Monthly Archives: February 2014

Love with Actions, Not Words

“Dear children, let us not love with words or speech but with actions and in truth.” (1 John 3:18 NIV)

Many people experience on a pretty regular basis that words sometimes contradict actions. I personally experience that the words tht come out of my mouth often even contradict my own thoughts or what I wanted to communicate. Many people with mental illness or developmental disabilities find it hard to comunicate in words and, for some, this especially goes for affective communicaiton. This is why it is sometimes hard for people who do not know the person well to understand what they’re feeling. It is however also why people who know the disabled person well do appreciate hte person’s love and affection, because it is not shown in words but in actions.

I remember when I was yougn, when I and my parents had an argument or a fight, one of us would often say in an emotional voice: “But I love you!” This may’ve been so (I’m pretty sure my parents love me, and I love them), but it didn’t come across to me (or them, when I was the one doing this). Actions did.

These actions do not have to be material, but they do not have to be all immaterial etiehr. I still have a hard time balancing material gifts with gifts of kindness, mostly because I can be pretty, well, inconsiderate without meaning to. I know that the person who showers their partner with gifts, is not necessairly the most loving partner, but just communicating love, through either words or body language, isn’t always effective either.

Then again, a simple offer to help, a “Thank you”, etc. are actions of love that do not literally scream “I love you”. These actions, too, can be done to people other than your partner. Now I am not sure that in our modern society, “love” is the right word for our affinity to strangers, but you can perform acts that indicate appreciation to anyone.

My Experience with Disordered Eating #NEDAwareness

This week is NEDAwareness week, a week to raise awareness of disordered eating and body image issues, established by the National Eating Disorders Association. I have several things to say about disordered eating and body image issues, and at first, I was going to write a list of common myths about eating disorders. These, however, are all over the Internet already. The only thing I might be able to add is the Dutch perspective. However, another way of addressing common myths about disordered eating and body image is to share my own experience.

First, I do not nd have never had a diagnosable eating disorder. I do however have pretty significant issues with disordered eating and body image. I mostly engage in binge eating, which I do on average once or twice a week. I overeat on more occasions, but then I either don’t eat so much that it can be considered a binge or don’t feel as though I’ve lost control. You see, I’ve lost sight of what is and isn’t nromal, how much to eat, etc.

To get to a common myth anyway: many people believe that you can only have an eating disorder if you’r thin, and/or that anorexia is the most common eating disorder. In fact, in the Netherlands, there are twnety times more people with eating disorders who have a healthy weight than there are people with anorexia. Binge eating disorder, which is what I am closest to, is the most common eating disorder, followed by bulimia and then anorexia. I still encounter people, including nurses, who say that I “only” overeat, so what’s the big deal? About three years ago, I started occasionally inducing vomiting, and that’s when my eating issue first felt real to me. In reality, I’ve had binge eating episodes since adolescence.

I am overweight. Actually, I’m pretty sure I’m currently obese, but I haven’t weighed myself in months. On the Dutch eating disorder site I participate on, there were topics for discussing underweight and then healthy weight long before the admins finally opened a discussion thread on overweight. Most people believe that eating disorders are something you can overcome by just trying, and this is especially true for binge eating. I won’t say that people don’t minimize the struggles anorexics face, but with binge eating, people often assume that you just like to snack. On the same Dutch eating disorder site I mentioned, there is a blog post on the difference between an eating issue and an eating disorder, and someone who likes high-calorie food is portrayed as the one with the eating issue, while an underweight, restricting person is portrayed as the one with the eating disorder.

Let’s get one thing straight: you can have any weight and have an eating disorder. You can also display any number of eating-related behaviors and have an eating disorder. Examples of eating disordered behaviors include bingeing, purging, restricting, but also having rigid rituals or rules around eating. I know that rituals around eating dono’t mean you have an eating disorder per se, but they may be a sign of eating issues and they can interfere with healthy food intake and daily life. For example, if you’re so self-conscious about your weight (whether you actually are overweight or underweight or not) that you don’t want to eat in other people’s presence, this can lead to a lot of problems in your social life and can also mean you get less food into your body than you need, even if you’re not consciously restricting. Also, eating only a select number of foods or food types can be very unhealthy. I’ve heard of something called selective eating disorder, but this is not recognized by clinicians at this point. In my own experience, this habit interacts with my binge eating behaviors. For example, if I’ve had something for lunch that I don’t like (and I’m a very picky eater I’m told), I run a high risk of bingeing later in the day.

Lastly, I want to dismantle one myth that isn’t applicable to me personally: that eating disorders only affect white adolescent females. (Well, okay, I’m not an adolescnet anymore, but I’m white and I’m female.) There was a Dutch study in 2012 that asked around 250 high school boys about their eating and body image. As many as 25% had eating disorder features, including calorie counting (13%), being significantly underweight (10%) and laxative abuse (2%). This study showed the fact that eating disorders are probably underrecognized in males.

The BPD Behavior Double Bind

Attention-seeking, manipulation. Many borderline personality disorder patients are accused of these, and I struggle as I come to terms with the fact that, indeed, a lot of my behavior at least comes across like this. For example, a few weeks ago, my crisis prevention plan was changed to the effect that staff no longer need to make me come back if I run off. It’s up to me to decide whether to run off and, if I do, what to do about it. After trying to communicate my discomfort with this change and being told off with references to choices and responsibility a few times, I ran off and wandered for about an hour until the staff eventually decided to find me.

I can see in a way how this can be interpreted as manipulative. The staff also said I have tremendous power when deciding to run off, because there is no way the staff can responsibly not take care of me eventually.

To my defense, I find myself in situations many times where I communicate in a normal way that I need support and am not being heard because other patiets, with different diagnoses, are acting out more. For example, today I asked the staff to take me on a walk because I was feeling irritable. They couldn’t, because there are several patients in a psychotic break right now. I rationally understand that my needs need to go on the back burner when people are in more severe conditions, but at the same time, this feels like a double bind. If I act out, I’m attention-seeking, manipulating and it’s my responsibility, but if I ask for support in a normal way, I’m obviously not sick enough to need it. In this situation, how am I supposed to show that I’m genuinely not coping?

Book Review: Wosie the Blind Little Bunny by Rose King

Wosie the little bunny wanders away from the blueberry bush. Because she is blind, she cannot find her way back. She finds a stick to tap and feel her way around. At one point, she touches something soft with her stick, which turns out to be Bobo the bear, who’s sleeping. After Wosie explains that she is blind and what that means, Bobo agrees to bring her to the blueberry bush, and they end up being friends from that point on.

Wosie the Blind Little Bunny is suitable for ages three and up. It is written in a beautifully poetic way. I ended up smiling at the rhyming several times. While Wosie is not the most independent blind bunny, and therefore some self-proclaimed competent blind adults might find this story offensive, you have to remember that Wosie is a little bunny. The story does explain the fct that blind bunnies can hear and feel fine. Overall, I liked the story and found ii very suitable for toddlers. It emphasizes the importance of friendship over differences.

Book Details

Title: Wosie the Blind Little Bunny
Author: Rose King
Publisher: Xlibris
Publication date: January 2013

Always Greener on the Other Side

Another jouranling prompt. This one was meant for kids, and it asks what we mean when we say “The grass is always greener on the other side of the fence”. This saying speaks to me and makes me feel quite uncomfortable, because I can definitely relate.

I remember that, when I go to a new place, like anew ward or institution or supported housing or whatever, I’m always optimistic that this will be suitable for me, but I’m very soon disappointed. For example, when I first got to this institution, I felt truly like I’d landed in a cozy place, or as close to it as an institution can get. Within days, however, I heard the staff reprimand the clients for not doing their chores and I was upset at the phrasing: “You guys are the most independent group, the more independent one on this unit.” A few days later, I was further disappointed when my staff insisted I do chores I cannot do. Pretty soon, I wished I’d stayed in the big city institution, and I still wish for that at times.

I have always felt like this. When I came into blindness rheabilitation in 2005, I saw it as a wonderful opportunity to learn sklls and aadjust to my blindness. By the middle of the four-month rehabilitation program, I felt I was lagging horribly behind and hadn’t learned most of the skills I’d wanted to. Same when I came into independence training, the psychiatric institution and every ward I’ve been at since except this one, where I was quickly realizing that it wouldn’t be helping me much.

I read in a paper a few months ago that this thing where “the honeymoon is over” and people start out okay but end up worse after a while, is common in people with borderline personality disorder. I remember in 2007, when I’d only been in the hospital for a few weeks, being told by another patient, who happens to have BPD too, that I need to work on myself, not on changing my environment every so often. I realize this at some level, but at another level, I think: “What do you think I was in training and treatment for all these years? To change the environment? No!” Yet maybe I still look to others to change me, not to myself.

Letter to My Twelve-Year-Old Self

When reading journaling prompts, some ask the journaler to go back into the past or spring forward to the future. There is in fact FutureMe, a site that has you write letters to yourself that will be E-mailed to you on a set date in the future. This is an interesting experiment, because it allows the future self to see what the past self was like without bias. Then again, writing to your past self is a good way to reflect on how your life has changed. This is a letter to my twelve-year-old self.

Dear twelve-year-old Astrid,

This is you speaking, fifteen years on. I am 27-years-old now and looking back on your life. I see your struggles. You are becoming aware of your social and emotional problems, yet needing to hide the their true extent because showing would mean you’re stupid. Let me assure you, you’re not stupid. You are autistic, and many people who have the cognitive abilities you do, are.

You’ve just received the report from Dr. M, the educational psychologist who evaluated you in what would become the final and successful attempt at getting you a recommendation for mainstream schooling. As you are aware, he recommended you use the remainder of the school year to sit in with a mainstream class to see if it’d work. Last month, you also went to the open house at the academic magnet secondary school/grammar school your sister’s friend’s big sister is attending. You are excited about going there. I appreciate that. I admire your optimism, giving each new start a new chance for success. At 27, I’m quite disillusioned. Grammar school was pretty bad, but I know you persevered. I wish I had that capacity now.

At the same time that you are preparing to go to mainstream grammar school, you fantsize about getting help for your social and emotional problems. I admire you for having devised your own tretment goals and thinking of ways to reach them. Sadly, you didn’t get help with this. I would’ve liked to tell you that I do, but let me say, psychiatric institutions are not great. Back in your day, there was a documentary about a young woman who was too intelligent for the system for people with intellectual disabilities but didn’t fit in with the mental health system either. You feared, or maybe you hoped, that you’d one day be her, because in the end she was accepted into a suitable treatment facility. I identify strongly with her, although I’m no longer locked up.

I know life isn’t easy for you being twelve. Unfortunately, I can’t tell you that it’ll get better. You hope to be a mathematician or linguist when you are my age. While I did study linguistics briefly, I had to dorp out due to mental health problems. I ended up in a psychiatric institution, and I’ve still not found the right treatment or care.

I know you struggle with losing your vision. I still do. I haven’t become completely, totally blind yet, but I can only see a little bit of light now. A few months ago, I went to have surgery to hopefully restore some sight, but it failed. The good news is, accepting blindness will become easier. I still struggle, but not nearly as much as you do.

Oh, and friendships will also get easier. I know you don’t have any friends. Guess what? I’m married now. While I don’t have any friends besides my husband either, I do have some connection to other people. You know, the Internet will come into your life, and this is great. Through the Internet, I’ve been able to connect with other people and find out tht I’m not alone on this journey. There are other children like you, and there are adults like me. This is sad, but it may help you feel less alone.

Keep on fighting, Astrid. I know life ahead will be hard for you, and even now I find it hard to appreciate the accoplishments you were so badly looking forward to, but as I said, I admire your perseverance. Without that, I would not have been where I am now.

With love,/P>

Your 27-year-old self

Love Survives Mental Illness

Over at Bipolar Mom Life, there’s a great post for Valentine’s day on love surviving mental illness. This is a very powerful story. Unlike in my case, the author had not become mentally ill yet when she got married. Then again, with mental illness being unpredictable, it isn’t like my husband knew what to exppect when we started dating or even when we got married in 2011. IN fact, I didn’t know what to expect. Until roughly a year ago, we were expecting to go live together within the foreseeable future. We still hope to one day live together, of course.

Love does not always survive mental illness. In fact, love does not always survive the test of time, with around 40 percent of marriages failing in general. Then again, according to an article in BP magazine, 90 percent of marriages in which one partner has bipolar disorder, end in divorce. I bet that with borderline personality disorder, this percentage is at least as high.

There are several obstacles to a successful marriage for someone with BPD. There are of course those characteristics that are inherent in the disorder – higher risk of infidelity, aggression, idealizing and devaluing, etc. There are also problems that are not necessarily inherent in the condition, but which are more likely to occur due to the dynamics of partners not only being partners, but also having the patient or carer role. I cannot go into detail about this, but I want to warn mentally ill people who are in a relationship that their partner is their partner first, may be their carer second, and is not their therapist.

Journaling on Accomplishments and Hopes

From the age of ten or eleven on, I used to keep a journal, first on paper and then on the computer. I quit in 2003 when my computer crashed and I’d lost the last four months of journaling. Besides, an Internet diary had taken over my mind. In 2006, when I moved into independence training where we didn’t have an Internet connection, I started again. I continued to write a journal through my first two to three years in the psychiatric hospital, and then the Internet took over again. My online diaries have often been pretty persoanl, but over the years, I learned to write more for a general audience.

Nonetheless, journaling never ceased to capture my interest. I read and enjoy a lot of personal blogs. A few months ago, I tried to start a weekly gratitude journal here on this blog, but I never got past the first entry.

Today, I bohgt Journaling Tools by JanMarie Kelly, which is basically a very introductory explanation of journaling plus an assortment of prompts, alnd I thought I’d createa “jouranling” category here on the blog.

The first and third prompts in Kelly’s book are about accomplishments you’ve completed and expectations you have for yourself. Kelly asks the journaler to write ten of each, but I am not sure I can get to that many, so I guess I’ll just reflect on a couple.

My biggest accomplishment so far has been graduating from high school. I went to a mainstream school where I was the only blind or visually impaired student. I am also gifted, as were about thirty percent of the students, and of course I have Asperger’s, which I suspected at the time but had not been diagnosed with yet. I remember when I was in the tenth grade, my teachers saying in a performance that only students who had something different about them – gifted, Asperger’s, blind, dyslexic, etc. -, could go to their school. “But our little Louis William George has nothing wrong with him, not even fear of failure, so he can’t come to this school?” Quite funny.

My second biggest accomplishment is choosing my own path of study, which was quite at odds with my parents’ ideas of an appropriate field of study for me. I chose psychology, and completed my foundation (first year) in 2007. I reaalize that psychology is not an ideal major for someone with a communication disorder like autism, and I guess so neither is linguistics, which I majored in the following year. The only thing I can say I accomplished during the two months at that university, is getting a B in intro to linguistics despite taking the exam in the week of the crisis that led to my hospitalization.

I honestly cannot think of any more accomplishments that I consider big enough to list here. Of course, I lived independently for three months and am married, but are these accomplishments or just things I did?

I also cannot think of ten expectations for myself. I used to be able to think of several dozens when I was still in school. I wanted to graduate from college, get a Ph.D., live in the United States, get a job as a researcher, and many other expectations that are out of reach for most non-disabled people. Now I cannot get beyond hopes. I will just write a list of hopes that I have for my future, and think I can get to ten with this.


  1. Complete some more further education.

  2. Get a volunteer job.

  3. Live in a workhome or other suitable supported housing.

  4. Learn to cook independently again.

  5. Work as a recovery worker either on a voluntary or paid basis.

  6. Get any paid job.

  7. Live with my husband./Li>
  8. Visit the United States.

  9. Take and complete some writing courses.

  10. Write a memoir.


Yeah, I made it to ten. 🙂 In fact, I could think of some more, but these are enough f o now.

Gender and Autism Stereotypes: Problems for Autistic Girls

Yesterday, I bought Parenting Girls on the Autism Spectrum by Eileen Riley-Hall. I’ve only read bits and pieces of it yet, but what struck a chord with me are the problems faced by both passive and aggressive autistic girls due to gender stereotypes and stereotypes about what autism should be.

First, most girls on the autism spectrum are passive. This can easily lead to them being ignored in a classroom or even at home. I notice this on my ward, too, because I’m fairly withdrawn. Because of this, my needs are not always met, as there are many patients who act out to get what they need. In the book, Riley-Hall talks about a girl in her daughter’s nursery who was so shy that she could easily be isolated if not for her attentive teacher. Passive autistic girls, according to Riley-Hall, need as much one-on-one attention as possible. This seems coutnerintuitive, because they aren’t causing any trouble or being a danger to themselves or others. Then again, they too need to learn to relate to others. It is sad in this respect that isolation is no longer a ground for care in the Netherlands. Apparently, you need to be aggressive to be seen. Please note that, in DSM-IV, passive autism is seen as more severe than the active-but-odd type.

Yet aggressive autistic girls are also often mistreated. According to Riley-Hall, gender stereotypes dictate that less aggression should be expected and tolerated from girls than from boys. Consequently, if an autistic girl acts out, she’s punished more harshly than a boy. Riley-Hall does not say this, but it is my expereince that aggression in women and girls is also interpreted differently than in males. For example, many more women are diagnosed with borderline personality disorder rather than for example ADHD. Fortunately, researchers and clinicians are becoming more and more aware of gender differences in the symptoms of psychiatric and neurodevelopmental disorders.

Executive Functioning Disorder (EFD)

Lately, I’ve mentioned executive functioning problems a lot. Though executive functioning disorder (EFD) is not formally recognized, it is pretty common in individuals with ADHD, learning disabilities and autism spectrum disorders, particularly Asperger’s Syndrome. So what is executive functioning disorder?

First, let me explain what executive functioning is. Executive functioning is a set of mental processes that enable people to connect past experience to present actions. These processes include planning, organization, motivation, maintaining attention, anticipation of alternative consequences, and generalization of what has been learned. People with EFD have impairments in many of these areas. Thogh executive functioning is often related to attention, not all people with EFD also have attention deficit disorder.

Here are a number of characteristics of executive functioning disorder:


  1. Difficulty ad/or apparent lack of interest in setting goals.

  2. Difficulty initiating a task or generating ideas independently.

  3. Difficulty comprehending how much time a task will take.

  4. Troulbe telling a story (in spoken or written language) because of difficulty organizing details.

  5. Inability to stop and think of a strategy to solve a problem.

  6. Continuing to use the same strategy to solve a problem, even when it’s ineffective.

  7. Difficulty following instructions that consist of multiple steps.

  8. Swinging from impulsivity to rigidity.

  9. Difficulty handling change.

  10. Inability to reflect on past experience to plan for the future.

  11. Past consequences don’t effect future behavior.

  12. Little awarness of or interest in learning about personal limitations or weaknesses.

  13. Mood swings and emotional instability. May react to emotions rather than verbalizing feelings.

  14. Seeing personal problems as externally caused; inability to see one’s own contribution to a problem.

  15. Difficulty taking another person’s perspective.

  16. Risk-taking or thrill-seeking.

There are a number of situations in which a person’s executive functioning disorder may interfere with their academic, social and daily living skills. In the area of time management, I have a lot of difficulty thinking of what to do during the day. This is not because I have few obligations – oh well, that is part of the problem too -, but even when I have a lot to do, I can’t seem to organize or plan for it. I procrastinate, too, as do most people even without EFD, but in my case, it’s sometimes due to inability to organize an activity. Initiating an activity may also be a particularly hard skill for people with EFD. This is sometiems called inertia.

In the area of problem-solving, I have a hard time following instructions that aren’t spelled out. I don’t have troubl memorizing multiple steps, but they do need to be clearly stated. For example, last week, I was planning on going for a walk. I had my shoes off and the nurse told me to put on my shoes. I did, but I didn’t put on my coat. I am not particularly literal-minded, so that wasn’t really the problem. Now that I think of it, I realize that maybe besides sensory processing difficulties, EFD might contribute to why I have a hard time deciding on which clothes are appropritate for the weather. In school, I had specific rules on what to wear during specific tempetrautres. I have been in situatiosn where it was over 30_C and I was still wearing a sweater because I hadn’t watched the weather forecast.

Emotion regulation problems may or may not be due to EFD in my case, since borderline personality disorder causes these problems too, and I exhibit some stereotypical BPD reactions. Then again, low frustration tolerance, which is not per se a BPD characteristic, is definitely related to executive functioning, and this has always been said to be a core problem of mine.