Paul McCartney recently said that he based the melody of Blackbird on J.S. Bach’s Bourree in E minor. The lyrical inspiration came from the Civil Rights movement of the 1960s. In British slang, bird is another term for girl, and McCartney explained that this song symbolizes black women’s struggle in the United States against racial and gender discrimination. Aiming to take a sad song and make it better, he wrote it to empower the powerless.
“That’s the magic of it all, that’s the wonder, because I wrote them with half an idea that they might help, but it really makes me feel very proud when I realize that they have been of actual help to people.” ~ McCartney in 2014, speaking of the songs he wrote all those years ago
Compared to many, my struggles in life have been few and far between. I had a happy childhood, a stable home environment, and the opportunity to go to college. I now have a wonderful family of my own and was fortunate enough to be able to stay home with my children when they were young. I am privileged to have financial security, access to health care, a roof over my head, and food on the table. I have been building a small business for the past few years, which has expanded to the point where I will be opening my own studio and shop soon.
Despite these advantages, I, like everyone, have had my fair share of adversities. The social isolation, the paralyzing anxiety, the low self-esteem, the uncomfortable awkwardness, the constant disappointing struggle to be someone I’m not …
The struggles I have endured might seem difficult for most people to understand, although I could be wrong about that – it could be that more people have struggled the way I have and I just don’t realize it. Considering that I’ve always felt alone on an deserted island, though, I tend to doubt that theory, which is why I write about my experiences now. I’m not aiming to make anyone feel sorry for me or saddle anyone with guilt. I write because I’m finally at the point in my life where I am able to do so openly and without regret, and in doing so, I hope to help others better understand what people like me go through.
My life’s struggles have all led up to this point and, hopefully, will have some sort of impact on my audience and inspire others in any way they possibly can, however small that might be.
Blackbird singing in the dead of night Take these broken wings and learn to fly All your life You were only waiting for this moment to arise
I’m no Paul McCartney, but I have finally learned to fly.
As always, thank you for reading. Here’s to a new decade, new possibilities, and better understanding of ourselves and others.
“Boy, the holidays are rough. Every year I just try to get from the day before Thanksgiving to the day after New Year’s.“
~ Billy Crystal’s character Harry Burns in When Harry Met Sally (1989)
It seems the older I get, the less enjoyable I find each succeeding holiday season. As a child I was as excited about the holidays as any other kid. Who wouldn’t look forward to time off from school, heaps of presents, and – hopefully – piles of snow to play in? Having a December birthday like I do is an added bonus.
I used to love wrapping presents, decorating them with elaborate ribbons and bows. The color schemes had to match and the gift labels had to be in just the right spot. It almost seemed like a shame to unwrap the gifts and destroy my works of art. Yeah, not so much any more. Now I’m lucky just to get the paper slapped on the presents before Christmas morning.
I used to love putting up the tree and decorating the house in lights. These days, I don’t even get excited about that and have gotten to the point of not wanting any decorations at all. “Honestly, do we really need to put up the Christmas tree?” I think to myself every year.
Part of the reason, I’m sure, is the added responsibilities of being an adult and parent. The shopping, the planning, the cooking, the baking, the wrapping, the decorating, the traveling, the packing, the expectations …
But for me there’s more to it than just these things. It’s the noise.
I’ve always been a quiet person, but I don’t recall the noise being so bothersome to me when I was younger. As the years go by, I’ve noticed that my threshold for tolerating noise gets lower and lower. Maybe this isn’t unusual. Don’t most adults get a bit irritated by noisy children or loud music, for example?
This noise aversion of mine applies to every-day life as well. I’ve gotten to the point where I wear earplugs as much as I possibly can. Unless there’s something I specifically want to listen to or hear, I wear earplugs almost constantly around the house. I’ll even sneak them into my ears in public whenever possible. (One of the benefits of having long hair.)
Recent MRI studies have found that children diagnosed with autism spectrum disorder have brains that are hyperconnected compared to typical (non-autistic) children. In other words, their brains have more neurons connecting different portions of their brains than typical children. The studies also found that the more connectedness a child has, the more severe their symptoms are. The picture below shows side views of the brain of a typical child on the left. On the right are side views of an autistic child’s brain.
In many ways, it seems to me that I feel and sense things more acutely than most people. Noises that don’t bother other people are too loud for me. I’m constantly telling people to turn down the volume. I don’t like going to the movie theater because the volume is so loud. Action movies are intolerable for me. I can’t even be in the same room when one’s playing, I have to go hide upstairs and put in my earplugs or use my noise-cancelling headphones. Many people on the spectrum rely on their noise-cancelling headphones in order to function in noisy situations.
This applies to other senses as well besides hearing. Most of the time I don’t like people touching me, except my kids. Certain smells and tastes that other people don’t seem to mind I find overpowering. I almost always have to wear sunglasses when I’m outside, even on a cloudy day because the light is too bright.
A lot of activity in a social setting seems fine to other people, but is usually overwhelming for me. Most people seem to long for socialization with others, but I usually don’t, at least not in large doses anyway. I can handle an hour or two of socializing at most, even with people I know well and enjoy being around, but then I have to remove myself or I will become overwhelmed and shut down.
If you don’t know what I mean by “shutting down”, imagine a pot filled to the brim with water that’s constantly simmering. Turning up the heat enough will cause the water to eventually reach the boiling point. If you don’t reduce the heat in time, the water will spill over the sides of the pot.
When I experience enough sensory input to cause me to boil over, I will shut down. During these episodes, I literally feel like something is building up inside of me. When I go beyond the boiling point, I can’t talk or tell anyone what’s wrong. I have to go be by myself until I calm down, which sometimes takes an hour or two.
This is one way that people on the spectrum respond to sensory overload. Others have meltdowns, which I will discuss at a later time. While I would imagine that most people feel overwhelmed or stressed from time to time, it seems the way a neurotypical (normal) person’s body reacts to it is different and not so severe.
So when I’m trapped in someone else’s house filled with people all talking at the same time and children playing and music and football games on TV and there’s nowhere for me to take refuge just to keep from shutting down … it just becomes too much for me. A few years ago during a very similar situation, I ended up sitting in the car until it was time to go home.
I know how odd my behavior appears to people who don’t understand what I’m going through, and I do try to tolerate as much as I possibly can before things go beyond the point of no return. I promise I’m not trying to be a rude guest – I’m just trying to get through the day, yet I inevitably find myself stuck in the awkward position between other people’s expectations of how I should behave at gatherings and what I am able to physically and mentally tolerate. This no-win situation is sure to bring out my inner Grinch.
“No matter how different a Who may appear, he’s always welcome with holiday cheer.”
I was eight years old and the Cabbage Patch Kids craze had taken over the holiday season. There was nothing I wanted more than to adopt one of those cloth dolls with the large plastic head and Xavier Roberts’s name autographed on its rear end.
We awoke extra early – even by Christmas morning standards – to help my brother finish his paper route. It was still dark when we returned home to the gifts waiting under our tree. When I finally unwrapped that doll that I had wanted so badly, I thought my life was complete.
My young self hadn’t yet figured out that no material possession would ever completely satisfy any desire I might have, or that the euphoria of obtaining something so treasured would quickly fade once I got what I wanted. Even now, as an adult, I still have to remind myself of this.
“I’ve been driving this car for so many years – I really need a new one. … That pair of shoes would be perfect for every-day wear, I should buy them. … Wouldn’t it be nice to live in a cabin in the country surrounded by nature, away from people and noise?”
It’s human nature to yearn for things, even when we know all too well that fulfilling our temporary longings won’t bring us permanent satisfaction. Wisdom advises us to value the people in our lives, not the material objects.
I have had various friends and acquaintances throughout my life, mostly during childhood and adolescence, but none has lasted more than a few years or so. Even when I spend time with people I like and enjoy being with now, I always leave with the sense that something’s missing, as though we tried but just couldn’t make a connection.
As much as I would like to have one true, close friend, I’ve come to the point in my life where I have accepted the reality that I will likely never be able to attain a friendship on a level such as the one I want. For people like me, friendships are elusive, rare, and fleeting.
Granted, any relationship between two people is naturally challenging and prone to conflict, but a relationship is all but unsustainable when one of the people involved in it has a difficult time relating to people in general. The odds of any relationship developing and surviving, in my experience, immediately plummet.
Most of my difficulty with making and obtaining friends lies with me. I know and accept this. For one thing, I don’t know how to approach people and develop a relationship in the first place, which I have previously discussed in my blogs titled This one time at band camp and Call me crazy. My struggle with initiating and maintaining friendships is well-covered territory, and I won’t rehash it all again here.
Researchers in Sweden studied 100 autistic men and boys over a period of 20 years in order to get a better idea of their friendships and quality of life. Approximately one quarter of the men said they had few or no friends, in which the term “friend” was loosely defined to include even people they simply saw from time to time. Interestingly, though, many of these men seemed happy with their lives.
Most people might assume that someone who has few or no friends is unhappy, lonely, depressed, etc. However, it’s worth pointing out that Dr. Leo Kanner, considered the father of autism, coined the term “autism” based on the Greek word autos, meaning “self.” He chose this term because the patients he studied and diagnosed in the 1930s and 1940s displayed a powerful desire to be alone, and ever since this has been a required characteristic for the diagnosis of autism.
Herein lies an eternal paradox that people on the spectrum deal with – living in a world with expectations that we are naturally incapable of meeting. We inherently have a strong desire to be alone, yet we have been conditioned by society to want and achieve all the things that normal people do because we live in a world designed for and by people who are not like us.
I have spent most of my life wishing that I could form friendships like other people, and feeling that my life was an incomplete, miserable failure because I didn’t have those relationships like everyone else.
It has taken me a lifetime to acknowledge and accept the reality of what is and is not possible for me. But now that I have, my life has become much easier and more enjoyable. I no longer hold myself to others’ expectations and don’t force myself to be someone that I cannot. I also no longer berate myself for being alone, and I thoroughly enjoy my own company.
I know that many relationships – or in my case, almost all relationships – only last for a season, and that you can’t always get what you want, or even what you think you’re supposed to want. But, if you try sometimes, you just might find you get what you need. And often that is enough.
The first time someone used the term ‘special education’ regarding my son, I was shocked.
At the time, he was in three-year-old preschool, being evaluated by the Area Education Agency (AEA) for social deficiencies. He didn’t show any signs of intellectual or physical disability, he just had a hard time adjusting to changes in his environment and transitioning between different tasks. I wanted to say, “But he doesn’t need special education. He’s not disabled!” (At that time, we had no idea that he was displaying classic symptoms of autism.)
I entered a stage of denial. I thought, “They can call it whatever they want, but it’s not really special education.” At least not the special education I was familiar with, anyway. Let me be honest – there’s a stigma that surrounds special education, one I didn’t want him to have to deal with.
My childhood experiences with special education were minimal at best. The students receiving special education at my school had obvious, severe physical or cognitive disabilities and no interaction with the general student population. Not surprisingly, my perception of special education was extremely limited and misguided.
My son was placed on an Individualized Education Program (IEP) for a few years, then removed from it before he started kindergarten because the evaluators felt he had improved enough to no longer need an IEP. After that, things at school were OK for awhile, not perfect, but he was doing well academically and we assumed that he would eventually grow out of the behavioral problems he was having and develop the skills he needed to help him deal with his issues.
In reality, the issues became worse as he got older. By the time he was in fifth grade, I was getting daily calls or emails from the school about problems he was having. He’d lose a game at recess and refuse to come inside. Or he’d get upset about something and throw a book. He’d miss one question on a test and rip up the paper. Once he became so distraught about getting a flu shot that I had to physically restrain him just so the nurse could get the needle into his arm.
When he was finally diagnosed with autism spectrum disorder in fifth grade at age 11, he was placed back on an IEP, which he has been on ever since and will most likely continue to be on until he graduates. He started receiving special education services and, honestly, I couldn’t be happier about it.
What changed for me? How did I manage such a total 180-degree reversal?
Let’s talk first about what special education is. On a basic level, special education is defined as specially designed instruction tailored to meet the unique needs of a student eligible to receive special education services.
Once upon a time, in a not-so-fairy-tale land, many children with disabilities in the U.S. were prohibited by state law from receiving education in public schools. Children who were blind, deaf, or labeled “emotionally disturbed” or “mentally retarded” were explicitly excluded from attending public schools, and most lived in state institutions where they received little to no educational or rehabilitative services.
Federal legislation in the 1970s extended civil rights to people with disabilities by providing opportunities for them through education, employment, and various other settings. Public schools are now legally required to evaluate disabled children and create an educational plan (i.e., an IEP) with parent input so as to emulate as closely as possible the educational experience of non-disabled students.
Now that my son has a diagnosis and is receiving special education services, just about everything in his life has improved. There are still struggles from time to time, but the good days far outweigh the bad.
His IEP allows him to take breaks when he feels he’s getting overwhelmed. He is able to remove himself from a potentially bad situation and go to the special education room until he calms down. This one concession alone has been so valuable to him, the school, and us. He has so many fewer meltdowns than before, and hardly any disruptive behaviors. He is able to learn better and doesn’t create distractions in the classroom. Phone calls from the school are now few and far between.
And he has been blessed with such amazing special education teachers. Words are inaccurate to describe how valuable these people are. Their job is not easy, and yet they are able to help improve the lives of their students and their students’ families. His middle school special education teacher used to take the time every day after school to write us an email, letting us know how his day was and whether or not there were any issues. And I have to imagine she did that for all her students, not just us.
Would I rather my son just be a normal kid who didn’t need special education services? That’s a hard question to answer. His autism has many positive characteristics that the world would miss out on if he were just a normal person. As much as I wish he could just be an ordinary kid for his sake, his autistic mind works in beautiful, extraordinary, mysterious ways, ways that I believe will one day be of great benefit to the world.
While autism makes some things more challenging for him, it also makes him such an incredible human being. That is truly a beautiful thing to witness and makes me so proud to be his mom. His autism makes him who he is. And I wouldn’t have him any other way.
It’s back-to-school time, that time of year when most parents breathe a sigh of relief and look forward to enjoying some peace and quiet, especially those who stay at home with their children during the summer.
I’m sure there are some parents who are a bit sad when summer comes to an end. Summer definitely has its share of pluses – not-so-strict schedules, warm weather, vacations, more time for relaxation … But some of us have other reasons to not look forward to a new school year.
While I enjoy the silence as much as anyone – in fact, probably a lot more than most – and I do look forward to having more time to myself to actually try to get something done, sending my children back to school isn’t exactly my favorite time of the year, and it’s not just because I don’t get to sleep late on school mornings.
For many people on the autism spectrum, changes to daily routines can create a lot of problems. The reason for this is because daily life is a constant barrage of unknowns, so those on the spectrum rely on strict routines, habits, and schedules to provide themselves something known and familiar in order to find some calm and comfort in a strange, noisy, sensory-filled world. Surprises, chaos, and uncertainty are not easily tolerated by autistic people.
As Theresa Jolliffe explains, “Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds, and sights. There seems to be no clear boundaries, order, or meaning to anything. A large part of my life is spent trying to work out the patterns behind everything. Set routines, times, particular routes, and rituals all help to get order into an unbearably chaotic life. Trying to keep everything the same reduces some of the terrible fear.”
I briefly mentioned before in my Autism 101 post how one of the defining characteristics for a diagnosis of autism is that a person must insist on things remaining the same, have inflexible adherence to routines, or have ritualized patterns, but I can’t overstate how important patterns and routines are and how much chaos can be caused when one of these is disrupted.
In my son’s case, the end result is usually a meltdown of varying intensity, where he becomes completely uncommunicative and essentially stops functioning. Often times he loses all self-control and takes out his frustrations on anything he can get his hands on. These episodes can last anywhere from 20 or 30 minutes to several hours, depending on how severe they are. I have come to dread any change in routine that might set off an avalanche.
My son started junior high a few weeks ago. New building, new schedule, new teachers, new classrooms, new locker combination, new everything – the perfect recipe for a potential storm. He didn’t outwardly appear to be too anxious about starting junior high, but I know I had enough anxiety about it for the both of us.
Before the school year started, I emailed all of his new teachers, explaining that he’s autistic and that it might take awhile for him to adjust to his new environment. Without knowing this, others could easily assume that he’s giving them a hard time when, in reality, he’s the one having a hard time when problems arise.
We also were able to meet most of his teachers and tour the school at orientation before the first day of classes. And, most importantly, we met his new special education teacher and discussed ways to help the transition go more smoothly.
After the second week of school, I received the following email from one of his teachers.
School. Year. Made.
Words aren’t adequate to describe how much it meant to receive this short message. It’s easy to get discouraged when someone you love more than anything in the world has to navigate so many challenges every day and you know that life will never be easy for them. You don’t ever know whether others will be able to see through all of the issues and understand who your loved one really is and just how special they are.
Don’t get me wrong – there have been some issues even in these few short weeks and I’ve spent quite a bit of time on the phone with people at school discussing strategies and ways to help both him and them. The transition hasn’t been completely smooth-sailing, but it has definitely gone better than I had feared it would.
And now it’s my turn to finally breathe a sigh of relief. At least for today.
My daughter and I go to a lot of concerts and musical theater events together. She is always concerned that I won’t be able to handle all the noise, people, and lights. Believe it or not, I love going to concerts, although I never leave home without my earplugs.
One of the things I love most about music is how it brings all types of people together. I was once again struck by this phenomenon while attending a Queen + Adam Lambert concert recently. Legendary British guitar player Brian May and drummer Roger Taylor were joined by American Idol runner-up Adam Lambert on lead vocals. There’s no question that Freddie Mercury is irreplaceable, but Adam gave an amazing performance. He didn’t try to imitate Freddie, yet still paid homage to the voice of Queen.
There were obvious differences among the concert-goers, such as age and ethnic background. And there were undoubtedly not-so-easy-to-spot differences. Political persuasion, sexuality, religion, ability/disability, etc. Yet we all sang and clapped along together to the songs we know and love so well. We will never all agree on everything, and frankly oftentimes it feels like we don’t agree on hardly anything. But for a few hours, we can come together and agree about something, even if only for a little while, and being a part of that feeds my soul.
When I ordered the tickets, I wasn’t able to get two seats together, so I opted to get one seat right behind the other. Needless to say, my daughter wasn’t thrilled with this arrangement and I admit it wasn’t ideal, but it was the best I could do at the time. Fortunately, there was a nice family sitting next to me who offered to switch seats so that my daughter and I could be next to each other. I thanked them profusely and repeatedly, yet still felt that my gratitude was insufficient for what they did for us. Thanks to their generosity, we were able to enjoy the concert so much more.
At one point in the show, Brian asked each person in the audience to hold up their phones and every corner of the arena filled with light. Surrounded by the glow, he said, “We need more light in the world right now.”
As children around the country get ready to return to their classrooms, my thoughts anxiously drift to those students who need a little extra light from their peers and teachers to help them through the day. School is challenging enough as it is without having additional hardships to endure. Sending a child with special needs off to school is especially difficult, in part because there’s no way of knowing whether your child will be on the receiving end of someone else’s rush to judgment or their exercise in acceptance, and you can’t be there to help navigate any situation that might arise.
My son has been very fortunate so far to have had extremely understanding teachers and staff who have been able to see what a great kid he is in spite of his frustrations and challenges. I’m not sure how many of his peers are able to grasp that, though, and I worry as much about how they will react to him as much as how he will react to them.
Every school day around lunchtime, I think of him and wonder what he’s going through at that moment. Is he sitting by himself, or has he found a friend? Will his classmates accept him as he is, or will they decide he’s not enough like them to bother trying to get to know him? Will they invite him to join their table, or will they ignore him?
He’s allowed to eat lunch separately from everyone else if needed, in case he’s feeling anxious or just can’t handle all the activity going on in the cafeteria. If he starts feeling overwhelmed during class, he’s allowed to take a break and return when he feels ready. Little things like this have made an enormous difference in how he functions at school. It took us several years to figure these things out, and it took him quite awhile to be able to recognize when he needs help before things spiral out of control, but his situation would never have improved without the cooperation and determination of his teachers and administrators. We will never be able to show or articulate our appreciation to them sufficiently, although we do keep trying.
All this talk of light has reminded me of a quote from a sermon that Dr. Martin Luther King wrote while in jail for non-violent protest and later delivered in November, 1957.
“Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”
May we strive to fill the dark corners of the world with our light and love.
I really did go to band camp. Twice, actually. This first time was in the summer of 1992 when I was 14. It wasn’t my idea and I really did not want to go. Spending several days with total strangers was not (and still isn’t) my idea of a good time, even if music is involved.
I spent two weeks living in a dorm at the University of Kansas where I didn’t know a soul. All I remember about my roommate was that she was from Falls City, Nebraska, and was in training for cross country. We didn’t exactly hit it off.
Fortunately, there were two girls in the room next door who befriended me and took me under their wing. Claire and Kate were best friends and both played double-reed instruments. I learned about Claire’s love for Billy Joel and the Carpenters, and Kate’s sister who had the exact same first, middle, and last name as my cousin. They showed me how they made their own reeds and let me tag along with them for the week. The following summer I went to a different band camp that my new friends invited me to attend with them.
The friends-by-adoption strategy is how I’ve operated socially my entire life, whether it was with a neighbor child, someone I sat next to at circle time in kindergarten, or people in the room next door at band camp. Although I have had friends over the years, I never make the first move at developing a relationship with someone else, and I hardly ever invite anyone to do anything with me unless I know for sure that they will say yes.
Let’s fast forward a few decades. In 2014 I attended my first national convention as a piano technician. I was new to the profession and didn’t know anyone outside of a few people from my local chapter who I’d briefly met at a few monthly meetings. On one hand, it felt really good to be around other people who spoke the lingo and had an understanding of what I do. But on the other hand, it was like trying to join a club when I hadn’t been invited. No one was rude or anything, but many of the people there had known each other for decades and attend conventions just to hang out with their old friends and socialize, unlike me who didn’t know anyone and was there solely to learn.
Although I did learn a lot, I felt like an intruder the entire time I was at the convention. I skipped the formal dinner on the last day, even though the meal ticket was included with registration. I didn’t want to spend an entire evening trapped at a table seated between strangers making small talk. “So where are you from? How long have you been a piano technician? What made you decide to want to do this for a living?” No, thank you.
I’m sure most people have some anxiety about being in an unfamiliar surrounding where they don’t know anyone. From what I’ve observed, people who are good at socializing seem to overcome any anxiety they might have fairly quickly as they become comfortable in their surroundings. But for people like me, it’s not just anxiety, it’s paralyzing fear and it doesn’t usually go away very quickly, if ever.
I have never been able to approach someone I didn’t know and strike up a conversation, unless I had a specific purpose for doing so. For example, I attended a regional political training session a few weeks ago and one of the speakers offered to come train local groups individually. After the session was over, I approached him and asked him to come speak to the people in my county. I knew he was going to say yes because he had just offered to do exactly what I was going to ask of him. That I can do, but if there’s no certainty of a topic of conversation and I don’t have a specific reason to talk to someone, I cannot do that. And by that I don’t mean that I just can’t bring myself to do it psychologically, I mean I can’t do it physically.
The best way I can describe it is that it feels like the thoughts inside my head get tangled up with each other and I can’t formulate the necessary words. Any words I do come up with get stuck somewhere in my throat and I can’t force them out. All the while my tongue feels like a heavy, immobile object.
This inability to speak at certain times is called selective mutism, which occurs when someone is fully capable of speaking and understanding language, but is physically unable to speak in certain situations. For example, a person with selective mutism might be able to speak comfortably and freely at home or with people they know well, but is unable to do so in an unfamiliar or pressured social situation. Although not universal, selective mutism is common for people on the autism spectrum.
If you don’t understand what selective mutism is and why it occurs, it’s easy to assume that someone who doesn’t converse in a normal way is shy, socially awkward, rude, or maybe even a pretentious snob. In reality, while he or she might in fact be any or all of those things, the person having trouble getting the words out might also be fighting an inner turmoil that you know nothing about.
She understands that there’s no way you would know this unless she told you, but, of course, she can’t. All she asks is that you be slow to judge and quick to understand.
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.
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.
“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.
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.
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.
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.