Thoughts on Autism and Behavior Modification

As I said yesterday, autism sucks sometiems. This doesn't mean it needs to be eradicated. Then again, not eradicating it doesn't mean not pursuing treatment for its bothersome symptoms. I would pursue treatment for certain symptoms even in an ideal society. For example, I take medication for irritability and anxiety and see no reason not to.

Where it gets trickier is when I'm forced by circumstances to pursue treatment, and others dictate what kind of treatment I get. I may legally be an adult, but I am not in a position to live without supports, which in essence creates a power dynamic in which my staff largely determine whhih of my symptoms get treated and how. Behavior modification is staff's favorite treatment modality, and even though originally, behaviorists tended to include the environment in their assessments of behaviors, B-mod has largely gone down to ignoring and/or punishing "negative" behaviors and sometimes rewarding "positive" ones.

I put these two between scare quotes because, what is perceived to be a positive or negative behavior, is not always (or rather, is rarely) objective, and even when a behavior is by most perceived to be positive or negative, the way it's handled may still vary depending on people's perceptions of what is behind said behavior (which, I might say, the original behaviorists didn't care about). For example, as long as I'm not acting out aggressively towards others (which icnludes mild verbal aggression), I can exhibit as much self-directed violence as I need to. I assume the idea behind this is that I'm borderline and borderlines need to be responsible for their own behavior and its consequences. I've had people seemingly more annoyed at the fact that they had to take care of my physcal wounds than concerned at the fact that I'd inflicted them.

Now we've moved past the times when cognitions, emotions etc. didn't exist. Lay behaviorists (ie. most staff) have taken just what they want out of behaviorism. I remember in 2008 my diagnosing psychologist recommended a functional bheavioral assessment on my meltdowns. This includes close observation of behavior, antecedents and consequences, in order to hopefully find the stimuli that trigger the aggressive response. Now I've not yet figured out what I think of this, but I never got to, since such an assessment never took place. The staff introduced seclusion, used it as a threat when I became even slightly irritable, noticed that made my behaviors decrease and decided this was the cure.

Now let me tell you: autistics have as much emotion, cognition and sensation as neurotypicals, we just experience it differently. If you wouldn't want to be subjected to harsh behaviorism yourself, then don't subject an autistic to it. If you want to eradicate a behavior, observe its situational context closely and consider how you would respond in this situation. Is the autistic perhaps trying to communicate the same that you would in this situation, only using a different modality? Are they perhaps responding to sensory overload the same you would, only experiencing this overload differently than you would? If so, consider meeting the autistic's needs beofre you attempt to modify their hehavior. If you want to modify their behavior anyway, consider whether you would want your preferred B-mod method used on yourself. I think everyone who has the power to seclude, restrain or tranquillize another person, needs to have expierenced it themselves first. Lastly, don't assume that just because the autistic isn't displaying behavior that annoys you, it means that they're coping fine.

This Is Autism

Last week, Autism Speaks told the world that autism is a number of bad things, including fear of the future, life in despair, a burden, etc. As a response, there's a flashblog going on today where autistics and allies submit their art, videos and blog posts on what autism really is. Here's my contribution.

Let's start with the facts. Autism is a developmental disability that causes problems in information and sensory processing. This leads to behaviors such as repetititiveness, withdrawal and different ways of communicating and relating to others.

Autism for me has both positive and negative consequences. One of the phrases that Autism Speaks likes to associate with autism, is in fact correct for me: fear of the future. This, however, is a pretty common fear in today's society. We're (here in the Netherlands) still in economically hard times, and I personally witness people worrying about whether they'll get a job, sell their house, etc. These are fears for the future. They may not be the same as mine - I worry about health care cuts -, but it's not like my worries are unique to autistics and their families.

Autism sometimes makes it harder for autistics to participate in society - or is it society's unwillingness to adapt to autistics' differences? These differences, in my case, include inabiity to handle intense, unexpected stimuli and/or multiple stimuli at once. I know that not all these can be prevented, but it's people having a mindset that autism is ultimately something that needs to be eradicated at least on the surface, that makes it worse. This attitude leads to people seemingly deliberately ignoring my sensory needs for the sake of treatment. And no, this is not a consequence of autism, this is a consequence of intolerance.

I will not go so far as to say all autistic experiences are due to discrimination. As I said, not all difficulties can be avoided. Yet neither can all difficulties for a neurotypical. Some autistics, including myself, have it harder than most neurotypicals. I won't deny this, and I won't deny that autism sucks sometimes, but so do a host of other experiences that we don't give nearly as much attention to eradicating as Autism Speaks does with autism.

Born Borderline?

Yesterday there was a discussion in a Facebook group about whether borderline personality disorder could be a brain condition you're born with. The original poster started by saying she feels so broken and has her whole life that she wonders whether BPD is not just a mental disorder, but a brain dysfunction.

Now I want to say that a more severe disturbance has nothing to do with whether you were born with the condition. It's not like, if you were born with it, that it's necessarily any worse thn if you acquired BPD as a result of childhood trauma. Some commenters mentioned feeling their wacky childhood may've been due to their BPD rather than vice versa. Does it truly matter? I don't think so. Like, people are usually born autistic, but this doesn't mean all that happens to the autistic growing up is due to autism.

From what I understand, BPD is caused by a combination of temperament, which is largely genetic, and childhood circumstances. There was this debate in a Dutch women's mag a few months ago about two parents of BPD adults saying they didn't like the assumption that BPD is trauma-based because they didn't abuse their children. Then someone with BPD responded that even the most ordinary parents make mistakes, and this can set off BPD in vulnerable people.

Let's move away from black-or-white thinking in the nature/nurture debate. Let's also move away from blaming ourselves when something is brain-based, or feeling more broken for it, and from blaming our parets when something cannot yet be shown to be brain-based. Therapy can change brain function. So can other environmental circumstances, like trauma. When we have a brain dysfunction, we may perceive experiences differently. The two basically interact.

I remember when the Dutch organization that oversees health insurance proposed to drop mental health coverage for people who'd gotten mentally ill as a result of life circumstances. Have we truly gone backwards that much, believing that the brain and mind are two entirely separate entities? Science shows that, with mild depression for example, it doesn't matter whether it's due to recent divorce or it comes out of the blue, a wait-and-see approach is always best. With severe depression, not so. And as for BPD, it's usually severe enough to warrant treatment whether it's brain-based or not.

Moving Beyond Blame in Abuse

A few days ago, Soaring Survivor wrote an interesting post on forgiving yourself in the process of healing from domestic violence. Forgiving yourself, she says, is harder than forgiving the abuser.

I always find myself thinking that my situation is almost unique, in that I myself was aggressive and my family responded with aggression to my behavior. Then I found out, I don't remember where, that in most situations of intimate partner violence, there is not simply one person who is the perpetrator and the other who is the victim. Rather, there tend to be some form of abuse on both sides. I am not saying that this is the case for Soaring Survivor, as I don't know her situation. What I mean to say is that my situation, involving sort of provoked aggression, is not as unique as I used to think.

This makes forgiving myself extra hard. I have forgiven my family, I think, but too often this comes down to trivializing what happened. I know that my parents weren't sadists, and I often say this to justify their actions. They did what they thought was their best.

Then a few weeks ago I read a response in a women's magazine from a person with borderline personality disorder to two parents who had complained about their children's BPD being attributed to abuse. The borderline patient said that even very ordinary parents make mistakes, and this can set off BPD in vulnerable people. Does this mean they're pitiful victims? No.

What I realize as I write this, is that maybe the hardest part of forgiving both yourself and the people who hurt you in your life, is shifting the focus away from the question of blame. Ordinary partners and parents (and children) act out violently, and accepting this is hard but necessary for both survivors/victims and the general public. Abuse happens, and the idea that only sadists perpetrate it, gets a whole lot of survivors/victims unnecessarily stuck in self-blame. Forgiveness may involve accepting what happened without letting it hold you back from living a fulfilling life. I'm still struggling with this.

Appearing Indistinguishable vs. Being Yourself

Neurodivergent K wrote an interesting post on the tyranny of indistinguishability. I think I have quoted one of this blogger's posts before, on the same topic, but this one again has interesitng points.

Unlike what people believing in the indistinguishability logic assume, it's not like, once you've reached this goal,, you'll always continue to appear indistinguishable. In the preemie sphere, people often talk about catch-up, when in fact a lot of preemies do not just have developmental delays, but developmental differences as well. Same with autistics, but more so: all autistics are not just delayed (in fact, I'd argue against the idea that we're delayed at all), but rather different. Suppose that an autistic, who we shall name Joey, started early Lovaas-style ABA at age three, and, he being a pretty good student, reached the goal of indistinguishability by age six. Now I know that ABA proponents often argue that autism will not go away by age six, and some even argue for ABA for adults. I reckon that if it were truly effective in its aim of indistinguisability, it'd not be needed for life. Anyway, Joey makes for a pretty average-appearing first-grader thanks to his ABA. So the government decides to cut his services (I will get to this later) and he is mainstreamed. Joey performs on grade level in first grade, even though it takes him more effort to complete his schoolwork. Effort doesn't count, and Joey continues his schooling in second and third grade. Once he reaches fourth grade, his teachers and parents notice he is lagging behind. Bring in the ABA therapist again and make him appear indistinguishable again?

Autism parents who advocate lifelong ABA would say yes. I and other autistic advocates say no. After all, as Neurodivergent says, you can appear like a crappy excuse for an NT or you can be the best person you can be. Besides, effort does matter to the autistic. Suppose Joey is restarted in ABA and, through his façade of indistinguishability, slides through middle and high school, or so it appears. His parents don't care about effort, so even though he is increasingly depressed and exhausted, he is pushed until graduation. Then he leaves his parents' home and goes to college, where he crashes and suffers major depression, anxiety and other mental health symptoms. These are so severe that he needs to quit college and ends up on disability.

This story is not mine - I was not involved in Lovaas therapy and was not diagnosed till adulthood. I was, however, similar to Joey and other autistics in that normalcy was expected of me. Effort can't be seen and the people around me likely didn't realize how much it cost me to appear like a lousy NT. I am still trying to find out how to be my best self.

Pathological Demand Avoidance (PDA)

A few months ago, I became a member of some groups for pathological demand avoidance. Pathological demand avoidance (PDA) is a term coined by Elizabeth Newson from the UK for a set of symptoms that she claims are part of a distinct autism spectrum disorder. These symptoms include:

• Obsessive resistance of everyday demands.
• Appearig sociable on the surface but lacking deeper social understanding.
• Excessive and sudden mood swings.
• Language delay, possibly due to passiveness./LI>
• Obsessisve behavior, often focused on people rather than things.
• Comfort (sometiems excessive) in role-play and pretending.

People with PDA are thought to have high anxiety and a need to be in control. This causes them to actively and/or passively resist demands placed on them by others.

I am not yet sure what I think of the existence of PDA. Is it yet another pathologization of annoying-but-normal behavior, or, worse yet, is it the new drapetomania? You know, the compulsive running-away of slaves? What I mean is, is it, a healthy response to excessive authority? I was discussing something like this with my therapist last Thursday. I didn't mention PDA - we're treating my symptoms as part of borderline personality disorder -, but now that I think of it, I realize that the idea of PDA fits in neatly here. I have a seemingly compulsive need to resist expectations from others. Until I spoke about this to my therapist, I've always said this is a normal part of rebellion against the institutional system I'm in. Or is it? I resist attempts to give me responsibility for my own life, too, and eaarlier last week, realized I wasn't sure I wanted to recover, out of fear of losing my support before I was ready.

Now I am not advocating labeling people with more diagnoses than they need. In my own case, it could well be that my problems are due to a combination of autistic overload, BPD-related identity confusion and having lived in situations where others determined my goals for much of my life. I am still unsure as to whether my therapist is not one of these authority figures, who wants independence only insofar as it isn't defying her idea of who I am.

An important thign which Newson highlights in relation to PDA, is that ABA-style behavior modification does not work with PDA children (or presumabley adults). The therapeutic relationships is much more important than it is presumed to be in behavioral interventions. I like this, although I feel the therapeutic alliance is important for others with autism spectrum disorders too.

One thing I don't like about Newson's theory, is that she presumes PDA sufferers to be manipulative. Now I am not one to say that autistics can't manipulate - they can and do -, but here comes the question again of where manipulativeness comes from: is it an innate PDA chharacteristic, or is it learned behavior in an attemt to manage a hard-to-cope-with environment? Newson assumes manipulation in PDA is not something the child chooses out of a will to be annoying, but out of a need for control and to avoid anxiety. Overload, of course, is often confused with anxiety, so in this sense I'm not too sure that I think.

Do Labels Matter?

Just a few minutes ago, I found a great post on Our Stroke of Luck about having a child newly diagnosed with autism and still realizign he's him. I struggled with my comment in a way, because I didn't want to say that autism doesn't matter. It's still a part of who an autistic person is. But it's not all. As Owen's mother writes in the post, he's still adoerable.

I am sometimes told I overemphasize how different I am from other people. I am trying to lessen this habit, because, even though disabilities are a large part of me, they're not all there is. I am also ssmart, have a cynical sense of humor, and am pretty strong-willed. I am a crafter, a blogger, a wife, an activist and a student. I know I've written about this before, but I keep struggling with this identity confusion thing.

One of the commenters on the post said that labels don't matter, love does. I disagree with the first part of this sentence. Labels are what define us, they're just not always negative labels or disabilities. All the qualities I listed above, are labels. Of course these labels make up a whole person, but it can be hard to see yourself or others as the whole person without using the labels that make up you or someone else.

I know what the commenter meant. A disability diagnosis doesn't make the disability real (and no diagnosis doesn't make it unreal). Especially if you were born with your disability or acquired it early in life, there's no way of knowing what you would've been like without it. A diagnosis may be a relief, knowing that your or your child's struggles are not due to laziness or all in your imagination. It may be depressing in the sense that this same reality - the diagnosis and accompanying prognosis - may shatter your dreams. It is an art to find the right balance between accepting and challenging your or your disabled child's prognosis. Labels should matter, but not so much that they become a self-fulfilling prophecy.

Disability and Quality of Life

A few weeks ago, I read a post on gratitude for people with disabilities. It made me think: are disabled people naturally presumed to be unhappy? And if so, do we have an obligation to put up a shiny happy face to make the world know we're not unhappy? I think indeed we are often thought of as necessarily unhappy. While it would be great if we could show some gratitude, for ourselves and others, this is unrelated to disability. Everyone can be a pain in the ass when they're constantly grumpy.

I am a relatively unhappy and a significantly disabled person. I do not feel these two necessarily go together. And what if they do? I sometimes do feel crappy because of frustrations related to my disability. Does this make me a pitiful crip? I don't think so.

Let's face it: life throws challenges at all of us. It's not like living with a disability entitles us to be grumpy all the time. On the other hand, we are not required to put up the shiny face at all times either just to show the world that our disability is not a harrowing fate.

I remember when I was aroudn fifteen participating in a preemie folloow-up study. Part of it involved a quality-of-life questionnaire. I was honest that my quality of life was pretty crap, but made a big deal out of making clear this was not due to my disability. After all, I didn't want the doctors to think that blindness is somemthing worse than death, and, let's be real, neonatal specialists do use quality of life to base ethical decisions about life or death of future preemies on.

Are we, as disabled people, responsible for making the world believe that disability is not a big deal? I don't think so. To give an example, when in like 2011 two deafblind twins were euthanized in Belgium, the National Federation of the Blind (U.S) responded by playing the Helen Keller card. See, she was a major achiever and was deafblind, so deafblindness is no reason to have a miserable life. Maybe so, and I agree that a disability in itself is not necessarily a reason for suicide, assisted or not. However, the NFB did not know the specific circcumstances of these people, and neither do I. Both sides of the euthanasia debate made the case of the deafblind twins about deafblindness. What if deafblindness was only used as an excuse for the twins to get assisted suicide, while the real reason was subjective suffering that may or may not have been related to their disability?

Since euthanasia was legalized in the Netherlands in the early 2000s, the definition of unbearable suffering, which is required for euthanasia, has undergone significant inflation. Formerly, euthanasia and assisted suicide were only lejal on terminal patients, while just today, a man who euthanized his aging but non-disabled wife was found guilty but not sentenced. Maybe there's a difference in that the man in today's case was not a doctor, but people constantly make it about the wife's non-disabled status. Let me make one point: if you allow euthanasia or assisted suicide but only on those with a disability, that's discrimination. It's not like non-disabled people can't suffer. As sort of an inverted argument, are non-disabled people required to live in misery just because they don't have a disability?

Two Bracelets

Lately I've been enjoying polymer clay and particularly have been making beads out of it. I also have bought a number of jewelry-making supplies, such as gemstone and glass beads, charms and wire. Here are my first two bracelets.

This one my husband nicknaemd the Ado The Hague bracelet after a Dutch football club. I think the football club's colors are yellow and green, while the bracelet truly has golden glitters in it, but I'm not sure that it shows on the picture. I used green and golden glitter Fimo Effect and rolled two rolls into what I believe to be a jelly roll. Then I cut beads out of that, then had them lie around forever after baking before I strung them together on elastic wire. I am soon going to make a similar one in different colors for a nurse here.

This one got nicknamed the Christmass bracelet for its green stars. They are made out of turquoise I believe. The golden beads are glass beads. I strung these onto a metal wire and attached the clasp. I got some help with that bit, but must say I can do it mostly independently now.

Disability and Double Standards

A few days ago, Ellen of Love That Max wrote a post on double standards in the parenting of special needs children. As an example, she said that she repeats the same phrases over and over again if Max asks her to, but tells Max's sister to stop nagging about the same topic. Max clearly showed that he was learning the skill Ellen tried to teach his sister but not yet him, ie. the knwoledge that the world does not revolve around him. Nonetheless, some commenters got to talking to Ellen like she was indulging on Max and in fact, Nisha, herself a disabled blogger, said Ellen needs to start treating Max like a neurotypcal child.

Nisha has a good point when she says that the world will not indulge on Max when he's big. Max, too, needs to learn the knowledge that the world does not revolve around him. However, as Ellen said in the original post, she did unconsciously teach him this by repeating his preferred phrase with some "stop talkign about that" mixed in and in an irritated tone of voice. Maybe the repeating of the phrase was one of the things which taught Max to pay attention to what was being said, ie. that he needed to stop talking about this.

What annoyed me in Nisha's comment, was the idea that disabled people need to be treated like they aren't disabled. As I said, I totally agree that they need to learn basic lessons of social behavior, but I do not see why this needs to be done the same way that you would teach a neurotypical child. If repeating a phrase helps a neurodiverse child learn, what's wrong with using that phrase in parenting? Ellen might in fact learn to use the phrase in different intonations and variations to teach Max skills like awareness of others.

My point is, when you use different rules for different children (whether they have disabilities or not), you are not necessarily indulging on them. You are just getting on their level and teaching them to move up from there. Expecting a neurodiverse child to behave like a neurotypical, is not realistic. It will not make their neurodiversity go away. In my own case, it just set me up for constant failure.

Of course, you need to have a positive attitude about any child's or adult's abilities. They need to become the best they they can be. That, however, is not the most neurotypical, but the most able. Let's make a comparison: when I still had some sight, one could've said that I needed to be treated like a sighted person and expected to use my vision as much as possible. That is not encouraging me to be the best me I could be. Rather teaching me brailel and cane travel are. Similarly, autistic or otherwise neurodiverse people need to learn some basic skills, but they can be taught these skills in an alternative way. Look at the bigger picture of the knowledge that the world does not revolve around you, rather than at the tiny piece about the use of repetitive phrases.

Sandy Card

I am extremely tired due to a combination of a lengthy eye doctor visit - it consisted mostly of waiting -, physical pain, and overload due to a very hectic fire drill. I might write about the eye doc visit tomorrow or some other time, or I might not, but right now I just have time for a quickie. As promised, therefore, here is my colored sand card. It is a simple Christmas tree, which I cut out of double-sided sticky foil using the smaller one of the lovely Marianne Design dies. I used gold-colored Sandy Art sand. The stars that fly over the Christmas tree are from my stash. The green cardstock base comes from a pack I bought at the supermarket for much less than it'd cost at the craft store.

Treatment for Its Own Sake

Sometimes, I get the impression that the treatment we get in a psychiatric institution is done for its own sake only. Like, yesterday I was irritable. I tried to communicate that I wanted the radio to be turned off. No-one was in the room except for a nurse, who went like: "Have you discussed with your therapist how you can cope with this?" She meant coping with overloading noise. I went totally defensive and defiant and told her I wasn't going to cope with the freaking radio if no-one was there listening to it. She told me the other clients were coming soon so the radio was on in case someone wanted to listen. Well, WTF? This whole thing gave me the impression that the only reason the radio was on was to teach me distress tolerance.

Let me tell you one thing, the real world isn't there to teach people distress tolerance. If you want me to be prepared for the real world, then don't create these fake situations that have no meaning outside of the hospital. The nurse meant to tell me to communicate my wisht o have the radio turned off differently, but then tell me so and don't go like: "In the real world you'll have to live with others who want to listen to the radio."

I know that the psychiatric institution is not like the real world. No-one beyond college age in the Netherlands lives with ten people on a hallway with just their own room. In the real world, you have to negotiate radio-listening time sometimes, but not with a nurse whose ultimate goal is to annoy you so you can learn distress toleance - unless you've got a two-year-old or a teenager, maybe. More importantly, real-world dynamics are not reflected in the psychiatric system, so don't pretend that they are. Stop pretending to prepare patients for the real world when you aren't. Institutional dynamics are the first thing that need to go if you want to prepare people for the real world. Since these are not going out the window anytime soon, let's just stop assuming you're preparing us for anything other than institutionalized life even if it means institutionalized in the community.

More Crafting, This Time for Christmas

Thanks lovely readers for all the nice coments on yesterday's post and thanks for the follows. If you've only visited yesterday's post, I want you to know this is more of a general blog with an assortment of posts, some of which can get pretty involved. However, I'm loving craft blogging again so here are a couple more cards. Both of these have a 3D effect to them. The first was done using die cuts from a die cut pack, and the second was done using a lovely set of Christmas tree dies by Marianne Design. I am not able to use regular cut-outs, but these were simple enough so that I could build up the image.

Edit: oops, discovered I already posted that first card earlier. Sorry for anyone who's seen it twice.

Crafty Endeavors

I used to have a crafting blog that I posted regularly to. However, as time progressed and my cardmaking did not, I lost interest in posting pretty simple, childish-looking cards. I still made at least one per week for a Christmas card challenge, but only so that I wouldn't be kicked out of the group that ran it. Since I moved to my current institution in June, also, my individual art therapy sotpped, and the group I attend is pretty demanding of independence. I want to transfer to a less demanding group, but have not yet been able to speak to my named nurse on this.

I've been looking for crafts that didn't require sight, and on a Facebook group for crafters with chronic illness, someone mentioned quilling. So I bought a quilling starter kit a few weeks ago and have been playing with it. First, I designed - or rather, didn't design - a random pattern. I didn't take note of or get feedback on the colors or shapes.

I decided not to finish the random pattern because it really felt like a waste of paper. Last Tuesday, it popped into my mind to make an actual design, and the simplest would be to make a card border. I used purple, pink, green and blue quilling paper. I only found out as I was finishing the project yesterday how to make the holes in the coils smaller. I use the needle tool because I can't manage to put the paper into the slot of the slotted tool. I'm not sure how to make the holes as small as they are on the few ovals that one of my staff made using the slotted tool, but overall, I'm quite content with this card. The cardstock and the center flower are from my stash.

I have been trying out a few other crafts, like polymer clay, with which I made a number of jelly roll beads. I have not yet been able to make them into a bracelet or necklace, because some essential jewelry-making supplies have not yet arrived.

I also just today made a card using colored sand, but I'll have to wait to show that one till my husband can take a pic, because I don't want to damage the surface of my scanner with the sand.

"Use Your Words."

Last Friday, Neurodivergetn K wrote a post on the phrase "Use your words.". I only read it today and, partly because I got triggered by this post, I am going to blow off some steam about this phrase. A lot may seem like a repetition of what Neurodivergent already said, but well, tthere can't be too many autistics speaking up against NTs putting their own arbitrary standards of normalcy ahead of our needs.

As readers who're familiar with me and my blog will know, I reside in a psychiatric institution. Its aim is rehabilitation. I've been on a ward that had an even more open rehabilitation-focused vision at least on paper, but staff there were much more willing to bend the rehab paradigm a bit to accommodate me than the staff on this ward are. Note that rehabilitation has two meanings in psychiatry, one in which the client is as much in charge of their care as possible, and the other where the client is trained to become (or appear) as normal as possible. I'm talking about the second meaning here, as I have absolutely no problem with the first.

"Use your words." As I wrote in a comment on Neurodivegent's post, this phrase is often accompanied by "You're intelligent" or "I know you can do it" or some variation on this theme. Let me address these follow-up phrases too.

"You're intellignet." And now what? Firstly intelligence is not the same as speaking ability. Second, what if I weren't intelligent? Would I be cut some slack then, or would my needs just not matter as much? A variation on this theme which I've come to hate almsot as much is "You're an adult". It has its own implications in light of my multiplicity, discounting part of me that actually isn't an adult. If I act like a child, maybe it's because at that particular point I am a child? I know the staff aren't going to buy into that since they've thrown out my DID diagnosis, but it's not like I'm any less or more multiple now that we call it BPD.

On a related note, telling me that my abilities are incongruent, isn't going to help me. I know they are. I know I'm sometimes able to do things that I can't do at other times. I know I'm able to do seemingly complex tasks but not simple ones sometimes. I know I can have quite spontaneous-looking, appropriate conversations sometimes and barely make any sense of my words at other times. Telling me this is not possible is denying the obvious. Telling me this is not appropriate is like telling a blind person to look harder because they can hear fine or telling a person who is night blind that they should be able to see in the dark because they could see fine during the day. (I know many night blind people are also partially sighted, but I'm simplifying the situatioon a bit.) It's not like developmetal disabilities like autism are any less real than visual impairment just because they're more difficult to understand and seemingly easier to overcome through behavior modification.

Let me talk about that now: behavior modification. I was going to write a separte post on that, and maybe I will write one more. Here's the thing: telling me to "use my words" will most likely get me to pull out a script. You didn't know I had them, clueless neurotypical who knows me just enough to see my non-autistic appearance but not well enoguh to truly listen? I may have somewhat more elaborate scritpts than the example Neurodivergent gave, but I do have them. This is why, when I'm interrupted or distracted while executing the script for telling the staff I'm distressed and need help, I often end up having a meltdown. And this script gets interrupted a lot of the time, oftentiems even by staff. They want exact explanations of what I want or need from them, even if they know pretty well what I need. I've sometiems gotten to ask for my PRN when that's not what I needed just because it was the shortest script in that part of my brain I could access. Asking for some quiet time with a staff member, which is what mostly helps me, is a much harder script to execute. Please know: "Can I say somethign/ I'm distressed," is not okay. It's got to be: "Can I please speak to you in a quiet place for a bit when you've got the time? I'm distressed." Sometimes I think it's NTs who are literal-minded.

Need Care? Be a Pain in the Neck

Over the past couple of weeks, I've been pretty fearful of losing my autism diagnosis now that the DID/PTSD was changed to BPD. I've had a number of arguments with various people over whether certain aspects of me, like my inability to live on y own or with little support, are due to autism or due to BPD. The answer matters in some way, because, as I said a couple of weeks ago, if it's BPD, it means it can be treated with cognitive therapy.

Now I have always been very adamant that my inability to live on my own is due to autistic organizing and processing difficulties. To the person believing the inability is due to BPD, this comes across as defensiveness: I'm just scared to take repsonsibility for my own life and I use autism as an excuse.

Unfortunately with this comes the idea that this fear will go away if I just get enough kicks in the butt. I know that flooding is used in anxiety treatment, but is it truly the most appropriate way of treating the fear of taking responsiiblity for your own life, assuming this is indeed what is going on?

I've often wondered and worried how people are going to tell that they are wrong in assuming that all my inabilities (except for those that are obviously due to blindness) are just insecurities. I mean, the only time I succesfully signaled that I needed more support, in 2007, I did so in a very much borderline way, ie. by threatening suicide in a public place. It is easy to say that this is my BPD acting up and I need to be ignored.

Of course, the currently mentally healthy person would say, why don't you just ask for more help in an appropriate way? Now I will tell you something about the way the care system works here: depression, anxiety or other emotinal problems are no grounds for care. Only behavioral problems are. In other words, if you need help, you've got to be a pain in the ass. Now please untangle this reality for me: if you're still well-behaved enough to signal you need help without destructive actions, you're obviously healthy enough not to need this help. Now if that isn't reinforcing behavior problems, I don't know what is.

On Appearing Autistic: Theory of Mind

Tonight, I was discussing with a nurse an autism support meeting I went to last week. We got to talking about how autistic the participants appeared, and the nurse mentioned that she had a family member who works at one of the country's largest autism facilities, which happens to be in my town. The nurse talked about how the autistics who go there are much more obviously autistic than I am.

I have been diagnosed with autism by three different diagnosticians in three different evaluations between early 2007 and late 2010. The last two, who did the most extensive evaluations, both had their reservations about the diagnosis. There were roughly two reasons for this: 1. that I appear to have good theory of mind, and 2. that they weren't sure which of my oddities were due to autism and which were due to blindness or other factors. I want to talk about the first now.

I am pretty sure I mentioned this before, but theory of mind is not the same as prosocial behavior. People who are antisocial, except for maybe the worst of psychopaths, have good theory of mind and use it to their advantage. I honestly have pretty bad theory of mind, to the point where I fail the more compliciated versions of the Sally and Anne test. Theory of mind is the ability to shift your focus from your own cognitions and emotions onto anoother person's. In the Sally and Anne test, Anne has a toy in her basket. She leaves the room and Sally moves the toy to her own basket. Then Anne returns and the person being assessed is asked to say where Anne would be looking for the toy. The correct answer would be Anne's own basket because it was here when she left, but people with poor theory of mind who have seen Sally move the toy, will say Anne will look into Sally's basket. Note that the Sally and Anne test in this version is passed by most typically-developing four-year-olds, and real-life theory of mind is much more complex.

I, for one, appear to have good theory of mind, because I am generally pretty sociable and also because I exhibit a good deal of prosocial behavior. I was told by my former therapist that I had good theory of mind because I apologized in about every E-mail I wrote to her in case she didn't want to receive E-mails from me. This, however, is not theory of mind. I have no clue when it is and isn't appropriate to write your therapist out of session and so apologize just in case. Inndeed, when I am rude, I pretty often forget to apologize if I even realize I am rude. Because I don't talk out of turn and say rude things 99% of the time, doesn't mean I know when it's appropriate to talk and what to say.

In addition, I have above-average verbal intelligence, which allows me to reason through social situations pretty well. I used to make my own Social Stories in high school, but still was seen as quite a rude person. Now that I'm in my twenties, I've learned to adapt and become less in your face unless I'm agitated. While this could connote a better theory of mind - after all, I can reason through social situations to some extent -, it is not nearly enough for what is required in everyday social interactions.

I at one point read an article by I believe Tony Attwood on Asperger's in females, in which it was said that Asperger's is often not recognized in females because male Aspies tend to be active but odd, ie. talking out of turn, talking on and on about one subject, etc. while female Aspies are often passive, ie. only interacting when encouraged to. I reckon that more passive Aspies tend to aslo be more cautious about their social interactions. This could easily lead to them not appearing as Aspie because they aren't saying inappropriate things.

Please remember that autism is not a behavior disorder. It's a neurodevelopmental disorder that impacts on various aspects of functioning, theory of mind being just one. Even if a person has relatively good theory of mind, that doesn't mean they don't have the processing dyfunction that is thought to cause autism.

People Aren't Broken

After being told she'd be officially diagnosed as autistic, Autisticook wrote a post titled I'm Not Broken. I commented on this post, but wanted to expand on and generalize this a bit more.

I remember when in DID meetings, there were people who didn't want to have DID, and people who felt the DID diagnosis somehow validated them. I fell into the latter category and was often told I wanted DID too badly. The people who felt their diagnosis was validating, often said it made them not be crazy. "I'm not broken, I was traumatized," one person said, incidentally in the meeting in which I was kicked out for allegedly having imaginary DID.

In my journeys as an autistic, I learned a lot of what Autisticook describes: autistic isn't broken. In my brief travels through the natural multiplicity community, I learned the same of multiplicity. Then I heard dissociators say they aren't broken but traumatized, almost as if their perps are responsible for every single thing in the dissocitors' lives that is remotely "broken", and I cringe.

I don't care who or what made you the way you are. People aren't intrinsically broken, and using neurology or abuse history or whatever as a reason for not being broken, only makes other people, who don't share this same attribute, look broken. Like, are people broken if their behavior can't be directly linked to trauma or neurology? I'd say they arent'. Their behavior may be unacceptable, but so may the behavior exhibited by autistics or trauma survivors.

I am not saying you can't use your neurology or experience as part of your identity. I do this all the time. What I am saying is that a diagnosis is at once no excuse for unacceptable behavior, and unacceptable behavior doesn't make you broken regarldless of your diagnosis or lack thereof.

Things People with Mental Illness Should Stop Doing

Through a fibro blog I read, I came across 30 things to stop doing to yourself and its adaptation 16 things fibromyalgia sufferers need to stop doing. I am going to adapt this list for people with mental health conditions.

1. Stop running from your problems. This one may seem obvious, but oftentimes, people with mental health problems go on and on until they crash. It is not like your mental health condition isn't there if you run from it. We aren't supposed to avoid all unhappiness and hurt. Rather, confront your problems and learn to accept them, adapt to them or solve them.
2. Stop lying to yourself. Again, your mental illness or life challenge won't disappear if you pretend it isn't there. Like the author of the original list says, the first and hardest chance we can take in life is to be honest with ourselves. There is this idea in some forms of therapy, notably dialectical behavior therapy, that change and acceptance go hand in hand. In other words, you won't change if you don't face the truth.
3. Stop putting your own needs on the back burnder. Having needs is human and normal. Everyone has a need for acceptance, safety, nurturing, etc. As mentally ill people, we often get taught that these needs are not normal because we may expresss them in unconventional ways. Stop thinking that just because you're told that you do stuff "for attention", it's wrong to need attention. On a related note, stop thinking that taking good care of yourself is wrong.
4. Stop trying to be someone you're not. You may want to live without your mental illness, but that doesn't mean you'll become someone else in the process of recovery. Recovery is about becoming the best you you can be. It is a challenge to be yourself in a wolrd that reinforces conformity, but it is a challenge worth taking on.
5. Stop holding onto the past. Trauma may've shaped your life and may've even caused your mental health problem, but you cannot change the past. I disagree with the origninal article's statement that you shouldn't be thinking much about your past, but don't use it as an excuse to keep wishing for a new past. Work on processing feelings that come up in the present.
6. Stop exclusively looking to others for happiness. You are responsible for your own life. While support people or professionals can help you, they will not solve your problems.
7. Stop thinking you're not ready. This thought will often become a self-fulfilling prophecy. No-one, including no currently mentally healthy person, feels 100% ready when they need to step outside of their comfort zone, but it take sstepping outside of your comfort zone to recover.
8. Stop complaining and feeling sorry for yoruself. I disagree with Julie Ryan, the fibro blogger, saying that whining for five minutes without involving friends is okay, and the rest is not. In fact, it can help to whine to an understanding peer sometimes. Where I agree, is that it needs to stop.
9. Stop wasitng time explaining yourself to others. As Julie says, most people won't care enough to listen. Just assert yourself. If people are close to you, it may be helfpul to explain your mental health condition, but to people you casually meet, a simple "No" should be enough.
10. Stop overlooking the beauty of small moments. It's often in the little things that we find that glimpse of happiness. My classical culture teacher in high school once said that there is only one moment in your entire life that you can be happy, and that's now.
11. Stop acting like everythign is fine if it isn't. No, you aren't okay. You're depressed, anxious, having dark thoughts or otherwise suffering. While you shouldn't wallow in self-fity, as said before, you shoudln't lie to yourself either. You may need to put up a smile for a bit when with people who won't accept your mental illness, but among friends and especially with your mental health professional, it's okay and even helpful to be sincere.
12. Stop trying to be everything to everyone. Doing so is impossible, and trying will only burn you out (if it hasn't alreaady). Try to take the chance to make small contributions to people's lives instead.
13. Stop worrying so much. It may be especially hard when you have a mental illnes, but cognitive therapy is effective for a reason: you can change your thought processes. Worrying will not strip tomorow of its burdens, as the original article says, but it will strip today of its joys.
14. Stop focusng on what you don't want to happen. Focus on what you do want to happen instead. This is going to foster an attitude of goal-setting rather than one of avoidance, and this will help you a long way along your recovery.

I didn't include all of the original items. With some, like the commandment to stop spending time with the wrong people, I disagree (there are no wrong people). Others I did not feel were too applicable to mental health recovery. I probably could add some more items to this list, too, but for now I won't.

Non-Disabled Standards and Afjustment to a Disability

When in counseling at the blindness rehab center in 2005, the psychologist, herself blind from birth, had me read her college thesis. I don't remember its exact topic - it was soomething about adjustment to disability -, but I do remember her outlinign stages of becoming aware of nd adjusted to disability:

1. Adhering to non-disabled standards while not feeling one's disability is a handicap. This is the stage where a person is mostly unaware of their difference from non-disabled people. People with an acquired disability may not go through this stage - I am not sure whether the psychologist, herslef blind from birth, talked about this -, but congenitally disabled people do, for example, when they're in special education surroudned by all disabled peers.
2. Adhering to non-disabled standards while feeling one's disability is a handicap. This is the stage of becomign aware of one's difference, but not accepting it and assuming one shuld really be non-disabled.
3. Putting non-disabled standards into perspective while feeling one's disability is a handicap. This stage is somewhat of an intermediate stage between non-acceptance and adjustment. I think it can be seen as encompassing the reassessmet and reaffirmation stage and the coping stage in Tuttle's model. While in this stage, the person acccepts the use of alternative techniques, for example, but still feels their disability makes them somewhat inferior.
4. Putting non-disabled standards into perspective while not feeling one's disability is a handicap. This involves self-acceptance as a person with a disability, with an awareness of the way in which one is different but while not seing this as making the person inferior.

I do not remember ever having been unaware of my disability, but my parents tell me that, as a preschooler, I was. I was quite a cheerful child back then. When I was still having the DID diagnosis, my parents assumed the trauma causing it was my having had to go into special education and hence becoming aware of my difference. This is somwhat contrary to my rehab psychologist's experience, who shared in her thesis that she was mostly naive towards her difference when attending special education.

Stage two is where I was stuck for years or even decades. I was solidly stuck on this stage when I was in rehab. When my mental health conditions forced me to step back and put non-disbled standards into perspective I slowly slided into stage three, but with a twist of overcompensation. I became insistent on accommodations probably a little more than I could expect. I am still not sure whether my emphasis on my difference as a badge of honor, so to speak, is in itself unhealthy. I do think that its masking a sense of inferiority is.

What I am not sure about, is what putting non-disabled standards into perspective means. Can you overemphasize your difference and alienate yourself from non-disabled people? Or are disabled people naturally alienated from the non-disabled through the idea of non-disabled standards. After all, what I see in this stages model, is that the person with a disability is always seen as deviant rather than equal. They adjust to their disabiliy relative to non-disabled standards. Is this really as it should be? From a social model perspective, can we abandon this non-disabled standards paradigm and replace it with ahumand ignity paradigm? If we can, will this make adjustment easier? I will have to think on this.

The Many Losses of Blindness

There are many aspects of blindness a person losing their vision must adjust to. I just found an article describing twenty losses of blindness. These include:

• Losses in the basic sense of psychological security.
• Losses in basic skills, such as mobility or techniques of daily living.
• Losses to communication, such as loss of social adequacy, ease of written and spoken communication.
• Losses of appreciation, such as loss of physical integrity, visual perception of the pleasurable or beautiful, or loss of confidence in the remaining senses.
• Losses concerning occupation and financial security.
• Losses affecting the whole personality, such as loss of independence.

For me, losses in my basic sense of psychological security are common and not just blindness-related. I am not dealing with losses in basic skills at this point, and have never felt a loss in communication. Oh well, I have, but it was easy to adjust to.

Where I really struggle is with loss of appreciation. To be honest, I'd hoped to gain color perception back after surgery. This didn't happen, and there is no way of compensating for the meaning of colors. After all, they can't be touched, heard or otherwise non-visually perceived. Having always been quite a visual person, I still have a vivid but decreasing imagination of color, but this actually further reinforces the knowledge that I've lost the actual perception of it. I remember in 2004 going to blindness rehab and discussing with my fellow students what we would do if we gained sihgt. Most people said they'd read, travel or otherwise gain independence. I said I'd appreciate the beuaty of the sights around me.

As for losses to occupational or financial security, these have not really been related to blindness in my case. My parents say I would've gone into engineering or math if I'd been sighted, but this not at all interests me and never did after the age of around twelve. Whether vision loss contriubted to my loss of interest in math, I do not remember. I did consider career paths, such as in speech and language pathology, that are not suitable for a blind person, but I do not know whether I genuinely wanted to become a speech/language pathologist or just wanted to read up on it in university. What I did lose that somewhat relates to this, is recreation. I still miss not being able to draw, for example. Whether this is a loss of appreciation or a loss of occupation, I do not know.

Lastly, there is the loss of personal independence. I did lose independence skills when I lost vision up until my most recent vision loss ten years ago, but now my dependence is mostly related to my mental health conditions and autism. I have to think further on how this personal independence thing affects the whole personality, as is postulated. I think more is meant than just loss of practical independence, but I'm not sure.

Adjusting to Total Blindness

In his book Freedom for the Blind: The Secret Is Empowerment, James H. Omvig talks in the chapter on emotional adjustment about the importance of discussing blindness intensely and mentioning the word "blind" over and over again. This, according to Omvig, makes blindness part of a blind person's everyday language and desentiszes the negative connotation of blindness.

I have been practising this desentisization for years, and it has helped me to adjust to my blindness. In 1999, when I transferred from special education into mainstreaming, I made a conscious decision to identify as blind from then on. After all, my tiny bit of residual vision was not going to be relevant amongst all fully sighted peers.

Still, I know that blind does not necessairly mean no visiion at all. In 2005 or 2006, I wrote my Dutch information page on blindness, and one of the FAQs I answered was whether all blind people are completley blind, and I answered it with a clear "No".

As I'm facing the reality of the mostly failed cataract surgery, I wonder if I need to do a further desentisization, this time with the term "totally blind". I have been doing this for a bit already since early this year, when I noticced my light perception had decresed to the ability to discern daylight from nighttime, but at the same time I was hoping it wouldn't be necessary with surgery. Now my vision is back to probalby where it was around 2004 or 2005, with my being able to see room lighting, detect the position of windows, etc. I was writing this post, then midway through it left my darkened room and realized that my vision, while still technically being only light perception, had increased a bit from before surgery. Should I use this as an excuse not to desentisize myself to the idea of being totally blind?

I know that now that I've had cataract surgeyr, I've had my last chance of regaining sight. My intention with seeking an ophthalmologist's opinion on surgery was more of a psychological nature than of a medical nature. Of course, I hoped for that hand motion vision the eye doctor said was the best possible outcome, but at the same time, I realized right from the start of this journey that a more likely outcome would be no improvement in vision. After all, before the cataract specialist had pretty much given me the choice, I'd expected him to flat out refuse to perform the surgery on me. Once I'd been put onto the waiting list, my hopes were somewhat up, but I still counted on a bad outcome.

Okay, I know this adjustment process has taken me over two decades, so can I technically expect to accept that I'm totally blind and will never regain my vision two days post-surgery? I'm not sure, but I'm actually tired of this adjustment process.

Stages of Adjustment to Blindness

Today on the Psych Central blog, I found an article on coping with chronic illness. According to Donna White, the author of the post, people who are facing a chronic illness go through the five stages of grief populated by Elisabeht Kübler-Ross as occurring in bereavement. These stages are denial, anger, bargaining, depression and acceptance. This post inspired me to pull out Dean Tuttle's 1996 book Self-Esteem and Adjusting with Blindness. He describes not five but seven stages of adjustment:

1. Physical or social trauma. This is a situation or circumstance the awareness of which brings about severe anxiety, discomfort and/or turmoil. In blind people, this may be the onset of blindness or vision loss (for those losing their sight later in life), becoming aware of one's blindness (for the congenitally blind), or the knowledge of impending vision loss (for those who know they will lose their sight at some point before actual onset of blindness).
2. Shock and denial. This involves mental numbing, including feelings of detachment or unreality, as well as the cognitions involving denial. Denial can be partial or full.
3. Mourning and withdrawal. This stage happens when people become more aware of the reality of their situation and the psychological defense mechanism of denial decreases. Characteristics of mourning include self-pity and a sense of helplessness. People in this stage often withdraw from their physical or social environment. Hostility may also be part of the mourning phase.
4. Succumbing and depression. This phase involves a gradual awareness of more specific consequences of vision loss. When these (real or perceived) consequences exceed a person's ability to cope, they may fall into depression. The succumbing phase is characterized by negativism and pessimism.
5. Reassessment and reaffirmation. This phase involves the re-evaluation of one's situation. Anger, depression and self-pity begin to recede and people re-examine the meaning of their life, their values and beliefs and habitual patterns of behavior.
6. Coping and mobilization. In this stage, individuals manage the demands of their social and physical environment and direct their energy towards the tasks of everyday life.
7. Self-acceptance and self-esteem. Having a positive self-image is the last stage in adjustment. Accepting one's blindness is a prerequisite for this. However, a positive self-image is far mroe than accepting blindness. It involves the realization that one is a valuable person. This means confronting one's beliefs about oneself and one's blindness, and challenging negative ideas about oneself.

I was unable to see where bargaining fits into the seven-stage model. Bargainign is where I believe I've been stuck for years, although I may confuse bargaining with partial denial.

In 2004 and 2005, when an online friend had sent me Tuttle's book, I had done a series on my old blog on adjustment with my vision loss and actually the reality of finally having become totally blind. I guess in the next few weeks, I will revisit these posts. I realize I'm actually back where I was in 2004, realizing I've become totally blind and (now truly) there is no way this can be fixed.

Eye Surgery Was Yesterday

Yesterdy was my eye surgery. I got onto the unit half an hour early and was admitted over an hour late because the person before me required complex care. I would've been operated on at 10:00 AM but wasn't until around noon. Technically, the operation was somewhat of a success and somewhat of a failure. The ophthalologist was able to remove the lens, but not implant an artificial lens. She told my husband that for color vision, which I was mostly hoping for, this would not make a difference.

Functionally, well, what can I say? I went to get checked up today and was able to see the flashlight on the first try and also see the blue light used for checking eye pressure. Prior to surgery, the optometrist had had to move the light closer two times before I could see it and I didn't see the blue light. To be honest, I knew the blue light was blue; I could not actually see that this time either. The doctor checked whether I could see what direction the light came from (light projection) or whether I could see her hand move right in front of my eyes, but I could see neither. I had swelling on my cornea, so it could be once this clears up I will get some further improvement in vision. Overall though, I feel that functionally surgery mostly failed, and I reckon the cataract specialist would never have put me on the list had he known this tiny improvement would be all I got. I do hope once I'm all recovered, I can close this chapter and finally accept the fact that I will always be completely functionally blind.

Research Recommendations for Improving Treatment for People with Personality Disorders

Two studies in nursing journals that I read recently examine good practice for personality disorder treatment. Bowen (2013) specifically studied ideas for intervention with borderline personality disorder patients, whereas Fanaian, Lewis & Grenyer (2013) studied more general ideas for implementing personality disorder services. Bowen also emphasized direct intervention strategies, whereas Fanaian et al.'s study more focused on organizational structure. Bowen (2013) interviewed nine mental health professionals, four of whom were nurses, working at a specialist unit for patients with BPD. Key apsects of good practice mentioned by interviewees were:

• Shared decison making: for example, service users and staff should meet in community meetings to discuss and think through decisions that a service user might otherwise make impulsively. This thinking thorugh also counters black-and-white thinking.
• Rules should be actively recreated, rather than being strictly enforced or being abandoned. This is an offshoot from the shared decision making in the above bullet.
• Patients should have social roles, such as jobs on the unit nd group therapy with a pratical focus. This is a way of bringing into the open and then challenging interpersonal difficulties that are so typical of BPD.
• Social disturubances must not just be prevented, but also be used as an opportunity for learning.
• Peer support, including feedback on behaviors, but also including compassion. One interviewee also commented that peer support can enhance the patients' looking inward for the resources to help themselves, rather than viewing the staff as sole bearers of wisdom.
• Open communication. For example, this unit had a structure whereby three service users were elected to discuss issues happening on the unit with the staff as a means of liaison.
• Involvement with the person as a whole, seeing them as more than their BPD symptoms.

Bowen (2013) does highlight that not all of these aspects of good practice can be generalized. After all, this unit was a specialist unit for treating BPD and had its structure built so that these aspects of good practice could be met. For example, there were daily meetings, group therapy, and patients had jobs on the ward.

It was found that mental health workers on this unit had a pretty optimistic outlook on recovery from BPD. This is in contrast to research which shows that mental nurses have negative attitudes about BPD patients. Fanaian et al. (2013) emphasize this negative attitude towards people with personaltiy disorders as a major barrier to appropriate care.

Fanaian et al. (2013) had about 60 experienced clinicians in personality disorder treatment, including psychiatrists, psychologists, social workers, a nurse and a counselor sit in groups of four and brainstorm on topics relevant to personality disorder treamment. They overwhelmingly found that current practice in mainstream mental health settings is both poor and inaccurate. Ways to improve practice included:

• More education and training on the subject. Some groups also recommended that workers in non-psychiatric settings who have frequent contact with personality disorered people, such as social services staff, be trained in personality disorders. Carers, such as family and friends, also were said to need education and training.
• More support through supervision and leadership. For example, there should be more supportive and regular treatment team meetings. Clinicians also mentioned better access to Internet resources on treatmetn and assessment for mainstream mental health staff. There also should be greater support for staff approaching burn-out, as it was felt that staff working with personality disordered people have a high risk of burn-out and work-related stress.
• A shift from risk management to recovery-focused treatment and case management. Acute hospitalization should be avoided when possible. Rather, patients with personality disordeers need intensive, multidiscipinary case management.
• Clearer guidelines and protocols. Many groups of clinicians emphasized a consistent approach across teams, particularly when managing crises.
• An attitude shift to decrease stigma. Some groups emphasized the fact that many health professionals have a negative attitude about personalityy disorder patietns, and this is a barrier to effective treatment.

Fanaian et al.'s (2013) study, like all studies, has its limitations. The clinicians participating in the study were invited to a personality disorders meeting based on expertise and experience. Therefore, it is not known whether these findings generalize well into mainstream mental health provision.

References

Bowen M (2013), Borderline Personality Disorder: Clinicians' Accounts of Good Practice. Journal of Psychiatric and Mental Health nursing, 20(6):491-498. DOI: 10.1111/j.1365-2850.2012.01943.x

Fanaian M, Lewis KL, & Grenyer BFS (2013), Improving Services for People with Personality Disorders: Views of Experienced Clinicians. International Journal of Mental Health Nursing, 22(5):465-471. DOI: 10.1111/inm.12009.

Medication Treatment of ADHD Symptoms in Autistic Children

Autistics often have symptoms of ADHD. These symptoms are often treated with medication. About 15% of autistic children take psychostimulants or atomoxetine (Rosenberg et al, 2010). Stimulants are proven to be effective for ADHD in non-autistic children. Whether the same holds true for autistics, however, had not been systematically researched until now. Reichow, Volkmar & Bloch (2013) examined seven randomized, double=blind, placebo-controlled studies comparing methylphenidate, clonidine or atomoxetine to placebo in children with autism spectrum disorders and ADHD symptoms. Four trials were found for methylphenidate, two for atomoxetine and one for clonidine.

According to Reichow et al. (2013), methylphenidate was found to be effective for ADHD symptoms in autistic children. The effectiveness was slightly lower than it is for typically developing children with ADHD but still statistically significant. There was a greater risk of side effects in autistics, particularly for irritability, depression and withdrawal. The risk for common side effects such as insomnia and decreased appetite was similar to that found in typically developing children. One of the studies involved preschool children, and it was recommended by Reichow et al. after reviewing this study that methylphenidate-taking preschoolers with autis be closely monitored due to increased adverse events.

Clonidine and atomoxetine both showed moderate but not statistically significant effectiveness in autistic children (Reichow et al., 2013). These medications warrant further study, also given the fact that only one or two studies were found that met the inclusion criteria for a systematic review.

References

Reichow B, Volkmar FR, & Bloch MH (2013), Systematic Review and Meta-analysis of Pharmacological Treatment of the Symptoms of Attention-Deficit/Hyperactivity Disorder in Children with Pervasive Developmenetal Disorders. Journal of Autism and Developmental Disorders, 43(10):2435-2441. DOI: 10.1007/s10803-013-1793-z.

Rosenberg R, Mandell BS, Farmer JE, Law JK, Marvin AR, & Law PA (2010). Psychotropic Medication Use among Children with Autism Spectrum Disorders Enrolled in a National Registry, 2007-2008. Journal of Autism and Developmental Disorders, 40(3):342-351. DOI: 10.1007/s10803-009-0878-1.

BPD Subtypes

When searching for information on BPD, I came across a set of subtypes that describe the various features of BPD. These subtypes are:

• Discouraged: this type of borderline is either avoidant, believing no-one will like them anyway, or overly dependent on others. They have an intense fear of abandonment. Borderlines of this type may also suffer from depressive symptoms.
• Impulsive: this is the most hated BPD type among professionals. People who are primarily impulsive tend to act before thinkign. This includes violence or other antisocial behavior. Conversely, they may also engage in constant approval-seeking.
• Petulent: borderlines of this type use passive-aggressive behavior, including emotional or physical self-abuse, to get their needs met by others. They have an intense fear of abandonment,, unstable self-image, and inability to express their needs properly.
• Self-destructive: this includes depressive and self-harming tendencies. People of this type may not have many BPD traits other than self-injury and affective instability, so they may not technically meet the criteria of BPD.

Please note that people with BPD may have some features of one type and some of another. I, for one, have features of the discouraged and petulent types.

All types except for the petulent borderline operate in an abandoned child mode. Petulent borderlines operate in an angry child mode. I do see this point, but I want to stretch that the angry child usually masks the needs of the abandoned child, as my therapist explained. I myself cannot feel sadness unless I've first expressed intense anger or rage. Yesterday, I found myself in such a situation. I had had a minor conflict with my husband which led me to fear abandonment. As I got back to the ward, the nurses were assuming I'd had a good day - after all, it was my anniversary -, and were encouraging me to think positvely. Now I could and maybe will at one point write up a whole post on the positivity paradigm, but suffice it to say I snapped. I had a rage that, after a lot of back-and-forth screaming between me and the nurses, led to me running off and wandeirng around grounds screaming. I could only start to feel the sadness and fear of abandonment after I'd blown off some steam and calmed down again.

Eye Surgery

I've been legally blind all my life from a condition called retinopathy of prematurity. This condition is i itself not degenerative, but it often leads to retinal detachment due to scar tissue pulling on the retina. In addition, cataracts and glaucoma may develop. In 1993, I developed a cataract on my right (worse) eye. The cataract specialist felt it would be useless to operate on, so my own retina specialist removed the lens, but didn't implant an artifical lens because I was either too young or she didn't have the ability to perform this procedure. In around 1998, I lost what little vsion I had retained in that eye due to a retinal detachment.

In 2003 or 2004, I developed a cataract on my left eye. I went to an eye doctor for somethigng different (suspected glaucoma, which was then ruled out) in March of 2004. While we were there anway, my father asked the doctor whether cataract surgery would make any sense. The doctor was vague, saying if I thought I would regain some sight he might be willing to put me on the list, but he wouldn't recommend it really. I was raised with the idea that I had to accept blindness and, from my last surgery in 1994 on, my parents treated me like I had no useable vision, so I decided I shouldn't pursue surgery.

But the thought ate at me: what if surgery could restore some of my sight? In 2011 or 2012, I started discussing this with the nurses at my former institution, and they advised me to seek out a medical opinion. Earlier this year, I took up the courage and asked my GP to refer me to an eye doctor at the city's university medical center. When there, the doctor proposed an ultrasound to look at the condition of my retina and optic nerve. He also requested my records from the hospital I'd been going to in the 1990s. Then he sent me on to the cataract specialist.

The cataract specialist said there was really no way of knowing what the actual functional outcome would be. Like, I had no retinal detachment on my left eye and my optic nerve was fine, but that didn't mean I'd actually gain any sight back per se. I read up on some research and found that structural condition of the retina really does not say everything about visual function. The cataract specialist was willing to put me on the list for surgery, and I came in hoping to get surgery, so I consented to this. There is some risk that I'll get bleeding or a retinal detachment due to surgery, but given that I only have a minimal bit of light perception now (being able to discern daylight from night time but not much else), I'm willing to risk this.

Surgery is next Monday. I'm kind of nervous. I guess I'd feel guilty if there were no improvement. Then again, I'd at least know that this was the last thing I could do for my sight then. I feel if there's going to be no improement and I remain totally blind, I will be able to close this chapter sort of. The doctor had some hope that I would regain hand motion vision, which I had in the 1990s, but I am more pessimistic. If I will be able to see colors and very large objects, that would be absolutely great.

Autistic Processing Difference vs. Cognitive Distortion

Today, I experienced a combination of emotional turmoil and sensory overload. Which came first is hard to tell, as I was having oversensitivities already for an hour or so, but the actual reaction, which is either a meltdown or an emotional breakdown, was caused by frustration. Given that both autism and borderline personality disorder come with distress tolerance issues, it is hard knowing which is to blame. It doesn't really matter, except that the two require different approaches. BPD treatment involves skills training in distress tolerance, learning to shift your idea that you can't handle frustration to the idea that you prefer not to get furstrated. Autistic distress tolerance issues involve an increased need for routine and time to adapt to a sudden change in that routine.

When sensory overreactivity comes into the equation, it gets more complicated. If this is assumed to be an emotion regulation or distress tolerance issue, people need to learn to accept that sometimes there's noise they don't like. When people still didn't acknowledge my autism, I was often told that it's other people's right to make noise, as if I was depriving them of that right with my reaction to overload. In autism, however, noise can be painful, and the right approach is to allow the autistic quiet time away from the overloading stimuli.

Now that I write this, I notice that I'm connoting that the treatment I assuem is perceived to be right tfor BPD is really not that right at all. In fact, I believe that you cannot assume that a problem with distress tolerance is ever true unwillingness to accept that things can't happen on your terms all the time, which is what is assumed in personality disorders. There are some people who are truly unwilling to take others' feelings into account, but this si much rarer than the assumption that people are unwilling to take others' feelings into account. I realize that cognitive distortions are not necessarily willful, and that the thought that you can't handle any frustration is not the same as the thought that the world revolves around your need for gratification. What I mean to say, however, is that most people, and especially autistic or otherwise neurodiverse people, do not just think they have difficulties. We genuinely do process stimuli differently, and this means that "can't" is not just a cognitive distortion most of the time. That doesn't mean that autistics doon't have cognitive distortions, too. What it means is that you need to take into account autistics' genuinely different processing style when assessing or treating cognitive distortions. As I was being told for the umpteenth time that my daily living skills deficits are largely due to fear of failure, I begun to wonder whether NTs can truly evr make such a judgment.

Meme: 30 Things About My Invisible Illness

I found this interesting meme for invisible illness week, so here goes.

1. The illness I live with is: undiagnosed other than mental illness (borderline personality disorder).
2. I was diagnosed with it in the year: not diagnosed for my physical symptoms. Diagnosed with BPD in 2013.
3. But I had symptoms since: 2007.
4. The biggest adjustment I’ve had to make is: taking meds everyday.
5. Most people assume: my illness is unreal because it's not diagnosed.
6. The hardest part about mornings are: waking up tired.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: my mobile Internet modem.
9. The hardest part about nights are: going to sleep on time, pain.
10. Each day I take __ pills & vitamins. (No comments, please): 6.
11. Regarding alternative treatments I: have not tried them but am open to some.
12. If I had to choose between an invisible illness or visible I would choose: visible.
13. Regarding working and career: I don't work, have never worked. I was given disability benefits with no problem based on my visible disability which is the least of my disabilities.
14. People would be surprised to know: that I'm in pain even when I don't show it.
15. The hardest thing to accept about my new reality has been: that I can't live with my husband.
16. Something I never thought I could do with my illness that I did was: take a university-level course.
17. The commercials about my illness: I've never seen/heard any.
18. Something I really miss doing since I was diagnosed is: go for long walks alone.
19. It was really hard to have to give up: my dreams.
20. A new hobby I have taken up since my diagnosis is: crafting.
21. If I could have one day of feeling normal again I would: have a great day with my husband.
22. My illness has taught me: all about stigma.
23. Want to know a secret? One thing people say that gets under my skin is: "It's just stress."
24. But I love it when people: genuinely ask how I am.
25. My favorite motto, scripture, quote that gets me through tough times is: "Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved." - Helen Keller.
26. When someone is diagnosed I’d like to tell them: well I've not been diagnosed with anythign yet except for the BPD which I was just diagnosed with, so I'd like to be on the receiving end of some advice first.
27. Something that has surprised me about living with an illness is: how cruel people can be about judging who is really ill and who isn't.
28. The nicest thing someone did for me when I wasn’t feeling well was: allowing me to whine for a bit.
29. I’m involved with Invisible Illness Week because: I want to teach people about undiagnosed illnesses and mental illness.
30. The fact that you read this list makes me feel: appreciated.

Requirements for the Proper Multiple

Tonight, I was talking on the phone to the organizer of the DID support group I was a member of for two years until I got kicked out for presumably not having DID last May. She guessed my diagnosis correctly, but went on to assume I'd imagined my DID. Well, I'm going to be completely honest here: I have indeed internalized some symptoms that I didn't have before my diagnosis, like the amnesia, but I had known for almost ten years that I had parts when I was diagnosed. Did I imagine the splits when I was fifteen-years-old because I wanted to be crazy, while I'd never heard of DID back then? Well, I don't think so. Of course, whether these emotional states are truly dissociative or not, depends on your perspective. The organizer got to saying incorrectly that BPD and DID have nothing in common. In reality, many people believe DID is BPD with more flair.

The organizer got talking of me quoting books on the furums. Well, that doesn't say anything, does it? Just because I listed the criteria of BPD yesterday, doesn't mean I don't have BPD, right? Apparently, if you want to be authetnic, you're going to have to have made up your own symptom list without any influence from literature. I wonder how this person, who studied psychology at university, did this. Apparently, people who've studied mental disorders in college cannot be diagnosed with a mental disorder themselves.

To air off a bit of steam in a healthy way, I'm going to repost and expand on the list of requirements for the proper DID'er that I compiled after being kicked out of the support group.

1. You can't use jargon like "co-conscious", "inner self helper", etc. if you've not had your diagnoisis forever. This is not supposed to be familiar language to a person just diagnosed.
2. Even if you know you've got parts because you've established a fair amount of communication, you can't walk into your therapist's office saying you experience parts in yourself. In fact, you cannot have obvious dissociative symptoms. According to what I've been told, saying things happen to you but not quite to you, is not appropriate either (which is what I really came into therapy with).
3. You must've gotten into therapy with seemingly irrelevant symptoms like depression, self-harm, etc. Then it's the therapist's duty to figure out you're multiple, but they can't just straight out ask if you experience parts in yourself. On occasion, they can, but you must be completely clueless to the fact that it's not normal.
4. You must have some doubts about your diagnosis, and you must fear that it's all real. If you fear you're fake, you're obviously already a faker.
5. You must not switch too openly or demand switches be acknowledged, cause DID is something that's supposed to be hidden. Keeping the dissociation hidden must be an end in itself. Note that you won't get a diagnosis of DID if the diagnostician hasn't seen you switch.
6. You must want to integrate.
7. You cannot have littles who write properly. You also cannot have littles who write improperly but on the right subforum, cause how are they supposed to know where to write? However, you can't have alterrs write on the main forum either. Why else would there be specific forums for alters?
8. You must recognize just enough of what other DID'ers, who obviously all are not fake, say they experience, but not too much. You must be able to articulate your experiences in your own words, and others determine whether you use your own words.
9. You must have time loss, but how you're supposed to know you have time loss, is unclear. You can't just say you lose time when others come out, cause how do you know? You cannot say you don't remember something when asked, because then obviously you could pretend you forgot. I don't know how a therapist is supposed to realize you lose time if they cannot ask, especially given that implicit memory is often intact in DID, so DID'ers act like they do remember what other identities did.
10. In meetings, you must present as the host (with the birth name) at all times. You must be oriented to the present if you want to participate in meetings. On the other hand, you cannot actually be the person with the birth name, cause that person must've gone to sleep, been gone at an early age or be totally unaware of any others. How are you supposed to come to a DID meeting if you are clueless about other personalities?
11. You must have survived horrific abuse, but in this partiuclar group, you cannot talk about it in meetings. You need to drop the occasional SRA reference to make clear that you are an authetnic survivor.
12. You must validate others' every experience, but you cannot say you can relate.

In short, you're required to have just enough in common with other people in the group to be able to benefit from shared experience, but you cannot recognize too much or it'd be seen as imitating.

Comments on Schema-Focused Therapy

When I was told that I have BPD on Monday, my therapist got talking about maladaptive schemas. She apparently assumed I knew what they are. I had some idea, but did a quck search to find out anyway. They are beliefs about yourself that are maladaptive and that have usually been formed in childhood (although they can be formed later on too) and repeat themselves over and over, thereby influencing your coping mechanisms. The creators of schema therapy list 18 such schemas. The ones that most apply to me are:

• Abandonment/instability: the belief that you will be abandoned by important support people or that the relationship is unreliable or unstable.
• Mistrust/abuse: the belief that other people will aubse, hurt, humiliate, lie to or otherwise take advantage of you.
• Defectiveness/shame: the belief that you are defective, bad, unwanted, inferior or invalid.
• Dependence/independence: perceived inability to handle your everyday responsibilities without lots of help.

That last one is a bit tricky. While I know I'm depenednet, I don't know whether this is entirely due to my beliefs. I mean, overload comes into the equation too. I got a bit pissed when my therapist wrote in my treatment plan that I have a fear of failure and need to realistically learn to take on challenges. As if I'm not trying!

Then my therapist got talking about schema modes. I had some idea of what they were because my former therapist had talked about them when I first disclosed I had parts. Schema modes are the emotional states and coping responses we adopt when faced with life's challenges. I found it interesting that the Schame Therapy Institute says that they can also be seen as dissociative parts. The Institute lists several different schema modes, including the vulnerable child, the punitive parent, the detached protector and of course the healthy adult. I recognized almost all of them, but in fact have more than one of each. Yeah, I'm not going to abandon the DID concept just because it isn't my diagnosis anymore.

Now schema-focused therapy is used to identify and challenge these maladaptive schemas and to reinforce the healthy adult mode. The assessment phase is followed by the change phase, in which clients learn to challenge their schemas and gradually focus shifts from experiential change to behavioral change and preparing for ending therapy. My therapist put in my treatment plan that the current focus would be on learning about origins and continuation of schemas and that I would recognize my coping mechanisms and hopefully be able to shift them in an early stage.

BPD Criteria and Me

Yesterday, I came across someone going through the BPD criteria and describing how he met them. I thought I would do the same, so here goes. My diagnosis was based on DSM-IV-TR criiteria because the Netherlands has not yet implemented DSM5. You need to meet at least five criteria out of nine. I meet at least six and most likely two more.

1. Frantic efforts to avoid real or imagined abandonment. Well, I have a huge fear of abandonment, but my attempts at coping with it tend to lead to actually being abandoned. I often can predict when someone is going to abandon me, but am not sure whether this is a self-fulfilling prophecy, good empathy, or magical thinking.
2. A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation. This is the one criterion I mostly don't recognize. Oh well, I do on occasion push my husband away by saying I don't love him anymore. In this sense, I am the stereotypical "I hate you, don't leave me" type. My husband says his presumption about borderlines is that people fight tooth and nail then five minutes later are cuddling.. I don't do that.
3. Identity disturbance: markedly and persistently unstable self-image or sense of self. This is definitely me. As I pointed out in a previous post, I have no sense of self at all beyond the labels I carry, and in fact am just learning to use my own labels rather than those stuck on me. I tend to have my identity depend on how others see me.
4. Impulsivity in at least two areas that are potentially self-damaging (eg. spending, sex, substance abuse, reckless driving, binge eating). Binge eating an running off into dangerous situations for me (ie. going for walks without watching for traffic). This is not suicidal behavior. Spending when in a hyperactive mood.
5. Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior. Well, I self-harm and often make suicidal threats. when talking on the phone with my sister about my new BPD diagnosis, she said that mild self-injury like I do does not really count and that I make suicidal threats for attention. Well, I disagree with the "for attention" bit but really it doesn't matter.
6. Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days). This is so true for me. I have rapidly shifting moods from irritable to anxious to hyper etc. My sister got talking of manic depression, but then moods have to last for a couple of days to weeks. Mine don't. I return to "normal" (ie. slightly depressed and irritable) or another mood episode within a day or so.
7. Chronic feelings of emptiness. I'm not really sure about this one as I have good reason to feel empty, ie. no job or extensive day activities. Then again, the feeling of emptiness can come for no reason and go with another perseveration or impulsive action.
8. Inappropriate, intense anger or difficulty controlling anger (eg. frequent displays of temper, constant anger, recurrent physical fights). I don't physically fight but I do have recurrent temper outbursts. For me, I'm not too sure whether they're meltdowns or outbursts, but I do have them in situations other than when overloaded too.
9. Transient, stress-related paranoid ideation or severe dissociative symptoms. Well, duh. I have both actually. I get terribly paranoid when under stress and obviously have dissociative symptoms, ie. feelings of not being myself, chronic depersonalization and derealization, occasional amnesia.

I have been trying to find DSM5 criteria, but can't. I know a new model for diagnosising personality disorders has been proposed, which bases the diagnosis on a combination of impairments in personality functioning and personality traits, but this model is used for research purposes only.

The Attention-Seeking Theory of BPD

There is lots of stigma surrouding mental illness. Borderline personality disorder is no exception. In fact, it is among the more stigmatized illnesses. Particularly, people believe borderlines act out to gain attention, while there's evidence they do it out of a need to regulate emotions.

I am very thankful that I didn't have the BPD diagnosis when I was first hospitalized in 2007. I had done something that can with good reason be seen as attention-seeking - made a suicidal threat in public -, but I was realy not thinking of the attention I'd get with this. Besides, the kind of attention I got, did matter quite a bit. It is not purely for attention, even though my threat had a signaling function.

In like 2006, before any mental condition had been diagnosed, I was talking to my named support worker at an idependence training facility about my recurrent meltdowns. At one point she concluded that I did it for attention. "So we won't give you attention anymore. Don't think you can do this for attention." In reality, the majority of my meltdowns and acting-out behaviors have the function of either regulating emotions or overwhelming stimuli.

Another thing with the attention-seeking theory is that nothing really is wrong with attention-seeking. Of course, having a meltdown for attention is not appropriate, but it is not like ignoring the person is going to make them better. It will just lead to them giving up and developing learned helplessness. Rather, professionals and others need to help the borderline by providing the right kind of attention before behavior escalates. I strongly disagree with the ida that borderlines need to be left to solve their own problems. We lack skills in emotion regulation, and need to actually be taught these skills. When other conditions, like autism, come into the equation, it gets more complicated, because we truly do not have the ability to process ordinaryy stimuli. I, for one, have a hard time communicating when overwhelmed, so I can't get across my needs in an appropriate manner. It is further reinforcing learned helplnessness to just ignore me in such a state.