reveal our being multiple to a professional. My staff had probably already met her, and I think so has my nurse practitioner, but not to this extent. Thankfully, neither one objected to her being openly out.

I started feeling depersonalized after Jane was back inside and it didn’t fully clear up till just about an hour ago. In the evening, it got particularly bad.

Then for whatever reason, Karin, one of our fourteen-year-olds, popped out and started talking about a high school memory. We were still partly in the here and now, as she apparently recognized our one-on-one. Thankfully, our one-on-one reassured Karin that she’s now safe and the memories are in the past. She also told us that our teachers and parents, while probably meaning well, didn’t really help us and that none of our issues is our fault. That still feels rather off. I mean, of course I didn’t choose to be blind, but my parents reminded me over and over again that my behavior was definitely a choice. They always saw (and maybe still see) me as one giant manipulator, not an autistic, multiply-disabled trauma survivor. And they’re not the only ones. If I’ve learned one thing in my nearly 35 years of existence, it’s that sooner or later, people will always come to the conclusion that I’m one giant manipulator.

Recovering From Autistic Burnout

Today, the prompt for Reena’s Exploration Challenge is one word: burnout. This word evokes so many thoughts, feelings and memories in me! After all, though I was never diagnosed as suffering with actual burnout, the reason is more that burnout isn’t a DSM-IV or DSM-5 diagnosis than my not having suffered it.

That is, I did indeed not suffer the classic shutdown-type burnout where people are too exhausted to function. Rather, my burnout was more of the meltdown type, where I got so irritable and dysregulated that I couldn’t function anymore.

In 2007, I suffered autistic burnout. This is an actual thing and is more and more recognized by autism professionals too. It involves an inability to function in daily life as a whole, not just work, due to the experience of being overloaded, being autistic in a neurotypical society.

I have shared my experience of landing in a mental crisis in 2007 many times before. I was at the time living independently (though with a lot of community support) and going to university. That all changed within a matter of days: on Tuesday, I was sitting an exam, while the following Saturday, I was a patient on the locked unit of a psychiatric hospital. First, while there, I had to stabilize. I had to get back into a normal sleep/wake rhythm and regain my will to live.

Once I was no longer nonfunctioning and suicidal, however, I had to get my life back on track. My social worker thought I could go into supported housing for autistic people. I, at first, thought so too. Until I saw all the criteria relating to independence, lack of challenging behavior, trainability, etc. That wasn’t going to work out.

To be quite fair, I never fully understood my actual level of functioning until sometime in 2020. I had wanted to prove myself for so long. I had worn so many masks that hid the real, messy truth of who I am. Consequently, I constantly overestimated myself and my abilities. So did the people around me. Until one day, in November of last year, I crashed again. I probably suffered another burnout. That was when my one-on-one support was started.

There still are voices in my head telling me I could, should in fact go back to my life of before my first burnout in 2007. Back to independent living and college. Otherwise, how can I claim recovery?

The thing is, people who experience work-related burnout, usually don’t go back to their exact jobs from before their burnout either, if to the same job at all. Why should I then go back to a life I hated from the get-go? I try to see recovery from burnout not in terms of recovering lost functioning, but in recovering lost pieces of myself.

I’m Not Broken (And Neither Is Anyone Else)

A few days ago, I got a notification on WordPress that someone had liked a post of mine called “People Aren’t Broken”. It was probably on an old blog of mine and I can’t remember exactly what the post was about. From what I remember, it was written in response to a person being officially diagnosed as autistic and seeing this as a reason they weren’t “broken”.

Indeed, before my autism diagnosis in 2007, I always thought I was “broken”. Same once my autism diagnosis got taken away in 2016. I still had a personality disorder diagnosis (dependent personality disorder and borderline traits), but I believed strongly in the stigma attached to it. That wasn’t helped by the fact that my psychologist at the time used my diagnosis to “prove” that I was misusing care. I wasn’t.

Today, I found out people applying for benefits are completely screened by some kind of information gathering agency. It made me worry that the benefits authority or long-term care funding authority will do the same, even though I already have both.

It’s probably the same internalized ableism (discrimination against people with disabilities) speaking up that tells me that, if I don’t have a “legitimate” disability (like autism) that warrants me getting care, I’m just manipulative and attention-seeking and generally broken. I am not. And neither is anyone else. Including those who actually do have personality disorders.

This post was written for today’s Five Minute Friday, for which the prompt is “Broken”. Of course, I could have (should have?) written a more spiritual post and, from that perspective, everyone is in fact broken. What I mean with this post, though, is that there’s nothing that makes certain people broken based on disability or diagnosis.