Disruptive Mood Dysregulation Disorder Still Proposed for DSM-V

I just found out that termper dysregulation disorder with dysphoria (TDD) is still included in the proposal for DSM-V, but under the category of depressive disorders. It is now named disruptive mood dysregulation disorder. This reflects the fact that the predonimant feature of this disorder is a mood problem rather than a behavior problem. The “disruptive” part does show that there is still consideration that this disorder is a behavior problem in essence, however.

The criteria are very strict, but unfortunately, bipolar disorder has to be ruled out first before a child can be diagnosed with this disorder. This makes it easier for doctors to diagnose pediatric bipolar disorder, while it seems the TDD idea was to correct the misdiagnosis of pediatric bipolar.

I still think that I would’ve been diagnosed with this had this disorder been present in DSM-IV. I used to meet all the criteria before I went on Abilify, except that a pervasive developmental disorder should be ruled out first.

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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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Weekly Linklove for 02/12/2011

Nicholoas Hakalar at The New York Times: On Evolution, Biology Teachers Stray from Lesson Plan:

Researchers found that only 28 percent of biology teachers consistently follow the recommendations of the National Research Council to describe straightforwardly the evidence for evolution and explain the ways in which it is a unifying theme in all of biology. At the other extreme, 13 percent explicitly advocate creationism, and spend at least an hour of class time presenting it in a positive light.

Shannon LC Cate at BlogHer: Top Ten Must-Read Books for White Parents of Black Children:

As an adoptive mother of two African American children (one Black, on biracial Black/white), I am often asked what I think white people who are considering transracial adoption* should do/think/know/read. As with most parenting questions, I think there are just about as many answers as there are families. That said, there are some issues unique to Black/white interracial families — especially when the parents and white and the children are African American — that can be addressed in a way that is useful to most if not all of them.

Suzanne Reisman at BlogHer: Rape Is a Victimless Crime According to Some Lawmakers:

There’s a lot happening these days that is raising my feminist dander. One of the most egregious of the issues is the attempts by various GOP members to undermine the criminality of rape.

Christopher Azalone at Informed Comment: The Muslim Brotherhood Myth:

Since the start of mass popular protests by Egyptians against their country’s autocratic government, headed by the aging president Hosni Mubarak and his new vice president, Omar Suleiman, a great deal of attention has been paid to Egypt’s Muslim Brotherhood (al-Ikhwan al-Muslimun). Attention on the opposition
movement has been particularly heavy and skewed in the United States where pundits from both the left and the right breathlessly claim that the Brotherhood is poised to take over Egypt in a repeat of what happened in 1979-1980 in Iran and erroneously tie the Egyptian movement to Usama Bin Laden’s Al-Qaeda Central. Much of this analysis is based on fallacies and conjecture rather than fact.

Rachel at Our Bodies Our Blog: Hearings Held on Anti-Choice Bills HR3 and HR 358:

Yesterday and today House committees are holding hearings on two controversial pieces of proposed legislation, HR3, and HR358, both of which attempt to reduce access to abortion.

Kim Milla at Autism Speaks Official Blog: Putting Self Advocacy to Work:

Sometimes it’s easier to just do a task yourself or make a decision for someone else, especially for those who are unable to speak and act for themselves. However, I think it’s important not to take the easy way out. I think its better in the long run to have conversations with individuals and explain things to them, even if it doesn’t appear that they understand everything you are talking about. If you simplify your wording, rearrange sentences and words as needed, while maintaining a clear solid voice, you can often get your point across and increase their opportunity to be included in a choice.

IP at Modus Dopens: Personal Xare and Sustainability:

The talking heads are always telling us that in Scotland, personal care is free to people over 65. The talking heads also tell us that this is not sustainable. In the last few weeks, I have grown to hate the talking heads, with a passion I did not know that I possessed.

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Disability Doesn’t Cause Abuse

I gerenally appreciate Harold Doherty of Facing Autism in New Brunswick for his advocacy for better adult autism services, particularly for those with the most severe disabilities. However, his most recent severe autism reality post had me rather up in arms.

In short, Harold describes a situation in 2007 where a severely autistic woman was abused by two staff members at the care home she lived in. I agree with Harold that this is a strong warning that we need better autism services for severely disabled adults. However, what I strongly disagree with, is his allegation that this is an “autism reality”, rather than an abuse reality.

As an argument, Harold tells me that this woman is more vulnerable to abuse due to her disability, particularly her inability to communicate. This is true. However, that does not turn the disability into the cause of the abuse. It would be the same as saying that rape is a “female reality”, because women are far more likely than men to be raped. This is abuse apologism, and I strongly disagree with that.

Of course, we need to identify vulnerable groups of people, and make sure they are protected from abuse. But blaming a characteristic – be it disability or gender or whatever – for the abuse, is not going to solve the problem. You might say we need to help vulnerable groups to protect themselves, for example by teaching a non-verbal autistic to have a way to communicate abuse, but that is not the same as making the disability responsible for what happened. And if someone is unable to protect themself, for example by being so severely disabled that they have no way of communicating, the solution is to protect them from the outside. Either way, abuse of any kind is unacceptable, and calling it a reality of the person’s minority status, suggests otherwise.

ETA: Harold has responded to my blog post at his own blog.

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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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Change in Autism Symptoms and Maladaptive Behavior after Exiting High School

I’m not quite in the mood for studying. However, I thought that, since I’ve been nominated for best autism spectrum blogger in the Mental Nurse TWIM blog awards, I’d better do an autism post for a change. This time, I’m going to review a study on a subject that is dear to my heart: the effects of exiting high school on autism symptomatology and maladaptive behaviors in adolescents and young adults with ASD.

The study authors measured autistic symptoms using mothers’ responses on the Autism Diagnostic Interview-Revised (ADI-R) and maladaptive behaviors using the behavior problems subscale of the Scales of Independent Behavior-Revised (SIB-R), a scale I’ve never heard of so can’t judge. The ADI-R has four subscales – non-verbal communication, verbal communication, repetitive and stereotyped behaviors, and reciprocal social interaction. A symptom was rated as either present or absent, which allowed for a conservative estimate of improvement. On the SIB-R, there are three subscales – internalized behavior, externalized behavior, and asocial behavior -, and in this case, the mothers filling out the scale did rate severity and frequency. Autism symptoms and maladaptive behaviors were assessed at five different times over a ten-year period. For this study, only those who would exit high school during the study period or who were still in high school at the end of the study period (N = 242) were eligible. They were a subgroup of a larger study of 406 autistic adolescents and adults.

The study authors hypothetized that there would be a continuing improvement in symptomatology, but that improvement would slow down after high school exiting. This hypothesis was indeed confirmed. On all autism symptom subscales except for verbal communication, progress slowed or was reversed into a decline after high school exiting. The same goes for the internazed behavior score, but not externalized or asocial behavior.

The authors hypothetize that the reason for the slowed improvement after high school, is the less stimulating adult services as compared to school services. However, they cannot prove this by comparing services, because they did not examine them. I think there are numerous other explanations: ones the authors already mentioned, such as hormonal changes and slowing cognitive development, but also post-high school burn-out from a too stimulating environment.

Unlike what the authors expecting, the slowing in improvement after high school was the greatest among those who did not have an intellectual disability (ID). The authors assume that this is because the services to adults without intellectual disabilities are poorer than those for autistics who do have ID. This is quite possible, since a lot less non-ID autistics have employment or day activities than do autistics with ID.

Family socio-economic status had some influence on trajectories, where autistics living in the lower classes had more change in improvement after exiting high school than did those in the higher classes. This was, however, difficult to prove, because the sample included an overrepresentation of Caucasians and those in the higher socio-economic classes.

The authors recommend that adult day activities and employment programs should be improved to adequately serve autistics, especially those without intellectual disabilities. This is rather an early conclusion, given that services were not examined. However, any improvement to autism services is always welcome, of course.

Reference

Taylor J, Seltzer M (2010), Changes in the Autism Behavioral Phenotype During the Transition to Adulthood. Journal of Autism and Developmental Disorders, 40(12):1431-1446. DOI: 10.1007/s10803-010-1005-z.

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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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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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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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