Monthly Archives: May 2014

The Twisted Twenties

Second Blooming

When the topic for this week’s spin cycle was announced, I was immediately interested. The topic is “aging”. Ginny Marie over at Lemon Drop Pie came up with the topic when she learned about the average age mothers gave birth to their first child. It is 29 here in the Netherlands, so Ginny Marie and her co-host Gretchen were significantly older than that. As I’ve written before, I’d always thought I’d have my first child at 27. This obviously didn’t come true. Now rest assured, I’m not going to write about childlessness again, if for no other reason, then only because my family is going to think I’m pregnant.

Instead, I want to write about the looming idea of aging when you’re relatively young. I’m going to be 28 next month. However, I feel much older at times.

I’ve always had this feeling. When I was nine, I worried about needing to leave the parental house when I’d turn eighteen. This feeling of doom continued to haunt me until I was in my early twenties. In 2008, it was at its worst. I was convinced that I wouldn’t make it to the end of the year. I had my reasons for this, but most were completely outrageous and irrational.

Being in your twenties is interesting. It may be that most people in the online world are in their twenties, as I see no communities specifically for those my age. I’m too old for the teen communities or even the college communities, but I am still so significantly under 30 that I can’t get myself into communities catering even loosely to the over-30.

I remember when I was around fourteen reading an artilce in a youth magazine about college students and their identity crises: they’re too old to be protected by their parents, but too young for buying a house, marriage or children. I am older than all young adults quoted in the article that I remember, but I still feel this way at times, even though I got married at the rather young age of 25.

Now that I’m approaching age 30 (or at least, am close to my late twenties), I can feel the ticking of time again. I don’t have the feeling that I’ll die young anymore, but I do realize that it’s about time I get a life. And there, sadness sets in, as I may never have the life I planned for myself when I was young.

Play the Game of Pim-Pam-Pet

The game of pim-pam-pet

I go to the activity room in the building across the street from my ward regularly. Usually, I do crafts there, but I sometimes play word puzzles and card games too. One such card game is pim-pam-pet. It’s a very family-friendly game, which I played as a child too. I could hardly find English-language information on it so don’t know whether the game is sold in the U.S. or UK, but the cards are easy to make. There also seems to be an iPhone app fo rthis game. Pim-pam-pet isn’t played with a regular deck of cards. Instead, there are a set number of cards with category words on it, such as “book”, “girl’s name”, etc. Then the game contains a letter wheel used to select the letter with which the answer to the word on the card needs to start. If, for example, the card says “girl’s name” and the letter showing on the wheel is A, the players need to come up with a girl’s name starting with A. The first person to name a girl’s name starting with A (Astrid!) wins that card. At the end of the game, the player possessing the most cards has won the game.

There are premade sets of cards which you can buy at a toys store. However, you can also make your own cards using pieces of white cardstock. On those, you can put funny questions such as “What do you like eating for dinner?”, “who do you love most?”, etc. Of course, the letter showing on the wheel limits your choice. I myself find I sometimes get stuck when I can’t think of something I genuinely like with the letter showing, but other people I play with name random things. For example, it’s quite funny to hear someone who can’t stand broccoli answering that to the question of what they like to eat for dinner when the letter B comes up. Similarly, when the question is to name a book and the letter showing is I, my activity staff has come up with: “In the summertime. I bet there’s a book titled that.”

When you are playing seriously, this game is a good way of teaching object categories to children. It may be that you’ll need to turn the wheel multiple times. After all, what if the letter Z comes up and the question is a color? When you’re playing for fun, the answers to questions like “who do you like to play with?” can be good conversation starters. When people give random responses, it’s just a way to have a good laugh. In any case, pim-pam-pet is a really fun and sometimes educational game for anyone old enough to know their letters.

Medicating Away for Autism: Dilemmas and Disillusions

A few weeks ago, I saw an old post on autism and medicating and what’s the dilemma being tweeted again. It got me thinking about my own journey on the path of the medication controversy.

I first learned about autism and medication from the likes of APANA (Autistic People Against Neuroleptic Abuse) and It was communicated clearly on these sites that autistics should only take medications if the right supports are in place, they’re themselves suffering (as opposed to the parents suffering from the autistic’s behavior) and if the medication is not an antipsychotic. I took this information at face value. When I was myself diagnosed with autism, I became an enthusiastic autistic advocate. I was soon disillusioned.

When the option of medication was first mentioned to me, I was miserable. I had the right supports, although I was soon going to lose them due to moving into independent living. An antipsychotic wasn’t the first medication mentioned. But it was what I ultimatley ended up on. I wrote a blog post the next day about really well-informed consent. I wasn’t really aware of the fact that I had truly been mildly coerced into consenting and that 95% of the “really well-informed” bit came from my own Internet searching rather than the psychiatrist.

I quit my antipsychotic eventually when I realized it was being used as a substitute for proper care. I used the side effects as an excuse, but really I was still miserable, only just not miserable enough for increasing my supports. I was really fortunate that the psychiatrist who ended up admitting me to the hospital three weeks later, didn’t consider prescribing me the same antipsychotic, or any antipsychotic, again.

For years, I was without daily medication. I noticed how the use of PRN oxazepam was coerced, and I wasn’t going to go along with it – unless I was truly miserable. Or unless seclusion was touted as the only alternative.

In late 2009 and early 2010, I had the worst irritability I’d had in years. I knew that I might benefit from more support, but I also knew this wasn’t feasible, and my support was okay at least. So when my psychologist proposed I talk to the psychiatrist about medication, I consented. The psychiatrist gave me plenty of inforation, including many of his reasons for and against particular drugs (mood stabilizer vs. antipsychotic and if an antipsychotic, which one). He also gave me a week to think, and I consider the consent I gave this time for taking the antopsychotic Abilify to be really well-infomred.

My dose, however, had to be increased several times. I remember once telling the substitute psychiatrist, a much less considerate doctor than my regular psychiatrist, that I felt I needed more support, but I was bluntly told off and prescribed a higher dose of Abilify. Of course, legally I could’ve refused, but the irony of informal hospitalization is that you’re mde to believe you have a choice, only you don’t. I had, after all, been threatened with forced discharge if I didn’t consent to seclusion a few years prior, and this time, I didn’t even have a home to go back to, so what choice did I have?

For three years, I did fine on a moderate dose of Abilify. I did get a low dose of the antidepressant Celexa added, which forutnately never had to be increased. Then, in the summer of 2013, I moved to my current institution and soon found I had more meltdowns. I was threatened with the locked ward, in the kind of way where nurses don’t really mean it but just want to scare the crap out of you, so what choice did I have but get my Abilify increased again. And again?

I’m now at almost the highest dose of Abilify that can be prescribed, a five-fold increase from my original dose. I’m feeling really drugged up lately and in a kind of agitated state where I’m too drowsy to get out of bed yet feel irritable nonetheless. I’ve raised this issue with the staff and my psychologist several times, but nothing has come out of it.

Currently, I’m taking an antipsychotic to manage behavior that other people suffer more from than myself while I don’t have proper support. After all, proper support isn’t needed when you aren’t a pain in the neck of the staff, and when you are a pain in the neck, it’s all “attention-seeking” and “overreactivity” and they’ll treat you like crap until you’re begging for a PRN pill. Is this what Autism Daddy means? I’m assuming he wants the right support for his son, but he doesn’t care that other people are drugged up for a dentist’s appointment. Now I know that his son is more severely aggressive than I was when I gave my really well-informed consent to the original dose of Abilify, but I’m still worried.,/P>

As I wrote in my previous post, my psychologist considers medication to be a substitute for proper support. I disagree, but I’m afraid that I just got to go along with it, and the fact that I’m an informally admitted patient only makes this a little harder.

Was My Hospitalization Inevitable?

I was reminded yesterday about the situation surrounding my psychiatric hospitalization in 2007. I had been put on antipsychotic medication three months prior and had quit taking it again three weeks before I ended in crisis and was hospitalized. Yesterday, when talking to my therapist about this situation, she suggested more or less that being hospitalized could’ve been avoided if I just continued taking my meds.

Really, I consider my crisis inevitable. When I was still taking my medication, I was very irritable; just not irritable enough for the crisis team to intervene and hospitalize me. “But other people don’t like to be hospitalized,” my therapist said, as if by quitting my medication I’d somehow manipulated the crisis team into an unnecessary admission. The thing is, I’d been on the edge of a crisis ever since I moved into independent living. Maybe quitting my medication was the final straw, but is it all that strange that you want help when you’re struggling with meltdown after meltdown after meltdown?

I saw this reasoning all along when I still lived independently. I remember my care coordinator once saying that it was better for me to bang my head against the walls of my apartment, than to go outside and scream. Well, what the bleep? Isn’t a person’s safety more important than the person being a pain in the butt? Besides, it isn’t like I made a conscious choice either way.

For clarity’s sake: hospitalizations aren’t fun. The psychiatrist who admitted me, didn’t do so to please me. In fact, I didn’t ask to be hospitalized, as I didn’t know what I needed really. Hospitalizations happen as a last resort. Long-term institutionalizations are certainly not a choice either. And just so you know, the fact that I’m an informal patient doesn’t change that.

Why did I have a full-blown meltdown yesterday after my therapist asked me to name the pros and cons of asking for help less? Why did I feel offended when she suggested that, with medication, I could’ve been kept at home? Why do I struggle with all this “least restrictive environment” bullcrap that I hear everywhere? I’d like to consider my hospitalization avoidable, and maybe it was if I’d just continued taking those pills. But as I said, I was completely on the edge for all those three months. Apparently, however, intervention is only inevitable if you’re literally (nearly) dead, and if you aren’t, quality of life doesn’t matter. Especially not if you’re also a pain in the neck.


Me Want It (But Me Wait): Teaching Self-Control to Children

In the summer of 2013, Sesame Street released a fabulous video in which Cookie Monster is learning about self-control. Self-control is an important skill for children to master, as it will help them succeed at school and manage their behavior at home. Naturlly, young children have no self-control. Children with ADHD or similar issues may lack self-control up till a much older age./P>

There are many ways in which a parent can teach a child self-control. With babies, you need to begin by modeling. Remain calm yourself when your child is distressed. There may be various ways in which a baby is calmed. Some need lots of physical contact, while others need to be laid down for a bit. People vary in their opinion on self-soothing, ie. whether you need to attend to a baby when crying or ignore them. I think it depends on the baby.

Listening skills are a first requirement. Teach your child to come when you call them. Rigidly enforcing social skills like eye contact may not be appropriate for some children, like those with autism, but your child needs to learn to listen to their name and to attend to you.

When a young child cannot get what they want, cannot do what they want to do, or for another reason gets frustrated, they may tantrum. For a one-year-old, consequences don’t work, but distraction does. When your child is a little older, like from the age of two on, use brief time-outs as a consequence for tantrums. Like I’ve said before, make sure your child knows when the time-out is over. This means for a young child that you will need to call them back out of time-out. Again, this reinforces listening skills. For older children, you can ask that they come back when they’ve calmed, but this may not work for children who are still unable to understand their own emotions, like most children with autism. You can point out signs of them being calm again when you call them back out of time-out. This may help children learn about their own emotions and behaviors.

Besides giving consequences for impulsive behavior or tantrums, it’s also very important to reward self-control. If you’ve promised your child ice cream after dinner and they’ve behaved according to your reasonable expectations, give them the ice cream. That way a child learns that not only will impulsivity be punished, but also that patience and self-control are indeed going to get you farther along in life.

Motivation is not the same as self-control. If a child can focus fine on a computer game but not when tidying their room, that’s not a problem with self-control. It is more likely that they lack the motivation to tidy their room. It is however possible to change your attitude. Children will need help with this. For example, as a parent, you may turn tidying the child’s room into a game. You also need to model the right attitude. If you approach tasks like they’re nasty chores, much energy will go into motivating yourself to do the task. If you approach them with a positive attitude, you will find it’s much easier to stay motivated and thereby use your self-control skills. With children (and as adults!) who have a special interest, you can use the special interest as part of the nasty chore.

Of course, there are other skills required for completing tasks besides motivation. Your child will need to have the attention span to focus, the working memory to remember what they need to do, and the organizational skills to plan their task and get it actually finished. Until I did my research for this post, I thought this was the problem with me, but then I realized I can focus fine on this blog post, which requires reading and summarizing multiple sources. I’m now thinking that motivation may be an issue for me, and see above for solving that.

However, when someone truly has poor atttenion, working memory and/or organizational skills, these skills still can be trained at least in children. Computer-based games that reinforce memory or attention have some evidence of effecitveness behind them. Similarly, there are games that reinforce self-control directly. You know the game of stop and go, where a green light means go and a red light means stop? When the child is used to these rules, reverse them and your child will practice keeping their impulse to follow the original rules in check. I’m pretty sure there are computer-based variations to this game.

Handling Tantrums and Meltdowns in Children with Autistic Spectrum Disorders

Many children with autsitic spectrumd isorders, including pathological demand avoidance syndrome, have meltdowns. They can have different causes. A child may act out because they’re impulsive and find it hard to delay gratification. This is different from being spoiled, although the difference may be subtle. I still act out when I ask for help and am not told when I can get it. If someone is clear when they can offer me what I need (I don’t act out for not getting something I merely want, for clarity’s sake), I usually don’t have a meltdown.

On the other hand, as a child, even up to early adolescence, I used to have tantrums when my sister got candy or a gift and I didn’t. This is not normal for a neurotypical adolescent, but that doesn’t make it not a tantrum. An autistic child beyond the typical age for temper tantrums may not be able to take the other person’s perspective, so they may feel they’re being mistreated. This can be explained in a social story, but if a child still tantrums when they’re simply not getting their way, treating it as a regular temper tantrum is best.

Some children or adults act out because they’re frustrated and don’t knwo how to solve a problem. This is something inbetween a temper tantrum and a meltdown. I often used to be frustrated if my computer was having problems, but I would not use strategieis that would solve the problem, either socially acceptable (asking for help) or not (screaming for help). In one case when I was sixteen, I totaled my computer trying to make it work again, losing five months worth of important documents.

According to Adelle Jameson Tilton and Charlotte E. Thompson, authors of The Everything Parent’s Guide to Children with Autism, 2nd edition, a child can also have a meltdown because they’re denied something they want, but they lose total behavioral control and don’t “switch off” suddenly again if the wish is granted. Children in a meltdown do not take precautions to prevent themselves from being injured. They will not care if someone is watching or reacting, and the meltdown winds off gradually. I had meltdowns often when I was at the independence training home, throwing objects in my own apartment while no-one was there. I did need help cleaning up the mess, but usually I had calmed down and wasn’t asking for what I had originally wanted once the staff helped me clean up.

From my experience, I can tell that a meltdown can also occur when I am overloaded either cognitively, emotinally or sensorially. I remember a few weeks ago completely melting down even though I had gotten the attention I’d wanted already, because I couldn’t cope with overwhelming emotions and had failed at channeling my overload. When later asked why I had had this meltdown, I had no clue. This is in my experience a distinctive characteristic of a meltdown: meltdowns do not necessarily have an underlying reason.

Meltdowns can also happen after a small seizure, according to Jameson Tilton and Thompson. I read in my neuropsychology textbook that aggression during a seizure is very rare and usually stereotyped, but aggression after a seizure may be more common. If a child seems to be totally uninvolved in their environment for a few minutes before mtling down, this could be a sign of a silent seizure.

In children with pathological demand avoidance particularly, a meltdown may come on as a result of anxiety. Phil Christie and others in their book Understandign Pathological Demand Avoidance Syndrome in Children, make a rigid distinction between aggression with the purpose of avoiding demands and meltdowns out of anxiety, but in my experience this distinction isn’t always clear. After all, demand avoidance often stems from anxiety and/or overload. In situations where an autistic or PDA child is overloaded or panicking, it is important that adults reduce the demands placed on the child, use simple language and do not enforce social niceties such as eye contact.

It may help to evaluate your own behavior as the adult managing a child’s meltdown. You can ask yourself whether the demands you placed on the autistic or PDA child were reasonable, whether they were truly non-negotiable (so that you were willing to endure a meltdown for them), whether you reacted properly or may’ve overreacted, etc. Remember, a meltdown, unlike a temper tantrum, is not a power play, and as a parent, carer or teacher you shouldn’t make it about power.

If the person who had the meltdown is an older child or adult, and you have a trusting relationship with them, involve them too in the evaluation process. (Note: if you do not have a trusting relationship with them, this is something you’ll need to work on!) Evaluating should be done in a non-judgmental way, avoiding the blame game. For some children, social stories may be appropriate, while others can tell you what you need to do differently to help them prevent or minimize a meltdown. This is again not to say that you’re to blame for the meltdown, but many children and adults in a meltdown do need external support.

Mood Disorders in Children

Mood disorders in children, especially bipolar disorder and explosive mood disorders (also known as severe mood dysregulation and called disruptive mood dysregulation disorder in DSM-5), are controversial. Many children after all have temper tantrums, hyperactivity, sleep problems, etc., yet do not need a diagnosis. I found a list of fifteen symptoms of childhood bipolar disorder, of which I easily met the required four as a child. However, I never had the classic symptoms of bipolar disorder and do not have bipolar disorder now that I’m an adult. I did have mood disturbances as a child, but these could also be due to my autism and emotion regulation disorder.

Dsiruptive mood dysregulation disorder (DMDD) has much stricter criteria than those proposed in the above article for childhood bipolar disorder. In order to be diagnosed with DMDD, a child needs to meet many criteria, including temper outbursts on average at least three times a week over a twelve-month period, persistent irritability most of the day, nearly every day, symptoms occurring in at least two contexts and being severe in at least one (home, school, or with peers), etc. The diagnosis cannot be made in a child under six and should not be made for the first time in adulthood.

The diagnosis of disruptive mood dysregulation disorder cannot co-occur with oppositional defiant disorder (ODD), intermittent explosive disorder or bipolar disorder. If a child meets both criteria for DMDD and ODD, only the mood disorder needs to be diagnosed. If a child has ever had a manic or hypomanic episode, only the diagnosis of bipolar disorder must be made. For childhood bipolar disorder, the same criteria for a manic or hypomanic episode apply as for adults, except that the duration may be shorter. According to the accompanying text in DSM-5, rates of conversioon from DMDD to adult bipolar disorder are low. Adults with a history of DMDD are more likley to suffer frm depression or anxiety.

Mood disorders, including DMDD, can however co-occur with other disorders, such as ADHD or autism. ADHD and autism can also mimic a mood disorder. For example, if a child with autism or ADHD won’t stop talking, this shouldn’t be confused with the talkativeness seen in a (hypo)manic episode. However, mood symptoms can also be missed if a child has ADHD or autism, because irritability, temper outbursts, etc. are seen as a normal part of the ADHD or autism.

If a child’s mood disturbances are interfering with their daily functioning, take them to their doctor or psychologist for assessment. It isn’t always necessary to give them additional labels or prescribe them medication. Sometimes, just a change in handling strategy may help. You could’ve noticed this already, but, with a problem child, it’s often helpful to have a professional be your second pair of eyes.

Vitamin B12 Deficiency: The Invisible But Treatable and Worryingly Common Disease

In the summer of 2012, I suffered from severe, persistent fatigue and episodes of lightheadedness. I went to my doctor, thinking I had iron deficiency anemia once again. My hemoglobin was always normal, but the ironn itself, which is necessary in the production of hemoglobin, had often been low. This time around, however, the cause of my fatigue was vitamin B12 deficiency.

Vitamin B12 deficiency is relatively common but used to be underestimated. It affects between three and six percent of the population, becoming more common as people age (Allen, 2009).

Vitamin B12 deficiency is usually diagnosed through a blood test. A deficiency is defined as a serum level of B12 below 148 pMol/L or 200 pg/mL (Allen, 2009). My level at the time was 120 pMol/L, which my doctor said was “not very low”. This may be so – I have met people on the B12 deficiency foundation forum with levels of 25 or less -, but it’s still cause for concern. Besides, my methylmalonic acid (MMA) was also elevated, which Allen says is the “gold standard” for diagnosing B12 deficiency.

Symptoms of B12 deficiency can be diverse. I only had tiredness and lightheadedness, but you may also experience rapid heartbeat or breathing, pale skin, sore tongue, weakness, an upset stomach, diarrhea or constipation. If B12 deficiency is not treated, it could lead to nerve damage. In fact, Chris Kresser, a natural health specialist, thinks that some symptoms common in the elderly, such as cognitive decline and lessened mobility, may in fact be due to untreated B12 defieciency. Kresser also cites a much higher prevalence than Allen, but this seems to be due to bias.

It is the Dutch B12 deficiency foundation’s position that, unless you’re eating strictly vegan, the cause of B12 deficiency is most likely malabsorption and you need to insist on injections. Malabsorption can, according to WebMD, be due to various causes, such as atrophic gastritis (where the lining of your stomach becomes very thin), pernicious anemia, Crohn’s or Celiac Disease, etc. However, eating a vegetarian diet with few eggs or dairy, as I did, can also cause low B12 levels. I went with injections anyway because I hated the taste of the tablets.

It is also the B12 deficiency foundation’s position that measuring serum levels after you’ve been using injections, won’t be useful. In my case, I was given blood tests after the round of injections anyway, and these showed my B12 level was elevated in fact. It dropped to normal within a few months and stayed within the normal range until at least my last blood test in December of 2013. I eat meat again, so it could be that my low consumption of animal products, even though I wasn’t strictly vegan, was causing me to have a B12 deficiency.


Allen LH (2009), How Common Is Vitamin B12 Deficiency? American Journal of Clinical Nutrition, 89(2):693S-696S. DOI: 10.3945/‚Äčajcn.2008.26947A.

Mental Illness Is Real Illness Too #BADD2014

When I signed up to participate in Blogging Against Disablism Day 2014, I originally intended to write a semi-academic post on what it means ot be disabled and who can identify as such. Then I read Kees Kooman’s Dutch book on chronic fatigue syndrome (ME/CFS), which is aimed at advocating the idea that ME/CFS is a physical rather than psychological illness. Fine with me – there is a lot of evidence that ME/CFS is a physical illness. What bothers me, however, is the idea, propagated throughout the book and in many other places within the chronic illness community, that a physical illness is somehow more real than a mental illness.

I have a mental illness. I also have largely unexplained physical symptoms, which the doctors for now call probable irritable bowel syndrome. IBS, like ME/CFS, is an illness with clear physical symptoms which however have not yet been explained. This doesn’t mean no explanation will be found – many cases of “hysteria” in Freud’s era were later found to be brain tumors, after all.

However, what if IBS and ME/CFS are actually psychological? Does this mean that we don’t want to get better, as Kooman continually suggests. In my experience, living with a diagnosed mental illness, it doesn’t.

I see this kind of ableism towards the mentally ill everywhere. I have met many autistics who resist the idea of autism as a psychiatric diagnosis. While again I am on their side, their arguments discriminate against the mentally ill. It isn’t like mentally ill people always need to be pushed into independence, while autistics and others with neurodevelopmental conditions need lifelong support.

In case you’re wondering why I care, here’s why. The Dutch Long-Term Care Act, which is due to take effect next year, originally excluded those with psychiatric conditions (which I’m assuming includes autism without intellectual disability) from care. People with mental illness needed to get care and treatment through health insurance and locally-funded social support. The mental health platform, supported housing alliance and some other stakeholders fought this exclusion and it seems now that those who’ve been in residential treatment for at least three years on end, will qualify for long-term supported housing. I would qualify under this condition, but the large number of revolving-door patients, who are constantly being admitted, discharged and readmitted, wouldn’t.

The mental illness means not wanting to get better idea also has practical implications for treatment. People with certain mental illnessses, like personality disorders, are already stigmatized for being just a pain in the butt. I have been told many times that I’m manipulative, attention-seeking, and just having behaivor problems that I need to overcome. Of course it is wrong to assume the same of ME/CFS and IBS patients, but why in the world do they need a physical cause for their illness to claim they’re truly suffering?

Let me make it very clear that I’m not saying that ME/CFS is all in your head. I’m saying that if it were, that still didn’t mean you don’t want to get better. Symptoms are real, whether they’re psychological or physical and, if physical, whether a medical cause can be found or not. As a person who has been accused of imagining a mental illness, I want to say that, unless someone is malingering (ie. faking for external gain), it doesn’t matter what the cause of the illness or disability is in terms of whether it is a real illness or disability. Whether you strive for the illness or disability to be cured, by the way, doesn’t determine whether you’re ill or disabled eihter, but that is beyond the scope of this post.