Archive for June, 2011

I stand in the hallway with my dress shirt and pants accompanied by an oddly matched tie wearing a long white coat which is slightly dirty and has pockets overflowing with papers and notes.  Next to me is a small red-haired medical student, this is her first rotation but she is a former hospice volunteer so she is use to these emotionally stressful situations.

Across from me is a young black woman with tears in her eyes even before I say a word. But her eyes speak of something else, they speak of an intense need for someone to give them hope, but I am about to do the opposite. I am very blunt with her, I use the word “Death” and “Dead” repeatedly. Odd thing is, I feel myself when speaking like this, I drop all my filters which parallel tact and just “Shoot from the hip”. I crush her hopes, re-affirm again and again that palliative is not curative, and her loved one is in the hospital to die, not be treated.

While I am explaining this I am burning a lot of energy actively scanning for non-verbal communication. This of course is a problem with people with autism, we lack the ability (severity varies) to read non-verbal signs. To overcome this I run what I call “computer scripts”. I watch water from eyes forming tears, I look at the angles of the mouth to see if they change from resting state, I look at the facial muscles to see if they twitch, and I watch the hands to see if they jitter about or make fists.

The worst part for me, and sometimes most telling, is eye contact. Making eye contact, especially prolonged, causes what feels like physical pain to me. A searing feeling in my head that causes my mind to shout at me “LOOK DOWN LOOK DOWN”, I start to feel anxiety flood my body and my muscles tense, then I break eye contact and start again. But the problem is I know normal people thrive off eye contact. They NEED the ‘other’ to look at them in the eye and maintain eye contact in such a very stressful situation. So I run another script, I stare at their pupils for 20 seconds, break eye contact and look down for 1-2 seconds, re-engage. During this I examine their own eye contact, do they avoid my eyes? Do they burn with intensity and anger? Do they look beyond me? Are they dim-witted, like they aren’t absorbing the information I am giving?

It’s amazing how comfortable I am in these encounters, it almost feels like I am in “the zone” despite my lack of natural communication skills. I have an objective and multiple strategies to get to achieve that. I adjust my plan based on my scanning of non-verbal communication. And when the patient has a peaceful passing that is void of suffering, when I have reduced whatever mental suffering and questions the family has, that is when I feel a sense of accomplishment.

Its kind of funny though, if you asked me in undergrad or medical school if I was interested at all in palliative/hospice care I would’ve given a definite no. But this year I have had many, many encounters with it and it is one of the most satisfying interactions I have hd. Even when I spend a large amount of time fighting with a family on the behalf of a patient suffering horrible pain, when that patient passes in no pain because of me, I feel like I made a difference.

Shock therapy, aka electro convulsive therapy (ECT) is much more humane now then it was in the 1950-1960s and very different from how they portray it on TV. Although the objective of causing a generalized tonic-clonic seizure remains,  a combination of general anaesthesia and a muscle paralytic agent makes the procedure painless and reduces fractures to basically zero. So here is my “one flys over the cuckoos nest”

It’s a day off from my crappy minimum wage job and I am being driven to the hospital by my parents, as you are not supposed to drive after general anaesthesia. I wait in line outside the “therapy room” with others like me, lots of them much older or on the surface much more disabled. Finally, the wait is over and it is my turn.  I am led to the therapy room by an older nurse, one who still wears the old nursing hat with the matching folded cap. The ECT machine is imposing in the room, large, antique looking, steely gray with a bunch of dials and gauges. I lay down on the cold OR table still wearing my street clothes and look up at the sterile white ceiling. I feel the fear and apprehension building even though I have done this many times before, but I try to ignore it. I try to concentrate on the patterns on the ceiling and ignore the screaming anxiety in my head. The IV is started, my head is strapped with an old leather belt-like device (bipolar ECT), my body strapped down by much thicker leather straps, and the drugs are pushed.

“Count back from 100…”, the anesthesiologist says. I start to feel drowsy but then right before I nod off the paralytic agent takes effect.  I feel my legs go numb then limp, then the worst happens. I feel my diaphragm start to slowly give up and this causes me intense panic. It feels like the worst asthma attack I have ever had, I can’t move enough air, my eyes become wide with fear. I begin a losing fight against the medication’s effect, using every ounce of strength and determination I have to keep my diaphragm moving up and down… And then…. I black out.

I wake up with three large leather straps across my body. I have no idea what is going on, where I am, or who I am. I feel intense fear, an overwhelming urge to escape to a safe place to figure things out. I start fighting against the straps, trying to tear myself out, but I am secured tightly.  A nurse I have never seen before comes over and asks “Whats your name? Where are you? What just happened?” I am unable to answer any of these questions and I become very angry. She tells me my name, and when she does all I feel is a twinge of deja-vu, like “I swear I’ve heard that name before”. This process, asking me the 3 questions then telling me the answers occurs every set period of time until I am able to answer all three without her prompting me. I have no idea how long this takes as my sense of time is destroyed.

They lead me to the cafeteria and offer me juice and crackers. The anaesthesia has made me very nauseous, or maybe it was the grand-mal seizure? Either way I have no urge to eat. I feel…flat…nothing..a blank slate and my face reflects the same emptiness. I have no negative thoughts or positive thoughts, I am just..level. My parents meet me and start talking about random life topics. I am unable to keep up with the pace of the conversation, my brain feels like its going thru a thick fog.. On the drive home the feeling of deja-vu occurs over and over again.. “oh I think I’ve seen that car before” “Oh I think I’ve seen that house before..”

I underwent over 100 of these procedures, and only stopped because I had a heart arrhythmia under anaesthesia. They did not make me happy, nor did they make me “normal”. They do not end a behavior because of “pain” (as there is none) or negative reinforcement (again, as there is none) but it did help reduce my intense urge to kill myself. If one was suicidal, and 10 was perfectly happy, it made me a 5 with the inability to go to a 4 or even a 6. Others around me say I became very forgetful, that during this period I was not as sharp or as quick as I normally was. One person told me I was a “zombie version” of my former self. Also, the 1.5 year period I was receiving these is completely wiped from my mind still.. My memories from this time are purely people telling me later what I did or what happened. Yet, despite these side effects I feel that ECT helped save my life. It helped me get thru one of my roughest depression phases and hence able to go on with life and for that I am thankful.

Autism- the beginning

Posted: June 19, 2011 in autism, medicine
Tags: ,

For years I was told by members of my family, my wife, and a few friends that I had aspergers or high-functioning autism but I brushed them off because I thought they were just too eager to fit me into a nice explained box. My odd behaviors and “special” way of communicating with people felt like a bunch of quirks that bundled together made my personality

This all changed one day in medical school during a psychiatry lecture on some non-specific topic. I was sitting there bored so I started randomly reading articles that were stuck in our notes and landed on one from a NY times author about how he discovered he had high functioning autism (HFA) by the time he was an adult. Much to my surprise, the article made me very upset, so much so that there were tears coming down my face because of how much I identified with the writer. I was upset that all these features that I once thought were unique ended fitting nicely into a diagnosis. It wasn’t the typical medical student neurosis of “OH NO I’M COUGHING I HAVE PNEUMOCYSTIS PNEUMONIA”, it was more than that. All these quirks, not just one but ALL, fit nicely into a little autistic box. My great ability with numbers/computers, my severe speech delay, my clumsiness, lack of tact, and my social ineptness all lined up with this diagnosis.

To help sort things out I made an appointment to talk to one of our psychiatrist professors. After a talk of why I thought I may be autistic and my troubled past she agreed that I had a form of aspergers or high functioning autism. This was a little surprising as I have seen psychiatrists for 18 years pretty much constantly, been diagnosed as Major depression(duh), OCD, Bipolar(oh come on-wheres the manic part in my life?), schizotypal(not even close) but never autism. There is a footnote to this though: As mentioned in a previous post a “case report” was written on me when I was younger, could that have labeled me as autism? No one remembers, so it is lost in the past.

After months of struggling to come to term with it (I thought I was unique?) I accepted the diagnosis and allowed myself to be at peace with this one part of my life.  I have even become comfortable to the point that on a whim I tell people I have aspergers. Because of my pretty much non-selective way of sharing this information I have had a very wide range of reactions, from good: “ooh that’s why you act like that/said that” to bad: from a med school evaluation “Cannot keep a professional distance from clinical staff”. I have also had different experiences from my fellow classmates and have been shaped in different ways
because of my mind structure. It seems because of my outside experience of the “group conscious” that I escape many of the unspoken social pressures that change many neurotypicals.

Oddly enough, this same psychiatrist ended up involuntarily committing me to the hospital and later  suggested I write an article about Aspergers and medical school. But, sadly, my writing skills don’t really trap and interest readers as you have most likely experienced here.

Does grief affect someone with autism differently than neurotypicals (those without autism)?

I went to assess a pt who was in end of life and met the pt’s daughter in the hall. She was shaking and saying her mother hadn’t breathed in over a minute. While the nurse tried to calm her down I listened for breath and lung sounds, which there were none. I informed the daughter and she started crying. I started feeling the strong sense of composure and cold detached logic, which I pride myself on, collapse. The wall around my emotions I had been building since my grandmother’s death 3 years ago just gave way and I felt the daughter’s grief affect me on a personal level. As I saw the daughter cry I began identifying with her pain and knowing how deep it runs which tore me apart inside. I felt tears start to well up in my eyes, I tried to say my condolences, hugged her (which I did even though it causes me physical pain because I know neurotypicals need it in times of grief) and quickly escaped the room.

It all seems odd to end up this way as I have spent countless hours focusing on my death, planning it, trying to predict it’s after effects. I looked at death in a logical way, as in an event that is expected end point of any life. Yet I was not prepared for my grandmother’s death and it ended up changing me forever. After the event I didn’t really talk and I started sleeping the days away. I had typical grieving reactions such as thinking I heard her voice or seeing her out of the corner of my eye. I cried for months and found it very hard to not wake up thinking of her. I couldn’t even watch TV shows or commercials that contained grieving people or I would become very upset.

Fast forward 3 years later, and things have become like what Johnny Cash said regarding his brother’s death “I kept talking but everyone stopped listening, so I stopped talking about him”. In this time period, it feels like I have built a wall, a defense system against tragic events effecting me personally. While this may seem cold, it is required if you are a doctor in a field with death being a normal expected event, for example: In my ICU rotation we had someone die around once a day and if I had opened myself up to the experiences of the family because I would have not made it thru. I thought the barriers I had formed over the years were near complete as I had gone thru patient deaths unscathed. Yet, when this patient’s daughter, who I have known only for 6 months, started grieving my defenses completely failed.

I suppose I should have predicted this, for the wall itself is in part a charade. If I was completely healed from my loved one’s death, couldn’t I bring myself to visit her grave? Couldn’t I think of her and things we did without crying? Would I avoid talking about her for fear of the emotional response it will bring?

So I would say yes, in this case an autistic man grieves like any other man.

Warning: As someone with high functioning autism, my writing can be very dry and be filled with facts and information. Consider this a warning for all of my posts.

Never let your past stop you from moving ahead with your life. Although you may have made mistakes or taken a bad path in the past you can *always* return to the path of success, it just will be a little more complicated and may take longer. To support this I will describe my story, the factors against me, and the bad choices I made.

In the beginning: As a small child I was developmentally delayed and had a very severe speech problem.  It was to the point that my “educators” thought I averbal (lacking verbal skills, unable to communicate verbally) and was put in a special education class. My mother even signed a release for a researcher to publish a “Case review” (Case reviews are medical articles focusing on a specific patient with a rare or unique presentation of a disease or disorder) about my condition(my mom doesn’t remember what I was diagnosed as: I wonder if it was autism? Aspergers? A genetic condition?).  After standardized testing I was allowed to re-enter the general student population but had to take speech therapy for 6 years. Then in high school we had standardized testing(yet again) and I was placed a year ahead in some classes (math, English, science). Problem was when I became 12 I suddenly felt overwhelmingly depressed. I began cutting myself nonstop in discrete places on my body.  I didn’t put an effort in anything and had no interests or hobbies. I struggled with even getting out of bed and my longest school attendance streak was 4 days in a row.  It got to the point of being hospitalized for psychiatric reasons several times which in turn made school even more difficult. So, logically, I dropped out in 11th grade to wallow in my depression. But I was lucky enough that there was an “alternative highschool” near me and there were people to push and get things done in my name. The school allowed me to graduate with a highschool diploma, were very lax with time restrictions (which I struggle with), and worked around my mental illness.

After highschool I had a very hard time mentally. I attempted suicide multiple times and was in and out of psychiatric hospitals. I thought everything was hopeless and I was convinced I would die by suicide or some other violent means before I was 21.  I even started receiving shock treatments (electroconvulsive therapy, ECT or EST) because of the crippling effect of my depression. But thanks to my psychiatrist, wife, and family I was pushed into going into community college.  I started in computers but switched to liberal arts aiming to go to an ivy league college. I still battled depression and there were multiple times I almost committed myself to the hospital. Yet, despite all this, I ended up being accepted to an ivy league school.

At this prestigious school, my depression got worse and I felt alone on a campus of +10,000 students.  I became jaded with medicine and didn’t apply to medical school at the time most students did. Instead I moved to a different city, quit my psych meds and started cutting myself profusely again. Eventually I applied to medical schools and was accepted even though I am perhaps one of the worst interviewees there can be.

While in med school I was told repeatedly that I “didn’t have a doctors personality” and I would “never last”. They were right in some part, as I did have some trouble with social aspects and intercommunication skills. My depression also hit a low and I was involuntary committed to the hospital my 3rd year of medical school. I then had a wonderful time as my lovely dean tried to block me from being reinstated as a student after finding out it was a mental hospital that I had spent time in.

Yet, despite all of this: the speech problem, the supposed mental delay, the overwhelming specific obsessions, dropping out highschool, the multiple forced hospital admissions, the 100 plus procedures that fried my brain, and all the people telling me it’s impossible and I can never do it, I am a full-fledged doctor. Not only that, this supposed mental handicapped, mentally ill, socially inept person scored higher than at least 50% of his healthy, normal, non-mentally ill fellow students.

Point is: We all have challenges and no matter how large they seem or how everyone is yelling “you can’t do that”, you CAN achieve your goals and there IS a way. You just have to search for it, press HARD, and
don’t give in.