Off The Rails

For any kid growing up, a major milestone in their life is the first haircut – for today’s kids, that might mean getting to sit in car shaped chair, while the hairdresser performs their magic. In some cultures, it’s a quite a big deal. For young boys in the Cook Islands, for example, it is a major ceremony where the boy sits on a chair draped with quilts while members of the community plaster him with money or other gifts.

Although the Cook Islands share a free association with my home country of New Zealand, my early haircuts carried none of those traditions – no quilts, no gifts, and no money. It was, however in my mother’s memory, quite a big spectacle. Although I have no memories of the “trauma” of getting my hair cut, I just screamed and screamed. They told my mother to bring me back on Wednesday afternoon, when it wasn’t so busy.

They were right – on Wednesday afternoon, it was not crowded at all. In fact, when my mother brought me back, she saw a sign on the door. What did the sign say? “Wednesday: Closed”. As a result, my mother decided to just cut my hair herself.

As I got older, I was better able to tolerate going to the hair dresser, but it was still not a fun experience. The hardest thing about getting a haircut for any kid (and especially a neurodivergent kid)? Holding still! Sitting in that chair for what seemed like hours while the hairdresser (who was usually a lady) would snip away at my bangs, making me look acceptable again while my mother would tell me to stop twisting and squirming. Finally, the hairdresser would hold up the mirror so I could see the back of my head – something that I did not care much for myself, but it meant the whole ordeal was over.

Throughout the 90s, I often sported a bowl cut, for various reasons – family legend states that my mother still has the bowl she once used – and I was occasionally picked on in school (as in, picked on more than usual) for it, but typical of people on the spectrum, I was hesitant to change. In high school, the bowl cut finally gave way to other styles, though I did not always participate in the decision making. For a while in my senior year, for various reasons, it even grew quite long and got in my eyes (which I absolutely hated) and I was often begging my parents to set me up for a hair appointment.

After high school, I was off on my own and in college, partaking in the activity known as “adulting”, such as preparing my own meals, knowing how to use a credit card, and of course getting a haircut. To this day a trip to the barbershop results still in that difficult decision of what style to get, especially when it involve going to a barbershop where “just the usual” is not always an option.

Getting a haircut was just one thing I hated as a child, but what other things I hated. In a previous post I mentioned that I initially hated birthday parties, because of the singing, and what happens when you combine haircuts and singing? Barbershop music.

It was at an autism talent show hosted by the local Center for Autism and Related Disabilities office where I discovered that the local chapter of the Barbershop Harmony Society was performing, and among their members was a young man on the spectrum – he did not talk much, but he did know how to sing, and when it came to knowing the words and notes to every song the chorus performed, he knew it all. For those who were unaware, Barbershop is a style of four-part harmony that has its roots in the era when the local barbershop was a more than a place to get a haircut (and in the early days, medical procedures), it was a social hub.

Thinking that singing for others might actually be fun, I later went to one of their rehearsals. It was there that I met a bunch of fun-loving guys from all kinds of backgrounds who loved to sing and like a new student attending Hogwarts for the first time (Ravenclaw for life!), the director found that I fit well into the bass section. Amidst ringing chords, banter, and the occasional Dad joke, we had a great time . I even had the opportunity to sing in a quartet with that young man on the autism spectrum, including at subsequent autism talent shows and made some great friends doing it.

In conclusion, if you’ve looking for a way to make new friends in a supportive and inclusive environment – most chapters welcome ladies too) – as a “social hub” barbershop might be the answer. Just don’t ask any of them to give you a haircut, as they probably won’t do a very good job, and with that, on this April 11, I wish you all a happy National Barbershop Quartet Day!

April 2 marks World Autism Awareness Day. The day was designated by the United Nations to increase awareness of autism and how it affects people. For many people in the neurodiverse community, it is also somewhat controversial due to it not always promoting acceptance (and even pride) as well as awareness. In addition, the “light it up blue” campaign makes many on the autism spectrum cringe due to its association with an organization that I will not name here (but many of you who are on the spectrum will know exactly what I am talking about).

One such alternative to “lighting it up blue”, is “red instead”, where those who support the cause will instead wear red. This was something I was able to do really well as I wore red a lot growing up, and little did I know that this was going to be an essential part of my first real job.

Job-hunting is a difficult task for anyone and as of this writing I am seeking a new position of my own after a recent company restructuring meant that I lost my previous role as a software engineer, and this takes me back to my first job search in my first year in college. The year was 2002 and I was home for the summer. While it would have been nice to stay at home playing Doom deathmatches with my brother all day and driving my parents crazy, I knew that it would be better to actually try and get a summer job.

I applied at several places, including Circuit City (as I was a computer nerd who knew a lot about electronics and could also benefit from the employee discount) as well as Publix (a major supermarket chain in Florida who will hire people of any ability.) Being the shy introvert I was, I figured that I would do best in the backroom where I would not have to worry about interacting with people

Unfortunately, neither store got back to me, so I applied at other places. The next option was Target, a national retail chain known for being slightly more upscale than Wal-Mart and having stores where everything (including the employee uniform) was red. My brother had worked there and he did a reasonably good job there so I also had a good reference. Despite being an extremely shy introvert, the manager interviewed me on-the-spot and asked if I wanted to work in my brother’s position (the snack bar). I told him that I would prefer working in the back but was open to options.

The following week, I went in for my first day of work. Not in the backroom under fluorescent lights on maximum hum-buzz or even in the snack bar, but out in front of the store in the sweltering Florida sun (and regularly scheduled thunderstorms) retrieving shopping carts – so much for not being around people – I was often the first person customers (or in Target lingo, “guests”) would see when coming to the store and the last person when they left. Training was very basic – I was assigned a mentor and he showed me the ropes on the first day and after that went into the store to help out on the registers leaving me on my own. The work was very strenuous, and while I did not have a driver’s license, I did get certified to use the cart machine, which did the heavy work – at least when it did work. The culture of that particular store encouraged pushing 60 carts or more at the same time (company policy was only to push 25).

As physically demanding as the job was, it helped me open up to people, as other duties of that rule also included helping load up vehicles and helping people who stopped me on the floor. My supervisor suggested that I get trained on the register to pick up more shifts, and I got quite good at it. I may have been a little bit “robotic” and could not sell the store credit if my life depended on it, but I became one of the fastest cashiers in the store (often having to wait for the slow POS software to catch up with my scanning) and was very accurate in making change. Running a register also exposes one to all the unique characters in society, such as cell phone zombies, people who think they are funny by saying “it must be free” when an item does not scan, and the occasional guest that modern society would label as a “Karen“. Welcome to Retail!

One of the downsides of retails is the unpredictable schedules and late nights, and even though I wanted full-time hours, I did not usually get them and I had to pick up shifts when they became available. As part of this, I ended up cross-training in a variety of roles around the store, including the snack bar (Food Avenue) and the sales floor. I also earned a reputation for my technical abilities, such as fixing computer equipment.

My knowledge of technology was helpful when I learned the photo lab – being an aspiring photographer myself who learned to develop film in high school, I was able to keep the customers happy and the equipment running. Film chemistry would go out of balance, computers would crash, and printers would jam, and sometimes this meant having to explain to customers why their prints were not ready. Unfortunately conflicts did sometimes happen as some of my supervisors did not understand the technology very well and some miscommunication after a piece of equipment briefly going down actually resulted in me suffering a mental breakdown. Unlike the classic autism meltdowns I sometimes had as a kid, as an adult I am much more likely to shutdown and withdraw. Ultimately this lead to me taking a couple of unpaid days off and transferring to a different department.

Several months later, with multiple university degrees in hand and another long job hunt, I was able to land a new job that better suited my skill set (and paid a lot more) and I clocked out for the last time. I still came to shop at the store on a regular basis and meet up with my former colleagues, especially the older gentleman who was cart attendant and loved his job. He was easily entertained and would crack up whenever I jokingly told him about that cart I saw next to the dumpster behind Wal-Mart on my way to the store that he needed to go and retrieve.

While the pay was marginally above minimum wage, shifts not always easy to obtain, and promotional opportunities rather limited, working retail did help me open up to other people, and it was my first real job that paved the way for other careers. It also got me through school and paid most of the bills. At the same time, I was able to work with many good people, some of whom I am still in contact with today. These days I almost never wear red, but April 2 is still a day for #redinstead

For parents of neurodiverse kids, air travel can be a challenging endeavour. Planes are big and loud (though not as loud as in the early days of jet travel), and for the kids, it is an unfamiliar environment. Going to the airport, checking, going through security screening, as well as lots and lots of waiting, and that is all before even getting on the plane. I also recall having an unusual phobia of luggage carousels, but that is story for another day. Some airports even provide special facilities to assist with needs like this. The fact is, air travel can be test of patience for even the neurotypical.

My first time travelling by air took place in the mid 1980s, when I was still a very young toddler. It was a medium-haul trans-Tasman flight from Wellington to Melbourne. In this era, in-flight entertainment was also much more limited at the time – no WiFi, no movies on demand, and no seat-back trivia games. If you wanted music and the batteries in your Walkman ran out, you could listen to a preset tape via a set of pneumatic headphones that resembled a doctor’s stethoscope.

Although I was too young to remember that flight, my mother certainly did remember it. She had me sleeping on a sheepskin rug on the floor…at least that’s what she thought. In an era long before airlines charged an arm and a leg for checked luggage, people had less carry-on baggage and economy passengers were not packed in like sardines either. This meant that there was plenty of room down there to spread out and get some rest, but as you may or may not know, sleeping is something that neurodiverse people are not always very good at, and on waking up, I set out on an adventure to some place exciting, like the galley, the toilets, or maybe the cockpit (this was pre-9/11 of course). My plans, however, were foiled, as after crawling under several rows of seats, a flight attendant had found me, and brought me back to my mother.

I did have several toy planes growing up, including the Fisher Price jetliner, and of course, Lego. I recall once building a “plane” out of Lego with my dad that depicted my family flying to Christchurch to see Grandma – with me at the front as the pilot. Several years later, in school, one of our class studies was about going to the airport, and we even did a field trip there. A highlight, however, was at the age of 10, when I went on a Qantas flight with my brother from Sydney to Christchurch – once we had landed, I excitedly told my mother about how we flew in a “Boing_[sic] 747″. Prior to that, the Queen of the Skies was something I had only seen in books and on TV.

The next major plane trip I embarked on was when my family moved to the US, which involved flying three legs on United, starting with a 12 hour leg on a 747 from Auckland, with layovers in LAX and Orlando. With a handful of Roald Dahl books, and my brother’s Game Boy, we travelled over 14,000 km (about 8800 miles) over the course of over 24 hours, and in true neurodiverse fashion, I did not sleep a wink.

Over the next few years, I did not get to fly very much aside from a short trip to the Bahamas (on a 737-200).

In 1999, I got to take a transatlantic flight for the first time with Virgin Atlantic (747s) and later with British Airways (777). The final leg on the return trip was on board a Beechcraft 1900, a small 19 seat turboprop that would make even a City and South London Railway tube train feel spacious.

Like other interests I had as a child, my interest in planes waned, but never went away. In fact, when I was in graduate school, the professor I was working with offered me a ride in his Piper Cherokee. Several days later, I was riding my bike out to the airport to meet with a flight instructor with his Cessna 172, and that is when things literally started to take off on my journey towards attaining a private pilot license.

Unusually, piloting a small aircraft is something that’s just perfect for some types of neurodiverse minds – there are well defined processes and procedures – especially checklists – and flying with instruments requires a lot of precision and the ability to focus on the task at hand.

Flying, however, is as a rather expensive hobby, and while autism and mental health medications do not automatically disqualify one from getting an FAA medical certificate, they do create extra bureaucracy.

Although I have not piloted a plane recently due to the above reasons, I still have a fascination with these big machines, and in the event that a flight attendant asks “By the way, is there anyone on board who knows how to fly a plane?”, I might be able to help.

If there was one thing I could not stand as a child, it would be, believe it or not, birthday parties. Sure, for any neurodiverse person, they can be overwhelming with all those people and all that noise, but I hated birthday parties for a different reason – and not just they were usually for someone else.

That reason: The SINGING. Someone, usually (and hopefully) a parent, would light the candles and everyone would start singing that song that baffled copyright lawyers for decades: Happy Birthday to You and the birthday boy (or girl) blew out the candles. Thinking back, maybe I had good reasoning for hating birthdays. After all these were friends and family, not professional singers, which I will get into in a future post.

My fourth birthday was fairly low key with a family dinner at Cobb & Co with ice cream cake – I still have memories of that day. I was at home with my dad when my mother came in with a box of presents, including a “talking” teddy bear that could record short audio phrases. Despite my parents intention of getting the bear to help me become more verbal, the audio recording device (which could be accessed by a zipper on the bear’s bum) mysteriously went missing, resulting in the former talking bear becoming non-verbal. Verbal or not, that bear was well loved and I often would chew on its button nose.

My fifth birthday, however, was another story. In New Zealand, a child will typically start at primary (elementary) school on his or her fifth birthday after attending kindergarten (or “kindy”) for a year or so. I was no different – kindy was a place where kids could do things that kids do – play with building blocks, make arts and crafts, and eat play-dough. My two teachers, Margaret and Diane, realized I was a little bit different from the other kids. After injuring myself with a stapler (children were allowed to be curious around “dangerous” office supplies without constant supervision back then), one of the teachers got one of the hand puppets and through the puppet challenged me to build them a house with the building blocks while the other kids were away, an activity I did not partake in because the other kids were always playing with them. She was amazed at what I was able to build and actually instructed the other kids to leave it standing during clean-up time.

Unfortunately, the inevitable came to be. I was going to turn five whether I wanted to or not. I had seen what happened to those who came before me and I dreaded that day. At kindy, when someone turned five and was going to start school, it was a big deal – the birthday boy or girl would decorate a cardboard crown (similar to one you might get at Burger King) with stickers and the teacher would bring out a plastic cake with candles to blow out. Everyone would sing Happy Birthday, and we would never see that person at kindy again…and it was going to happen to me.

Naturally, I was terrified at that prospect and had a bit of a mental meltdown, but the teacher intervened. She got out a small tray and some play-dough and got me to make a small “cake” with five candles. With the talent that only a good kindergarten teacher could have, she was able to calm me down and by the end of the day, the other kids were singing to me, and I was okay with it.

At the age of six, I got to have a “regular” kid’s birthday – despite having just recently transferred to a new school, I picked out a few kids in my class to be my “friends” and we went out for a birthday lunch at our favourite family restaurant. We had a great time, and unusually for a neurodiverse kid, I even got invited to their parties too, though I was a little uncomfortable going to the party where everyone had to dress up as pirates – cosplay is fairly popular among neurodiverse adults these days, but playing dress-up was something I did not like as a kid. I was also not very good at choosing presents either, as often I thought of getting things that I would like, rather what my friends would have liked.

That sixth birthday party was my first, and ultimately ended up being my last too. From the age of seven onward, birthday parties stopped being a thing for me. I did go to a few friends’ parties, but did not have any more birthday parties of my own. I believe there were several reasons for this. My family moved many times, and every move meant changing schools. For a neurotypical kid, this is no big deal – they just make new friends, get invited to their parties, and move on. For me, that was not an option – as the socially awkward “new kid”, being accepted by the other kids was hard, and getting them to become friends is even harder. I became somewhat of an outcast at my school, and was getting picked on even by kids I did not know. No kid would even want to play with me, let alone invite me to their birthday party.

Looking back, that might have even been for the better. I still got to celebrate birthdays, but usually as something low-key with family. There was usually cake involved (including a Thomas the Tank Engine cake when I turned seven that I remember fondly), and of course presents. As as adult, I actually frequently find many parties to be quite boring, especially when there’s a lot of people (especially those I do not know), alcohol, and so much noise that it’s impossible to hold a conversation with the person next to you.

Depending on who you talk to, mention the term “autism” and different things come to people’s minds. People like Temple Grandin or Albert Einstein. Film and TV characters like Julia on Sesame Street or Sheldon from Big Bang Theory. For years, however, people thought about Dustin Hoffman’s character Raymond from the 1988 movie Rain Man.

Raymond is depicted in the movie as being on the autism spectrum, lives in a mental institution, and has very strict routines. Maple syrup has to be on the table before the pancakes, and he absolutely must watch Jeopardy! at 5. He also has some unique savant abilities, such as being able to do complex calculations in his head and recall specific details in the past.

Although the character in the movie is on the spectrum, he is actually inspired by Kim Peek, who was neurodiverse, but had a different condition. Instead, he had what was believed to be FG Syndrome, a genetic condition that resulted in a very abnormal brain structure, notably absence of the corpus callosum, the large bundle of nerve fibers that joins the two hemispheres of a “normal” brain. The condition is also associated with some physical deformities, especially relating to the GI tract. As with other types of neurodiversity, his brain formed neural connections differently from most people, resulting in a brain that had unique abilities and an excellent memory. He could speed read by scanning the left page with his left eye and the right page with his right eye and could recall precise details. He could also perform calendar calculations and tell people the day they were born given a date.

The movie’s producers did, however, draw inspiration from others as well, so Raymond was likely a mix of autism and Peek’s personality – there are definitely aspects of the character that draw from autism, and there are some aspects of FG Syndrome that also appear in autism.

While most people on the autism spectrum do not have savant abilities, they often have excellent memory and can remember precise details. Peek also had macrocephaly (larger than a normal head size) and that is commonly associated with some genes that can contribute to autism. It also makes shopping for hats a little more challenging – I personally recall an experience at the bike shop as a kid when we were shopping for helmets – my brothers needed to have extra foam pads in their helmets for a better fit, however I did not.

Raymond’s strict routines, such as watching certain television programs at a specific time, and only wearing underwear bought from Kmart are likely drawn from the producer’s work with people who were actually on the autism spectrum. The need for routines is more commonly associated with the autism spectrum than with FG syndrome.

Now, if you’ll excuse me, I’ve got a very shiny train to catch…and by the way, K-mart sucks.