Is TDD the Wrong Name for the Right Problem?

I’ve been reading up on opinions on temper dysregulation disorder with dysphoria. Some, obviously, think the disorder should be left out, either in favor of pediatric bipolar or to prevent more diagnosis of healthhy children. Others, like the Child and Adolescent Bipolar Foundation, think
the diagnosis is a good idea, but it should be renamed.

I can see where the CABF is coming from with its argument that TDD should have a different name. Firstly, of course, “temper” has a bad connotation of willful behavior, while some children who are irritable, may not be so in order to annoy others. For this reason, it should possibly be clarified that the child’s mood is also dysfunctional besides their behavior. Otherwise, why create a separate disorder besides oppositional defiant disorder, which already emcompasses willfully annoying and hostile behavior?

I am not familiar with the treatment implications regarding whether TDD should be considered a mood disorder or a behavior disorder. Since both behavioral and pharmaceutical interventions may be investigated in either case – it is a myth that children with behavior disorders, do not take drugs -, I am not certain whether it matters, except in the sense of the negative connotation again. I, for one, would dread being diagnosied with a disruptive behavior disorder, but I would not mind being diagnosed with the same disorder if it were classified as a mood disorder and thus reflected the fact that my behavior was not just willfully disruptive.

Besides these considerations, please note that “temper dysregulation disorder with dysphoria” is a new term, but its characteristics are not new to research. In scientific papers, the disorder is referred to as “severe mood dysregulation” (SMD). Would it perhaps be easier for research purposes if this term were maintained rather than TDD, too? That would make it quite clear that what is referred to, is the same disorder investigated in research finding it different from childhood bipolar and irresponsive to bipolar medication. Unless there is anything wrong with this labeling that I missed out on, I would think SMD is a more accurate and more useful term than TDD.

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Getting the CCE Involved

The CCE is the Center for Consultation and Expertise. According to its website, this is its aim:

The Center for Consultation and Expertise (CCE) aims to make exceptional care needs manageable. An exceptional care need emerges when a client’s problems are so complex that their own care providers cannot solve these anymore. The quality of life is than seriously at risk. The CCE carries out consultations in all sectors of long-term care, and for this purpose uses an extensive network of consultants. The CCE uses the knowledge and experience from consultations to build expertise, which will be handed over to care providers.

My psychologist is going to get the CCE involved in my case. I heard about it already about two months ago from my primary nurse. That is, she told my occupational therapist while I was in the room – if I want to keep up-to-date on the latest in my treatment, I should make sure to attend the meetings with my OT. However, the psychologist hadn’t discussed the matter with me herself yet, probably due to all the talk that came inbetween due to my bad situation lately, the medication decision (which was my psychologist’s idea initially), etc. Nonetheless, I had time to think it over and had pretty much decided I was fine with it.

I do have my reservations, but these are primarily emotional. First of all, am I really this bad off? The CCE is the agency involved with people in the stage before they make it into newspaper articles about forced commitment, isolation rooms and electroshocks. There’s a word important in that sentence, of course: before. I have never actually seen a CCE consultant approve of any of these practices in such newspaper articles; when they were involved, they were usually either openly opposing it, or they were cited by family members or other staekeholders as involved in the prevention of these practices. In these cases, the institutions are usually blamed rather than the CCE.

But I am not certain whether I trust my institution’s staff enough that they will not take these measures, and, in this light, getting the CCE involved feels like the pavement on the road to hell.

On the other hand, whether we get a consultant involved or not, does not change the actual status of my situation: if I were on the road towards an isolation room, that would not change if I consented to get the CCE to look into my case to see if there is anything to be done about it – besides, the main reason my psychologist wants to get the CCE involved, is to help find placement for when I leave here. Getting a consultant involved will not detereorate my situation.

Lastly, I have the big, fat Not Me factor that makes me feel like this shouldn’t be happening to me. You know, I am not this bad off, am I? Well, yes, in a sense, I am, in that we are obviously getting stuck. But… I am not like the people I blog about, am I? That’s the curebie reality denier voice in my head: “Your care needs are not complex. You can write. Your quality of life is not at risk. If it was, you’d want a cure.” This is obvious and utter horse manure, but it is still at the back of my mind. Is this disability rights activist suffering from internalized ableism? Probably.

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Aripiprazole Update

I’ve been taking aripiprazole, 5mg as it turned out, for 2 1/2 weeks now. At first, I believed the drug would not be effective, for the simple reason that I wasn’t having any side effects. That is, I did feel sleepy somewhat earlier than usual the first few days, but I’m not sure whether that’s due to the medication, as I take it in the morning and never felt daytime drowsiness. I also felt a tiny bit physically restless, particularly at night, but I’ve had that for a while before starting medication, so I’m not certain whether that’s a side effect, either.

I started feeling positive effects a few days to a week into using the aripiprazole. It wasn’t really like a snapping moment, but just that I gradually noticed I was more able to tolerate stimuli that used to overload me and send me into meltdown. I do have to watch that I do not cross my limits, since of course I’m not taking medication so that I can go just a little further before going into meltdown.

The staff are also noticing that I seem somewhat calmer, and for this time, I do not feel that they are imposing wishful thinking on me, since I indeed do feel calmer. I try to make it a big point that I am not accepting being “tested”, in the sense that, oh well, I’m doing better and attribute this (in part) to medication, but that is no reason to see if you can push me over my limits a little. This is one of the reasons I have trouble admitting I am doing better: it might lead the staff to be less supportive. My psychologist says this is indeed an unintended possibility, but that she is making it clear that the staff should make sure not to push me over my limits.

Now I’m still holding reservations, in that medication effects can always wear off and, besides, it could be by chance that I’ve had a few good weeks, but so far, this seems promising.

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Inclusiveness of Online Research

I have recently developed a special interest in online research studies in psychology. I signed up for the Gateway Project, a research project involving autistics, a few weeks ago. Just yesterday, I received notice that there is a new study I am presumably eligible for. Because it includes a perceptual component, I E-mailed Morton Ann Gernsbacher, the primary researcher, asking if my blindness would be an exclusion criterion. It wasn’t specified, and nowhere else on the Gatewy website was it said that autistics with multiple disabilities cannot participate. In fact, the initial survey they ask you to fill out upon registration, includes some explicit questions regarding additional disabilities. I haven’t yet received a response.

I also discovered a list of online psychology research. That got me wondering about the potential for inclusiveness of online psychology research. I’m not certain how psychology research participants used to be recruited, but it is quite possible a few groups would be explicitly or implicitly excluded without their characteristics being exclusion criteria. Woud I – a person with multiple disabilities, institutionalized, in a small country in western Europe – be asked to participate in research? I have participated in preemie research and disability research, of course, but research for which a sample of the general population would be recruited? Unlikely. Yet now, when one of my disabilities is not an explicit exclusion criterion, there are no perceptual or other components that would be a problem for someone with one of my disabilities, and I cannot otherwise see how my disabilities would interfere with my participation, I feel included and see no limits on participation. This may not be the researchers’ intention – maybe I am clouding their research data -, but then I contend they should make it explicit they want a sample of the non-disabled population.

I can also now participate in Internet-based research at foreign universiteis. The Gateway Project is hosted by the University of Wisconsin-Madison, and its initiators make it quite explicit that anyone who speaks English, can participate. The Interactive Autism Network, on the other hand, recruits only participants from the U.S., so I do not participate – and yes, I would have if I were allowed to, cause not all research they carry out is harmful. The psychology research on the Net database is hosted at Hanover College, and the study I just participated in, is carried out by a British university. I, nor any Hanover student, would have been able to participate if the study had been carried out offline.

On the other hand, research carried out online has its exclusionist side, too. It by definition excludes anyone without an Internet connection. Middle-to-upper-class people are disproportionately represented among Internet users. Working class or poor people may’ve been more evenly represented if study recruitment were offline, but then again, maybe not, since many psychology studies recruit university students. I am tempted to think online research has the potential of being more inclusive, but care has to be taken to recruitment and inclusion criteria. It of course has to be acknowledged that participants were recruited through teh Internet, but then again, I cringe everytime I see “a sample of the general population” without further specification, in a research paper anyway.

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Deinstitutionalization vs. Poor Care, Take 5,374

I couldn’t stop cringing when I read an old Autism Research Institute editorial calling for the reopening of instituttions for people with developmental (“behavioral”, argh!) disabilities. The editorial dates from 1997, but I’m skeptical that ARI has changed its view, given that it is still prominently displayed on its website.

It’s the same old song again, except that the ARI editors are accusing disability advocates of the same thing they do themselves: abuse and neglect in some institutions, they say, is used as an argument to close all institutions. Then, they go on to use poor care at some community facilities as an argument against all community-based facilities. Speak of double standards, huh?

I am not a radical community living advocate. In fact, I believe that there is no reason to force people out of areas they want to live in, and if a large group of people happen to want to live together on sheltered grounds, that’s fine with me. Deinstitutionalization shouldn’t be about the location or size of housing, but about the force and abuse involved in many institutional settings – and that includes small, community-based settings with instituttional mindsets.

This is the umpteenth time I say this again, but deinstitutionalization shoudl also not be about cost or about level of trained staff. There is no reason community facilities should be hiring staff “off the street”. What is wrong with a trained nursing team in a facility for people with multiple or severe disabilities, or staff trained in support strategies appropriate to people with behavioral difficulties? I don’t see why deinstitutionalization always has to go along with poorer staff training and fewer staff in general.

Rather than fighting over where a facility should be located and how large it should be – which is up to the people with disabilities to decide, within the limits of local governance over the built environment -, can both sides focus on the real issues please? Address abuse, underqualified staff, force, neglect, client safety… These are important. Changing the size or location of a facility, in either direction, will not change these.

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Why I Won’t Take Part in Dutch Aspie Advocacy

When looking to the surface, you might wonder why I’m concerned with Aspie supremacy, other than out of solidarity. Now I think that solidarity by itself should be enough of a reason to be concerned with Aspie supremacy, but I do hold a personal stake here, too.

Aspie supremacy is often, in theory, based on diagnosis. The Dutch autistic self-advocacy group, Persons on the Autism Spectrum (PAS), welcomes autistic adults with average to above-average intelligence. This by itself is an exclusionist membership criterion, but it does not exclude me. So I could join them and raise concerns about the exclusionist policy from within. Sometimes, I wonder if this is the right way to go. I occasionally, when I have the ability to, try to take such steps on Wrong Planet, which is also pretty Aspie supremacist.

But I cannot do it with PAS, because my own disabilities would get in the way of my doing it. You see, I can access an Internet forum like Wrong Planet without difficulty. I cannot attend a PAS meeting independently, and PAS makes it very clear that they will not provide accommodations.

Besides, I sometimes wonder if it is worth trying to change an organization’s philosophy when it is at the core of that organization’s existence. PAS insists on its independence from any other organization. They insist on autistics’ ability to be self-sufficient. When this is pretty much the ground of the organization, how much can be changed by a single member who cannot even attend meetings without accommodation, and who is herself not nearly as self-sufficient as she should be according to the supremacist view?

I decided not to join PAS already in 2007, when I still conformed far more to its exclusionist profile of the “high-functioning” adult than I do now. The reason was that I didn’t want to be part of an exclusionist group. I did not want my membership, and my value as a member, to be conditional on my performance as a student, as a person who lived independently, as an adult in general. And even if I didn’t have to prove my value as a member, I didn’t want others to be excluded based on some arbitrary standard of “functioning”.

Now that I am institutionalized, unemployable, and less “high-functioning” in a lot of respects than I was perceived as in 2007 (obviously, I wasn’t as “high-functioning” in these respects back then, either), I simplly lack the spoons to even try to become involved, let alone try to change the group’s core philosophy. I cannot go to its activities, which are open to non-members, independently. Neither could I attend its meetings. Let alone that I think I could jump the social ropes of influence – because I have no illusion that these don’t exist in autistic communities. And that is even assuming I would not be exhausted and turned off by constant criticism of my own situation, reminders that I should “try harder” or take an autistic adult as a role model, and erasure of my own identity. Technically meeting membership criteria does not protect me from that.

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Any Girl Can Call the Cops?: Gender Disparity in Perception of Anti-Snitching Code in Homeless Communities

In the current issue of the British Journal of Crimonology, there’s an interesting article on the influence of gender on crime reporting within the homeless community. Particularly, the impact of the anti-snitching code common in street subcultures, and the possible exception to this code for women victims is examined. The article has the misleading title Any Girl Can Call the Cops, No Problem, which appears to be a quote from a male interviewee in reference to the chivalry exception that allows women to report crime.

This exception is, in theory, particularly upheld by males, most of whom state they would allow a woman to report criminal victimization or they would even report on behalf of a woman. The underlying assumption behind this exception is, of course, that women are weaker and more vulnerable. Some male interviewees even blame the women themselves for this – for example, their presumed naivety and temptation to drugs -, while others blame the power dynamic, by which males dominate females.

This masculinist attitude that dictates the power dynamic, apparently also dictates the chivalry exception: males are expected to both dominate and protect females. For this reason, women may be less likely to face physical violence even when snitching, and rape is allegedly unacceptable.

Note, however, that these are male self-reported attitudes, which may not reflect actual real-life attitudes. Females, apparently, do not believe they are exempted from the anti-snitching code. Some, in fact, willfully adhere to the code in order to appear strong and manly, because they are aware that women are more likely to be the target of criminal victimization precisely because they’re perceived as weaker. Better to prevent a crime by appearing strong, than to report one that already happened, it seems. Note that some male interviewees claimed that this increased risk of victimization is a reason to allow women to report.

Other women fear, as it appears from previous studies cited in this paper rightfully so, that they will not really be exempted from the anti-snitching code. Physical violence is a common response to grassing, and it appears that physical violence is precisely somewhat more acceptable towards women than is sexual assault. It is also possible that males will send other females for retaliation when a woman grassed.

So, the fact that women don’t want to appear weak, and that they fear retaliation anyway, both withhold women from actually reporting crimes, despite the fact that males claim they are allowed to within street culture. This is an interesting disparaty that, in my opinion, should be examined further: is it that women just fear unrightfully that they will be revictimized, or do males lie about their real-life attitudes towards the anti-snitching code? What is the influence of the strongly masculinist, patriarchal culture of women-dominating-and-protecting on victimization, anyway? In other words, maybe women are better off fightng the patriarchy than accepting “favors” that are only relative. Unfortuatenly, I don’t think women, or even everyone in homeless communities, could change this on their own, as it is also heavily linked to classism and all the problems associated with homelessness.

Reference

Huey L, Quitoueette M (2010), “Any Girl Can Call the Cops, No Problem”: The Influence of Gender on Support for the Decision to Report Criminal Victimization within Homeless Communities. British Journal of Criminology, 50:278-295. DOI: 10.1093/bjc/azp078.

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House Approves Bill Limiting Restraint and Seclusion in Schools

Good news: according to an article in the Washington Post, the U.S. House of Representatives approved the Preventing Harmful Restraint and Seclusion in Schools Act. I wrote about the bill last December. I’m hoping for this bill to pass the Senate, too, because non-emergency and dangerous restraint and seclusion really needs to stop.

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The Validity of “Functioning Levels”

I’ve seen a few posts lately discussing the question whether we should believe in “functioning levels” or identify with a specific “functioning level”. I, for one, do not believe in them. This is not for philosophical reasons, but because there is simply no valid way of distinguishing a LFA subtype of autism from an HFA subtype.

This is not the same as saying there is no valid way of finding differences between individual people. For example, it is quite clear that someone who can speak, is in that respect different from someone who can’t. The matter isn’t black-or-white, of course – there are people who are partly verbal -, but it is clear that people can be differentiated on the basis of verbal ability. The same goes for IQ, presence or absence of self-injurious behavior or self-care problems, and all the other official or unofficial determiners of “functioning level” that float around the autism community.

But it is simply untrue that someone who is “low-functioning” in one respect, say, speech, will automatically be “low-functioning” in other respects. Some people who can’t speak score quite high on non-verbal intelligence tests. Conversely, some people who score low on IQ tests, can speak. Some people who can speak and score high on IQ tests, exhibit self-injurious behavior and have self-care difficulties. And so on and so forth.

I do not believe in “functioning levels”. I do not identify with a “functioning level” myself, either, except when it is very relevant, such as when acknowledging my verbal privilege. Because granted, I am high-functioning in that respect, and I have no problem acknowledging my abilities and the fact that they provide me advantages over people who do not have (or are not perceived to have) these abilities. That is, however, quite different from identifying with a non-specific, generalized functioning label. I cannot do this. Even I, who meets the criteria for being “high-functioning” in the two most formal definitions – speech and IQ -, do not conform to the general definition of high-functioning autism. Most people don’t. And most people deemed “low-functioning” are not actually low-functioning in all respects, either.

Of course, since many people, including professionals, do believe in “functioning levels”, it is sometimes necessary to identify with one, if only because it’s the label you were given. I was never given an explicit functioning label, but my Asperger’s diagnosis should indicate “high-functioning”. While I personally don’t identify with that label – or with the Asperger’s label for that matter -, it is sometimes relevant that I was or could’ve been given that label. For example, when exclusionist Aspies are policing what abilities we should and should not have, or when autism advocates are saying that I can’t possibly have self-care difficulties cause of my Asperger’s diagnosis.

Diagnoses, however, do not dictate identity. Just because the DSM says Asperger’s autistics cannot have had self-care difficulties in childhood, does not mean that my diagnosis dictates what difficulties I had. I can tell you that I had quite a few self-care difficulties, but they may be explained by blindness (which then the blind movement will object to, again, so what do you want?). Even if there had been a criterion (which there isn’t) that Asperger’s people could not display self-injury, I may’ve been diagnosed with Asperger’s anyway because the diagnostician didn’t know I self-harmed. Psychiatry is not a field of objective labeling, and the autism spectrum is so vaguely divided that the waters get even muddier here. There are many reasons why someone might be mislabeled, or why a certain (sub)diagnosis might be the best fit but not the perfect fit. This goes for the difference between the different ASDs, but it goes for “functioning levels”, too. These aren’t valid, either, and I can see no other reason to believe in them.

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Does One Exclusionist Autistic Understand Neurological Variation?

MJ of Autism Jabberwocky asks: “Do Aspies understand autism?” As I saw the title, I expected the same old drivel about how “Aspies” presumably never self-harm, don’t have trouble with self-care, don’t have meltdowns in public, etc., and for this reason don’t understand the experience of “real” autism. While the post started out that way, that’s not the main point. The point MJ at first seemed to want to make, is that “Aspies” presumably don’t understand that autistics get judged in public.

Well, now that is rather ironic, given that most people anywhere on the autism spectrum likely face a lot of stares and offensive comments, and we probably face more of them than our parents. Many people with Asperger’s stim, too, or have public meltdowns, or talk on and on about a subject of interest. People react with negativity to all these behaviors and many more. In fact, some people react with negativity to our very appearance. How are we supposed not to understand this?

As it turned out, MJ was offended by a single post on Wrong Planet, in which the author reacted with annoyance to the fact that an autistic child had dropped his ice cream. At first, I thought the poster was annoyed at the father’s statement that the child was autistic, in the sense that we shouldn’t have to explain all our mistakes by autism. But then I read on and figured out that this particular autistic was indeed making a bigoted comment:

Right there…I wanted to smack both him and his son. His son looked to be about 12 years old; and no, for those wondering, he was in no way low functioning; he was at the functioning level I was at age 12; definitely HFA. Now, I know we have lousy coordination skills, but geez….he couldn’t hold a freakin’ cup of ice cream? And he had to use Autism as the reason for it? I found that very insulting; and no, I didn’t say “so am I”..it wouldn’t have been professional. 

Well, that is elitist, exclusionist, prejudiced and offensive. I’m not currently active on Wrong Planet, but if I’d seen the original post, I’d certainly have called out the author on their ableism.

But then again, is this a matter of understanding autism, in the sense that Asperger’s is somehow different and “Aspies” don’t understand “real” autistics’ struggles? We do not know what the poster’s formal diagnosis is (or if they even have one). Mine is Asperger’s. I could drop my ice cream, and I am 23. This is not about understanding autism. This is about looking beyond the narrow scope of one’s own experience to see that someone else might be different from oneself.

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