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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Repressed Memories in the Dutch Court System

There are two countries where the emergence of repressed memories of sexual abuse is common: the United States and the Netherlands. In the Netherlands, the controversy around whether one can repress memories at all and whether they are to be trusted, led to strict regulations for people seeking court action in cases of repressed memories.

Firstly, unlike in some states of the U.S., the expiration period for crime does not start at the moment of remembering, but at one’s eighteenth birthday. This way, the risk is lessened that people will have their family members charged over some dispute later in life.

Secondly and more importantly, alleged victims of represssed sexual abuse – and any form of ritual abuse – will have to be evaluated by a team of experts. This team includes a forensic researcher, a clinical psychologist, and a psychologist with expertise in memory. It is said that these experts are not there to allege that repressed memories or ritual abuse are not real per se, but to make sure the testimony is looked at carefully. In practgice, however, many cases are dismmissed over this sort of evaluation.

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One More Week to Submit Posts for the Blog Carnival of Mental Health

As you might know, I will be hosting the first Blog Carnival of Mental Health at the end of this month. Unfortunately, I’ve received only one submission so far. I’m still looking for posts on the theme of “diagnosis”. Posts can be submitted in a comment here or via E-mail. The formal deadline is November 27, but I will be somewhat flexible with that. Remember, posts from LJ, DW and even Tumblr blogs are welcome.

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Life After Trauma, Part 2: Possible Effects of Trauma

Chapter one of Life After Trauma starts by defining trauma. It is made clear with an example that the same experience may be traumatic to one person, but not another, depending on circumstances.

Then, possible reactions to trauma are dicussed. They are divided into:

• Physical reactions, such as tension


• Mental reactions, such as changes in the way you think


• Emotional reactions, such as anger, sadness, or other unpleasant feelings, or numbness of affect


• Behavioral reactions, such as irritability or withdrawing

Of course, one person doesn’t need to have all reactions – there is a long list in the book -, and someone may have reactions not listed.

It is also discussed how trauma may affect your relationship with others. You may no longer feel safe with or trust people that used to be comforting to you. But even if this doesn’t happen, others may not understand how you feel, and may not react adequately to your trauma. In a box, tips are provided for friends and family members on how to help trauma survivors. You can copy this information and give it to trusted people.

Reading about the possible reactions to and effects of trauma may have upset you, so the authors recommend laying aside the book for a while and doing a self-care activity. I had to lay aside the book for an entire week before I could pick it up again. At the end of chapter one, a relaxation and visualization exercise is provided. Fortunately, it is made clear that you can modify it as needed, because I was not able to follow all the steps.

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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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Dutch Autistics Receive Poor Care

According to a report by the Dutch Association for Autism (NVA), autistics often get the wrong care. Staff at residential care facilities don’t often know how to handle autism, hence causing autistics to end up on crisis wards or in isolation rooms. The NVA has been collecting stories from mostly family members of autistics about poor care since 2008. I at one point considered submitting my own story from my former ward, but didn’t since I never ended up in a “real” isolation room.

To me, it is obvious that care staff need more education about how to deal with autistic clients. This of course will not prevent outright abuse, since every adult should know that is wrong, but it will prevent unintended harm done to autistics by staff.

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Dissociative Identity Disorder in DSM-V

In DSM-V, the criteria for dissociative identity disorder will possibly be broadened in one sense and narrowed in another. The broadening occurs in the criteria A and B, which will substitute criteria A to C in DSM-IV. These new criteria are:

1. Disruption of identity characterized by two or more distinct personality states or an experience of possession, as evidenced by discontinuities in sense of self, cognition, behavior, affect, perceptions, and/or memories.  This disruption may be observed by others or reported by the patient.


2. Inability to recall important personal information, for everyday events or traumatic events, that is inconsistent with ordinary forgetfulness.

The reason an experience of possession is mentioned in criterion A, is to make DID a more globally acceptable diagnosis, replacing dissociative trance disorder and possession in DSM-IV. The reason self-reported disruptions in identity, memory, etc. are accepted, is to lessen the diagnosis of DDNOS. I do not like it that an inability to rcall traumatic events will suffice for meeting criterion B, because there is a lot of controversy associated with the idea that one can repress traumatic memories at all.

It is considered whether a criterion about clinically significant impairment or distress is needed. The rationale behind such a criterion, which I don’t think exists in DSM-IV, is to distinguish DID from culturally accepted multiplicity. I am all for this criterion, because it will mean natural and empowered multiples can be out in therapy without necessarily needing to be treated for DID.

The disturbance, of course, should not be part of culturally normative practices, or be due to the physiological effects of a substance or medical condition. In children, the disturbance should not be attributable to imaginary playmates or other fantasy play.

The DSM-V workgroup proposes several new specifiers:

1. With non-epileptic seizures or other conversion symptoms


2. With somatic symptoms that vary across identities (excluding those in specifier a)

I like these specifiers, for they allow for the recognition of physical symptoms with DID, without needing an additional diagnosis of conversion disorder or another somatoform disorder.

Overall, I like the DSM-V proposed criteria for DID, although they are perhaps a bit too broad. More persons will be diagnosed with DID with these criteria than in DSM-IV, and there is a lot of controversy associated with this diagnosis.

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Victory for Alex Oudman

Last week, the psychiatrist responsible for Alex Oudman’s long-term seclusion, was reprimanded by one of the Dutch regional medical disciplinary boards. Reprimanding is the second lightest sentence, after a warning, but it has a huge impact on doctors. Alex Oudman is a severely autistic man who lived in a mental institution in the northern Netherlands when he was secluded for months at a time in 2008. His family made sure the media was alerted, which even led to questions from MPs and new government policy to reduce the amount of seclusion in Dutch institutions. The family also went to the disciplinary board. I do not know yet whether the psychiatrist will appeal the reprimanding.

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Disabled and Childfree: The Default Assumption

I am disabled and childfree, which means I choose not to have children. While the default assumption is that people my age will eventually have children, if they don’t have them already, this does not go for disabled peple: they, especially women, are automatically assumed to be childless, and the reason is supposed to be the disability.

In my case, this is partly true: I do not see myself capable of caring for children responsibly, and my disabilities are a reason for this. But other factors, such as the fact that I simply do not like children, play a role as well.

Besides, it’s simply none of your business. If I’d chosen to have children, that would be up to me. Now that I choose to be childfree, that is up to me, too. The only person whose business the choice of having or not having children is besides my own, is my boyfriend. So stop assuming that disabled women will automatically be childless, and if they choose to be, stop assuming the disability is the reason. It may be or it may not, but it’s simply not for you to know unless we choose to inform you.

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Agricultural Communities for Autistic Adults: A Comparison to Dutch Workhomes

Yesterday, at the official Autism Speaks blog, there was a post about agricultural communities for autistic adults. These, in the Netherlands also known as “care farms”, provide housing and employment for adults with autism in a supported environment. They range in size from seven to thirty beds according to the article, so none are institution size. That doesn’t mean no institutional power dynamics though, so that is a possible problem: size is not what makes an institution bad.

The new organization, Agricultural Communities for Adults with Autism, aims to collaborate to form two hundred of such communities around the United States. The reason is that the current communities have huge waiting lists. The same goes for care farms and especially workhomes in the Netherlands, which is what this initiative reminded me of.

A workhome is a sheltered living and working environment for autistic adults. Unlike these agricultural communities and most care farms, most workhomes are part of mental institutions. However, as they operate independently, the problem of congregation is largely solved. Unlike at a care farm, workhomes offer more varied work opportunities, such as housekeeping, arts, industrial work, etc. At least one is a farm, which provides both agricultural and other work. Like the agricultural communities mentioned in the post, most provide day programs to adults living in the nearby community. Some, like the farm workhome, are part of a community, while others are located more segregatedly, but in the Netherlands, nothing can be on the edges of civilization due to our population density.

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