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The Mystery of the Undisclosed Diagnosis

  • Posted on November 12, 2014 at 10:00 AM

My husband Mark has been in and out of mental health treatment (outpatient services for the most part) for bi-polar disorder, a.k.a. manic-depression, since he was a teenager. For much of this time, he has received his psychiatric services from the same doctor who, for the most part, simply provided him with medication. These meds have changed a few times over the years, but for the most part he responds fairly well to the medication.

Recently, he noticed that his pill bottle described “schizophrenia” as the reason for the prescription. This was odd, because he’d never been told he was schizophrenic and what he experiences doesn’t seem like schizophrenia at all. But his doctor is now retired and he won’t be seeing the nurse practitioner who took her place (temporarily) for a while, so he brought up this “new diagnosis” to his therapist. His therapist accessed his records and, as best he can tell, the “schizophrenia diagnosis” is nothing more than a clerical error. But in refuting the diagnosis that Mark had seen on his pill bottle, the psychologist discovered something interesting.

Mark’s records included an official diagnosis from his long-time psychiatrist that Mark had never been told about. Apparently, Mark has an official diagnosis of Asperger’s syndrome, as well as bi-polar. This isn’t a surprise in the sense that we disagree with the diagnosis—we’ve long suspected that if Mark ever wanted to go through the same diagnostic process we went through with our children, then he’d be diagnosed with Asperger’s syndrome. This is a surprise because he’d received the diagnosis without that process and without ever being told that he’d gotten it.

In all fairness, the diagnosis doesn’t change anything. Mark’s primary diagnosis is still bi-polar disorder; that’s the one he needs ongoing treatment for. A secondary diagnosis didn’t change anything with his old psychiatrist, because she’d already been working with Mark’s quirkiness and knew how to handle it, which is why Mark always opted to be under her care when he needed help to manage his mood swings. A secondary diagnosis didn’t change anything with his therapist either, for the same reason. It may help the new people coming on board, but it doesn’t change which medication works with the least side effects nor does it change anything about Mark’s life.

The only thing it does is confirm what we already suspected. Mark is an Aspie. While I don’t quite fit the usual diagnostic criteria, we know that I am, at the very least, adjacent to the autism spectrum myself. Thus, when our genes combined, we created three autistic children. We already knew this!

That being said, it’d be kind of nice to know when one gets a new label slapped on oneself, don’t you think?

Our Hidden History

  • Posted on October 26, 2012 at 8:00 AM

In an effort to prepare for Willy’s appointment with the geneticist, I pulled the major records from all three boys’ medical files. Each packet of documents in these old files corresponds with a story point on the memoir I’m writing, but I hadn’t pulled any of them yet. For a while, I just re-read what had been said and what had been determined. I spent a little longer on Ben’s, because getting an accurate diagnosis was a bit more difficult with him. I thought about the moments and the hardships that had gone along with each of those packets of papers.

Reading them again, I was surprised at the hidden prejudice I saw so clearly. Alex, who is the most severely autistic of my children, was diagnosed with PDD-NOS, not autism. Though his verbal and nonverbal communication delays are extreme, he’s more socially-inclined than expected of an autistic individual. His ability to engage socially is impaired, but his desire to engage socially (with adults) is not. For this reason, he did not meet the criteria of autism.

As time has passed, as their skills have improved, neither Willy nor Ben showed this dramatic decreased desire to socialize that was expected of Alex in order to obtain an autism diagnosis. Their ability to socialize is impaired, and this ability is impaired in some different ways than Alex’s is, but the desire is there and it has always been there with all three boys in one way or another. Just not the “normal” ways.

One thing my husband and I learned early on is that if we wanted to engage our children in a social way, we’d have to do so where they are, which wasn’t where we’d expected them to be and it certainly wasn’t where we were. So, we adapted. With Willy, we were able to adapt the most successfully, because we could understand what motivated him. With Ben, we were able to adapt with moderate success, because we could understand enough of what motivated him to do so. With Alex, we’re still trying to figure out what motivates him. We’re still adapting. He’s still very much where he is, and we have to come to him to make the connection—but sometimes he just seems out of our reach.

The motivation is there, but with such a severe communication disability, we can’t quite make the fully satisfying connection that Alex craves.

The possibility exists that part of the reason that Alex struggles as much as he does is because he’s having seizures that we’ve failed to recognize. Until we saw this neurologist, the possibility of seizures—of Alex having seizures “now,” instead of developing them later—was never mentioned. He was never tested for “hidden” seizures, because we didn’t know that he should be. The more I read about epilepsy, the more I wonder: Is this the missing piece? Is this the key?

We won’t know until after a few more appointments—one for the initial evaluation and one for the video EEG and one for the post-evaluation, and possibly more in between—the first of which has been scheduled for early December.

Flipping back through these packets of information, I read the doctors’ words and there are passages that slap me in the face. These assessments that we endured to get where we are now were wrought with prejudice: Everything about them is underwritten with the assumption that it is wrong to be autistic. And what’s worse, the answers these assessments provided might not even be enough.

Since almost the beginning, I recognized my children as neurologically different or neurodiverse, and yet it’s only within the last few months—with the onset of epilepsy—that I’ve taken any of my boys to a neurologist. Always, it’s been psychologists. When I define autism for publication, I start by referencing the DSM-IV, a psychology manual. Throughout this time I’ve been suspicious of psychology, of the nature of the discipline, of its start with Freud, of its connection to eugenics, of its overzealous classification of “disorder.” And yet, here I am, realizing with not a small bit of guilt, that I’ve been enabling them to define autism for my children, for my family, and even for my writing. I’ve been enabling them to define, despite my resistance, the nature of my children’s being. I’ve been enabling them to set value (rather, lack thereof) on their worth.

I can justify it. The neurologists were always too difficult to get to. The referrals were always for psychologists. The system funneled me in this direction, and to get my boys’ the services and accommodations they needed I had to work within the system. I know why I did what I did.

But it all sounds hollow now. Empty. Mistaken and misguided.

What if, this whole time, Alex was having untreated seizures? What if treating those seizures empowers Alex to make the connections that have so long eluded us all?

Whether that’s true or not, I can’t help but feel that, despite my best efforts, I’ve failed my sons.

Questioning

  • Posted on October 9, 2010 at 3:21 AM

Next week I’ll be addressing the issue of bullying.  I’ve been meaning to do so for weeks, but it’s a complicated and an emotional topic.  So I’ve put it off.

Today, I’ll be putting it off one more time.  Earlier this week I spoke to a counselor regarding a matter I’m not going to discuss.  However, in the process of this discussion the topic of bi-polar disorder came up—in relation to me, not my husband.  I got from this discussion a referral to a psychiatrist, who I saw today.

Fifteen minutes into the conversation the psychiatrist was convinced I was not bi-polar.  In going through her notes and the referral, she determined that a likely point of confusion was my use of “cyclical” to describe my depression.  I used cyclical, because I experience depression in semi-predictable cycles throughout the year.  My depression follows a pattern that allows me to recognize when I’m getting depressed, know that I’ll get un-depressed, and recognize when I’m coming out of the depression.  To me, that implies a cycle. 

Apparently, cyclical means something else to psychologists and psychiatrists.  It means seasonal affective disorder, manic-depression, and other disorders that involve a cycle.  But, unless the cycle of depression is attached to seasonal differences, cyclical depression is not recognized as such—they call it recurrent depression instead.

Thus, the interpretations of the experiences I describe can hinge on a single word.

In discussing what I do with the psychiatrist, I also asked if she was familiar with neurodiversity.  She’d heard about it; she’d read about it.  But her interpretation of whatever she’d read was that neurodiversity was anti-psychology and anti-psychiatry.  Admittedly, some people within the greater neurodiversity community are anti-psychology and anti-psychiatry; but I don’t think that reflects the movement as a whole.

What I think the movement does reflect, however, is the willingness to question the authority and expertise of medical professionals.  I’ve encountered some psychologists who regard this as a personal threat or a personal attack and I’ve encountered some psychologists who welcome the scrutiny.  However, in my limited experience, those who resent it seem to dominate the profession.

Personally, I think it’s important to question all of those in authority, not just those in the medical profession.  Not to do so obstinately or just for the sake of being uncooperative, but to do so because human beings—all human beings—are fallible and so are human constructs, including science (and, yes, religions, too).  We are fallible.  Our authority figures and experts are fallible.  And, unless we’re willing to acknowledge that and question beliefs (including our own), we’re going to be stuck with badness—bad science, bad religion, bad societies.

Luckily, I’m familiar enough with both myself and bi-polar disorder that I was highly skeptical of this hypothesis.  I brought that skepticism with me to my appointment today, and found a doctor who was willing to listen.  That’s good.  But I can imagine a situation where expressions of skepticism are unlikely or where the doctor isn’t willing to listen.  I know both happen.  And on such a small thing as two different interpretations of a word a wrong diagnosis can be made when all other evidence indicates that the diagnosis is wrong.

And we’re not supposed to question that?  I just can’t buy that.

Asking the Right Questions

  • Posted on February 10, 2010 at 2:55 PM

Alex, who is predominantly nonverbal, has been behaving in a way that indicates that bi-polar disorder or mania may be an appropriate co-label to apply to him.  While Alex’s behavior is very different from Mark’s, who has a diagnosis of bi-polar disorder, there are certain similarities.  After discussing the matter with one of the few psychologists whose opinion I value and trust, I decided that a mental health assessment may provide useful insights and possible strategies for helping Alex be more comfortable with himself and his environment.

In pursuit of this assessment, I recently filled out a series of mental health questionnaires.  Clearly these questions were not designed to address a child who is nonverbal at the age of ten, which makes me wonder how effective this assessment process will be.  Furthermore, a lot of the questions involved internal mental processes, which there is no way for me (or the doctors) to really observe.  While I understand there is a certain statistical validity and thoroughness to a set of generic questionnaires, there is also a de-humanizing element to this process.  Considering that I had to go through a thorough series of questionnaires to even get this appointment, it seems somehow inappropriate for their data collection efforts to continue to involve questions that are so poorly tailored to my son.  It makes me wary.  Are they prepared to assess Alex at all, let alone provide me with actionable information in response to that assessment?

Then again, when it comes to psychologists, I worry about that in a more generalized fashion.  My interactions with psychology have left me with a deeply in-grained belief that much of psychology is based on unquestioned, unquestionable biases.  One bias is that “different=bad,” which I reject wholly.  A more subtle bias is that observation of behaviors equips psychologists to explain internal mental processes.  Yet, there is something inherently absurd about this bias.  First, mental processes cannot be observed, unless you’re observing the brain at the time—in which case the issue is separating the many mental processes one is observing in relation to the many behaviors that are occurring.  Second, observation is by its nature subjective.  Most of us only observe what we look for, and sometimes we see things we’re looking for when they’re not really there.  Ironically, this absurdity is made apparent through the study of psychology.

Allow me to illustrate:  If someone were to look at my hands, they might think I’m afraid of germs.  This is a logical conclusion from a psychological perspective, because my hands have sustained (and continue to sustain) physical damage from excessive hand-washing.  I have open crevices in my skin which sometimes bleed.  I have scabs over partially healed crevices.  My hands look far older than their 30 years.  Sometimes my skin is so dry and stiff that it looks like arthritis has stolen their mobility.  A common explanation for such a destructive behavior is a phobia, especially when that behavior coincides with obsessive-compulsive disorder (a diagnosis I have).

And yet, my behaviors have nothing to do with germs.  Unless you’re looking for germ-o-phobia you won’t find any real evidence of it.  In reality, as subjective as my personal reality may be, the damage to my hands is the result of a combination of raising young children and having tactile sensitivities that makes touching anything sticky, tacky, slime, gritty, sandy, flaky—well, the list could go on, but I think you get the point—an adverse experience.  So, sure I wash my hands every time I change a diaper or touch the garbage can or sort dirty clothes or pick up miscellaneous things from the floor.  Sure, I wash my hands whenever I sneeze or blow my nose or go to the bathroom or take out the trash.  These are basic sanitary actions.  What makes it excessive is when I have to wash both my hands all over because the side of my finger touched something tacky, like the glue left behind by a sticker that was stuck one too many times.  Or when I do the same thing, because my hand brushed up against something sticky, like the ring left behind by a juice cup.

Perhaps my behavior isn’t rational.  Perhaps it is compulsive.  But, far too many people have tried to label my behavior, both officially and casually, without understanding it.  Yet, when it comes to people doing this to me, I’m prepared.  I’m a highly introspective person and tend to understand myself quite well.  I know why I wash my hands until they literally bleed.  When others throw their baseless speculations at me, I can flick them off with the little regard they deserve.

I’m much more wary when it comes to my children.  While I think I understand my boys fairly well, I’m also insightful enough to recognize that there is far more I don’t understand.  I don’t know how Brandon really feels about being shuffled between two very different households.  I don’t know why Willy feels so comfortable walking up to complete strangers and starting a conversation.  I don’t know what Alex is trying to do when he colors the same drawing furiously for a half an hour, discarding page after page after page and starting again.  I don’t know why Ben closes a book or stops a video at the same part over and over again, yet seems to like that same book or video so very much.  I don’t know these things, and I don’t think their behavior alone can provide genuine insights into the behaviors themselves.  To truly understand these emotions and these actions and all that goes on in-between you have to understand the experience of the individual.  The only way I really know to do that is through communication, but even that is imperfect.  What the other says and what I interpret are and always will be two entirely different things, and this isn’t because I am specifically flawed—all of humankind faces the same limitation.  What I understand and what is meant may be close; my understanding may be sufficient, but these two separate experiences are always going to be at least slightly different.  More importantly, they can be substantially different.

So, as I prepare myself for this meeting I have tomorrow, I remind myself that they may have a greater understanding of the discipline of psychology than I, but I have a better understanding of my child and an appreciation of the limits of that understanding.  For a child who struggles so much to communicate, it may seem natural to rely on interpreting his behaviors to gain insights to his internal processes.  But, these insights are far from perfect and that must never be forgotten.  Last, but not least, as we seek to understand Alex and to help him, we must remember to ask the right questions, because the questions we ask color the experience for each of us.

The Relevance of Self-Efficacy

  • Posted on January 29, 2010 at 3:05 AM

Another thought spurred by my studies starts with this definition:

Self-efficacy refers to an individual’s convictions (or confidence) about his or her abilities to mobilize the motivation, cognitive resources, and course of action needed to successfully execute a specific task within a given context.

The Fundamentals of Organizational Behavior, 4th ed., by Andrew J. DuBrin, 2007, pg. 126

The chapter is on motivation, particularly as it is applied in work situations.  It relies heavily on psychology.  Two particular applications of this definition of self-efficacy stood out for me.

First, there is expectancy theory.  Basically with expectancy theory, the idea is that people will be highly motivated if they have high expectancy, high instrumentality, and high valence.  Expectancy involves the belief that more effort will improve performance.  Instrumentality involves the belief that improved performance will improve the outcome.  Valence involves the belief that the outcome is worth the effort.  If someone does not expect that their effort will improve their performance, they’re not likely to try harder.  If someone does not believe performance is instrumental in getting the results they want, they’re not likely to perform.  If someone does not value the outcome, they’re not likely to care enough to try.

(Realize that each of these high/low values are subjective, meaning they rely on individual belief not independent reality.  For example, trying harder may really lead to doing better, but if I don’t believe that it will, I’m not likely to try harder and so I won’t do better.  Therefore, belief is a very powerful, especially belief in oneself.)

One of the things that struck me as I was studying this concept was how it serves, at least in part, to explain some of the issues in relation to autism.  So often it is easier to assume someone with disabilities, especially cognitive disabilities, cannot do something.  This assumption is so easy that people often do not stop to question why they don’t do something.  It’s like the possibility that the individual does not choose to perform is never even considered.

The first time I ran smack into this concept was when I was concerned that Alex could not catch.  I understood, at least to some degree, the complexity of the catching action and its association with later skills development.  So, that Alex couldn’t catch was something that deserved attention.  Sitting with the physical therapist, I learned the distinction between can’t catch and doesn’t catch.  Specifically, if a child does not catch a ball, first you have to discern whether the child has any interest in the ball; if not, you must then find something the child does have an interest in.  Alex can rarely be induced to catch a ball, but if you throw a Veggie Tales plush toy at him he’ll probably catch it.  Unfortunately, the perspective of this therapist seems rather rare, but I’m certainly glad she shared it with me.

The next relevant way this concept of self-efficacy is used is in social learning theory.  Social learning theory is the process of learning through observing and mimicking others.  Many parents of young children with autism will recognize the significance of this, even if they’ve never heard the term.  It was drilled in me when the boys were young that children with autism have to be taught to mimic so that they can learn.  But, in looking closer at the concept through its business applications, once again the issues of expectancy theory come into play.  Expectancy (the belief that more effort will lead to improved performance), instrumentality (the belief that improved performance will lead to a better outcome), and valence (the level of desire for the outcome) are key aspects of social learning.  Some of the things that teachers and therapists are bent on teaching my children are of no interest to them.  The valence simply isn’t there.  Yet, if they watch me use the VCR or the computer, they pick those skills up quick.  And, yes, it is through social learning—observing and mimicking desired behaviors.

And now, we’re back to self-efficacy.  While the significance of instrumentality and valence cannot be ignored (yet seems to be ignored more often than not), when teaching people with autism self-efficacy has its own relevance.  Self-efficacy (belief in one’s own abilities) is a component of self-esteem (which also includes the person’s belief that he or she is worthy of happiness, also called self-respect).  Having fundamentally different neurological processes, and growing up learning in a million different ways (some subtle, some quite obvious) that your neurological processes are inferior, is going to affect any person’s self-efficacy and self-respect.  Yet, when attaining a new skill expectancy is essential, which requires self-efficacy.  If one has high self-efficacy, then one is more likely to believe that more effort will improve performance.  If one has low self-efficacy, then one is more likely to believe that more effort will not improve performance.  If one’s expectancy is low enough, then the individual will not even try to perform.

And it all comes back together.  If we insist on trying to teach people a task for which they have low instrumentality and/or low valence without first successfully raising their perceptions of instrumentality and/or valence—then claim that since they did not learn the task they must try harder or are incapable—we are eroding (and eventually destroying) that individual’s expectancy, self-efficacy, and self-esteem.  In the long-run, this erosion creates an environment of systemic disempowerment.  Essentially, we are teaching people they can’t, because we are trying to force them to learn something for which they have no interest and for which we create no sense of value.  That “can’t” attitude further pervades their lives.

The more I learn about “normal” psychology the more I believe that the worse thing psychologists ever did was divorce “abnormal” psychology from “normal” psychology.  I suspect if psychologists opened their minds to the possibility that the assumption that “abnormal = bad” is wrong, the more they would be able to see how “normal” psychology relates to their own ineffectiveness.  Perhaps then more people would get genuine help that repairs and re-builds their senses of expectancy, self-efficacy, and self-esteem, which would lead to improved performance on the behaviors they value.