Monthly Archives: January 2014

When I Shouldn’t Reach for My Meds (But I Do)

Today, I had a discussion with my psychiatrist. I’ve been feeling okay overall, but, when my therapist and social worker got talking to me about going into supported housing, it caused me to be irritable for days. I notice this a lot lately: when I’m able to stay in the present and just do my thing, I’ll still have some mood swings, but they aren’t nearly as severe as when I need to focus on the future. My therapist and I are clearly not on the same page in terms of my goals, and this causes me intense frustration. I’ve reached for my PRN medication almost everyday last week, even though it isn’t effective. At least the though that something would be numbing me and I had some control over my emotions was there.

My psychiatrist pretty much said that situational frustration is not a reason to reach for meds, and he’s right. That’s one of the main reasons I stopped my Risperdal, which had been used to make me just numb enough not to have a crisis while living independently, but not so numb that I didn’t feel the intense pain anymore. In a way, I want nothing to do with my increased dose of Abilify either. It wasn’t increased now, but it’s been increased twice since I came here seven months ago, while I’d been stable at a moderate dose for three years before I cam here. Medication isn’t a cure for shitty circumstances.

Yet I reach for medication everytime I feel frustrated. It’s probably what I’ve been learning to do. I can’t get more support if my therapist doesn’t want me to get it, and it’s still a fact that in psychiatric institutions, patients have little say in their treatment, unless their treatment goals are in line with the latest treatment philosophy. Back when patients had to be locked up for the rest of their lives, people wanting to move into the community, were medicated, secluded and otherwise forced into submission. Now that psychiatric services have to face budget cuts and their philosophy has changed to rehabilition, patients like me, who cannot cope with this pressure, are, albeit more subtly, still forced into submission. Still, the only way to numb the agitation that I feel at people trying to control my life, is to reach for my meds. It isn’t going to get me out of this vicious cycle, but then again, what is?

Book Review: Peter’s Asparagus by Angela Nicole Krause

When looking at Kobo for children’s books that I might like to read and review, I stumbled across Peter’s Asparagus by Angela Nicole Krause. This little book is the first in a series of short stories which are easy to read, sensitive and entertaining. Peter’s Asparagus is about a young boy with Asperger’s Syndrome. Peter has a hard time making friends and he doesn’t like changes. He is however really good at math, spelling and science. The story explains Asperger’s quite well for a children’s book. I got to really feel for Peter as he was getting upset because the other children in his class laughed at him, thinking he’d said that he had asparagus. In the end, Peter can even laugh at the misunderstanding himself.

This story is really good for class or family discussion on children’s differences and disabilities. As I said, it makes the reader quite aware of what Asperger’s Syndrome is. The story also teaches about the value of friendship and about the fact that children are good and not so good at different things and that it can be good to help each other. Besdies being a good book for teaching every child about accepting differences, this book is great for children with autism or Asperger’s to feel that they are not alone.

Book Details

Title: Peter’s Asparagus
Author: Angela Nicole Krause
Publisher: York Publishing Services, Ltd.
Publication date: January 2014

Book Review: The Girl Next Door by Selene Castrovilla

Since I discovered that Adobe Digital Editions 2.0 is accessible with screen readers, I’ve downloaded a number of ebooks. Most were scientific books, with a few being memoris, and to be honest I until now hadn’t ifnished any. I usually bought my ebooks at Bol.com, the largest online media store in the Netherlands. However, when they switched to an inaccessible bookshelf format for downloading ebooks, I decided to try out Kobo. I also wanted to spread my wings in the reading departmnet, so I decided to check out some juvenile fiction, because I always used to like that better than adult fiction. In fiction, my taste is similar to that in memoirs: the book has to cover medicl, social or psychological issues. The Girl Next Door by Selene Castrovilla seemed to meet that requirement. Besides, it cost only E3,-, so I wouldn’t have wasted a lot of money if it turned out to be crap. In the end, I’m not disappointed at all.

Synopsis

Two teens are forced to make some very grown-up decisions when one of them is diagnosed with terminal cancer, twisting them into an unpredictable nightmare. Best friends since toddlerhood, Samantha and Jesse grapple with the realization that they are actually in love. What now? Beautifully written while handling a very heavy topic, Castrovilla addresses the universal question: In a world where the worst can strike at any time, how can we ever feel safe?

Review

Reading the first page, I was not thrilled. Was middle grade fiction that simple, or was my English that advanced, it being my second language? Within pages, I had to change my mind on this, because it turned out I didn’t understand some of the more commonly used words – maybe my English isn’t that advanced after all. Even so, the book is quite readable.

The book isn’t too fast-paced, but it doesn’t ge tlong-winded either. I was able to guess pretty soon that Jesse wasn’t going to get a miracle cure fo rhis cancer, but other than that, the book was not predictable at all. I wondered at several points from halfway through the book on whether the end was coming up. I don’t mean this to say the book is boring, but there were several moments at which point Jesse could’ve died and the book would be over.

What I also liked about the book, was that I developed both sympathy for and disgust with almost all characters. For example, Gwen, Jesse’s mother, starts out as a bitch, and I genuinely thought that I’d hate her throughout the book. Gradually, however, I was led to understand her better and in the end, I liked her somewhat. The book is written from Samantha’s point of view, but I believe most characters in fact ar epretty formed.

The topic covered in this book is of course quite sad, but the book didn’t just make me feel sad. I alternated between feeling angry, sad, happy, surprised and a lot of other feelings. In the end, I was left with peace. That is exactly what this book aims to teach.

Book Details

Title: The Girl Next Door
Author: Selene Castrovilla
Publisher: ASD Publishing, Ltd.
Publication date: May 2013

Family Involvement in Children’s Mental Health Services

Janet over at ocdtalk had an interesting post up on family involvement in children’s OCD treatment. She says that, while therapists know all about OCD and how to treat it, parents are the experts on their children and see them when they’re well, too. Therefore, parents need to be actively involved in treatment of their mentally ill children. Excluding parents form treatment is unethical.

Then again, parents can go too far too, when they are directing their child’s diagnosis and treatment. I mentioned a few days ago my parents taking me from one educational psychologist to another until they had the recommendation they wanted. It is a parent’s job to tell about their observations of their child, not to make a diagnosis.

For this reason, I have a hard time still involving my family in my treatment. My parents came to the acute ward twice. Once to talk to the doctor at the doctor’s invitation, and another time to allegedly take me home with them because they didn’t agree with my placement. They were speculating all about my motivations for being suicidal back then. I understand parents sometimes make observations that the (grown) child does nto agree with or like. For example, my parents were right to say that I’d made numerous suicidal threats starting in childhood. I didn’t like the connotation of manipulation or attention-seeking, but it’s a common assumption even with mental health professionals dealing with those who make repeated suicidal gestures. Janet assumes that parents usually have the child’s best interes tin mind. This was probably true in my case too, even if in retrospect I do not agree with their decisions. As I said, it’s not a parent’s job to tell the clincian whatever their (adult) child wants them to.

What is problematic is when a diagnostician or therapist and the parents don’t get along or are clearly not on the same page. It’s easy for the parents to hop to a new clinician, but please do realize that clinicians sometimes see things parents don’t. My parents didn’t particularly see or want to see my autism, yet it’s been diagnosed by three different clinicians. Parents do sometimes interpret behavior differently than a clinician would, for example because they’re used to the child’s behavior and don’t see it as much as a problem anymore. This is again a reason both parents and clinicians need to know their job in the assessmetn and treatment of struggling children.

Inclusion vs. Insertion or Integration

On a post on disability acceptance, someone commented that insertion is not the same as inclusion. This means that putting disabled people in mainstream classrooms, in the community, etc., does not automatically lead to them being accepted into that comunity. In this sense, there are parallels to the racial and gender equality movement, but there are also differences. The parallel involves the fact that, just because for example African-Americans were finally legally allowed to sit in the front of the bus in the 1960s, doesn’t mean they weren’t bullied into the back anymore. The difference, which to soe extent applied to certain groups of ethnic minorities too, is the need for accommodations to be made to fully include disabled people.

There is another word that is frequently used in disability situations and which is commonly used for ethnic minorites: integration. Integration involves not just insertion, but the expectation on the part of the majority that the ethnic minority or disabled person adapt to the majority. In a sense, this is somewhat opposite to inclusion, where the majority makes reasonable accommodations for the minority. It is also contrary to acceptance, because, while the majority tolerate the minority once integrated, they won’t accept them the if they don’t meet up to the cultural norms of the majority.

I have often struggled with the social model of disability, because it to some extent ignores the fact that disable dpeople aren’t just as capable as everybody else – an argument used by the women’s and African-American civil rights movements to claim equal rights. With equal rights, after all, come equal responsibilities. To draw a parallel to ethnic minorities again, immigrants to the Netherlands are themselves responsible for making sure they learn Dutch civics and language. I do not personally agree with this, but it is reasonable from a conservative, small government perspective, which is currently holding the majority here. Is it unreasonable then to insist that a person with a disability put every effort into becoming as non-disabled as possible? My heart says it’s unreasonable, but my head is having a hard tiem finding arguments for it.

The Perils of Living with Multiple Disabilities

Back in the 2000s, when I still read the National Federation of the Blind (NFB) publications regularly, I often came across the term “primary disability”. Blindness had to be one’s primary disability to qualify for rehabilitation at an NFB center. I see the same in the care system here in the Netherlands. My primary groudn for care is mental health. The way the system works, you get allocated a care package within the category of your primary groudn for care. Some of these care packages are designed for people with multiple disabilities, but it is clear that the creators of care packaging never explored the concept of multiple disabilities in depth. For example, if you have a care package within the blindness/vision impairment category, and you have either a mental illness or a mobility disability, you qualify for a specific care package. So what if you have both of these disabilities? Too bad. Also, the assumption with people who are blind and hav eadditional mental illness, is often that they can really do most thigns independently, but need lots of care (aroudn 35 hours a week) because of their behavioral or mental health problems. Please note: if your pimrary ground for care is mental illness and you’re blind, too bad, but you can’t get this amount of care.

Indeed, when I talk to my social worker, I’m often asked what I consider my primary care need. I have so far often said that autism is my primary disability, but today as I was meeting with my therapist and social worker, I fell into some of its pitfalls: I cannot go to a workhome for autistic people, which I think would be the least unsuitable placement for me, because my autism is not severe enough. May be so, but I have mental illness,b lindness and some other, minor difficulties too.

In another area, I’m noticing the primary disability nonsense. I have maximum privileges written into my treatment plan, which means that, if I tell the staff, I can go wherever I want. Nonetheless, the nurses won’t let me leave the ward unsupervised. This is quite confusing, because I can’t get the support that people who can’t leave the ward on their own get, because that means I’d need to be moved to a locked ward, but I do not have the ability to leave the ward on my own. Consequence: I’m stuck on the ward most days.

Severel years ago, I wrote a post on my old blog htat was entitled somethign like “th ewhole is more than the sum of its parts”. That is still exactly how I feel about multiple disabilities. You cannot just say that a person’s primary disability si whatever is most visible, then add some extra points for their additional disabilities. A person’s disabilities mutually influence each other, sometimes causing a person to be more limited than their individual disabilities suggest. This needs to be acknowledged, but sadly, people like to simplify disability and care concepts too much.

Myths about Health Anxiety

In a chronic illness Facebook group I’m part of, a member talked about having “possible hypchondriac” written in her medical records. This led to a discussion of chornic illnes, hypochondriasis and illness anxiety, as hypochondriasis is now called in DSM-5, medical knowledge, imagining or faking symptoms. There are a lot of prevailing myths about health anxiety, which I feel compelled to write about.

First, this person had a known chornic illness. The DSM-5 criteria for illness anxiety disorder clearly state that, if a general medical condition is present or there is a high risk of developing such a condition (eg. strong family history), illness anxiety disorder should only be diagnosed if the person’s anxiety is clearly out of proportion to the medical condition. Also, the criteria say that people with illness anxieyt usually suffer no or only mild somatic symptoms. I am not sure how to interpret this, as everyone suffers somatic symptoms at times, and the DSM-IV specified that hypochondriacs misinterpreted real bodily signals. That’s not the same as somatic symptoms, I believe. Anyway, for these reasons, it is pretty unlikely that a person who has a known chornic illness, can be diagnosed with illness anxiety disorder.

Another prevailing myth is that knowing a lot about medical terminology indicates you’re ahypochondriac. Well, in such a case all doctors ought to be hypochondriacs. Also, talking, writing or reaidng a lot about illness is not a symptom of illness anxiety disorder, unless it’s accompanied by anxiety about having the acctual illness. I am not a hypochondriac for reading blogs about medical disorders that I don’t have. Yay!

Making up symptoms or creating them is also not hypochondriasis. People who fake illness to take on the sick role have a factitious disorder (aka Münchausen Syndrome). People who fake illness for secondary gains (eg. disability benefits), are malingering. These two need to be differentiated: factitious disorder, even in its harmful forms (ie. Münchausen by proxy), is a real mental illness and should be treated as such. Malingering is not. Doctors still have a hard time diagnosing certain cases of malingering due to having sympathy for the faker.

Lastly, please remember that having or being perceived as having a bad attitude about your health or illness, is not hypochondriasis. People deal with chronic or serious illness differently, and most of this falls within the normal range. Where it becomes distressing to the patient, it may be illness anxiety disorder (or depression or another mental illness). Being a pain in the butt for other people, may be too bad, but it’s not a psychiatric disorder.

Educational Psychology: Recommendations for Parents

This post, in which a mother talks about the educaitonal psychologist observations of her child, reminded me of my own experiences with ed psychs and schooling recommendations, and the advice I want to give parents based on them.

First, in the United States I know that children with an individualized education plan (IEP) need to be assessed once every three years to deterine if their educational diagnosis still fits. This seems reasonable to me. If you disagree with an educational psychologist hired by the school, you can ask for a second opinion. This means more testing. Don’t do this over and over again. I, for one, was tested three times within an eighteen-month timeframe. Determine whether you will ask for a second opinion based on what was assessed, not what the outcome was. Testing needs to be comprehensive, including assessment of cognitve, social and emotional functioning. Educate yourself about your child’s disability to know which other aspects may need testing (eg. tactile skills if your child is blind). If testing wasn’t comprehensive enough, this is a reason to ask for a second opinion, for exaple, if your child is autistic and only their social and emotional functitoning was assessed. This was the case with my first assessment, and it was logical that my parents sought a second opinion. When they sought a third opinion after the second ed psych’s conclusions based on comprehensive testing didn’t suit them, well, that wasn’t. As I said, once every three years is a reasonable tiemframe to get re-assessed. Unless there are truly good reasons for it, you shouldn’t ask for an earlier re-assessment. Remember when you had to take your standardized tests in school. An educational psychology assessment is as stressful.

As Dinky’s Mom says, an educational psychologist cannot make a diagnosis or get your child into a specific school. They can only report on your child’s abilities and difficulties in various areas of functioning and recommend support strategies. You will usually need a medical diagnosis from a pediatrician or other qualified health professional to get your child into a specific kind of school. For example, when my parents first sought special education for me they checked out a school for children with mobility impairments, but my motor deficits were not severe enough to be allowed into that school. My primary disability was blindness, so I was accepted into the school for the blind. (I first went to a school for the partially sighted, but this shcool now serves blind children too.)

Make sure you check out all aspects of a special (or mainstream) school before you decide on whether to apply there for your child. Again, a school deals with the whole child. Dinky’s Mom was asked to check out a school that serves children with severe intellectual disabilities, while Dinky is academically able. I, too, found myself in schools where the majority of the other kids had some level of learning difficulties, even though I went to the “single disability” class. In the Netherlands, most children with disabilities nowadays don’t go to special schools due to budget cuts, so the kids who do likely have more than one disability. Then again, so do I.

I remember my parents were ultimately fed up with special education and decided to mainstream me despite there still being options for special education that may’ve been more suitable than the schools I’d attended alreaydy. However, I’m aware that the perfect school does not exist, and this is one big reason I’m for individualized educational programming. I remember the second ed psych, the one who did the comprehensive testing, put in her first recommendation that a school needed to be appropriate given my high academic abilities. At the time, only mainstream schools met this need.

I understand my paretns having pressured me to do well on the ed psych tests and to cope in mainstream school. I was loutright lying to the third ed psych (my parents claim he’s far too clever to have let that happen, but I know that I did), because I knew that severe social and emotial problems were the reason I was advised into special ed the year before. The man still managed to spot some of my problems, of course. Anyway, as I said, ed psych evaluations are stressful. Don’t make it worse by talking about what outcome you hope for in front of your child too much.

Lastly, once you’ve found a suitable school, don’t expect it to always be suitable. I was mainstreamed, coped okay for the first month or two, and then was presumed to be doing fine for the remaining nearly six years. I did get more testing, but that was only because I participated in a preemie follow-up study. Besides, psychological testing isn’t everything.

Depression in Autistic People

When I first learned about Asperger’s Syndrome and high-functioning autism in 2002, I read an interview with Tony Attwood in a New York disability awareness newsletter. For those who don’t know, Tony Attwood is an Australian psychologist and expert on Asperger’s Syndrome. In the interview, Attwood explained that many people with Asperger’s Syndrome suffer from depression in adolescence because they are aware of their differences but cannot change their behvior on their own. While I have not personally suffered with clinical depression, I can relate to lower-grade depressive symptoms that originated for me at around age twelve when I was first becoming aware of my social differences.

Depression in autistics is often missed, because it overlaps with certain autism symptoms, such as social withdrawal, repetitive/obsessive thoughts, and black-or-white thinking. Also, some autistic people’s depression is mistaken for improvement in behavior. I remember reading in a Dutch book on autism about a young man who had had an obsessive interest that he was constantly talking about. When he stopped talking about his special interest as much, people thought he was improving. In reality, he was severely depressed.

It is often hard to treat depression in autisitcs, especially if the autism is undiagnosed. I mean, people can get their depression in remission throguh cognitive-behavioral therapy, medication or both, but their social differences will not subside. Social skills training may help, but even so, autism cannot be cured, and I’ve found social skills training that was aimed at more general populations particularly frustrating given the lack of practical instruction and the underlying idea that people with depression or other general mental health conditions do essentially possess social skills. One sort of social skills training that I’ve found some use in, is the Liberman module on social relations. Liberman modules were originally developed for people with schizophrenia. They use a lot of repetition, roleplaying etc. rather than just telling the participatns they need to listen, ask questions and reflect on the other person’s feelings. Unfortunately, the training also assumes cognitive deficits, so that for example each of the participants in my group were asked to repeat the goal of the module. I found myself being annoyed by this.

Please realize that insistance on changing socially inappropriate behavior may make an autistic person more depressed. A few days ago I wrote about my diagnostician insisting I unlearn to twirl my hair. When he said this, I was in my first month on the psychiatric ward with significant suicidal ideation. That was not the time to insist on social skills. Therefore, it is my opinion that someone who is still depressed, should not be put into a social skills program. It’s important that depressed autistics (and every autistic for that matter) learn that they are acceptable for who they are.

Appreciating Progress

There is a lot of debate in the disaiblity community about what to expect from children with disabilities. Some people say we need to treat them the same we would typical children, because the world isn’t going to adapt to them when they’re grown. Others say we need to stop expecting and start encouragign, valuing and being grateful.

Both these philosophies have some value. I derive my quality of life from meaningful activities rather than meeting expectations of measureable progress, but measureable progress is what politicians and insurance companies look for when fudning or deciding on funding of our care.

It is my belief that expecting a child to be the best self they can be, does not contradict being thankful for the little things they achieve. However, for this, we need to let go of comparing our children to others at all times. I can see how life skills training is important, because, well, the care system is on a tight budget and that isn’t likely to get ay better. But that doesn’t mean that as people with disabilities, as parents, as friends and family, we must take these skills for granted. They’re important, yes, but they don’t come naturally.

It’s true that health insurers won’t care to appreciate the little achievements your child has made, particularly if they don’t end up costing the insurer less money. Same for future employers if the grown child’s skills won’t make them more employable. That doesn’t mean you as a parent need to stop appreciating your child’s progress. Also, as parents, you will more than a future employer or health insurer appreciate progress that is not measureable, such as the child growing into a strong-willed, kind, honest individual, for example. Continue to appreciate this.

I derive quality of life from meaningful activities, from contact with caring relatives, from spiritual growth. These don’t cost my health insurance company any money. If you as a parent don’t appreciate your child’s activvities, friendships and spirit, who will? Friends, if they’re genuine, appreciate your child for who they are, not for the life skills they have or grades they earn in school.