Tag Archives: Manipulativeness

The Other Kind of “Pushy Parents”: My “Mind-Blowingly High” IQ and My Need for a Disability Label

I originally intended to write a post on my experience of the other kind of “pushy parents” when the “Hooked on Labels” report first came out. However, I felt somewhat kept from disclosing my parents’ take on what might or night not be wrong with me, because after all I’m still in the assessment process. A rather hurtful comment by my father last Friday made me want to write about this anyway.

By the other kind of “pushy parents”, I mean parents who deny their child a disability label or services for special needs children when the child needs this. Of course, I do have a disability label – I am blind -, and of course, I did go to special ed. It was clear to my special ed teachers and professionals that I had social, emotional and behavioral problems, among other issues, for which I needed help. Most of them however denied my high IQ. As a result, my parents fought for years to get this recognized and to get me an academically challenging education. They eventually won, only to have me go back into the care system after six years of mainstream secondary school.

My parents are incredibly disappointed in me. My father last Friday even went so far as to say that, in a contrived kind of way, I alwasy manage to end up in institutions. Somehow, with my mind-blowingly high IQ, I manage to always manipulate professionals into providing me support I don’t need.

Never mind that my IQ isn’t as mind-blowingly high as my parents would like to believe. My verbal IQ was once measured at 154. This is within the highly (not exceptionally) gifted range. This IQ score was measured exactly once. Other times, I scored much lower, usually around 130. My performance IQ can’t be measured on the Wechsler scales, because I am blind. There is a non-verbal intelligence test for visually impaired children (unfortunately there’s no adult version). I got it administered when I was eleven, but had so much trouble and was so easily frustrated that the ed psych couldn’t finish the test. Of course, my parents likely reasoned that this wasn’t due to poorer non-verbal skills but due to my refusing to do tactile assignments because I didn’t accept my blindness.

And of course, there is no reason for that low frustration tolerance and all the social, emotional and behavioral challenges I’ve ever had, except for my refusing to accept my blindness. My parents say I didn’t have behavioral challenges at all until I transferred to the school for the visually impaired. Makes me wonder why I had to transition at all, since it wasn’t because I had to learn Braille. After all, I transferred in the middle of Kindergarten and didn’t start Braille lessons till second grade.

However, even if I didn’t have obvious behavioral problems – ie. aggression or self-harm – as a young child, I definitely did show signs of social and emotional weaknesses and sensory issues. I was intrigued by strings of information, had trouble relating to other children and had stims and sensory aversions. These may not be problems a parent pays attention to when 1. the child has low vision and 2. the parent believes the child is mind-blowingly intelligent.

I understand some peculiarities in a child can be cute. I remember, for instane, my father bringing me the home supermarket’s peanut butter in the hospital because I wouldn’t eat the hospital’s brand. I was about five then. I remember my mother searching every clothes venue in town because I would only wear seamless socks. My parents were proud that, at age two, I had memorized the underground stops. My parents didn’t mind that, at the same age, I made this crawling-in-one-place movement in bed. They were surprised when I still did it at eight, frustrated when I still did it at twelve and outright angry when I still did it at eighteen. (For those who wonder, I stopped this behavior when I went to independence training at age nineteen.) All of these are potential signs of autism or similar disabilities. I wouldn’t have minded my parents denying that these are potential signs of a disability if they’d always accepted me for them. But they didn’t. Instead, they grew increasingly angry with me for my idiosycrasies. In fact, my self-discovery process relating to autism started with my father using “autistic” as an insult. He should be lucky that I cared to google the DSM criteria before self-identfying with a disorder that he’d insulted me with, or I’d have far more self-diagnoses than I ever had.

And here I am at age thirty, nearly fifteen years into my discovery process with regards to autism. Suddenly, somehow, the behavior that my parents found cute when I was two but were desperate for me to change when was eighteen, is no longer a problem. My mind-blowingly high IQ is, because I use it to con people into believing I deserve a disability label and services that I don’t need.

One last point. Suppose I do really have as mind-blowingly high an IQ as my father claims I do. So does he. Suppose I could use that mind-blowingly high IQ to manipuulate every single professional around me. So could he. So who out of us is the one who is being manipulative? Think on this.

Spectrum Sunday
Hooked on Labels - responses & other relevant posts linky

Scarred

Scarred. It can mean so many things. We can have scars on our bodies and on our souls. Sometimes, the scars on our bodies reflect the scars on our souls. Such is the case with self-harm scars.

I started self-harmign when I was very young. I don’t even remember when I started, but my maternal grandma asked when I was about ten wheter I still banged my head at night. I didn’t, but apparently I’d done this for a long time when I was younger. This is seen as a typically autistic way of self-harming.

When I was older, I started biting myself. My sister and I would sometimes bite each other when in a fihgt – usually I’d bite her more than she’d bite me. I also remember using hand-biting sometimes as a way to manipulate. Hand-biting is typically autistic too, although using it to manipulate is not. This could be related to my pathological demand avoidance traits.

I started cutting when I was sixteen. I vividly remember the first incident. It never got severe – most likely because I don’t have the tools to make severe cuts -, so my scars are relatively small. My biggest self-harm scar is on my leg from an incident last year.

The first time I was confronted with my self-harm scars, was when a staff member at the independence trainign home I lived in at the time, asked me about a slight scar on my hand. I didn’t want to talk about it, fearing that if I disclosed my self-harm, I’d be kicked out of the home.

Self-harm had multiple functions for me. The manipulative function is possibly still there subconsciously, but I also use self-harm to cope with strong emotions that are common in people with borderline personality disorder. Self-harm by the way wasn’t the main reason I was diagnosed with BPD.

As I said, self-harm has many causes. It can be used to express pain, as is often the case for me, but many people also hide their self-harm. If a person does it “for attention”, as it’s commonly called when someone self-harms to express emotions, that doesn’t mean they’re fake. Their (and my!) pain is real, only they have probably learned that the only way to express it is through self-injury. Ignoring people or suspending them from help, as happens in some therapy programs, is only going to be counterproductive and especially harmful if the person hasn’t learned more effective ways of expressing their pain. They need validation especially badly, because the very reason they started self-harming “for attention” is the lack of attention they and their pain got in the past.

Even those who self-harm “for attention” may feel self-conscious about their scars. I am fortunate not to have any too obvious self-harm scars, but I do know what it is like to be questioned about your scarred body. I, after all, have a scar on my belly at one end of the shunt I have because I had hydrocephalus as an infant. Children sometimes said I had a second belly button. When I was at one point worried that my shunt had malfunctioned, my parents also offhandly asked whether I could get the scar beautified if I was going to need to see someone about my shunt anyway. My husband, fortunately, has never made a problem out of my scar. I don’t even think he’s ever commented on it except when I asked him about it.

I am not particularly proud of my scarred self, but I don’t feel bad about it either. In November, I took part in a self-harm event which was being filmed for a documentary series. I don’t have time to go to the preview and most likely won’t watch the series as it airs either, so I won’t know whether I’m in it. If I am, I don’t mind. I don’t show off my scars, but I’m open to educate people about them and their cause.

Mama’s Losin’ It

Mami 2 Five

 

Was My Hospitalization Inevitable?

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

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

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

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

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

mumturnedmom

Mental Illness Is Real Illness Too #BADD2014

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

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

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

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

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

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

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

The BPD Behavior Double Bind

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

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

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

Ramblings on Self-Image and Diagnosis

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

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

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

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