Case #1 – Donald T.

Donald Triplett, the first autism patient in the U.S.

No, not him.

Donald Triplett was born in Mississippi in 1933 to a well-to-do family in the banking business. From the very beginning, he was happiest when left alone and didn’t respond to other people, even his parents. He refused to learn to ride a bicycle or go down a playground slide. By the age of two, he could count to 100, recite the alphabet forwards and backwards, and name every U.S. president and vice president. He tended to repeat phrases incessantly, loved to spin toy tops and other things on the floor, and liked to line up objects in strict sequences. He was fascinated by numbers and was able to quickly multiply large numbers in his head.

Clearly there was something unusual about Donald, but no doctors had been able to provide any help or explanation. Those of us studying Donald today are able to easily recognize many characteristics of autism, but at that time autism wasn’t even a condition known to anyone in the medical field.

When he was three, the family doctor convinced his parents to commit Donald to an institution, believing that a radical change of environment would help him. His parents were allowed to visit him only twice each month. In this strange new place and deprived of familiar surroundings, Donald withdrew to the point of barely eating, sat in a fixed position for hours paying no attention to anything, and developed a habit of nodding his head from side to side. The institution’s director believed Donald had some sort of glandular disease and protested when the Tripletts decided to take their son home one year after his arrival.

In 1938, his parents took him to the Children’s Clinic in Baltimore to be evaluated by Dr. Leo Kanner, a pioneer in the field of child psychiatry in the United States. A Ukranian Jew, Kanner immigrated to the U.S. in 1924 by way of Berlin, where he went to medical school and had a practice. Kanner wrote the best-selling and first child psychiatry textbook published in English, titled Child Psychiatry.

Donald T. became the first of eleven children in Kanner’s study, which led to the 1943 publication of his landmark paper, “Autistic Disturbances of Affective Contact.” Kanner studiously described his highly intelligent patients who also displayed a powerful desire to be alone and an obsessive insistence on things remaining the same. Until this time, the children would have been considered feeble-minded, idiots, imbeciles, or schizophrenic.

The parents of the children Kanner studied described them as self-sufficient, happiest when left alone, acting as if others weren’t there, perfectly oblivious to everything around them, giving the impression of silent wisdom, failing to develop the usual amount of social awareness, and acting as if almost hypnotized.

Kanner was particularly struck by their inability to relate to people and objects in an ordinary way. For example, all the children walked into the examination room and immediately focused on toys or other objects in the room, but didn’t pay any attention to the people present. They were aware of others in the room, but they gave them as much regard as the furniture. One child exhibited fear of a pin that pricked her but not of the person holding the needle.

In group settings, the children would remain on the periphery of the group or altogether alone, but quickly learned the names, hair color, and other specifics about their peers. They exhibited astounding vocabulary and excellent memory, but were somewhat clumsy.

One interesting common denominator was that all the children were born to highly intelligent families. In addition, they all had strikingly intelligent facial features that gave the impression of serious-mindedness and anxious tension when in the presence of others.

Kanner diagnosed the children in his study with what he called early infantile autism, which was later simplified to autism.

Whatever happened to Donald Triplett after Dr. Kanner’s study?

When he was nine years old, Donald parents arranged for him to live with a nearby farming couple. He attended a country school and was put to good use around the farm. His fascination with numbers was used to calculate the depth of a well and count rows of corn. His parents visited often. After four years, Donald returned home and went to high school in his hometown. His peers and teachers viewed him as a genius and, fortunately, were very accepting and protective of him. After graduating he attended Millsaps College and earned a degree in French, then returned home and worked as a teller in the family bank. Eventually he learned to drive, play golf, and travel the world. He is now 85 years old. More about Donald’s long, happy, remarkable life is available here.

As autism’s first patient, Donald has shown us that it is possible to thrive in spite of a terribly rough start in life. It’s undeniable that autism creates roadblocks that seem insurmountable and that many don’t understand. But autism doesn’t have to be the end of the road. If we allow it, autism can be the vehicle for an extraordinary journey.

Donald Triplett, age 85

Call me crazy

Patsy Cline performing Crazy, 1961

Crazy, I’m crazy for feeling so lonely. I’m crazy, crazy for feeling so blue.

Written by Willie Nelson and performed by Patsy Cline, Crazy is one of my all-time favorite songs. Hearing Cline effortlessly jump from a high note to a low note, the raw emotion and tone of her voice give me goosebumps every time. I also love the sentimental melody and lazy, unhurried tempo of the song.

It was the spring of 1999. I was finishing my third year of college and things were not going well. I was definitely feeling lonely and blue, maybe a bit crazy, too.

Academically speaking, I was doing great. The books side of school had always been easy for me. That didn’t change in college. I made the Dean’s list every semester and was studying under a fabulous flute professor who taught me so much about performance improvement. I enjoyed the classes I was taking, unless we had to do group activities. The very thought sent me into a panic attack.

Every subject that I was interested in and excelled at (music, foreign languages, history) would have led to a teaching career or something that involved a lot of interaction with people, which I knew I wasn’t cut out for. I didn’t know what I wanted to do with my life after graduation and was amassing student loan debt by the day. I had come too far to quit or start over, but was utterly lost about which path to take.

Overall, I was unhappy. Something was wrong but I didn’t know what, so I started researching medical possibilities. WebMD was in its infancy at the time, but I found a condition that I thought seemed to fit me best: avoidant personality disorder.

People with avoidant personality disorder:

  • are overly sensitive and easily hurt by criticism or disapproval (check)
  • have few, if any, close friends and are reluctant to become involved with others unless they are certain of being liked (check)
  • experience extreme anxiety and fear in social settings and relationships, leading them to avoid activities or jobs that involve being with others (check)
  • tend to be shy, awkward, and self-conscious in social situations due to a fear of doing something wrong or being embarrassed (check)
  • seldom try anything new or take chances (check)
  • have a poor self-image and see themselves as inadequate and unappealing (check)

I called the student health center on campus and asked to see someone. When I got to my appointment, a therapist started asking me questions. Before I could even open my mouth, I started crying the ugliest of all ugly cries. I lost all sense of composure and couldn’t arrange my thoughts into coherent sentences in order to explain what was wrong. The therapist had initially thought that group therapy might help me, but clearly that wasn’t going to be an option. I never went back or told anyone else about this until now.

I don’t look back on my college years with fondness. Everyone had said that college would be the greatest time in my life, but for me it was absolutely the worst. The thought that everything after college was supposed to go downhill was extremely depressing. How could things get any worse? With thoughts like this, it was hard to be optimistic about the future. I was extremely afraid no one would ever hire me and I wouldn’t be able to support myself.

Although autism is now classified as a neurodevelopmental disorder, it has a long association with mental illness. The term autism was first used in the early 20th century and was regarded as a symptom of schizophrenia, rather than its own condition. Many people on the autism spectrum have at least one co-existing mental disorder; some scientists have estimated this number is as high as 70%. Some are initially diagnosed with depression, anxiety, or ADHD, for example, before it’s determined that they also fit the criteria for autism spectrum disorder.

I have never been formally diagnosed with a psychological or mental disorder. Do I have one? I don’t know, but I have struggled with depression, anxiety, and panic attacks. And I do believe it’s only logical that psychiatric issues are likely to sprout in the fertile soil of dealing with the effects of autism. The mental health of someone who has difficulty making friends, who doesn’t know how to go up to someone and start a conversation, or who tries to interact with others by telling them that female mosquitoes always buzz in the key of G (did you know that?) is probably going to suffer greatly from the effects of social isolation and ostracization.

So go ahead and call me crazy. Or weird. Or strange. Or anti-s0cial. I’m not offended by any of those terms. Characteristics that we have no control over are nothing to be embarrassed about. Just don’t tell that to my twenty-year-old self. She wouldn’t have believed you.

Life unworthy of life

“Their life is absolutely pointless … They are a terrible, heavy burden upon their relatives and society as a whole. Their death would not create even the smallest gap – except perhaps in the feelings of their mothers or loyal nurses.”

~ Alfred Hoche & Karl Binding, proponents of eugenics and authors of The Liberation and Destruction of Life Unworthy of Life, published in 1920

During the late 19th and early 20th centuries, the science known as eugenics rose in popularity in Europe and America. It aimed to improve the human population by controlled breeding in order to increase the occurrence of desirable genetic characteristics.

Adolf Hitler and the Nazis were big fans of eugenics and took its principles a step further than just controlled breeding. Aside from the well-known atrocities committed against Jews and enemies of the Reich during World War II, the Nazis also forcibly sterilized 400,000 people against their will and murdered 5,000 “disabled” children in their attempt to rid the world of undesirables.

Children at Am Spiegelgrund, Vienna, 1940s

One of the many clinics where children were euthanized was the Am Spielgelgrund clinic in Vienna, Austria. Most of the children were diagnosed with schizophrenia, feeble-mindedness, or epilepsy, which coincidentally were the three most likely diagnoses that autistic children would receive before autism became an accepted condition.

Other children were brought to the clinic if they exhibited delinquent behavior, were born out of wedlock, came from impoverished homes or poor upbringing, were born to parents who were alcoholics or criminals, or simply for having any trait deemed undesirable. Some were euthanized by gas poisoning or a lethal injection of carbolic acid or barbiturates. Others were starved to death or died from pneumonia after being forcibly exposed to the elements. Still others underwent experimental procedures where their cranial fluids were replaced with air or helium in order to X-ray their brains before they died.

Dr. Hans Asperger with patients at the University of Vienna Children’s Clinic in the 1930s

One of the evaluating physicians at the clinic was Dr. Hans Asperger, for whom a high-functioning version of autism was later named. In 1944, Asperger published findings on his studies of behavior patterns and abilities in certain children that included a lack of empathy, little ability in forming friendships, one-sided conversations, intense absorption in a special interest, and clumsy movements. He called the children he studied his “little professors” due to their ability to talk about their favorite subject in great detail. He diagnosed these children with what he called autistic psychopathy. Most of his work was unknown outside of Austria until after his death in 1980.

Although there is no known evidence that Asperger was a member of the Nazi party, it is likely that he signed an oath of loyalty to Hitler in order to retain his position at the clinic. Asperger refused to refer his little professors for extermination and publicly spoke of the good qualities they possessed in order to attempt to spare their lives, but he did recommend those on the low-functioning end of the spectrum for euthanasia.

Two-year-old Herta Schreiber suffered from seizures and “idiocy” caused by encephalitis. Asperger decided that Herta “must be an unbearable burden to her mother” and then recommended permanent placement at Am Spiegelgrund in July 1941. She died two months later. A specimen of her brain, along with those of hundreds of other children, was found in the basement of the clinic in the 1990s.

Brain specimens of 417 children found in the basement of the former Am Spiegelgrund clinic

At the age of 5, Elisabeth Schreiber (no relation to Herta) was evaluated by Asperger due to “aggressiveness.” He concluded that she also was a terrible burden on her family and recommended placement at Am Spiegelgrund, where she died shortly thereafter.

Alfred Wodl, age 6, was evaluated for failing to develop speech, although his mother believed he was highly intelligent and understood everything around him. When she learned what was happening to the children at the clinic, Anny Wodl begged officials to spare her son. While her pleas fell on deaf ears, she was resigned to asking that he at least be granted a quick and painless death. When she viewed his corpse, it was obvious to her, a nurse, that he had perished in agony.

These are just a few of the thousands of children murdered by the Reich in the name of progress.

After the war, Asperger wrote in his diary, “The fact that I was never called upon to kill anyone is a great gift of fate.” Not surprisingly, Asperger’s legacy is controversial. Although he might not have killed anyone by his own hand and was instrumental in sparing those he could, he definitely had a hand in sentencing many children under his care to death. It’s quite possible that he didn’t have much choice in the matter given the circumstances at the time, but that brings little, if any, consolation for the victims or their families.

Had I or my son been born a few decades earlier and in a different spot on the globe, things might have been very different for us. Imagine what innocent Herta, misunderstood Elisabeth, and brilliant Alfred might have done with their lives had they been allowed to live.

Our lives are worthy of life, just like anyone else.

Blessed are the weird

Henry Cavendish (1731-1810) is arguably one of the most important scientists in history. A natural philosopher, chemist, and physicist, Cavendish is most famous for discovering hydrogen, Earth’s density, and the molecular composition of water. Although scientifically brilliant, he did all he could to avoid social interaction. He was so reclusive that he only communicated with his servants in writing and even added a private staircase to the back of his house in order to evade his housekeeper. He also avoided eye contact and was described by someone who knew him as the “coldest and most indifferent of mortals.” Cavendish ate leg of mutton at every meal and wore the same clothes daily. Every evening he went out for a walk, taking the exact same route each time.

It’s difficult to accurately diagnose autism posthumously. However, given what we now know about autism, some experts have speculated that several important historical figures would now qualify for a diagnosis of autism, including Cavendish. Isaac Newton, Nikola Tesla, Charles Darwin, Albert Einstein, Emily Dickinson, Thomas Jefferson, Michelangelo, and Mozart are all believed to have been on the autism spectrum. My son came home from school the other day shouting, “Mom, guess what I learned today – Abraham Lincoln had autism, and so did George Washington!”

Although the rapid rise in the number of cases of autism in recent years would seem to indicate this is a new phenomenon, autism has been around as long as there have been humans. We just didn’t know what it was or have a name for it.

Dr. Leo Kanner is the psychiatrist credited with clinically documenting autism in the U.S. for the first time in 1943. He said years later, “I never discovered autism. It was there before.”

Hans Asperger, an Austrian pediatrician after whom a mild version of autism known as Asperger’s syndrome was named, stated, “Once one has learnt to pay attention to the characteristic manifestations of autism, one realizes that they are not at all rare.”

Throughout human history, the autistics have been the eccentrics, the oddities, the peculiar people on the fringes of society, those who never quite fit in with everyone else. Many people on the spectrum have made important contributions to science, technology, and the arts. Some of the greatest minds in history were likely on the spectrum. They are blessed, as is the world by their presence in it.

The perks of being a wallflower

A gravel road in rural Iowa, photo courtesy of my aunt Carmen.

I grew up in a small farming community in northwestern Iowa, where the land is so flat you can see for miles and miles across what was once open tall-grass prairie. My father’s ancestors settled there after immigrating from Germany in the 19th century. I was a kid in the 1980s when the farm crisis hit and my dad quit farming.

In spite of that, my childhood was a happy time. It wasn’t perfect, idyllic, or without its troubles, of course, but it was enough for me. One of the things that I loved most about growing up in a small town was that everyone already knew me. I never had to introduce myself or tell anyone my entire life story. They knew my family, where I lived, what grade I was in, where I went to church, my hobbies, my personality, my quirks, etc.

In my last post, I wrote about the many characteristics of autism. One of those was insistence on things remaining the same. Things in small towns never really change much, at least not in a dramatic sort of way. New people and businesses hardly ever come to town. This isn’t good for the local economy, of course, but it was the perfect setting for me. Things were constant and reliable. Most people my age talked about getting out of there as fast as possible, but not me. I wanted to live there forever.

Unfortunately, all this made leaving home and going to college extremely painful for me. I never really wanted to go at all, but felt I didn’t have much of a choice in the matter. It was just what I was expected to do. When I got to college, I had a very hard time adjusting.

I didn’t really make any friends when I was away at school, except for one roommate. I ate meals alone in the cafeteria and didn’t live the stereotypical college student lifestyle of parties and constant social activity. I was in an unhealthy relationship, didn’t know how to end it, and didn’t want to end up completely alone if I did.

Even though people on the spectrum usually function better alone, that doesn’t mean that we aren’t unaffected by social isolation, whether it’s voluntary or not.

My son is 12 years old and has never had a friend, never been invited to another child’s house for a sleepover or just to play. I’m not sure how much this bothers him. He doesn’t talk about it. He’s happiest when he’s home and doesn’t seem to mind doing things by himself.

But I can tell you from my personal experience that feeling utterly alone in the world – particularly in a social situation where it’s clear that you’re altogether different from everyone else, such as eating by yourself in the cafeteria – hurts. It hurts a lot. It hurts in a soul-crushing kind of way, particularly during childhood and adolescence.

You might be wondering why I never just summoned the courage to introduce myself or start a conversation during those times that I struggled. I didn’t do those things because I didn’t know how. I must have missed the day in kindergarten when the teacher handed out the social manual for life. It always seemed that everyone else instinctively knew how to act in social situations except for me. Everything that I now know about social behavior took me many years of observation to learn.

I also hated seeing the way people reacted to me when I did put myself out here, like I was some sort of social pariah. When I went to freshman orientation the summer before college, all the students in the group had to introduce ourselves. I thought to myself, “This is my chance! I can start over where no one knows the real me and everything will be different!” So I started talking in a very bubbly, outgoing, valley-girl type of manner, as I had seen the others introduce themselves. I don’t remember exactly what I said, but it was obvious when I was done that it was not normal. The guide who was showing us around paused for a few moments and said, “Okaaaay … ” I still have the scar on my heart from that.

I’m telling you this not for pity or to make you feel like you have to speak to me if you see me at the grocery store. I’ve learned to deal with it over the years by trying my best not to place myself in certain situations and by mimicking others’ behavior in my own way. I’m at peace with my reality.

I’m telling you this because not everyone you meet will be in the same place as I am now. Especially the kid sitting by himself at the lunch table. Or the girl standing alone in the corner at the school dance. I was once them, alone and wishing for a way to make a connection, hoping for someone to reach out to me.

Over the years, I’ve gotten much better at adapting to change. Having three children has a funny way of doing that. Being a parent forces you to prepare for the unexpected. Having children has also taught me to see the humanity in people, especially in those who are on the fringes of society. One of the best things to come out of my experience is that I received an excellent education in compassion.

To those of you reading this who are comfortable enough to extend yourself a little for the sake of another, I ask you to do just that. I can almost guarantee that it will be weird, cringe-worthy, and a little uncomfortable for you. The other person might even react in a way that makes your effort seem somewhat unwelcome, mostly because they don’t know how to react. Do it anyway. They won’t forget how you made them feel.

After all, wallflowers have feelings, too.

Autism 101: definition & diagnosis

This week’s post has been extra challenging for me because it’s difficult to summarize so much information into a few nice, tidy paragraphs and still have it make sense to the reader.

I tried my best to minimize the usage of technical and medical terminology in order to keep readers from becoming overwhelmed, but there was no way to avoid it completely if I wanted to provide a basic understanding and explanation of autism.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

au-tism, n. – a neurodevelopmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behavior

In order to qualify for a diagnosis of autism spectrum disorder (ASD), a person must show continuing problems with social communication and interaction, including:

  1. problems with social and emotional reciprocity, such as problems with:
    • normal back-and-forth conversation
    • sharing interests, emotions, or affect
    • approaching, initiating, and responding to social situations
  2. problems with non-verbal communication, such as problems with:
    • interpreting body language
    • making eye contact
    • using and understanding gestures
    • total lack of facial expressions
  3. developing, maintaining, and understanding relationships, such as problems with:
    • making friends
    • sharing imaginative play
    • lack of interest in peers
  4. restricted, repetitive patterns of behavior, interests, or activities, as shown by at least two of the following, currently or by history:
    • Stereotyped or repetitive motor movements, use of objects, or speech (e.g., hand flapping, lining up toys, flipping objects, repeating meaningless phrases, etc.)
    • Insistence on things remaining the same, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns and greeting rituals, needing to take the same route or eat the same food every day)
    • Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects or subjects)
    • Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain or temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement)
  5. Symptoms must be present in the early developmental period, but might not become fully apparent until social demands exceed abilities, or might be masked by learned strategies.
  6. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
  7. These disturbances are not better explained by intellectual disability or developmental delay.

Whew! I hope you’re still with me. Now that I’ve overwhelmed you with all that information, let’s take a step back. I should also mention that some clinicians might have a stricter adherence to the requirements before issuing a diagnosis compared to others.

All this information can be found on your own if you take the time to look for it in various places, but I wanted to provide an outline for better understanding and easier reference. By supplying the diagnostic criteria for ASD, my intent is that parents, caregivers, and anyone looking for answers will have a good idea of what symptoms to look for and what information they will need to present to an examiner.

This checklist would have been extremely useful to me as I sought a diagnosis for myself and for my son. In fact, a resource like this would have been invaluable to me about thirty years ago, when I was a child and wondering why some things were so difficult for me compared to everyone else, why I was so different. It might not have all made sense to me at that age, but it would have better than nothing, which is what I had in reality.

I’ll never get back all those years I spent wishing I were someone else and trying to be someone that I never could, but at least I have the opportunity now to help someone else in a similar situation.

In the coming weeks I will dig deeper into each of the characteristics of autism that I outlined above and give more detailed examples of these, but first I wanted to provide a brief overview of autism. Because, as the song in The Sound of Music says, the beginning is a very good place to start. (By the way, I have what you might call a highly fixated, intense interest in musicals.)

Angels among us

Three stained-glass angels hang in my kitchen window, one for each of my children. None of my offspring is perfect, but they are each perfectly imperfect in their own way.

My oldest daughter is a lot like her father, personality-wise. She’s extremely affectionate and wears her heart on her sleeve. You know what’s on her mind because she will tell you before you even have to wonder. I’ve always loved that about her and wish that I were like that myself. She tries so hard to make the lives of everyone around her easier. I often wonder what I did to deserve her. I’m not sure she realizes she’s a teenage girl because she doesn’t act like one at all. (Except for her love of K-pop, that is.)

My youngest daughter is an extroverted social butterfly. She needs people. Her greatest fear at this point in her life is being left behind at home. She begs to tag along when I go to meetings or work. I once kept track of how many questions she asked me over the course of approximately five hours – the grand total was 130. If it weren’t for the strong physical resemblance, I might wonder who her real mother is.

On the other hand, my middle child clearly takes after me. From an early age, he showed characteristics that his father and I knew came from my gene pool. He’s highly introverted, enjoys being by himself doing his own thing, loves to stay home, and doesn’t usually display much affection to loved ones. When he was diagnosed with autism at age 11, I did a lot of research about his condition and discovered that a lot of the characteristics of autism also applied to me.

One of the first things I did after my suspicions were aroused was to take this online quiz. Eighty percent of people who score 32 or higher are subsequently diagnosed with autism. I scored 42, then took it again, changed a few answers I wasn’t completely confident about and scored 41. Full disclosure – I wasn’t trying to diagnose myself, but I did need to satisfy my curiosity about whether or not this was a possibility.

I also found this checklist about signs of autism in females that helped me recognize many characteristics that I never would have considered on my own.

Given what I suspected, I asked for a referral from the psychologist who diagnosed my son. He gave me the name of another doctor who specializes in autism in adults. I met with her three or four times, answered a lot of questions, told her things that I had never told another living soul, and completed some questionnaires. We discussed in detail the reasons why I thought I was autistic, and also delved into possible reasons why I might not be. In the end she came to the conclusion that, based on the information presented, the diagnosis fit me as well. It took forty years, but I finally had an answer about who I am.

If it hadn’t been for my son, I might have never known. Isn’t it ironic that our children teach us so much about ourselves? We’re supposed to be the ones teaching them, but end up in the role of student more often than we ever would have imagined.

Whether he realized it or not, my son helped me figure out a lot about myself and improved my life immeasurably. If that doesn’t fit the criteria for angelhood, I don’t know what does.