“Stop Whining!”: The Operant Approach to Pain Behavior

When reading my health psychology textbook, I came across something called the operant approach to treating pain. Well, more correctly, the operant approach treats pain behaviors. It utilizes a system of rewards and extinction (ignoring unwanted behavior) to lessen a patient’s pain behaviors, such as complaining of pain, refusing to perform physical activity, etc.

In some ways, I can see how the operant approach is useful, for example when someone’s pain behaviors interfere with physical rehabilitation. The example given in the textbook involved a young girl who refused to put on a splint by displaying pain behavior and was “rewarded” for this behavior by attention from the nurses. The refusing to put on a splint of course interfered with her recovery. In this sense, I can see how ignoring pain behaviors and rewarding appropriate behavior, such as putting on the splint, can be helpful.

However, the operant approach has a risk that wasn’t mentioned in my textbook, in that pain behavior has a function other than getting secondary gains such as attention or getting out of unpleasant activities. Pain behavior, especially in people who have limited abilities – the patient in the example was three-years-old -, can signal to other people that the expectations set for them are too high. After all, initially at least, someone exhibits pain behavior because they are, oh duh, in pain, not because they want to get out of unpleasant activities or get attention. And, unlike cognitive or other behavioral approaches such as relaxation, it was not said that the operant approach actually reduces pain, which may however be assumed if the person stops communicating that they are in pain.

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My Truth on Dissociation and Childhood Trauma

In my previous post, I discussed whether I’m exaggerating the effects of my traumatic experiences. This is a common theme for survivors of trauma. Often, we’re either told or think ourselves that we exaggerate or make stuff up. When dissociative identity disorder complicates the matter, this is even worse.

Some people deny that DID even exists, and believe it is created by unethical therapists. Other people diagnose it quite quickly or believe it’s significantly underdiagnosed. My opinion is somewhere in between, and I draw it from my own experience. I knew I was multiple for almost ten years before coming out to my current psychologist. I’d never seen a therapist when I realized I was multiple. I didn’t know I lost time, and, hence, didn’t believe I had DID, but I was told by my boyfriend that I couldn’t remember stuff when I switched some of the time back in 2009, before I’d come out. Consequently, I believe my multiplicity is real, whether it can be objectified or not

It is quite likely that an implicit memory test would reveal most, if not all, dissociators do know what their alters learned. In fact, there is research to this effect with a small group of DID sufferers. It is also possible – another research study that I forgot the reference to, claims this -, that time loss in DID is “simulated”, in that people score below chance level on a recognition task. I put “simulated” between scare quotes, because it is not a deliberate action, but possibly some kind of metacognitive problem.

All of this does not mean that DID is not real to the person who experiences it. And even if the multiplicity had been created by a bad therapist, that doesn’t mean the trauma memory has. Childhood trauma is very real and likely not recognized enough. Multiplicity is very real to the person who is multiple. Whether time loss can be objectified or not, it is real to the person who experiences it. Denying these things may look good for a legal psychologist like Willem Wagenaar – whom I otherwise hold in high esteem, by the way -, but it deeply affects survivors of childhood trauma, who’ve often lived their lives being told their truth is a lie.

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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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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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PTSD in People with Intellectual Disabilities

When searching for studies on post-traumatic symptoms, I came across an interesting paper on PTSD among individuals with an intellectual disability (ID. This study is the first systematic review of prevalence, assessment and treatment of PTSD in people with ID.

There are several reasons why people with intellectual disabilities are more susceptible to PTSD than the general population. Firstly, they are more likely to experience traumatic events, such as sexual or physical abuse. They are also more likely to experience negative life events, such as serious illness or injury. Secondly, higher intelligence is associated with better ability to avoid traumatization and to cope with its consequences. Therefore, people with ID may have a lower threshold for PTSD. Thirdly, people with ID are more likely to experience early separations from primary caregivers, hence putting them even more at risk of traumatization. Lastly, the recognition of oneself as disabled may be traumatizing to some individuals. For these reasons, there is an elevated rate of PTSD among people with ID. The literature review found four articles discussing prevalence of PTSD among those with ID. However, all studies were conducted on people referred for treatment who had gone through at least one traumatic event. Studies based on a large, heterogenous sample were lacking. Prevalence rates of PTSD varied from 5% – the prevalence among the general population -, to 60%.

Assessment of PTSD is difficult among individuals with ID, because these people tend to display different symptoms from people with normal intelligence. The Diagnostic Manual-Intellectual Disability (DM-ID, 2007), which is an adaptation of the DSM for assessing individuals with ID, has adapted PTSD criteria for people with mild to moderate ID on the one hand and severe or profound ID on the other. There are also some good instruments for measuring anxiety among people with ID, but these are not specific for PTSD.

The assessment of the traumatic event itself poses problems, as caregivers are not generally aware of a person’s trauma history or may not recognize traumatic events. Furthermore, what may not be traumatic to the average person – for example, a move arranged by others -, may be traumatic to someone with an intellectual disability.

Several treatments are recommended for PTSD in individuals with ID, but the evidence base is small. Firstly, a thorough medical evaluation is recommended, because of the high comorbidity with medical disorders. Psychopharmacology is discussed, but specific research on medication intervention for this population, is absent.

The second treatment approach focuses on changing the environment to eliminate frightening cues. Training and support of caregivers to teach them appropriate responses to PTSD symptoms, is also mentioned. This is particularly relevant for those with lower levels of intelligence.

Lastly, psychotherapy can be useful for the treatment of PTSD. There is clinical support for the use of cognitive-behavioral therapy (CBT) in people with mild ID. The techniques reported on were exposure therapy and imaginary rehearsal therapy. Two case reports were also found on the use of EMDR for PTSD among individuals with mild ID. In all therapeutic approaches described, modifications were made for the clients’ disabilities.

Reference

Mevissen L., De Jongh A. (2010), PTSD and Its Treatment in People with Intellectual Disabilities: A Review of the Literature. Clinical Psychology Review, 30(3):308-316. DOI: 10.1016/j.cpr.2009.12.005.

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What Is EMDR and How Accessible Is It?

Eye Movement Desentization and Reprocessing (EMDR) was initially developed as a treatment for PTSD. It was thought that the eye movements would simulate REM sleep, thereby enabling the person to reprocess the trauma. Now, however, the eye movements are not so important anymore. What is important is the bilateral stimulation of the brain with a distracting stimulus. How exactly this works to reprocess traumatic events, is unknown, so it may be that further changes will occur to the treatment. However, as eye movements are not important, the treatment is accessible to people who are blind: they will wear headphones that make a sound in each ear. Deaf people can follow a light beam with their eyes (the original EMDR), and tactile stimulation – a pat on each knee – is even possible.

EMDR works as follows: you imagine the traumatic event, complete with what you felt and sensed during this event. Most people, including me, will have images of the traumatic event, but it is also possible to just feel sensations in your body. A combination of different emotions ans sensations is also possible. For example, along with the images for me come physical pain and anxiety. As you focus on the traumatic event, you will hear, see, or feel the distracting stimulus. After a minute or so, you will take a break and report to the therapist what you sensed during the EMDR and what you are sensing now. Then, you will be asked to focus on that and the EMDR begins again.

EMDR has also been found effective for phobias and panic disorder. In that case, you will be asked to focus on a time when you were anxious, and the rest will be as described above.

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CBT Improves Anxiety, Daily Living Skills in Autistics

In children with autism spectrum disorders, 30 to 80% have a comorbid anxiety disorder. Cognitive behavioral therapy is one evidence-based treatment for anxiety, but was hardly studied in autistics. In 2009, Wood et al. carried out a randomized, controlled study of a modified form of family-focused cognitive behavioral therapy in the treatment of anxiety in children with autism spectrum disorders.

The CBT program was expanded to include a module in social skills training, whereby parents and teachers were taught to teach the children social skills, so that in vivo exposure could take place immediately. This was done to optimize generalization from therapy to real life. Children and parents were also trained in adaptive skills. Particularly, parents were motivated to reinforce children’s independence, and children were motivated to learn self-help skills. Lastly, children’s special interests and stereotypies were used in therapy. Firstly, they were used to enhance motivation, such as as rewards, or to enhance comprehension of the therapy, such as by using the special interest as an example. For example, if a child was interested in a particular cartoon character, this character’s thoughts and feelings in fearful situations were discussed. However, later in treatment, children were also taught to suppress their special interests and stereotypies, with the rationale that those interfere with social inclusion.

Beyond these extensions, a standard CBT protocol was followed that helps children identify fear-provoking thoughts and teaches them cognitive restructuring. I missed a module on connecting thought to feeling. As a person who has anxiety, cognitive therapy consistently fails me because I can’t identify the thoughts that lead to anxiety.

Families were randomly assigned to an immediate treatment group and a waiting list condition. Evaluators were blind to group assignment. The treatment was effective as judged by standard measures of clinical outcome. Both global clinical impression as well as the children’s diagnosable anxiety disorders, improved in the immediate treatment group, to the point where half of the treatment group remained anxiety-free for three months post-treatment.

In a further study, Drahota et al. (in press) investigated the effects of this CBT program on the autistic children’s daily living skills. As I said, the original program creators had incorporated training in self-help skills into the CBT program. It seemed this training was particularly motivational, which seems a bit odd to me given that children with autism may have genuine deficits in daily living skills.

The Drahota et al. study starts out, annoyingly, by reinforcing the stereotype that parental over-involvement is the problem for autistics with poor self-help skills. This may’ve been the case in this particular group, but not all autistics with poor daily living skills are spoiled brats.

Children’s daily living skills were assessed using the daily living subscale of the Vineland Adaptive Behavior Scales (VABS). Parental intrusiveness in children’s self-care was also assessed. After the CBT treatment, children’s daily living skills improved and parental over-protection decreased significantly as compared to the waiting list condition. This was correlated with a decrease in anxiety. With regard to daily living skills, however, the improvement was statistically significant, but may not be clinically significant, because the children remained significantly delayed. It is questioned whether a longer or more intensive training program would yield better results or whether autistic children simply hit a developmental wall.

References

Drahota A, Wood JJ, Sze KM, Van Dyke M (in press), Effects of Cognitive Behavioral Therapy on Daily Living Skills in Children with High-Functioning Autism and Concurrent Anxiety Disorders. Journal of Autism and Developmental Disorders. Published online: May 28, 2010. DOI: 10.1007/s10803-010-1037-4.

Wood JJ, Drahota A, Sze K, Har K, Chiu A, Langer, DA (2009), Cognitive behavioral therapy for anxiety in children with autism spectrum disorders: A randomized, controlled trial. Journal of Child Psychology and Psychiatry, 50(3):224-234. DOI: 10.1111/j.1469-7610.2008.01948.x

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Should Mental Health Professionals Google Their Clients?

Recently, some discussion has sprung up in the Netherlands around whether psychiatrists or psychologists should google their patients. The Dutch Association of Psychiatry (NVVP) says that information that has been put on the Internet, is public, so anyone should be able to view it, including psychiatrists. On the other hand, the Netherlands Institute for Psychologists (NIP) disapproves of the googling of patients by psychologists, because it can impact the treatment relationship negatively. It is also reasoned that the information relevan to treatment should come from the patient directly.

That is where it gets a little troubling: some patients simply do not or cannot give the information relevant to their treatment. Googling without consent is, in my opinion, not productive in this case, but information gained elsewhere, such as online, may sometimes help in this case. For one thing, the fact that my high school tutor read my online journal back in 2004 opened the doors to my eventually seeking help for my issues. I would never have been able to communicate these issues any other way.

On the other hand, does the end justify the means? Six years later, I feel that both of us overstepped our boundaries by sharing my online journal, because that way, he was dragged into emotional issues no teacher should have to help a student deal with. To be specific, he was the first who knew that I have insiders. It was not his job to deal with that, and the fact that he tried anyway, had some negative consequences. Maybe mental health professionls have a broader array of issues that is their job to help clients deal with, but still, boundaries can be overstepped here.

Currently, I give professionals consent to read my blog. I most likely wouldn’t have odne so if I’d still written as personal a journal as I did in 2004, because of the fear that we would again overstep our boundaries. Then again, the fact that the information that is on the Internet, is public, is the reason I avoid writing highly personal things on the Internet these days. In so far, I agree with the NVVP. However, I think most people are more careful, but a few are less careful than I am, and people with mental illness are especially vulnerable in this respect.

A last issue is of course the fact that the information people put online, no matter how careful or careless they are, was not intended fo rprofessionals to read, and may therefore be misinterpreted. Information may also be outdated or inaccurate, and most likely will be irrelevant to treatment. Is it ethical for a mental health professional to know about a patient’s sex life, what they ate for lunch today, or what they just spent E10,000 on, when there are no other indications for sexual issues, eating disorders, or a spending problem?

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Oregon Governor Vetoes Bill Granting Psychologists Prescription Privileges

There is some good news for people, like me, who feel strongly about the protection of patients from unwarranted drug prescriptions: according to Lunatic Fringe, Oregon governor Kulogonski vetoed a bill that would allow psychologists to prescribe psychiatric drugs. The bill would’ve allowed clinical psychologists to prescribe drugs if they cooperated with a psychiatrist. It did not specify how far this cooperation had to go. The reasoning was that there is a shortage of psychiatrists in Oregon. Now that may be true, but it does not mean psychologists suddenly got the training required to prescribe medications. A basic understanding of psychopharmacology, which psychologists generally do have – at least if they were trained not too long ago -, is simply not enough to monitor the medical effects of these drugs. Not every doctor is a medical doctor, after all, even if they trained in an allied profession.

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Psychological Factors Affecting Physical Health Are Not Mental Disorders

In the DSM-V, the effect of psychological factors on physical health, will be acknowledged and reflected in a conditoin tentatively labeled psychological factors affecting medical condition. A number of subdiagnoses are considered, but for now, they will not be included as specific subtypes in the DSM.

Now of course it is a fact that psychological factors impact physical health. Health psychology and behavioral medicine emerged for a reason: the biomedical model of disease simply doesn’t work. Psychiatrists make up a large portion of those involved in behavioral medicine, and this is not in itself bad, since there is a possible link between mental and physical illness.

However, that emphatically does not turn psychological factors that impact physical health, into psychiatric disorders. The category of psychological factors being included, is rather broad – including maladaptive health behaviors, stress, personality traits, psychological symptoms, etc. -, so everyone probably has one of them. The proposed ways in which these psychological factors can impact the medical condition, are also rather diverse:

1. The factors have influenced the course of the general medical condition as shown by a close temporal association between the psychological factors and the development or exacerbation of, or delayed recovery from, the general medical condition;
2. The factors (e.g. poor adherence) interfere with the treatment of the general medical condition;
3. the factors constitute additional health risks for the individual;
4. the factors influence physiology to precipitate or exacerbate symptoms of the general medical condition.

The proposed severity rating includes at the mild end the situation where the psychological factors only increase the risk of the condition. Does this mean any smoker, fat person, or person under high stress will get a diagnosis of mental illness the day they get a heart attack?

Again, I am not saying that smoking, obesity and high stress do not increase the risk of physical illness. I am also not saying that the impact personality, psychological symptoms, and health behaviors have on physical disease, should not be studied. Neither am I saying that counseling should not be offered to those who wish to overcome the psychological issues that affect their medical condition. However, a psychologist or counselor would just be fine for that, and a consumer of counseling services should not have to be in a psychiatric handbook. Inclusion in the DSM of the psychological factors influencing medical illnesses will likely just increase the shame and blame associated with a large number of medical conditions. People whose illnesses are possibly influenced by psychological factors, people who engage in unhealthful behaviors, and people with certain characteristics, such as obesity, regardless of health or behavior, bear enough stigma already.

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