A revelation about being Asperger / Chronic Pain

I had a bad day today. What does that mean? Pain.

I had never looked at bad days as being identifiable in terms of pain. I see “problems to solve” as the source of discontent, disruption, a bad mood – the badness in a bad day. I experience physical pain (sometimes intense) at the same time; maybe a meltdown. How could I not connect the two?

Today I could identify that bad days are not discrete events, but wave tops of continuous, chronic pain. I could suddenly see that this has been the pattern, since childhood. This was a connection I had never before made. This connection must be shown visually.

— Such that the wave crest is maximum pain (a meltdown); the wave trough, is the absence of pain: the path of the wave describes chronic pain. I didn’t see the continuous nature of pain because I ignore (am unaware of, don’t feel) the pain between the peaks and troughs.  As is often said of Asperger types, there is pain we don’t feel; there is pain we do feel. Our response to pain is “eccentric.” There is a “threshold” at work in this experience of pain.

Something else is familiar about the “highs and lows” of this wave: Years ago I was diagnosed bipolar. Since the discovery that I’m Asperger, I have suspected that bipolar was a mistaken diagnosis. Could this “wave pattern” of chronic pain (stress induced?) “look like” bipolar mood swings and engender the belief that bipolar is co-morbid with being Asperger? My proposed “Asperger Wave” is actually the inverse of bipolar swings: The peak is extreme pain, the valley is pleasure.

The next question is, What is the origin of chronic pain? 

I’m off to consult the Wizard… 


Effective Treatments for Anxiety / Simple or Complex?

Department of Psychology Community Clinic
University of North Carolina at Chapel Hill


(My comments)

Effective Treatments for Anxiety There are two types of treatments that have been shown in numerous research studies to reduce the symptoms of anxiety disorders: (a) certain types of medications, and (b) a certain type of psychological treatment called cognitive-behavioral therapy (or “CBT” for short). This page briefly reviews the pros and cons of each type of treatment, and then focuses on CBT, which is our specialty at the ASDC. (Note that medications are far less costly to the patient; CBT requires many weeks of specialized psychiatric treatment. $$$$) 

Medications for Anxiety: Pros and Cons

The major classes of medication that have been well-researched and shown to be effective in reducing anxiety disorder symptoms are the selective serotonin reuptake inhibitors (SSRIs; e.g., Paxil), tricyclic antidepressants (e.g., Anafranil), Monoamine Oxidase Inhibitors (MAOIs; e.g., Nardil), and benzodiazepines (e.g., Klonopin).

The advantages of using medications to treat anxiety disorders include:

  • They are often effective– up to 50% of people who use these medicines experience at least some symptom relief.
  • They are easy to obtain– a physician (often a psychiatrist) prescribes them, and the medicine is widely available.
  • They are easy to use– the pill does all of the work inside your body.

The disadvantages of using medication for anxiety include:

  • Not everyone responds well– 50% of people who take these medicines do not respond.
  • Symptom reduction is generally moderate– the average improvement rate is between 20% and 40%.
  • Side effects are common– although they are generally mild and can be managed fairly well.
  • You must remain on the medication over the long-term– usually, symptoms return if the medication is stopped.
CBT for Anxiety: Pros and Cons

CBT is a set of psychological treatment techniques that view the patient/client as an active participant in his or her own treatment. It is seen as beneficial if the patient understands exactly what is involved in treatment, and the ideas behind why these particular treatment techniques are used. The techniques used in CBT have been tested in hundreds of studies with thousands of people who suffer from anxiety problems. The results of these studies (Which studies? One is expected to believe that “surveys”, anecdotal reports and self-reporting are qualitative science) show that CBT is often very effective (weasel words) in reducing anxiety and related problems. A full description of CBT appears further below.

The advantages of CBT for treating anxiety include:

  • It is a highly effective short-term treatment– research indicates that over 60% of those who undergo CBT experience substantial improvements in anxiety symptoms.
  • It is the best long-term treatment– CBT teaches you skills that no one can ever take away from you.
  • CBT is brief– typically, significant improvement is obtained in 12 to 20 treatment sessions.

The disadvantages of CBT include:

  • It is hard work– CBT requires you to learn and practice new skills that can be challenging.
  • It requires you to face your fears– one component of most CBT interventions includes gradually confronting the situations that provoke anxiety. This means you are likely to experience anxiety as a “side effect” of treatment.
  • It is difficult to find therapists with expertise– relatively few psychotherapists have the training and experience to qualify them as experts in CBT.

What can you expect if you undergo CBT for an anxiety problem…

CBT is based on the idea that anxiety problems involve maladaptive patterns of thinking and behavior. Thinking patterns in anxiety usually include the tendency to overestimate the probability and severity of negative outcomes. This type of thinking leads to feelings of anxiety. Behavioral patterns in anxiety disorders include avoidance, compulsive rituals, and other anxiety-reduction strategies (“safety behaviors”). These behaviors serve as an escape from anxious situations, yet they also prevent the person from finding out that these situations are not nearly as dangerous as they had thought. (Here is the crux of Asperger anxiety: we repeatedly experience dangerous social situations (ostracism, bullying, sensory overload: meltdowns) for which the appropriate reaction is fear and anxiety –  at least some of our anxiety is “real and healthy” and not “overreaction – imaginary or learned” as is assumed by neurotypical observers.) Therefore, the person gets stuck performing the maladaptive behaviors which maintain their fears. In CBT, the person learns new ways of thinking and behaving in situations which create anxiety so that he or she can realize that such situations are not dangerous.

The first step in CBT involves getting a thorough history of the person’s life experiences and psychological functioning, and then assessing whether a medical or psychiatric consult is necessary. A medical consult is often helpful to rule out possible physical/medical causes for anxiety symptoms, and a psychiatric consult, though arranged only occasionally, is especially important for persons who are so impaired by their anxiety symptoms that they may not be able to utilize therapy effectively unless assisted by medication.

Next, the person learns about the nature and experience of anxiety and of his or her particular problem with anxiety. This includes learning how to better observe, record, and report anxiety-related triggers, thoughts, feelings, and behaviors. All of this helps the therapist gain a clearer understanding of the person’s specific anxiety problems. The better we understand the specific way an anxiety disorder is experienced by a patient, the better able we are to design an effective cognitive-behavioral intervention. A “road map” of the person’s symptoms is then devised; along with a treatment plan that specifies the specific thinking and behavioral habits to be modified through therapy, and which techniques will be used.

Cognitive Restructuring is a technique for identifying and challenging maladaptive thinking styles that fuel anxiety. In essence, one learns to ask, “What am I saying to myself about this situation that is making me feel so anxious?” Once these thoughts are identified, the person learns how to critically analyze the validity of these thoughts, and develop a replacement set of thoughts based on a more rational (evidence-based) appraisal of the situation. Unlike the power of positive thinking which essentially focuses on having a person tell him or herself, “Everything will be OK“– cognitive restructuring is based on the power of critical or logical thinking. (This may appeal to Asperger types, since it utilizes our native strengths. The problem here, as stated above, is that CBT requires a QUALIFIED therapist! “Any old therapist” may not be skilled in critical thinking and logical analysis)  As with all skills developed in CBT, cognitive restructuring is learned in the treatment sessions and practiced by the patient on his or her own.

The next stage in CBT is usually one or more variations of therapeutic exposure during which the person practices facing his or her fears. Therapeutic exposure (as opposed to everyday exposure that some people have) is carried out carefully and under the guidance of a therapist. It is usually gradual, meaning that exposure begins with facing easier situations, working up to more challenging ones. The person also practices self-supervised exposure tasks between treatment sessions.

Although exposure therapy seems difficult, when armed with a full understanding of the problem and cognitive restructuring techniques, the person is well-prepared to face these fears. By developing a hierarchy, or list of fears, the patient challenges him or herself only a little at a time, beginning with the least challenging fears, and building up strength and self- confidence, moving upwards, to more feared situations. Finally, long-term maintenance of gains, relapse prevention, and “lapse response protocols,” or the ways in which to deal with symptoms which may re-emerge, are reviewed.

As you can see by the procedure described above, the focus of treatment is on the reduction and even elimination of anxiety symptoms. (If medication accomplishes this – good!) However, in addition, throughout therapy, additional issues are often addressed. If the initial assessment reveals specific trauma or issues related to family history, these issues may be incorporated into the CBT. Comorbid conditions may exist as problems separate but often related to the anxiety condition, most commonly depression and/or substance abuse. These and other comorbid conditions can also be addressed in treatment as needed. Issues around self- esteem and interpersonal functioning almost always are addressed as part of treatment. The development of, and/or improvement in, the support systems outside of therapy is promoted. Finally, the respect, support, and encouragement in the therapy relationship itself is crucial to the success of treatment.

You can learn more about CBT from the Association for Behavioral and Cognitive Therapy


Anecdotal contribution: From age 4 or so, when I was able to walk, rather than be carried, I suffered “meltdowns” in crowds: people crushed together, competing types and sources of noise; smells, jostling – produced sensory overload and disorientation, and no avenue of escape. I feared getting lost. I was essentially lost; unable to make sense of what was going on around me and to orient myself in the environment.

It became a problem: as a child grows older, he or she is confronted by more situations in which the “conditions” that produce meltdowns increase. Of course, “anticipation” of stress in reaction to social situations that are perfectly normal for neurotypicals, becomes a focus – a possible meltdown is no joke. It’s terrifying, and the “hysteria” that often characterizes the neurotypical response (anger, punishment, shaming) makes a meltdown something to be avoided.

The typical answer for neurotypical teachers, doctors, and other adults was outrage and punishment, with no “empathy” or attempt at understanding what a child might be experiencing. The typical advice was a crude form of CBT: make the child confront the situations that bring on the “tantrum”. Punish her for having a tantrum. Repeat until the disobedient child “gets it” and can “survive” any and all social expectations.

It makes as much sense as forcing a child to walk on a broken leg, in order to “fix” the broken leg. 

All that this attitude accomplished was the desire in me to escape being repeatedly traumatized. 

Get Personal / Growing Up before Asperger’s was a diagnosis


The following is from Raw Days, a manuscript written long before I was finally  diagnosed Asperger.


I was born in Dayton, Ohio, in 1950.

I have no direct memory of that city. When I was three, my father accepted a job in Chicago. My mother, brother, and I went to stay with relatives in Pennsylvania until our new house was ready. My mother’s parents lived in a four room apartment above a hardware store that was accessed from the street by a staircase. The door to the stairs had a purple glass knob and I told myself that if I became lost I could find my way home by looking for that knob. My brother stayed outside town with an aunt and uncle who had a boy his age. I have forgotten where my mother stayed, but I believe it was with one of her two brothers, who were both married to nurses. I was alone with my grandparents.

My grandmother had been brought to this country as a baby. She had never seen her birthplace, but she kept afternoon tea like the other Welsh people in town. A plastic cloth printed to look like white lace covered an oak table in the front room. In the center she placed a ruby red drinking glass that held teaspoons, a detail that was forgotten until years later when I was setting the table in my own apartment and sensed that something was missing, something that ought to be there.

At tea time I was allowed to choose from my grandmother’s collection of gilt dime- store tea cups. These gaudy acquisitions were displayed on painted corner shelves along with capacious tea pots. Every afternoon we ate bread and butter with jam and sharp white cheddar cheese, which she melted on a plate on the gas stove, and slid onto pieces of toast. My grandmother ate little else but bread and jam and cheese, which she converted into to two hundred pounds of cool fluffy flesh.

My grandfather was a shadow in comparison, but he was important. A small fragile man when I knew him, he had labored in tin mills to support the family, but other than criticism, he received little thanks for his labor from his children. The intense heat of the mill rollers caused severe muscle cramps due to sodium loss, and later near-blindness from cataracts. His health was ruined. He still worked at the time I lived with them, but I don’t know where. My mother seemed to hate him. She and my grandmother ignored him except to berate him. I think that his ill treatment on their part broke my heart, but my mother claimed that she had reason to hate him, which she never revealed.

The apartment over the hardware store had but one bedroom. It barely accommodated a double bed, so I slept in the front room on two chairs pushed together to make a rough cradle. One of the chairs was covered in blue fabric woven with small flowers, and the arms and headrest had become slick from use. The other chair was one of the straight back chairs from the oak kitchen set. My grandfather awoke before daylight each morning to get ready for work. I got up with him and watched everything he did: how he made lather in his shaving mug and shaved his grizzled face in the streaky bathroom mirror; how he made us tea, placing a chair near the front windows so that we could watch as sunlight crept along the empty street. As I remember it, we inhabited an Edward Hopper painting.

Our family left for Chicago in early winter.

My mother was a nervous woman and as artificial as anyone I’ve known, not as a contrivance, but because it held her together, like the horrid rubber girdle she always wore, or her hairspray, silly hats and frigid smile. It was her mission to quash the natural female in me, and her efforts caused constant friction between us. I must be forced into beauty pageant dresses even though other perfectly suitable styles existed. I must force myself to speak in a higher voice because a few phone callers mistook me for a boy, which she found shameful. When I balked at her demands to betray myself, she would accuse me of having no feelings, no ability to love, no sympathy or understanding for what real human beings (like her) felt.

By my mid-twenties an astounding thing had occurred: success. I was on my own, had a career in advertising and owned my own house in a western city. My parents came to visit, so I showed them samples of my work, which they had never seen or asked to see, and which they viewed in silence. My father headed into the kitchen for coffee; my mother took the opportunity to ask how much money I made. Thinking that she would be proud of me, I told her.

Her face boiled angry red and her body shook. She stared straight into my eyes and said, “What kind of world is it when someone like you can make more money than a good man like your father?” I admit to total shock; I was ‘done with’ my mother after this revelation, which did teach me, once and for all, that predators often hide in the guise of victims.

I loved my father immensely, despite being frightened when he shared certain experiences that had to do with his mental powers, which included mind control and telepathy. He introduced me to science, geography, history and the mysteries of the universe, and yet he could not recognize human worth beyond “technical” males like himself. This was terribly confusing, because he wasn’t cruel or aggressive, but oddly tender. Ironically, I saw that it was my big strong father who needed protection from his tendency to say inappropriate and angry things in public. I wanted to protect him, but didn’t know how.

My search for “what was wrong with me” ended (I thought) at age thirty-six with a diagnosis of manic depression. The psychiatrist who treated me interpreted my aspirations, success and self-confidence as manic delusion. Assets such as abundant energy and verbal skill were also attributed to the disorder. (Positive attributes were defined as “abnormal” in females.) The diagnosis explained a lifetime of high-low episodes, confused my father(his mother had exhibited mania) and the diagnosis confirmed for my brother that I had been the sister from Hell. My mother passed away the year before I was diagnosed and I was thankful that I didn’t have to hear her opinion. As for my reaction, I was left with the startling realization that I knew less about myself than I had ever thought possible.

(I now understand that what I was experiencing was most likely not bipolar symptoms, but “meltdowns” and lifelong severe anxiety due to the stresses of “trying to fit into” social environments, like work. I was successful, but only temporarily, and at great cost.)