Because I’d Had a Stroke…

Posted on by Astrid

I couldn’t possibly be autistic, my psychologist said, because I’d had a stroke as an infant and that somehow precluded a diagnosis of autism. Never mind that autism is genetic and said stroke supposedly didn’t change my genetic makeup to make me neurotypical. I, however, had to be diagnosed with acquired brain injury-related behavior change instead, but then again I couldn’t either, because I was too young when I sustained the stroke for my behavior to be considered as having changed either; after all, a six-week-old infant hardly shows any behaviors that would be considered significant in an adult. For this reason, I ended up with just some regular personality disorders, specifically dependent and borderline PD. Never mind that these have their onset in early adulthood and I’d shown symptoms since childhood. As it later turned out, my psychologist’s reason for changing my diagnosis had nothing to do with logic and everything with her wish to kick me out of care.

This post was written for the Six Sentence Story link-up, for which the prompt word is “stroke”. It isn’t completely factual, in the sense that, though my psychologist kept referring to what happened to me at six weeks of age as a stroke, it was actually a brain bleed. That doesn’t change the rest of the story though.

Five Years Ago #Write28Days

Posted on by Astrid

Welcome to day four in #Write28Days. Today, I am not going with the word prompt. It is “Make” and maybe I can make the prompt fit into my post somehow (pun intended). Not sure though. Instead, I picked one of Mama Kat’s Writer’s Workshop prompts. It asks us what, if we could give ourself a snapshot five years ago of what our life would be like now, it would look like and how we would’ve felt.

Five years ago, I still resided in the psychiatric hospital with the intention of leaving for my and my husband’s then home by my 30th birthday on June 27, 2016. I still trusted my mental health professionals to a degree and had at least some trust in my ability to live with my husband. The whole saga of my changing diagnosis, or diagnonsense as I called it, hadn’t happened yet.

I just checked my old blog for what I’d written in February of 2016. I admitted, in some posts, that I still struggled with the reality that I hadn’t fulfilled most of my childhood dreams and yet wasn’t a total failure, in that I’d be living with my husband. I didn’t use the word “failure”, but my writing certainly connotes that I should feel like a failure if I need residential care for the rest of my life. Which possiblity I held open to an extent, and which indeed came true.

I mean, I got kicked out of the psych hospital not by the summer of 2016, but by May of 2017. Then lived with my husband for nearly 2 1/2 years, until I was accepted into the care facility.

If I could give myself a snapshot of my life right now, it’d likely be of my room here at the care facility with my one-on-one staff in it. I might give myself an additional snapshot of my and my husband’s house in Lobith to convey that we’re still together.

Honestly, I have no idea how I’d have felt about these snapshots back then. I mean, four years ago is easier. Then I’d certainly have been elated at knowing I’d eventually end up in long-term care despite all the attempts my psych hospital staff took to prevent me getting the care I need. But in early 2016, I may not have seen this need.

Probably, the most likely emotion I’d have felt is mistrust. I mean, how could I possibly ever get the level of care I never even openly admitted I needed? I mean, I never asked for one-on-one, but got it anyway. How is it possible that people truly saw this? I can hardly believe it now, let alone five years ago.

Looking back at my life five years ago, however, makes me so intensely appreciative of the life I have now! I thank the Lord for sending my former support coordinator, the Center for Consultation and Expertise consultant and my current staff into my life, as well as the funding authority people in charge. Without these people, I honestly don’t know where I’d be right now.

Mama’s Losin’ It

A Time I Decided to Speak Up for Myself

Posted on by Astrid

The weather has cooled off some, but I’m still somehow lacking motivation to do much. For this reason, I scrolled aimlessly through some journaling prompt books I have in my Kindle app. In one of them, one of the prompts that caught my eye was to recall a time when you spoke up for yourself.

I am usually not one to speak up for myself easily. Especially not when the person I’m needing to advocate to is an authority figure. The memory I’m going to describe involves my last psychologist at the psychiatric hospital.

She was somehow convinced that I have dependent personality disorder. There are good reasons to think so, but her reasons were not among those. To put it bluntly, she thought I misused care.

More importantly than her diagnosis of DPD though was her removing my autism diagnosis that I’d had for nine years. She believed that I could not possibly be autistic because I had a brain bleed as an infant and that instead my diagnosis should be some form of brain injury. She ended up putting hydrocephalus (which I’d developed as a result of the brain bleed) on axis III of the DSM-IV classification and that apparently should suffice in explaining my difficulties. That plus, of course, DPD. Well, it didn’t.

Like I said, I have trouble sticking up for myself. This is indeed a DPD criterion. Honestly I don’t even care whether I might have DPD actually. I can see how I have some traits. But DPD is different from care misuse. And that’s what my psychologist was accusing me of.

So I finally decided to stand up for my rights and demand an independent second opinion. This was extremely hard and my psychologist had been successfully trying to talk me out of it before. Not this time though. In February of 2017, I had an appointment with a clinical neuropsychologist at Radboud university medical center in Nijmegen. Three months later, on my would-be discharge date from the mental hospital, I got my autism diagnosis back.

Autism, of course, doesn’t explain everything I experience. I might have DPD too. And God knows what else. But I don’t misuse care.

My psychologist, interestingly, claimed that I spoke up for myself really well. That’s a rather contradictory statement to the DPD diagnosis. After all, dependents are often seen as passive. I still wonder why she didn’t have the balls to “diagnose” me as a malingerer.

Friday Flashback: Diagnonsense, Oh Diagnonsense!

Posted on by Astrid

Today I’m joining in with Fandango’s Friday Flashback and sharing a post I wrote exactly three years ago on my old blog. I let my domain registration for the blog expire this week, but it’s still available on a WordPress subdomain. With this post, I have edited out typeos and am not going to keep all the internal links. I’ll provide a link to the original at the bottom of this post.

A few months ago, I wrote about my changing diagnosis. My autism diagnosis that’s been confirmed three times since 2007, was removed. That left me with just borderline personality disorder (BPD) as a diagnosis. If you thought I gracefully accepted this, you do not know me. I consulted with the patient liaison person at my institution, who recommended I seek a second opinion at another hospital. Now, three months on and we’re back at square one, and it’s not because an independent provider agreed with my psychologist.

On August 15, I talked to the patient liaison person, who on that same day E-mailed my psychologist asking her to make the necessary arrangements for me to get a second opinion. Instead, my psychologist told me she wanted to contact a psychiatrist at the brain injury unit first to inquire about the diagnosis of autism in people with brain injury. This doctor told her that indeed autism shouldn’t be diagnosed in people with brain injury, but the same is true of BPD. My psychologist would need to diagnose personality change due to a general medical condition instead. I stupidly agreed with her changing my diagnosis herself rather than sending me to an independent psychiatrist or clinical psychologist.

My psychiatrist, who is the head clinician responsible for my care, however, disagreed with my psychologist’s diagnosis. My named nurse said they were throwing around all sorts of diagnoses at my treatment plan meeting last month. Eventually, my psychologist informed me they’d settled on dependent personality disorder, borderline personality disorder traits and a developmental disorder NOS. I hate the DPD label, but can see how I might have some of its features. I needed to see my treatment plan to see what they’d meant with developmental disorder NOS, which isn’t a diagnostic code in DSM-IV unless prefixed by “pervasive”. That would essentially mean autism. As it turned out, they hadn’t settled on this diagnosis, as the developmental disorder was gone.

Instead, I now have DPD, BPD traits and depressive disorder NOS. I asked my psychologist whether this was a coding typeo, but it wasn’t. Her explanation was that I may formally meet the criteria for this, but the main reason for the diagnosis is for insurance purposes. You see, I can’t be in the mental hospital without a diagnosis on axis I (anything that isn’t a personality disorder). A nurse even twisted my psychologist’s actions like she’d done me a favor.

Last week, when I found out my final diagnosis, I lost it pretty much and was considering checking myself out of the institution. My psychologist was called, because the nurses thought I said I was definitely leaving, which I can’t remember having said. My psychologist encouraged me to leave right then, which I refused. My husband instead came to pick me up the next day for a night at home to have some distance.

Today, I spoke to the patient liaison person again. She was not happy at the fact that my psychologist had failed to cooperate with me in getting me a second opinion. This essentially means we’re back at where we started and I’m probably going to ask my psychologist to get me a second opinion again soon.

https://bloggingastrid.wordpress.com/2016/11/22/diagnonsense-oh-diagnonsense/

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.