Coming Out Multiple

The theme for the upcoming Carnival Against Child Abuse, which welcomes submissions about multiplicity generally, will be Spring. That theme immediately made me think about the spring of 2010. In late March last year, I started coming out about my dissociative symptoms. At first, I shared with my psychologist that I was having depersonalization episodes. I didn’t want to share my traumatic experiences yet, although she asked about that. Even though she took me really seriously, that – the fact that she asked about traumattic experiences – is one of the reasons I sometimes question the reality of my experiences. Did she not suggest I was traumatized before I realized it myself? I have evidence from my journal that I had bad memories before then, but still.

I pretended not to know what dissociation was, because I was in denial that this was what I was experiencing. The nurses initially didn’t connect my dissociative episodes to what history they knew about me, but thought I was overwhelmed. This is, indeed, a plausible explanation for some of my episodes, that come about with stress without there being memories.

About a month later, I wrote my primary nurse a letter explaining the trauma I endured. She already knew, since I’d confided in her previously, but I wanted her to check whether it was appropriate to share with my psychologist. The primary nurse said that it was, and I E-mailed my psychologist. The day after, I had a discussion with her. She reacted rather matter-of-fact, without laying blame on either me or the people who hurt me. I liked this, because it made me feel that what I experienced, was somehow “normal” – I don’t know how to word that, since I do not want to suggest that trauma is normal.

Yet another month went by, and on May 26, 2010, I came out as multiple. That is, I explained that there were things that happened that I didn’t feel happened to me. The psychologist asked whether I felt like I had multiple personalities, and I said I did to some extent. I also shared with her the experience in 2005, where the psychologist who’d heard about my alters, immediately threw the DSM at me. This, I did not want, and my psychologist again reassured me that, even though what I had was called dissociation, it was pretty common and okay. It would take another half year before she realized the full extent of my dissociation and diagnosed me with DID.

In retrospect, I’m very glad that I shared my dissociative episodes and the reality of my parts with my psychologist and primary nurse. Now, my alters can come out to the nurses and my psychologist when they feel the need to talk. This has helped greatly in our cooperation and my awareness of the different parts. For some reason, I also seem to experience fewer depersonalization episodes than I did last year. I do not know why this is, but am happy about it.

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Psychological Report

Last week, I received a psychological report by someone from the Center for Consultation and Expertise, which gets involved when long-term care agencies can’t handle complex care needs, like apparently mine is. The consultant psychologist had spoken to me and my team, and had administered a few psychological questionnaires. She had also analyzed the information that the institution keeps on file about me, which has a summary of my history and parent perspective (from the parent interview part of my autism diagnosis in 2007). She would’ve wanted to speak to my parents – although she never asked me -, but neither I, nor my parents would likely feel like that.

The report said some things about me that I didn’t know or remember. In the summary of my history, for example, it said that I was sometimes physically aggressive towards my mother as a young teen. I thought I was only physically aggressive at a much younger age, and was verbally aggressive as an adolescent. Apparently not. Makes me feel quite guilty.

There are also pretty harsh words about the painful experiences I’ve gone through. I won’t quote them here as they’d reveal the nature of my experience, but they are much harsher than those I’d spontaneously use myself. I know where they came from – I said “yes” when questioned -, which makes me feel rather guilty as well. Is that survivor guilt or is it something else, like truly being ashamed of exaggerating? I sometimes feel that I’ve been dragged into this by suggestion. I have some vague memory of being questioned about sexually inappropriate behavior (which I didn’t go through apart from a few minor incidents at about age six and twelve, by the way) and other trauma way back in late 2009. I never told lies about what I’ve experienced, but maybe its consequences, like the DID and PTSD symptoms, are exaggerated.

That was also what the report talked about: PTSD. As I wrote last Sunday, I checked its criiteria in the DSM-IV and unfortunately may meet them. It was not assessed directly, but my team considers me to have its symptoms, and my personality profile and other scores on questionnaires are consistent with it. ON Tuesday, I realized that I sometimes lose time for when I have a flashback, so that could explain why I feel it’s pretty minor. By the way, my dissociation was hardly discussed, but that may be because its full reality didn’t come to my team’s mind until into the assessment process.

Lastly and most annoyingly but least surprisingly, the consultant questioned my autism diagnosis in favor of believing my social problems are due to my blindness. That is at least what I read between the lines – but I’m known to read things between the lines that aren’t there. Her expertise is in blindness, so it is not surprising that she’d attribute social problems to blindness. She had some things about my hsitory wrong and incorrectly assumed I’d been living mostly in a sighted world, while I’ve been in special education for half my school life. However, the assumption that I’m unable to read non-verbal communication, is of course correct. I would assume that this possibility has been considered at my 2007 diagnosis, and at least I explained about it to the psychologist back then. So did my parents probably, being that they assume that all that is wrong with me, is blindness. All tests she administered – AQ-test (again!), Dewey Story Test (measures social insight) and some semi-structured interview -, indicated I’m on the autism spectrum. I scored higher on the AQ-test than back in 2007, which I attribute to my reduced social contact. It is also apparent that I’m easily overwhelmed and have trouble organizing stuff. So the consultant concludes that I’m on the spectrum after all, and my nurses reassured me that no-one is going to take away my diagnosis. Would be a problem if they did, since then I wouldn’t be able to go to the workhome. By the way, the consultant also briefly mentioned adaptive problems, but I’m not sure whether these are attributable to my autism, blindness or both.

The recommendations are pretty vague. Go on with treatment for my difficult experiences, and work on my self-acceptance, or something. I’m also supposed to need “intensive care”, due to the complexity of my problems. What this means, is not clarified, and, in the Dutch system, this could mean a lot of things. However, the head nurse is pretty confident that I can remain in my current care class – two classes higher than the one I was in in 2009 – when my funding needs to be renewed at the end of this year. One is supposed to work on my independence, but without me losing support in the areas that I need it. This seems obvious, but, according to the report, I’ve been overburdened a lot in the past, and I am clearly afraid of losing needed services.

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The Drawbacks of Participation

The upcoming Disability Blog Carnival will be hosted on the theme of “participation”. Participation is a somewhat tricky subject for me, as I lost my ability to participate in the non-disabled world in many respects when I broke down in 2007. Before then, I’d been on the surface a successful example of inclusion, having graduated from a high level high school with all good grades and always having been able to live with my parents with minimal professional support. I say “on the surface”, because my almost daily meltdowns, my self-injurious behavior, my almost total isolation, my inability to speak at times, and other signs of my disabilities were carefully kept out of view.

The fact that I participated in the “real” world for so many years, sometimes comes back to bite me in the ass. It bites me everytime a commenter suggests my history does not indicate I’m autistic. It bites me more everytime someone asks me to explain why I don’t live on my own or go to school or work, especially if it is someone who is close to me.

Disabilities create barriers to participation, yet as people with disabilities, we’re forced to participate in the non-disabled community as much as we possibly can. Inclusion is touted by every disability activist, and many don’t consider the need for individualized accommodations. Note, I think inclusion is great, but I believe it is a right rather than an obligation. We shouldn’t have to prove how oh so capable we are in order to be valuable members of society.

Furthermore, the degree to which we are seemingly able to participate in society should not be used against us to “prove” we’re not disabled. It is possible that we are able to participate in community life with a lot of support, either formal or informal, or with a lot of effort. I lived a “normal” life for twenty years. Now I’m burned out and can only participate in some areas of non-disabled life, and with pretty much support. This doesn’t mean I am not a valuable member of society anymore. It also doesn’t mean that I wasn’t disabled for these twenty years – I was just able to pass, and passing isn’t always a privilege.

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Diagnosis DID

Last Friday, I had a discussion with my psychologist and a psychologist specialized in EMDR and complex or early trauma in general. The aim of the discussion would’ve been to figure out whether EMDR would be for me, but we quickly found out that it isn’t. The reason is that I have apparently recently been diagnosed with dissociative identity disorder (DID, formerly known as multiple personality disorder [MPD]). The treatment for DID is some kind of three-phase model, in which I’m in phase one and trauma work is in phase three. The first phase had to do something with getting to know your system, developing trust in the treatment, cooperation between the system mebers, etc., but I’m not sure exactly what was said.

It was quite a shock to me to hear my psychologist say that I meet DSM-IV criteria for DID. I knew that I will meet DSM-V criteria if they remain the same as proposed, but the DSM-IV is somewhat stricter. Particularly, I sometimes wonder whether my parts truly come out and whether I lose enough time. I know that I recently lost time after a therapy session in which one of my parts was present, but I thought maybe that was not real. However, my boyfriend told me over the week-end that, back in 2009, I used to switch and not remember that I’d reacted quite differently to a certain situation just before. Back then, I was not involved with dissociation at all, so it would be unlikely to be caused by internalized suggestion or some other mechanism by which I could fake.

I also feel bad, because I wonder whether I have enough trauma in my history to warrant me having a dissociative disorder. I don’t feel like my childhood was that bad, and I don’t believe that’s a matter of not remembering things. Then again, everyone has a different level of sensitivity to trauma, and my childhood was certainly overwhelming. That may be explained by the fact that I’m autistic and therefore more vulnerable to environmental stimulation.

Between the lines, there was some talk about my possibly not being autistic after all. My psychologist actually meant to wonder what of my problems is cause of the DID and what is due to the ASD. I worried that she was going to throw out my autism diagnosis, which not only explains much about why my experiences were traumatic to me, but also serves as the ground for my moving to the workhome next year. I feared that I could not go to the workhome, and where else would I find a safe place to live? I sent my psychologist an E-mail asking her for clarification, and she explained that there are indeed indications to support a diagnosis of autism, and that she is not going to throw out the label. That relieved me quite a bit.

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On Being Gifted and Disabled

I am what is politically correctly called twice-exceptional: intellectually gifted and disabled. The combination of these qualities has thrown me for quite a few challenges in my life. Mostly, it is impossible for most people to see both my intelligence and my disabilities, so they expect me to be either gifted or disabled, not both.

My parents expected me to be gifted. They couldn’t deny my blindness – if they could, I’m almost certain they would have -, but they could minimize its impact and deny my autism. I was fine with that as a child, being quite poorly adjusted to my blindness and assuming my autistic behavior would go away as I grew up. So I learned to present as gifted, as genius. I calendar calculated aloud at family gatherings, and liked the praise I’d get.

The people at my schools for teh blind expected me to be disabled. I’m not sure how they managed to deny my academic ability, but for some reason, they denied it. I still remember in sixth grade the principal calling my parents in ecstasy about my high standardized test score. My behavior problems, daily lviing skills delays, and poor adjustment to blindness were magnified, and my academic achievement failed to impress my teachers.

The education system in the Netherlands is not equipped to meet the needs of people who are gifted as well as disabled. I – or rather, my parents – had to choose between an academically challenging education and a school for the disabled. They chose an academically challenging education, and found a psychologist willing to recommend mainstreaming at last. I struggled at every level other than academics, but till this day, my parents maintain that is normal.

The higher education system is theoretically equipped to meet the needs of those who are gifted as well as disabled, but as soon as you don’t fit into the standard programs, you are too difficult. That’s how I failed college twice.

Anotehr misconception that haunts those who are gifted as well as disabled, is the idea that intellectual ability is the same as being high-functioning, or that you are able to compensate for disabilities by being very smart. This misconception leads people to believe that I am either not truly intelligent, or can live independently without difficulty. Well, I wonder what academic intelligence has to do with housekeeping skills.

I internalized a lot of misconceptions about the twice-exceptional. I till this day struggle with believing I must not be smart because I failed university and independent living, or I must be able to go back to university and independent living because I am smart. In reality, my disabilities at this point prevent me from doing these things, although we can never be sure what the future will hold. That does not mean I’m not intelligent.

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Three Years

Today, I have been in the mental institution for three years. This third year – which will be my last full year in this institution since I was accepted to the workhome -, was quite important. I made quite a lot of progress in trusting people. I came out multiple to my psychologist and primary nurse last May, and came out about some of the bad things that happened in the past. I still find it difficult to talk about that though.

It opened doors, because I may be able to get
EMDR treatment for the bad stuff. The psychologist who does that has a waiting list a mile long, so it will take a while if it is at all possible before I move to the workhome. And that is of course assuming I meet the criteria, which I have a vague feeling that I don’t. However, even if the EMDR isn’t going to work out, my having trusted the psychologist with the information I trusted her with, has already opened possibilities.

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I Will Have a Place to Live

I have some exciting news to share. I went looking at a potential new placement last July. It is a so-called workhome, which is a sheltered living/working placement for autistics, usually in an institutional setting. At first, I was scared that I would not be good enough, but Clarissa, who is the insider that cares for all the other parts, applied anyway. Last week, I had a discussion at the place with a psychologist and a psychiatrist. They asked lots of difficult questions and at one point triggered a minor flashback. I was unable to explain what it was, but fortunately, the nurse who was with me did.

This week, they would be discussing me amongst themselves and calling to let me know whether I was accepted or not. Now, this morning, they phoned one of my primary nurses, and discussed some things with her. I am accepted, but I will get the time to prepare and get some more treatment – possibly the EMDR – here. I will be moving sometime in the first half of 2011. If still needed, they can provide treatment, too, but the focus is on living and working there.

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The Things I Can Hardly Write About: Post-Traumatic and Dissociative Symptoms

I have been thinking a lot about some past events that may or may not be considered traumatic – everyone else does, but I feel ashamed to call what happend to me by such a serious name. Lately, I’ve had what may or may not be flashbacks – moments when I see images and feel sensations related to these difficult events, accompanie by anxiety. For this reason, my psychologist suggested I be evaluated for EMDR. Though it still has “eye movement” in its name, it actually works by stimulating any sense – auditory, visual or even tactile – on both sides of the body. Therefore, it is accessible to blind persons. I am not yet sure whether this treatment will be for me, as there are a number of criteria.

I also came out mid-continuum multiple to my psychologist last May. This enables me to be open about when an insider is dominant during a difficult moment. I am not at this point diagnosed with a dissociative disorder, even though my symptoms are dissociative: I have moments when I am “not there”, for example.

Both of these topics – the flashbacks and the dissociation/multiplicity – are very hard for me to write about, because they are connected to events that are painful and that involve people who might read my blog and whom I don’t want to insult. However, I will in the future write some posts about topics I am learning about, and it is important that you understand where I come from. I will not disclose details about the difficult events for the sake of other people’s privacy and my own safety.

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Benzodiazepine Withdrawal

Ativan withdrawal sucks, especially if you’ve tapered way too quickly. I was on Ativan 3mg daily for nearly three months before I decided I wanted to quit. My psychiatrist advised me to take the drug “as needed”, probably assuming I’d still need one or two tablets everyday for a while to curb my anxiety. But with a fairly low anxiety level these days, I thought I didn’t need the Ativan. There was only at most a week between my taking 3mg and taking zero. That is a rather quick taper.

Now on to the ugly world of withdrawal symptoms. Yesterday, I had a slight tremor which I hardly noticed. Today, it was a million times worse. At first, I laughed it off, although my thought that it came from the Celexa didn’t sit easily with me. I hoped that if it was a rather late Celexa side effect – three weeks into using the drug -, it would pass. I felt also slightly, well, uneasy. It wasn’t full-blown anxiety, but some inner sense of restlessness. Again, I assumed it was due to the Celexa until at last I had a lightbulb moment and googled “benzodiazepine withdrawal symptoms”. Aha! I took an Ativan this evening – “as needed”, cause I was rather tense – and the tremor is gone. Now I think I’ll taper a little slower.

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“Exercise for Mental Health!”

Today, I swallowed my first antidepressant tablet ever, and I feel guilty. I currently read a Dutch book on antidepressants, in which psychiatrist Bram Bakker, among others, states his point of view. His opinion is that a stepped-care approach to depression means that people should first be steered towards exercise rather than antidepressants. Now I happen to take my antidepressant for anxiety, but I am well aware that exercise works for that, too.,/p>

I am not fit, and I am rather sedentary. I used to take daily walks on institution grounds, but I don’t anymore. I went to fitness class once and was overloaded even though a nurse accompanied me. Does this mean that I call for my own mental health problems?

Bakker forgets the barriers to exercise that some people encounter. Due to the construction going on, I cannot take walks on grounds unaccompanied anymore. I cannot navigate the busy gym during fitness class. If I want to bike, I need to go on a tandem. I cannot participate in my institution’s running therapy program. None of this is due to anxiety. All of it is due to my disabilities, and the barriers to access that stand in the way.

Bakker caters his running therapy mantra to depressed but otherwise healthy people. There are many reasons why people with disabilities or chronic illnesses who happen to be depressed, are unable to participate in running therapy and other exercise programs. The “exercise for mental health” mantra is a slap in the face of these people. I know. Will anyone now remove the barriers to exercise that I encounter, so that I can relieve my anxiety without having to take antidepressants?

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