Ramblings on Self-Image and Diagnosis

This afternoon, I was discussing y treatment plan with my psychologist. I heard her saying something about diagnosis and treatment being complicated by a combination of autism with axis II symptomatology. "Axis II," I thought, "that's personality disorders. Have they finally gotten to diagnose me as BPD?" And yes, they have. And instantly the DID and PTSD diagnoses went out the window. Not only that, but BPD, not Asperger's, is my "main diagnosis" now.

What does this mean? I anticipated it for a long time. In fact, I've always doubted the diagnosis of DID. When initially diagnosed, I was too overwhelmed by some of the consulting psychologist's questions to answer them with the nuance they required. Like, the psychologist asked whether we are aware of what happens when another alter is out. I said no, but the real truth is that we could not have known, since if we lost time, we would only find evidence later and not know that an alter had been out unless we'd had soome awareness of that alter.

I have a very unstable self-image, which goes with both DID and BPD. In addition, I need concrete qualifiers for myself, which I theorize could be an autistic feature. This gets me to identify myself not with abstract characteristics like creative, intelligent or whatever, but with the labels I've been given. I've gotten better over the past year or so at identifying myself with neutral labels like crafter and blogger.

At the same time, I still do have characteristics that are more abstract. I am not just an autistic, a crafter and a woman. I am not just a dissociator or a borderline. Yet what I am in terms of these labels, fundamentally impacts how people see my characteristics. Like, borderlines are generally assumed to be manipulative attention-seekers. If I'm seen as manipulative when a vulnerable alter is out, for example, that means my needs won't be listened to. In contrast if I'm seen as vulnerable when I'm manipulating, I won't unlearn to manipulate. Furthermore, my poor self-image may not alter the core of my mental problems - whether that be a drive to manipulate or emotional vulnerability or both or soomething else entirely -, but it sure alters the way I perceive this core.

Undiagnosed Symptoms Are Just as Real #IIWK13

Just a few weeks ago, I found out about this year's Invisible Illness Week, which starts today. I already heard of it years ago, but never quite took the time to write for it. Until now. Today, I want to share my experience to get awareness of what invisible illness is like, and especially, how it can take years to get a proper diagnosis (and hopefully treatment).

I have suffered from my symptoms, which include fatigue, random aches and gastrointestinal symptoms since 2007. I went to my doctor for the first time in late 2007, having had diarrhea on and off for half a year. She chalked it up to a stomach bug. Then, when I got it through to her that it'd been going on for months, I was examined and the doctor found I was actually constipated. Well, nice. Drink lots of fluids, eat lots of fiber, but the symptoms did not go away. I was eventually put on a laxative, which worked to some extent but gave me bad cramps.

For the fatigue, I got various blood tests and these revealed iron deficiency, then B12 deficiency, then nothing. I was told that the random aches were just stress. Not that this makes them go away, but oh well.

My symptoms are still there, and I don't have a diagnosis, although I self-diagnose as having irritable bowel syndrome, because I honestly don't buy into the constipation theory. I feel out of place in the chronic illness community not having a diagnosis, and of course I want my symptoms to be something simple that isn't a chronic illness. Then again, it's not like symptoms are less real just because they don't have a label to them. Many people, like myself, take months to years to go see doctor, longer to see the right doctor, and maybe I'll never find out what's really going on with me or get adequate treatment. Maybe I will at some point. I hope so.

The Childhood Bipolar Controversy Reviewed

Bipolar disorder in children is controversial. It didn't use to be diagnosed as often as it is now, especially in the U.S., and more atypical symptosm are suggested to be bipolar. In the journal Child and Adolescent Mental Health, Boris Birmaher reviewed the literature surrounding this controversy. It's an interesting article, viewing the controversy from all sides.

Birmaher starts by describing the diffiuclties diagnosing manic, hypomanic and depressive episodes in children and adolescents. Particularly, it is hard to distinguish symptoms of (hypo)mania from normal episodes of increased activity or from ADHD. Depressed symptoms are also hard to diagnose because children do not always feel or look depressed all the time. Adolescents experiece more atypical symptoms (increased sleep and appetite and weight gain) than adults do. Birmaher discusses whether onepisodic mania can be seen as bipolar.

He fortunately also shreds the idea that irritability only is bipolar. It isn't. In fact, it is not severe mood dysregulation (also known as disruptive mood dysregulation disorder) eitehr, which surprised me. Irritability only is more indicative of ADHD or disruptive behavior disorders than of bipolar or SMD. Elation only, also, is not common in childhood or adolescent bipolar. More likely, patients experience both irritability and mood elation.

Birmaher is quite clear that pediatric bipolar disorder exists. The prevalence is around 2%, with just over 1% of children and adolescents presenting with bipolar I. For some perspective, Levorich et al. (2007) show that as many as half of adult bipolar patients in their study reported onset in childhood (14%) or adolescence (36%).

Birmaher is not a bipolar proponent, in the sense that he thinks atypical symptoms warrant a diagnosis of BP. He makes it quite clear that more research is needed into the risk factors for converting from atypical or subsyndromal bipolar-like symptoms into full-blown bipolar in children and adolescents. It looks like family history of bipolar is one such factor. Levorich et al (2007) found that, the earlier the onset of bipolar disorder, the more likely the patients were to have a parental history of bipolar or depressive disorders.

Levorich et al. (2007) particularly studied prognosis in adults with bipolar disorder, comparing those with (retrospectively reported) childhood or adolescent onset bipolar to those with onset in adulthood. They found that, the earlier the onset of the disorder, the more likely patients were to suffer from dysphoric (irritable) rather than euphoric mania and the more likely they were to have comorbid anxiety and drug abuse. In addition, the researchers tracked all participants' mood over a year's period. This showed that those with early onset bipolar had more depressed episodes, more severe manic and depressive symptoms and fewer good days in a year than those whose bipolar started in adulthood. For these and other reasons, Levorich et al. advocate an active ruling in or outo f bipolar d isorder in children and adolescents, rather than it being considered a last resort diagnosis.

References

Birmaher B (2013), Bipolar Disorder in Children and Adolescents. Child and Adolescent Mental Health, 18: 140-148. DOI: 10.1111/camh.12021.

Levorich GS, Post RM, Keck PE, Altshuler LL, Frye MA, Kupka RW, Nolen WA, Suppes T, McElroy SL, Grunze H, Denicoff K, Moravec MKM, & Luckenbaugh D (2007), The Poor Prognosis of Childhood-Onset Bipolar Disorder. Journal of Pediatrics, the, 150(5):485-490. DOI: 10.1016/j.jpeds.2006.10.070.

Autism and Justified Anger

On my autism treatment and acceptance, Autisticook commented by saying that anger in an autistic is often justified. She compared it to the situation where a wheelchiar user gets angry because they are faced with yet another two-step staircase that wasn't necessary and where nobody thought of installing a ramp. This made me think: are we overpathologizing anger in people with developmental disabilities (and mental illness)? Are we incorrectly assuming that anger is part of the disorder, while it's just a response to a lack of accommodations? This is obviously not a scientific discussion, as what is a reasonable accommodation depends on your perspective.

I just a few days ago heard about cognitive accessibility, where people accommodate their language, for exxample, for understanding by people with learning difficulties. I'm trying to find an accessible and understandable explanation of this, but can't seem to find one. What I understan dit to mean, includes for example using simple, straightfoward language. With autistic people, you may need to refrain from using figures of speech, for example.

What if you were dropped in a country where you didn't speak the language and everyone refused to speak English? Would you get angry? Quite likely you would. Now understand autism as communicating in a different language, too. Is it strange then that the autistic gets angry when you routinely refuse to make an effort to speak their language?

Autism is not just a communication disability. It's in a way a sensory disability, too. Imagine, again, being in that foreign country and everyone shouting at you for whatever reason. They also randomly shine a flashlight at your eyes for whatever reason. In addition, this country is rich on insects, and they crawl over your body all the time. Would you get frustrated? Sure you would!

We do not medicate wheelchair users for getting frustrated at the umpteenth staircase. You would not want to be put on medication if you were in the aforementioed country. So why do we medicate autistics who are irritable? It's probably because accommodating them requires a radical paradigm shift in what we always thought access was all about. Is it a more radical shift than the shift towards wheelchiar accessibility? I am not sure.

Let God Make Something of Your Life

I just read this devotional on following Jesus in a world that expects leadership. We need to let Jesus make something of our lives and to follow His example.

At first, I was a bit annoyed at the presumption that we do not need to make something of our lives, but let Jesus do so. Are we going back to blaming God for our choices and everything that happens to us? But then I read on and saw what following means: accepting Jesus as our leader and following His example. Of course, the author of this devotional includes all the worthwhile things Jesus did. Some atheists around me are going to point out that Jesus set a poor example if we have to believe every word of the Bible literally. I don't take the Bible literally, and I believe Jesus was a great leader in His time. Being both human and God, He lived a life on Earth influenced by the times. He did things we disapprove of too during His human life, and the authors of the Bible (FYI: I do not believe God wrote the Bible, He just inspired it) made their own interpretatios of His actions. Those of us, includign myself, who understand God to be loving and graceful, need to extent the same to other humans. We take Jesus as an example, not in every little thing He did, but in the greater values that He promoted. That's where I disagree with the "follow the leader" analogy.

We also must keep in contact with God thorugh Jesus, and let Him make something of our lives. As I said, this is not a passive waiting process. It is active: God has a purpose for us but we need to let Him work in us and follow what we learn that way to make this happen. We need to actively accept the gift of God, not passively assume it will unfold itself someday.

Family Offered $86K to Take Son out of School, Waive Complaints of Abuse

I don't normally use trigger warnigns but this post sure requires one for graphic descriptions of abuse.

@mamabegood on Twitter just posted a news story that says that a family was offered $86K to keep their autistic son out of public school. That's what the title reads. The actual story is much worse and includes abuse at the hands of a teacher.

This story, unfortunately, is not an isolated case. Many children and adults with autism get abused by professionals in whose care they've been placed in one respect or another. The details of the abuse in thsi particular story remind me of a lot of "old-school" ABA therapy, where aversives were presumed to be the single most important factor in its success. David Swanson, the young autistic in this story, was force-fed by a teacher because he refused to eat with a metal rather than plastic fork due to oral sensitivity. Now imagine if I forced a sharp object into your mouth. This would sure be considered abuse. If you then vomited and I'd force you to eat your own vomit, that'd make the abuse even worse.

Honestly, even though this news report is generally okay, it's symptomatic of something I can't quite pin down that the most focus is put on the money offered to David's mother to take her son out of school. Is it that abuse of autistics is commonly excused because "they" (autistics) are difficult, aggressive maybe, hard-to-parent often, and many times won't meet up to the expectations of others? Please, if you've made it to this point in my post, let's join Mama Be Good on Facebook in a moment of silence. Thank you for reading.

Healing Quotes: Maya Angelou on Bitterness and Anger

"Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean." - Maya Angelou

I have always liked inspirational quotes, although I am getting a bit weary now that they're shared on Facebook all over the place without even as much as a personal commetn. I therefore want to write about thsi quote and express how it affects me.

Bitterness and anger are both emotions that come when something happens that we don't like and that we feel we don't deserve. But while bitterness is a passive emotion, one that gets people stuck in their feeling of beint treated unfairly, anger is an active emotion. It drives people to actually do something about the injustice done to them or about the consequences of this injustice. An example of this can be seen in Down with Dat's use of anger to fuel activism.

Anger really isn't the negative emotion we often think of, the emotion that paralyzes people into being consumed with self-pity. That is bitterness. Bitterness may actually also be like depression (not the clinical kind, but the everyday depression most people experience at times) rather than just anger, and, while we don't usually choose to be depressed, we can change our train of thought to convert it into anger and action.