Posts Tagged ‘autism’

When we touch

Posted: August 7, 2011 in autism, medicine
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One of the aspects of autism is a problem with personal space and affection. Either the person avoids touch and has a large personal space or the complete opposite, guess which one defines me?

I hate being touched, hugged, tapped on the shoulder, or having someone put their hand on me. It brings up a feeling of anxiety and a need to escape that overwhelms my consciousness. For example, if someone is talking to me and puts their hand on my shoulder I can’t think straight. I lose track of the conversation and all I can think about that feeling of something foreign invading my sense of comfort.

The closest I can describe the feeling is “pain like”. Bolts of electricity are sent to my brain as the physical contact continues. It’s like a molten red piece of metal pressing on my skin. The feeling demands to be acknowledged and requires to be on the forefront. It does not fade but instead stays present.

I have learned on some level how to lessen my visible repulsion to touch. The reason neurotypicals do this came to me as a teenager. I realized that they are actually comforted by such motions and are hurt/offended when I do not seem to return the same response. This is why I started to limit my response and I have come a long way.

When I was a teenager and people hugged me I stood straight like a piece of lumber. I kept my arms and hands flat against my sides and did not move them during the interaction. I could tell by the way people reacted that they found my response very uncomfortable. Then in my early twenties I started moving my hands, giving the other personal taps on the back in a very mechanical way.

Now as a physician I have advanced even further. I will initiate contact such as a touch on the shoulder or even in certain situations a hug. They seem more fluid and almost natural but they are still painful for me and overwhelm my senses. To help deal with this I count to 5 and release, this helps me deflect some of the pain and gives me and endpoint to look to.

In the end physical contact still brings on that burning feeling but I have learned to push thru it to achieve the objective, comforting the other.

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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.

Autism- the beginning

Posted: June 19, 2011 in autism, medicine
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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.