Mental Health Ramble

Posted on by Astrid

The month of May is mental health awareness month. I’m not sure how much I can contribute to it. In fact, I only found out about it today. Since I have a cold right now, I really don’t feel like writing. Or really, I do, but my brain is too foggy I can’t come up with a coherent topic to write on. So I’m just going to ramble.

Since it’s mental health awareness month, I could share my story of how I found out I’m mentally ill. Then again, I honestly don’t know. Autism, which was my first diagnosis, isn’t a mental illness. Adjustment disorder, which I got diagnosed with upon my breakdown in 2007, isn’t really either. Thank goodness, it still qualified me for care back then. Since insurance coverage of care is diagnosis-based in the Netherlands, and adjusmtnet disorder is no longer covered, I wouldn’t have been able to get care with just that diagnosis later on. In this sense, it’s good that I was diagnosed with dissociative identity disorder and PTSD in 2010, then borderline personality disorder in 2013.

I am not even 100% sure I identify with mental illness myself. It’s really weird. If I were mentally ill, wouldn’t I need therapy? I don’t get any unless you count the meetings with my nurse practitioner every few weeks.

I don’t feel able to ask for more help on my own accord, even though I’m pretty sure I need it. I have been having a ton of weird symptoms lately and, though I’m getting by, is this really all there is to it?

I had a physical check-up at the mental health agency last February. I have a ton of issues that could be related to my mental health and/or the medication I take for it. Yes, despite the fact that I don’t even know whether I am currently diagnosed with anything other than autism, I take high doses of an antipsychotic and antidepressant. I don’t mind, but I do feel they need regular monitoring.

My psychiatrist would’ve seen me in March, at least that’s what she intended on in December. I still haven’t seen her. I do need to schedule an appt, but I’ve been taught through my years in the mental hospital that, unless you are a pain in the neck of others, there’s no need for you to see your treatment provider. I challenged this belief last year by scheduling an appot for my depression, but I”m not sure I can do it again.

Unusual Interests: Calendar Calculation and More #AtoZChallenge

Posted on by Astrid

Welcome to day 21 in the #AtoZChallenge. Today, I will be writing about my unusual interests. You see, like many autistic people, I tend to have interests that are intense and unusual in focus.

As a child, I was advanced for my age in math. When I was around six, my father taught me to do square and squareroot calculations. He used a set of squares (which were really computer chips) to teach me, laying three in one row and then squaring it to nine. I loved this.

When I was eight and the kids in my class were doing multiplication tables, this would be boring to me, as I had all tables from one to twelve memorized already. To make the activity useful for me anyway, I chose to start with the table of nineteen. Don’t ask me why I skipped thirteen to eighteen, but I did.

When I was a bit older still, I taught myself to do calendar calculation. Most people not familiar with autism I encounter have never even heard of that skill, which is a common savant skill in autistics. It involves calculating on what day a certain date falls. Usually, this skill is presumed to be memory-based, but I actually knew the rules for doing it. I also learned about the change from Julian to Gregorian calendar in 1582 and took those ten days that were skipped into account when working with dates before then. I have a newspaper article from late 1999, which I still treasure, titled something like “the fight about time” in Dutch. It explained why the year 4000, unlike other centennial years divisible by 400, shouldn’t be a leap year. How fascinating!

Later, I developed other “unusual” special interests. For example, I used to draw maps when I was around ten or eleven. I always drew Italy, though I knew a lot about topography in general.

When I was in the psychiatric hospital and touring potential supported housing places, I had no idea about their location, except which trains and buses to use to get there. I wasn’t as good with topography anymore. I at one point had most bus routes in my province memorized from Wikipedia.

Premature Birth: Living with “Preemie Syndrome” #AtoZChallenge

Posted on by Astrid

Welcome to day 16 in the #AtoZChallenge. I am feeling very uninspired and unmotivated once again. In fact, when my husband suggested I postpone today’s post to tomorrow and do it on procrastination, that felt tempting for a bit. Instead, I am doing it on the effects of premature birth.

I was born at 26 weeks gestation. This means I was over three months premature. I weighed only 850 grams. I had to be put into an incubator and had to be on the ventilator for six weeks.

I already shared in my B and C posts about the effects of my premature birth on my eyes and brain. Retinopathy of prematurity caused me to go legally blind. A brain bleed, called an intraventricular hemorrhage, caused me to develop hydrocephalus and possible cerebral palsy.

Because some preemies have a ton of hard-to-explain issues that fall under no one particular diagnosis, the members of the PREEMIE-CHILD mailing list coined the term “preemie syndrome”. This is of course not a real syndrome, but it is used to describe the fact that many children who were born prematurely fit into multiple boxes of disability to a certain extent, but may not meet the full criteria. For instance, some children’s motor impairments are too mild to be classified as cerebral palsy. Mine might be.

It is known that preemies are at an increased risk of developing neurodevelopmental disorders such as autism or ADHD. Then again, some clinicians don’t diagnose these conditions in preemies, as they reason this is somehow a different condition. I am not sure how I feel about this, as I don’t care about the exact syndrome but more about the symptoms. This was exactly what my psychologist told me to do, and then she changed my diagnosis for all kinds of weird reasons. But I digress.

I don’t mean “preemie syndrome” as yet another label to identify myself with. It’s not that simple. It’s just that we tend to fall through the cracks and I want to prevent that.

Multiplicity: Living with Dissociative Identity Disorder #AtoZChallenge

Posted on by Astrid

Welcome to day 13 in the #AtoZChallenge. I had today’s theme in mind for a while, but then I realized I already shared about my experience of being multiple in early March for DID Awareness Day and Plural Pride Day. Several other possible topics floated through my mind, but none felt right. So instead of choosing a topic I don’t know what to write about anyway, I”m choosing multiplicity again. I will try not to repeat myself in this post. As such, I recommend those unfamiliar with dissociative identity disorder read the post I wrote last March first.

We are a system of, last time I counted, 26 alters. Most are female, ranging in age from one month to 42-years-old. Each has a different role in our system (the whole of me). We don’t subscribe to rigid categories of alters. Like, the currently most scientifically proven theory of dissociation distinguishes between apparently normal parts (ANPs) who do the daily living and emotional parts (EPs), who are stuck in trauma time. Though most of us can be put into one of these two categories, we prefer to refer to them by different terms. We for a while tried dialectical behavior therapy (DBT), in which the different states of mind are called rational, emotional and wise mind. We see the ANPs as rational mind, the EPs as emotional mind and wise mind would be if all these parts can constructively cooperate.

Another way of distinguishing alters is by categories such as protector, persecutor (often a perpetrator introject), inner self helper, etc. We do have an inner self helper of sorts. Other than that, our roles are more complex than these. I mean, some of our protectors can be highly destructive relationally.

As you may know, dissociation stems from severe, repeated trauma in early childhood. This used to be thought to only encompass sexual and ritual abuse, but more and more people are realizing that physical and emotional abuse and neglect can also cause DID. There is no evidence that the severity of one’s trauma can predict the extent of dissociation. For example, we didn’t endure major sexual violation at all, but still have a pretty large system. DID is largely seen as an attachment-based disorder now, so insecure attachment early on could predispose one to further dissociation even in the event of relatively “minor” trauma. I, for one, was at a disadvantage already due to being born premature.

I also think that people on the autistic spectrum are more likely to develop DID than neurotypicals, because living in a neurotypical world predisposes us to a lot of trauma. I remember once, when in a Dutch DID community, being told that autism is so pervasive a disorder that it keeps us from developing multiple personalities. There is absolutely zero evidence for this.

I had a nurse practitioner’s appointment last Thursday. At the end of it, we got to debate the end goal of treatment (even though I haven’t even been formally diagnosed with DID yet). The three phases in treatment are stabilization (learning coping skills and internal cooperation), trauma processing and finally integration. There are some DID therapists who believe merging of all alters is a requirement for completing DID treatment. Others mean rehabilitation into society when they say integration. We prefer cooperation to a full-on merger. We wouldn’t mind if alters merged spontaneously, but we have zero interest in forcing it.

Autistic: Living Life on the Spectrum #AtoZChallenge

Posted on by Astrid

Welcome to day one in the #AtoZChallenge, in which I’ll share a collection of miscellaneous musings. For my first post, I’d like to talk about a topic people who used to follow my A to Z posts on my old blog, are thoroughly familiar with, since I chose it for my theme in 2015 and 2017: autism.

I was first diagnosed with autism at the age of 20 in March of 2007. The clinician who diagnosed me, didn’t give me an Asperger’s Syndrome diagnosis, like my support staff at the time had wanted. I didn’t care, as I at the time already didn’t subscribe to the rigid subtypes of autism, be it Asperger’s, PDD-NOS or classic autism, or high-functioning and low-functioning autism for that matter. I believe autism is a spectrum condition presenting differently in every affected person.

Later, in December of 2007, I was diagnosed with Asperger’s after all. This remained my diagnosis, along with a few mental health conditions, until the summer of 2016. Then, my autism/Asperger’s diagnosis got taken away. The psychologist who changed my diagnosis, claimed that my premature birth and the brain bleed I suffered as an infant, preclude an autism diagnosis. As if those genetically wired to be autistic are somehow exempt from being born prematurely or suffering brain bleeds. I know that, because the exact cause of autism is still unknown, it may be hard to differentiate autism from the mental effects of brain injury. However, since said psychologist couldn’t diagnose me with acquired brain injury either, because I sustained the brain bleed before age one, I ended up with no diagnosis at all that could explain my social cognitive differences.

I sought an independent second opinion and, on May 1, 2017, was rediagnosed with autism spectrum disorder under DSM-5. I am diagnosed with level 1 ASD, which is the mildest kind. I am pretty sure that, if the psychologist had taken the opportunity to assess me in a more natural environment, I’d be diagnosed as level 2.

Autism is still diagnosed based on the presence of social communicative difficulties and repetitive behaviors and interests. As of the release of DSM-5 in 2013, sensory issues are finally part of the diagnostic criteria. In my opinion, they aren’t given nearly the amount of attention they deserve. Neither are executive functioning difficulties. This is a term which describes organizational skills. I scored high for ADHD on the initial screening tool, but couldn’t be further assessed for it. Though I’m pretty sure I have some ADHD-inattentive traits, they could just as easily be part of my autism.

Autism, like I said, presents with social communicative differences. These include, in my case, difficulty making and keeping friends, difficulty interpreting non-literal language and tone of voice. Of course, because I am blind, I cannot read body language. My conversations also tend to be one-sided, in which I’m either the listener or the talker.

The other criterion of autism is the presence of repetitive behaviors and interests. I engage in near-constant stereotypical, self-stimulatory movements (or “stimming”). My language can also be repetitive, but this is particularly clear when I’m overloaded. As for special interests, I don’t have a lifelong obsession, like Temple Grandin does with animal behavior. Rather, my interests, though they change often, can be obsessive in intensity and focus. For example, I used to have an obsession with calendar calculation (calculating what day of the week a certain date falls on).

My main autistic trait though is overload. This is also a common brain injury symptom. In that sense, I’m doubly blessed.. I tend to be both sensorially and cognitively very easily overloaded. This then causes me to stim more, use echolalia (repeat other people’s words) and may lead to meltdowns or shutdowns.

Something interesting about overload is that it rarely occurs when I’m engaging with my special interests. This may make you think I’m just lazy, but I’m not. For one thing, my special interests involve little offline interaction. For another, they are my special interests because I’m good at them.

I hope that through this post, you’ve gotten a little glimpse into my life with autism and learned something new. For those not aware, April is autism awareness month. I encourage you to read other blogs by autistic people. You will find that most have a kind of difficult relationship with autism awareness month. I, like them, prefer autism acceptance.

Five of the Most Significant Events in My Life

Posted on by Astrid

And once again, I didn’t post for nearly a week. I am beginning to feel pessimistic that I’ll complete the A to Z Challenge in April. However, I still would very much love to make it happen. I am pretty uninspired though.

To get back into the writing habit, I am choosing to write about a topic I’ve already posted about on my old blogs a couple of times. It is good though for my new readers of this blog to get to know me. I am going to share a list of important events in my life. Because I need to explain a little about each, this post may become a bit long.

1. The day I left the hospital at three months of age. I was born over three months premature and had to spend the first 94 days of my life in hospital. The unit I was on is commonly referred to as neonatal intensivecare unit or NICU for short, though I wasn’t in actual intensive care the whole time. I was on a ventilator for the first six weeks and, after I learned to breathe on my own, was moved to medium care, the general ward and eventually home. In the NICU, I sustained a brain bleed and developed an eye condition called retinopathy of prematurity. These two conditions are the main cause of my disabilities. I was finally discharged from the hospital on September 29, 1986.

2. The day I started special education. I started school, as most children here in the Netherlands did at the time, on my fourth birthday (June 27, 1990). I started in the first year of Kindergarten, which takes two years here. Just before the end of my second year in Kindergarten though, on May 11, 1992, I was moved into special education for the visually impaired.

The reason why I had to transfer remains a mystery. My parents say it was because I had to learn Braille, but I didn’t get to learn that till over a year later and only because a totally blind boy joined my class. The school was generally only equipped to educate those with low vision. Besides, the first special school my parents chose for me, was for those with mobility impairments. I was turned down because cerebral palsy isn’t my primary disability.

My inner five-year-old holds some memories of this situation. In our memory, I was ill with what could’ve been a partly psychosomatic illness just before moving to special ed. I cannot prove this though.

3. The day I started mainstream secondary school. My parents fought for years to get me out of special ed again. If I have to believe them, they fought from the moment I started in special ed to get me out again. They were convinced I’m far too intelligent for special ed, despite the fact that most schools for the blind offer a normal elenentary school curriculum. Anyway, they finally succeeded after taking me to the third ed psych in eighteen months, a psychologist who’d never even seen a blind person in his practice. This was also when I got labeled as gifted with a verbal IQ of 154. These three digits haunt me till this day.

I started mainstream secondary school on August 25, 1999 at my city’s grammar school. Those six years were awful. I scored above-average academically, but struggled socially and emotionally. I dissociated through most of my time there and hardly have any real memory of it.

4. The day I suffered my psychiatric crisis. After graduating high school in 2005, I’d taken two gap years to work on independence. While in my second gap year, I was diagnosed as autistic. Leading up to this was my increasingly falling apart at the independence training home. I got sent out to Nijmegen to live on my own on August 1, 2007 though. I fell apart within three months. By late October, I was wandering everyday, had multiple meltdowns a day and ended up suicidal. I was eventually hospitalized on November 3.

5. The day I got kicked out of the hospital again. I remained in a psychiatric hospital for 9 1/2 years, but eventually got kicked out on May 8, 2017. I believe the real reason is the government budget cuts to mental health, but my treatment team at the time blamed me. I have been living semi-independently ever since. As regular readers know though, I’m in the process of hopefully getting into long-term care again.

PoCoLo

Panicked Ramble

Posted on by Astrid

Hi, I’m Carol. I struggle a lot with our autism. I’m a little panicky at the moment. First of all, I woke up with terrible pain in my left shoulder. It’s been bothering me alll day. We finally took an ibuprofen when we got home from day activities at 5PM. It’s better now, but still bad.

This morning, I overheard the staff at day activities talking about a possible new client joining our group. I immediately worried that this’d mean I’d be kicked out. Not because they need the place (or maybe because of that too), but maybe if my challenging behavior worsens as a response to the staff being busier. That’s what happened at my previous day activities. Then again, they had three new clients join the group in a matter of weeks.

Moreover, we had a Christmas meal at day activities today. This meant my day was different from the usual Tuesday. One of the staff at my group had to help clean up after the meal, so she was in the kitchen most of the afternoon.

Then the staff started talking about day activities next week. They’re closed on Monday but open on thursday and Friday. Then, only six of us will be at the center, which really isn’t enough to justify staff being there. They said that the center normally closes if fewer than ten clients will be there. We want so badly to attend day activities and I somehow understood they’re considering closing the center next week. The staff reassured me, saying they had to set this rule for next year but for now the center will be open.

Still, when I got home, the whole thing overwhelmed me. I started seeing images in my mind of myself with worsening challenging behavior. I felt unsafe at home alone and rejected too. Like, they kicked us out of the independence training home in 2007 and out of the institution last year because of our behavior. Rather than giving us more care when we needed it, they gave us less. Same with the old day activities place. I really hope we can somehow find us suitable supported housing, but I’m so scared that no place wants me. I finally called the on-call nurse at the psych hospital and had a chat with her. That was good, but I feel guilty about having called, because my team say I really shouldn’t need the prescription phone call anymore.

Developing My Fighting Spirit

Posted on by Astrid

Over at Pointless Overthinking, DM asked what circumstance got you to learn something surprising about yourself. I already responded there. I explained briefly about the time my psychologist removed my autism diagnosis and diagnosed me with dependent personality disorder instead. In this post, I’m going to expand on my answer.

In August of 2016, it had come to my attention that my psychologist had changed my diagnosis. I was at the time hospitalized long-term and had had an autism diagnosis ever since 2007. For a reason I still only partly understand, she had decided to remove it. I’m pretty sure she didn’t fully understand her own reasoning either, as she kept coming up with different excuses. When I involved the patient liaison person and requested an independent second opinion, she even started to negotiate diagnoses.

Being a little too trusting of people’s good intentions, I at first went along with her proposal of a new diagnosis. I wouldn’t get my autism diagnosis back, but I would get diagnosed with brain injury-related emotional issues, which still gave me a reason to believe my impairments weren’t imaginary. It made some sense, in that my psychologst said the brain bleed I had sustained as a baby, was her reason for removing my autism diagnosis.

By November though, my psychologist came up to me to say that she’d rediagnosed me yet again. This was it and there was no further room for negotiations. My diagnosis was changed to dependent personality disorder, borderline personality disorder traits and “developmental disorder” not otherwise specified. I didn’t know what that last one was, but I accepted it anyway.

A week after that, I found out that the “developmental disorder” had not been put into my records at all, but instead depressive disorder NOS had been written into my chart. In Dutch even more than in English, these words are so differently spelled that it couldn’t have been a typeo. My psychologist finally admitted that she’d not diagnosed me with any type of neurological or neurodevelopmental disorder and wasn’t intending to either. She said she’d written depressive disorder NOS into my file because a diagnosis on axis I of DSM-IV is required for someone to stay in the mental hospital. She was vague as to whether she believed I was depressed, being convinced that I was still mostly just dependent. A nurse added insult to injury by saying the psychologist did me a favor by giving me an axis I diagnosis.

When I was first told I’d been diagnosed with dependent personality disorder, I assumed that the psychologist would probably remove it if I fought it hard enough. After all, DPD is characterized by passivness, compliance and an inability to voice disagreements with others for fear of losing care or approval. She said she wouldn’t. Besides, suggestible as I am, I quite easily tacked off the five out of eight required criteria.

At first, I was just angry and defeated. Pretty soon though, my fighter insider, Leonie, emerged. I requested an independent second opinion and this time I left no room for negotiation. I got re-assessed for autism in early 2017 and got rediagnosed on May 1.

Readers who don’t know me, might be wondering why I care. Well, the reason I care about my diagnosis is that I experience significant limitations that can’t be explained by just blindness. I do try my best and this to me signals that something else is going on. My psychologist felt I was making up my impairments. She didn’t say so, but she did say I couldn’t be diagnosed with autism because of my brain injury, yet I couldn’t be diagnosed with that either. She felt that the fact that occupational therapy was mostly ineffective, proved that I had no self-confidence. Her way of helping me develop self-confidence was to kick me out of the hospital almost with no after care. It was effective, in that it did allow the figher insider to fully develop.

Only later did I find out that, even though she rationalizes her decision to this day, it probably wasn’t about me. There are significant budget cuts to mental hospitals, so my psychologist was under pressure to kick some people out. She picked me, probably because of my relatively young age and the fact that I wasn’t psychotic. She claims that dependent personality disorder was the most appropriate DSM-IV code for someone with bad institutionalization syndrome. That completely overlooks the fact that I’d not been admitted to hospital for no reason 9 1/2 years prior, of course.

Dreams I Had for Myself as a Child #Write31Days

Posted on by Astrid

Welcome to day 18 in #Write31Days. Today’s post is all about dreams and life visions. Specifically, I am sharing the dreams I had for myself as a child.

The first dream I remember having about what I’d be when I’d grow up, was a writer. I may’ve said as a KIndergartner that I wanted to be a princess or whatever, but as soon as I could write with some confidence, I wanted to make my career out of that. I remember my parents telling me pretty early on that writers usually don’t make a living writing, but I didn’t care.

As I said before, I started out wanting to write fiction. I didn’t keep a journal consistently until I was thirteen and fiction was all that I knew before then. I didn’t get access to the Internet until age fifteen, but by the time I had an Internet connection, I was hooked on non-fiction.

Another dream I had for myself as an older child and teen, was to become a teacher. My ideas varied as to which grade or subject I’d like to teach. I definitely looked up to my teachers, so it’s no surprise I wanted to be one.

When I was around twelve, I started to deveop a dream of becoming a psychologist. I wanted to help children who were likely to fall through the cracks, as I had a feeling I was. I started hoping every episode of my parents’ favorite news program had a feature on kids with psychological problems. Once, there was an episode on about autism and I was hooked. This was nearly ten years before my own autism diagnosis. I had a feeling I was somehow like the boy in the program. Similar with a seventeen-year-old girl who was being restrained in a psychiatric hospital in around 1997. She was too smart for intellectual disability services but didn’t belong in psychiatry either. Something clicked with me, but obviously I couldn’t put my finger to it. I still really can’t.

When I was sixteen, I developed another dream. I wanted to study in the United States once in college. I would be majoring in American studies at university in Nijmegen, which'd offer motivated, talented students the opportunity to study in the U.S. for six months in their third year. I was at the time pretty sure I'd be talented enough. I loved reading up about American cities on City-Data.com.

Looking back, obviously, I didn’t make any of my dreams come true. I write, but not for profit and I don’t intend on it ever at all. I have some education in psychology, but am nowhere near a degree.

At the back of my mind, there always was that seventeen-year-old girl in the isolation room in the psychiatric hospital. I’ve not become her either, but I’ve come close. Then I rose up above my fate and now I’m an advocate. I’m happy as I am now.

Lessons Learned from Regret #Write31Days

Posted on by Astrid

Welcome to day three in my #Write31Days challenge on personal growth. Today, I picked a writing prompt from The Self-Exploration Journal, which is a 90-day challenge. The prompt is about something you regret. What did this experience teach you in the end?

I am choosing my decision to move from the city of Nijmegen psychiatric resocialization unit to a long-term care unit in Wolfheze, a town near Arnhem in 2013.

The rationale for this decision was totally understandable. My husband lived in Doorwerth, a town neighboring on Wolfheze. Since we were exploring the possibility of me moving out of the mental institution and in with him, it seemed just about logical that I’d move to Wolfheze.

What I hadn’t anticipated was that I’d encounter less than supportive staff in Wolfheze. When I went for an intake interview, the responsible psychologist wanted to place me in a sociotherapeutic house, whch meant you’d live practically independently with a few other clients but the staff would come to your house at set times. They reasoned this would be the best preparation for independent living. I don’t think they’re wrong about that, but it became more and more apparent that I couldn’t cope with independent living like this.

So I opted to go into the long-term unit with 24-hour care instead. Even this was a huge adjustment, as staff started expecting me to learn practical independence skills that were too overwhelming.

My new psychologist also pretty soon removed my diagnosis of dissociative identity disorder and PTSD, changing it to borderline personality disorder. From there, it went further downhill. My first psychologist was good enough. She eventually did realize that I’d need lots of long-term support even when going into independent living.

In 2014, I got a new psychologist. This wasn’t my decision, but the old one was leaving. This psychologist had the worst impact on me of all mental health professionals I’ve had in those 9 1/2 years in an institution. She decided right from the start that I’m not autistic. She started to tell me I have acquired brain injury and need to go into a training home to learn independence skills for that. Now let me tell you, i already went into a training home that caters to among other people, those who are blind and those with acquired brain injury. I am confident that this training home offered me the best possible independence training. Yet because it failed, I had failed and I had to try all over again. Since I didn’twant that, I was dependent and misusing care and needed to be kicked out of the institution.

I was eventually kicked out of the institution in 2017. I only later learned that it wasn’t about me, but about the huge budgets cuts to mental health. Of course, the Nijmegen institution would have to face budget cuts too, so I might’ve gone the same route had I stayed in Nijmegen. However, then at least I’d have had supportive staff.

What I learned from this whole thing is that supportive people are the most important. You can live in a better home or a better area, but if the people who support you through and through aren’t there, it’s not going to work.