Kol Nidre for Atypicals

“May the people of Israel, all of them, be forgiven,

including every stranger in their midst,

for everyone of them has their faults.

Pardon the iniquities of this people,

according to your abundant mercy,

just as you forgave this people since the day they left Egypt.”

These words come from the Kol Nidre, the touching (beautifully chanted) liturgy that starts the 25 hours of services of the holiest day of the year for the Jewish people: Yom Kippur, the Day of Atonement.

Whether we are religious or not, believe in God or not, this formula in Aramaic that rings in this special day has a message that does more than asks a deity to forgive personal faults. It sets a time aside to give pause to everyone to ask themselves if they realize that ‘everyone has their faults.’

As a person on the Autism Spectrum it can be too easy for me to slip into seeing things as strictly black and white, right and wrong, as a lie or the truth. This can mean I can sometimes see neurotypical people’s behavior as confusingly brutal, judgmental, malicious, and even dishonest.

First, this is not to let people off the hook for when they are acting brutal, judgmental, malicious, and dishonest. People do act this way. We are all capable of acting this way, not only neurotypicals but people with ASD too.

However, at times because people who are not on the Spectrum tend to add a “second layer” of meaning to their words or behavior, thus not being outright literal when they speak or act, it can be interpreted as hiding the truth or lying to someone who is on the Spectrum. We generally just come right out and say things and do things on the surface. Anything else could be interpreted by us as dishonesty. In light of this we might be quick to judge someone as being dishonest when in reality they are just being a typical neurotypical–not dishonest at all.

We can all jump to conclusions. We can all judge the other for being in the wrong. We all search for scapegoats to blame. Funny, but the term “scapegoat” comes from Yom Kippur, the ritual when the Jewish high priest used to symbolically place all the sins of the Jewish nation upon a goat and send it off into the wilderness, signifying that all of our sins have been done away with.

Now I don’t believe that God is some supernatural “Guy up in the sky” that grants requests if you’re good and will punish you with eternal damnation if you don’t live up to some certain code of conduct. And I don’t see sins as something we necessarily do to “piss off” this Deity who sits around on a throne all day who has nothing better to do but to mark down demerits for what we did so they can be read back to us one day after we die.

But we often fail to do what’s right, toward our neighbor, in the world, even in the way we treat our bodies and ourselves. As people with autism we can sometimes put too much pressure on ourselves to constantly fit in. Sure it’s great to hit new goals and keep pushing forward, but we also need to know our limits and prevent burnout. We also need to learn when and how to ask for help. And we need to learn how to forgive people when they don’t get things right on how to deal with us so that we can keep lines of communication open. We need friends, we need relationships, close ones, and often that means overlooking faults, forgiveness, even atonement for past transgressions of our making.

You don’t have to be Jewish to make this Yom Kippur mean something significant to you. You don’t even have to believe in God or chant Kol Nidre or anything like that. But perhaps you might take some time today or this week to find some quiet time, be with yourself, center yourself in the universe, and just let go.

Let go of where you put too much pressure on yourself. Let go of what you haven’t forgiven. Let go of where you failed. Find ways to start anew. Find ways to be more patient, more trusting, more forgiving. Maybe you can write a Kol Nidre of your own, for remember:

May the people around you, all of them, be forgiven,

including every stranger in your midst,

for everyone of them has their faults.

Advertisements

The Second Grade Safety Patrol vs the Halloween Snitch of Oak Park Elementary School, Part 8

The Magic Pumpkin

pumpkin-patch-3-1318514-1278x855

I was a loner when it came to holidays as a child.

Let me make this clear: I was a loner, not lonely. I liked to bring in each holiday with a set of annual rituals that made the special day even more special in my eyes. To me it seemed as if regular people never took holidays as serious as I did. These days were filled with magic if you just let yourself breathe their spirit in. Most folks, it seemed, never appeared to do that.

At least that was the way it was in my home. My family was not big on celebrating much of anything–that is unless there was a house full of people to watch you celebrate it, and be impressed by how fancy or “mod” in the way you were doing it. My mother and father were all about impressing people with fancy parties with lots of grown up guests where we kids (my two brothers and yours truly) had to stay in our rooms or in the playroom with a babysitter or nanny.

Yep, a nanny. The folks had money. And there is a difference between a babysitter and a nanny. The nanny lives in the house and is the babysitter full time (except for her time off), and the babysitter is hired for when the nanny is off for the evening of the day. A tough rich kid life, I know.

My favorite grown-up parties that my parents would hold were the ones where they would ship us boys off to stay with Gran’ma and Gran’pa. But that didn’t happen too often. When it did, however, and it happened on the weekend, Gran’ma would light candles and we would observe Shabbat. We would have special food and treats and have fun on Saturday, and it would spill over onto Sunday when later in the afternoon our parents would come and pick us up and bring us home. Those were awesome weekends, especially since my grandmother was an excellent cook.

Halloween never seemed to be on my parents’ radar. It didn’t have anything to do with the fact that we were Jewish. A lot of Jewish folks don’t do Halloween, and a lot of Jewish people do. My folks were quite secular. They even celebrated Christmas and set up a Christmas tree in addition to Chanukah (and as they years went by sometimes forgot totally about Chanukah and eventually gave up on giving us gifts on Christmas too). It was all about the decorations and the parties for them. People loved their Christmas holiday parties and New Years Eve bashes, so this is what they began to concentrate their efforts on.

Therefore, if I was going to have any fun of my own when holidays came around, I had to come up with my own customs and traditions. This was especially true for Halloween. Being that it was just 4 days away, I was already in the spirit of things. So this meant I was ready to begin my celebrating in my own special way.

Two and a half blocks from my home and from Oak Park was a small, family-owned store named Oscar’s. It had been there since my mother was a little girl. The outside of the building was a white stucco, and upon these walls were advertisements painted for Frostie root beer and Butterkrust bread. While the inside was usually somewhat dark, with one or two dim fluorescent bulbs flickering overhead as the only light for the two rows of few groceries available in the cramped space of the store with wooden floors, there was a generous candy section as well as a penny candy counter behind class that Oscar himself (now quite an old gentleman) would measure out for you and toss into paper bags for you to take home. One could get quite a mouthful of candy for just a quarter in my childhood days.

As usual, since Halloween was upon us, Oscar had pumpkins for sale outside of the front door to his store as did each year every late October. They sat in a modest pile in a wooden bin on four legs, green paint peeling from neglect, with the words “Drink Coca-Cola” fading and chipped away on the front of it.

I had saved allowance money over the weeks from the summer and from among the lunches I had skipped at school to buy a pumpkin for this Halloween. We didn’t hang up Halloween decorations at home, even though I would beg my parents to do this. It wasn’t that we couldn’t afford to, goodness no. In fact, I didn’t know what the reason behind their not giving in to my yearly request was. They always bought me a Halloween costume. They sent me and my brothers trick-or-treating under the careful eye of Aunt Tilda every year (except for that one where she kept insisting she wanted to do so as she rode about upon one of her pet ostriches that she got from an old beau when she lived in South Africa–a wild story for another time).

And to be honest, by the time I was in the second grade I had never seen or managed to carve a genuine jack-o’lantern. So I was determined to make this a new and lasting annual tradition for myself. I was going to pick the best pumpkin Oscar had in his pumpkin bin, purchase it, bring it home, hide it, carve it during the day on Halloween, and then carry it around with me on Halloween night with a candle in it as I went door-to-door for treats and finally to the Halloween gala at the Oak Park community center–that is, if there wasn’t any trouble about from Sally Silver and the Baxters at that party.

Anyway, I was quite proud of myself as I came down the street with my new purchase of what I felt was the perfect Halloween pumpkin. It was just the right shape, just the right shade of orange, and it even had a green and curled stem on top. This would be perfect to carve up. Everything seemed right in the world for a change as the autumn breeze blew fall-colored leaves down the sidewalk at my feet.

Yet as I neared my house I figured it would not be a very smart thing to just walk straight in with my new Halloween tradition. My two older brothers were often always on the point of finding a reason to tease, trick, and pick on me. And there was no telling how my parents would react. “No, no!” one of them would probably say. “You’ll cut off one of your fingers if you try to carve that thing.” And before you know it, they’ll be tossing it into the garbage.

So I decided to sneak around my house the long way, go into the backyard, sneak about the bushes, and see if I could get to Robbie’s treehouse and find a hiding place for it in there. I would let Robbie know I had dropped off my pumpkin there the first chance I got.

Upon reaching the bottom of the tree, I heard voices coming up from up above.

“It isn’t fair,” I heard Barbara Jeane say. “We didn’t do anything, and you guys treated us like we were bad guys!”

“Yeah!” Ted Joel and Joe Peso chimed in.

Veronica sighed. “Uggh! How many times are we gonna have to say we’re sorry?”

“We didn’t know who we could trust,” said Robbie next.

I called up after hearing my buddy’s voice. “Are all you guys up there?”

The bottom hatch popped open and Sammy’s face appeared with a smile. “Hi, Carl!” he said. Then his eyes got wide. “Look guys! Carl’s got a Halloween pumpkin!”

Soon the faces of everyone in the Second Grade Safety Patrol was glaring down at me: Robbie, Veronica, (of course Sammy) Joe, Ted, and Barbara Jeane Meadow.

“Nice pumpkin, Carl,” said Ted Joel, “but I think we’re in the middle of an argument.”

“What about?” I asked.

“Being accused of being a double-agent snitch for Sally Silver and the Baxter twins,” answered Barbara Jeane, “that’s what!”

“I dunno,” Joe said. “I probably would have done the very same thing if I was in their shoes.”

Barbara Jeane and Ted gave Joe a cold glare.

“What?” he asked in reply. “My mom says I always have a guilty look on my face all the time.”

“What you doing with the pumpkin, Carl?” asked Robbie.

“I need to hide it here. I can’t keep it at home. I want to carve it for Halloween night. Can I keep it in your treehouse?”

Robbie signaled for me to come up.

The debating continued. Ted, Barbara Jeane, Joe (just a wee bit) were upset that they had been left out of the group and accused of assisting the spoiled brat Sally Silver. Robbie, Veronica, and Sammy were doing their best to appease them. I felt like I had to do something to stop the fighting. After all, it had all started with me as the subject of the so-called snitch and the bully they were working for, Sally Silver.

“Everybody stop arguing!” I shouted.

The treehouse went silent.

“You have good lungs,” Ted Joel commented on my volume.

“Thank you,” I replied. “Now listen. The reason for all this has to do with me. I am the one being teased. Sure, Sally Silver and the Baxter twins have now also started picking on some of you too, but this all began because Robbie and the rest of you started to stand up for me. I don’t want you to lose your friendships over me.”

I set the pumpkin in the middle of the treehouse floor.

“This is our friendship pumpkin,” I said. “We’ve been friends a long time. I trust all of you. I know none of you are trying to hurt me. Joe, Barbara Jeane, Ted, I trust you. You guys are not snitches. Sammy, Veronica, Robbie, you have to trust them too. So all of us are going to forget about the past and work together and swear on this pumpkin to stay friends. We’re gonna let the magic of the Halloween keep us together.”

I put my hand on the pumpkin. “What do you guys say? Are you in?”

For a moment there was nothing but strange looks and quiet.

“C’mon,” I repeated myself. “Are you in?”

Slowly one by one everyone else got down on their knees like myself and placed a hand on the pumpkin.

“I believe this pumpkin is magic,” I said.

They all repeated after me: “I believe this pumpkin is magic.”

“I believe this pumpkin is magic,” I said louder.

“I believe this pumpkin is magic,” they repeated louder.

“I believe this pumpkin is magic!”

And they shouted: “I believe this pumpkin is magic!”

“There,” I said. “It’s done. We can’t go back. We’re friends forever.”

There was a new feeling in the room. There were smiles. There was instant trust.

I looked up at Robbie and nodded. “Now, Robbie,” I said. “Tell them about the plan.”

“There’s a plan?” asked Barbara Jeane.

Robbie nodded. “Yes. Thanks to Carl’s aunt Tilda. We have an idea on how to smoke out the snitch and get back at Sally Silver.”

“And more than that,” I added. “I think I already know who the snitch is.”

Robbie looked back at me with surprise. “You do?”

The High Holy Days on the Spectrum

Jpeg

The second season of the Netflix series Atypical premiered this Friday, and its first episode began with a flashback focusing on the main character of Sam Gardner (Keir Gilchrist) when he was a young child at a birthday party. While the guests were singing “Happy Birthday,” Sam suddenly started to scream out loud and react in a way that his father believed was nothing more than a childhood tantrum. Sam, obviously, had not been officially diagnosed as having autism at this point, the central theme upon which the series revolves.

Attending an event that most people look forward to, a celebration that carries meaning with traditions and customs and rituals filled with fun, laughter, song, and often out-of-the-ordinary noise is often what makes birthdays and holidays things people look forward to. But when you are on the Spectrum, this can make these events equally nerve-racking.

Take for instance the celebration of the new year. In most civilizations it usually comes about with a lot of noise. Every January 1st, firework displays around the world announce the changing of the calendar year. The Chinese new year also uses fireworks to not only celebrate the year’s arrival but to drive away evil.

In my culture, we also use a lot of noise. We use a shofar, a hollow ram’s horn, to announce the new year on Rosh Hashanah. The horn is blasted loudly, in fact about 100 times over the course of the day.

As a Reconstructionist Jew, I approach Judaism not so much as a religion but as the people I am a part of. It is the culture, the civilization, the world of tradition, food, art, even the different races that make up the tribe that calls themselves “Jewish” that makes up Judaism.

Being a very old civilization, we come from a time when nations carried around a religion much like countries today herald patriotism. Ancient civilizations around us didn’t have flags to wave about, they had gods. Being that our civilization comes from this period from way back when, it has this type of religion as a facet to it.

Regardless of this, holding on to all the various aspects of Judaism that have meaning and can be made to work in our day is very important to me. But sometimes, like poor little Sam Gardner in the opening scene of season 2 of Atypical, I myself always can’t fit into our tribe in the way I would like.

To illustrate: Nothing brings Jews into the synagogue like the High Holy Days. People who don’t normally step foot into Temple will definitely make sure they attend for Rosh Hashanah (the Jewish New Year) and Yom Kippur (the Day of Atonement, the holiest day of the Jewish year). While not technically part of the High Holy Days, since it follows about a week later, Sukkot, the Festival of Booths, ends the season, sort of like Labor Day unofficially ends summer. It’s a week of party fun after some somber reflection, so why not stick around for that too?

But those first two Holy Days are held inside synagogues wherein extra seating is suddenly arranged. Parking lots are crammed. You have to arrive an hour or maybe two earlier than usual to get to a seat that is actually saved for you by ticket (usually). Rosh Hashanah is noisy, and then Yom Kippur is a day of fasting and all-day prayer where people cannot bathe or perfume themselves, etc., and you can just imagine what something like that can do to a person on the Spectrum that is sensitive to odors and cannot miss meals (my system just cannot endure that).

So instead of being able to be a part of the community on these two very important days, I find myself having to withdraw. Judaism is about being part of the tribe, about community. But often I just cannot be that. The community can be too loud, too harsh, not considerate enough to the needs of a person on the Autism Spectrum. I can’t blame the tribe. Jews are loud. Ever seen a Jewish comedian? Now multiply that by a synagogue full of them.

So I find alternative ways to celebrate. I find a few friends who can observe with me, my way. I make a dinner with nice music of the High Holy Days in the background and traditional foods for the Jewish New Year and invite not just Jews but non-Jews to the experience.

On Yom Kippur I search for alternatives to the traditional service. Last year I found various versions of the liturgy sung by famous cantors and listened to that at various times throughout Yom Kippur, from Kol Nidre in the evening to various prayers during the next day. I also had a fine dinner with friends for Break the Fast, even though I could not fast myself.

Sukkot I can do. It’s outside, it’s celebrated in a hut-like structure called a “sukkah,” you can visit your friends in their sukkahs, and it lasts 8 days. If things get too hard to handle, you can always go hide in your own sukkah or somewhere else.

I gather it’s no different whether you’re Jewish celebrating the Jewish New Year or Christian celebrating Christmas or anyone else facing any other type of gathering. Loud is loud, crowded is crowded, flashing lights are flashing lights, and offensive odors are offensive odors. We all belong to groups, communities, a people, have customs, and are often expected to do this or that and be here or there. And when we are on the Spectrum, people may not be aware how close to the impossible they are asking things of us when they tell us to mark our calendars.

But we sometimes pull off close to the impossible everyday, don’t we?

Is it Asperger’s or Austism?

img_20180830_174205

A few days ago someone stated that after reading my blog they were sure I had Asperger’s and not Autism Spectrum Disorder.

That gave me a bit of a chuckle.

I live in the United States where it has fallen out of medical practice to use the term Asperger’s to refer to those who (in the common vernacular) are often noted as being persons on the “high-functioning end” of the Autism Spectrum.

First, there is no genuine medical term as “high-functioning autism.” Whether someone is “high-functioning” or not is really a misnomer based on the person applying the label. I am generally referred to as “high-functioning” by neurotypicals who catch me on a good day and find that they can communicate with me. Catch me on a bad day at a bad time and I may not seem so “high-functioning” at all. Judge me by my mathematical skills any day, anytime and I would never be considered “high-functioning,” this despite the fact that I am also a savant.

And while we’re on the subject, suffer me while I digress just a moment on this…

Not all autistic savants are like the toothpick counting character in the motion picture Rain Man. And not all persons on the Autism Spectrum have savant syndrome. In fact, savants are extremely rare, so much so that it is estimated that there are only about 100 autistic savants alive on earth today. Some of these have gifts in mathematics, some in music, some in art. I have gifts in language and in the field of stereoscopy or 3D. I have difficulty adding and subtracting, and even have a form of “number dyslexia” called dyscalculia which makes it hard to read numbers correctly. But I can quickly learn any language I expose myself to and master it on my own. I also have similar gifts in music, typography, and design.

“But,” despite all this, some have still asked, “do you have Asperger’s or Autism?”

The answer I give is: Yes.

Why?

Recently the American Psychiatric Association reclassified the system that previously separated the various subcategories of the autism spectrum, including Asperger syndrome, and included all of these into the broader term of Autism Spectrum Disorder or ASD.

What I have would have likely been termed as Asperger syndrome under the previous diagnostic system, but now is simply called ASD. It is still popular in some circles and countries to use the term Asperger’s instead, but not in the country that I live in.

So if you’re asking the question in the title, the answer may just have to do with where you live or what year you got a diagnosis. Some Americans my age (I’m 51) who share a similar spot on the Spectrum with me were diagnosed as children (unlike myself who was diagnosed as an adult). Thus they got the diagnosis of Asperger’s. They still refer to themselves as having Asperger’s or as “Aspies” even though the term isn’t used anymore in official American diagnosis.

This is why in this blog you will note that I am used to the term “autism” and tend to refer to myself as “atypical” instead of using the terms Asperger’s and Aspie. I feel using the term of “Aspie” for myself as somewhat sacreligious perhaps, belonging to those who came before me, not mine to use unless I get “permission” from the Aspie community. Funny, huh?

But it is still who I am, technically speaking. And whichever term you use or prefer, these are still just words. “A rose by any other name…” as the saying goes, am I right?

What really helped me was getting the official diagnosis, knowing that I actually was specifically as different as I felt, that I just wasn’t failing in life or imagining that I was feeling different was somewhat empowering. My problems communicating with others and getting frustrated with people as a result weren’t personality flaws. I didn’t understand other people for a genuinely specific reason. I wasn’t defective, stupid, or crazy. And I wasn’t this horrid boy that deserved all those years of physical abuse that my parents poured out on me.

This thing about me, call it ASD or Asperger’s, whichever, was real. Instead of feeling embarrassed, I did indeed feel empowered by the diagnosis.

I remember one woman who, when I disclosed it to her, said that I was “shortchanging” myself by speaking of myself this way. I was quite surprised to hear this come from her. She was a schoolteacher on top of everything, and this was her opinion of my disclosure. To her it would have been better for me not to say a word about my ASD because identifying oneself as having autism or Asperger’s made one look lowly in her eyes. Better to keep that type of thing away so nobody thinks lesser of you in her opinion.

Sadly, she is not the only person in my circle who has felt this way. Some people who were friends thought I was lying. Others simply disappeared.

Still my empowerment continues. I knew I had been battling with something all these years, and I also knew I was not giving up in the fight too. The diagnosis was confirmation of that. So losing a few so-called friends was nothing in this process. Too bad for them.

So whether you prefer the term Asperger’s or Autism, I am still strong in each step forward I take. I may take those steps with a clumsy stride from time to time. I might even be a little confused when I take them. But I remain determined to push forward, determined and empowered and proud to be who I am.

Very High Anxiety

high-anxiety-11

Like most people on the Autism Spectrum or those with Asperger’s, my anxiety levels are normally quite high.

They are Cheech & Chong high, and that is putting it lightly.

If you are atypical, that comes at no surprise. You are probably nodding your head at this because you can relate. It comes with the territory.

Dealing with anxiety is one of my so-called “toughest nuts to crack” for me. Mine is not easily soothed with prescribed medication. If I do find something that helps it, it only goes away while I am engaged in that certain activity.

I needn’t worry for the anxiety to come either. It is just there. I don’t know why. It scrapes at me from the inside while life scrapes at me from the outside.

And it is not the only thing I have to deal with either, like most of my atypical comrades out there. We have a plethora of trials and tribulations falling over us like a mixture of various shapes, colors, and pieces that come in a child’s breakfast cereal…except we’re the bowl, and none of this crap tastes very good–or is very good for you. (That’s what the name of our ASD/Aspie breakfast cereal would be called: Trials and Tribulations. Fortified with social anxiety, sensory overload, and nine very public meltdowns.)

Thus at least I find myself doing something productive to deal with it all. And it seems as an adult with ASD I have doctors and specialists agreeing with my choices, even if I came up with them on my own.

Since my stim of choice as a child was rocking, being in motion has always been the most soothing for me. So physical exercise is the best way for me to deal with things. Jogging and weight training on a regular basis (to music, no less) for a couple hours a day keeps the anxiety demons at bay.

As a Reconstructionist Jew, I use the ritual and prayer of Judaism to keep an organic pulse to the week and day, an order that I can rely on while not going overboard and becoming too affixed to routine. The spiritual-meditative side can also bring in a sense of relaxation as well, especially at the end of the day and the end of the week with the coming of the Sabbath.

Then there is something that has been hard to do, even though it is something I want and desire most of all: association with others. I have friends, but for a while I closed myself off from others because it was easier than having to face the difficulties of communication. Now I have forced myself back out into the world and let those closest to me know where I am, what my needs are, and how they can help and be there for me if they wish (and how I can be there for them too). I can learn to be outside of myself and not always be thinking about my needs or caring for myself, and can become interested in someone else, and this can take me away from my anxiety. Or, simply put, someone can just bring direct comfort and bring the soothing I need, no questions asked.

As I write this I am anxious. I will post this with anxiety and go about my day with high levels of anxiety. Today is a jogging day. There will be some good relief there. I also have friends to talk with later. I sigh with some relief thinking about it.

It’s not so bad after all. It is manageable. I do get through it.

Photo: Mel Brooks as the director of the Psychoneurotic Institute for the Very, Very Nervous in the motion picture High Anxiety released by 20th Century Fox.

My Communication Paradox

squinting-eye-1436988

I can master any language I expose myself to in a very brief amount of time. At age 3, I was speaking, reading, and writing in two: Ladino and English, and by my early 20s I was speaking 11, two of which were forms of sign language. Today I only use about 5 on a regular basis.

But learning languages and mastering communication are very different things. I know many words, and even though in the medium of writing I have mastered a means of communication “by the printed page,” so to speak, I still cannot always explain myself through genuine speech, express to another what my genuine needs always are, let alone tell myself what I truly feel inside.

Except for a small circle of people, and then among them just 1 or 2, I have the most difficult time speaking without being overcome by anxiety, confusion, fear, or simple loss of words. I don’t start out with these emotions either most of the time. I am generally in a state of peace and hopeful that all things in my next conversation will go well. The next stranger I meet, I tell myself, will be my friend, and any social exchange or business we will carry out will run smoothly.

Almost 100% of the time this never happens.

I have to admit from a critical point of view that I am left with only one simple conclusion as to why this is. I am the common denominator in these situations where problems erupt. I therefore am the problem. I am the person with autism, the person who has trouble with communication, and therefore I am the reason that almost no exchanges with me ever go smoothly.

This was my view until recently. Now I have had to revise it due to additional data from bystanders such as friends and associates who have been with me when problems have arisen and communication has broken down between me and another person or persons. My previous view was right but only half right. I have come to learn I am not the only party to blame.

The Smell of Blood

Have any of you on the Autism Spectrum, regardless of age, found yourself the victim of bullying when you were at your most vulnerable? Let’s say you were trying to talk to someone on the phone, a receptionist at an office who made a mistake and you were trying to get things cleared up. Since it had to do with a mistake that the receptionist made, that person was not very happy to talk with you, even perhaps somewhat rude and mean.

I don’t know about you, but I don’t function well at all when people are in this frame of mind. And a receptionist who has made a mistake is not likely to admit to or be happy to have it pointed out to them that they have been in error. With the telephone as a “safety barrier,” they might feel somewhat emboldened to talk to you in ways that they wouldn’t dare speak with you in person. Some of the niceties disappear in their speech and their behavior. I suddenly begin to stutter and panic and speak oddly in such a situation, and can start pausing in mid-sentence wherein the other person begins to cut me off again and again in their growing frustration with me. This causes communication to break down and my emotional state to grow worse.

Before I know it, the once-nice receptionist on the phone is actually bullying me. Their voice is now raised, they are angry, they are aggressive, and nothing I can do can stop the abuse at this point but hang up.

What turned the other person like this? Was it just me?

The answer is no, it wasn’t just me. Others with me have witnessed this happen to me again and again. Several things occur in these types of scenarios, especially when people make mistakes that you might catch them making.

First, as for what makes a bully, the answer is simple: evolution and instinct. Some of us are more hardwired to bully than others. It was a great way to survive when we had to fight over food and water in more primitive states, but does little for us now. “Bullying is a great example of our own evolution betraying us,” stated one writer on the subject, “or, in other contexts, it is at least an example of us acting on drives that are no longer relevant to our daily lives. After all, what’s the point of picking on a kid who’s smaller than you and who could not possibly present any kind of real threat? And the point of bullying an old lady on a bus is hardly obvious.”

Yet it happens. And those of us who think we cannot possibly bully a person with autism might suddenly be surprised when innate drives take over and we start picking on someone because we don’t want to face the truth about ourselves.

I had this happen to me so many times I cannot count them. For some reason I find that some neurotypicals equate making a mistake with a moral failure in themselves: “I am wrong, therefore I am morally bad.” If you’ve come to see them about an issue, they stand their ground not because they cannot possibly have made a mistake, but because they cannot be morally wrong.

This might come from the fact that in our culture we reward children for making passing grades and punish them for failing ones. When I went to school I learned that a large number of the honor students were part of a culture that cheated to get their A+ grades, and that many students who failed weren’t lazy. They just had learning disabilities. Cheaters were being rewarded while children with learning disabilities were being punished. Being right was seen as morally good–even righteous, regardless of how you got to be “right,” and being wrong made you bad–even evil, regardless of how you managed to get the “wrong” answer in the first place. It’s a horrible, unfair system. It’s illogical. There is no moral value to being correct or incorrect.

But I cannot convince some people who are not on the Spectrum of this. So when there is an error of some sort that must be attended to, I dread having to discuss this with any individual. The neurotypical who subscribes to this paradigm will immediately be on the defensive. They cannot be wrong because they equate being correct to their view of themselves as morally good.

In their defensiveness, therefore, they are often harsh and difficult to deal with. The evolutionary hard wiring to bully “smells blood,” so to speak, in the person with ASD who is having communication challenges, and the other individual begins picking on the person with autism without realizing it as a result. The bullying can often trigger  a meltdown for the individual on the Spectrum as a result.

It Takes Two

Don’t get me wrong. I can be the cause of a lot of confusion and communication breakdown on my own. But it hasn’t always been me. Sometimes there’s been two of us involved. And sometimes there really has been a bully on the scene at the center of all the commotion. It wasn’t my imagination after all.

I don’t think I’m the only one on the Spectrum who has faced this issue. In fact, because bullying is something wired into humans, I know I am not. The world is a rude place. People aren’t always kind. They aren’t always patient. They often think only of themselves. People generally believe that they would never be the type of person to mistreat someone on the Autism Spectrum. Because of that type of thinking I’ve even had individuals in the medical field and who work specifically in vocational rehabilitation services totally lose their cool and become unruly before me all because they couldn’t and wouldn’t admit they simply made an error.

It’s a paradox. I have a problem communicating with the world. But the world could do a lot better at trying to communicate with me sometimes too.

Photo: Gabriel Doyle

Questions from Friends, Acquaintances & Readers

Big Three Band
My older brother on the far left, my cousin on the drums, and me on the guitar.

While I’ve been working in film and television for some time, my disclosure regarding being on the Autism Spectrum has only been quite recent. Several have had questions in common, others have asked me to address certain subjects more in depth. So I decided there’s no better time or place than right here and now.

You call your blog The Rocking Boy because of your stimming. Can you talk about that a little more. When did it start? Were your parents really so physically abusive with you in response to it?

The earliest reports of my rocking come from my infancy. I would even do it in my crib. According to my family, one night when my father was serving in the Air Force, stationed in Massachusetts, and out of town on assignment, my mother was awakened around 4:00 in the morning to the sounds of me crying in my bedroom. Well, it was actually to the sound of my screaming and crying.

She and my older brother woke up and went to the door of my bedroom to find it locked. They couldn’t get inside. Luckily, they thought, since this was a corner room with two doors, they need only go to the other door on the other side around the corner and go in through that door. Oddly, and to my mother’s horror, it was locked too.

You see, my rocking was so bad, that they had to remove every stitch of furniture from my bedroom and leave just me and the crib there because I would knock into everything through the rocking that I would do. The crib was on wheels. When I would sit up and rock, I would often grab hold to one side of the crib and the crib would roll from one end of the room to the other.

Apparently I had managed to not only roll around the room that early cold January morning, but roll my crib to each door, close it, and lock it from the inside. And then I decided I would have a good cry, I suppose.

Realizing she could not get in, my mother called the landlord. There was a blizzard that had just begun. He was not about to get out of bed and bring a spare set of keys to unlock this bedroom door at 4:00 in the morning just to hush some crying baby.

So my mother put on my father’s snow boots, a coat over her nightgown, and a winter cap, and braved it through a blizzard one block to the landlord’s house to get the keys. She came back, unlocked the door to my room to find me there in my crib just crying away for no reason. Nothing had happened. I was just crying.

She never let me forget that story either. Each time she told it the distance to the landlord’s got further and further and the snowdrifts got deeper and deeper.

So my parents never had a good relationship with my stimming. Rocking was the main thing that I did. While I could do it sitting on the floor, so-called “Indian style,” I would also do it sitting on the sofa, any chair, rocking chairs especially, and I even broke a recliner we once owned by means of it. Rocking to music was my favorite thing to do.

They eventually bought me the giant rocking horse I mentioned in the first post of this blog (hoping I would get all my rocking needs out of that thing), but it got partially destroyed when Hurricane Celia struck our town of Corpus Christi, Texas in 1970.

1024px-Alamo_Loan_after_Hurricane_Celia
Destruction in my hometown of Corpus Christi, Texas right after the landfall of Hurricane Celia in 1970. I was only 3 years old when it hit. I remember it vividly.

The rocking, of course, didn’t stop. My parents’ way to deal with this was corporal punishment. While trend-setters on the outside, my parents were in a rocky and violent marriage. The violence spilled over into their punishments for me. I’ve never had an innocent spanking or the like from my parents. It was always cruel, physical thrashing that ranged from repeated strikes with blunt objects, to slaps in the face in sets of 12-20 at a sitting, to being punched in the nose until it bled or broke in an attempt to get me to stop.

Did you know you were on the Autism Spectrum when you were a child in school?

No. I did not receive an official diagnosis until I was an adult. But I did clearly know from early childhood that something was very different about me, especially when I got into kindergarten and tried to interact with peers.

How were you able to function through life on the one hand being abused at home and on the other hand having ASD?

PTDC0023
Me in the Second Grade

Considered another form of stimming behavior, but taken to a very extreme level in my hands, I used something known as “scripting” to get through much of life to make it seem that all was normal for me.

Scripting is when someone with Autism Spectrum Disorder quotes from films, books, commercials, songs, etc. which some experts believe might be employed as a coping mechanism for some. Others think it could also be used at times more exclusively for communication purposes.

When a person on the Spectrum doesn’t know what to say, they might think of what a character from a film or book they’ve memorized would say in a similar situation and then quote a line that fits.

People with ASD can also “script” from real life. They watch and mimic people. People are often repetitive, using the same type of gestures and catch phrases for particular situations that they themselves may find themselves in, and even use phrases that they have picked up from a favorite TV show or movie to get through them like a person with ASD. The person with autism can then learn and repeat these, drawing from a library of them that they can later retrieve when called for.

I did a lot of scripting in school and in life up to a certain point.

Did you ever stop scripting and just start talking as yourself? If so, when and how?

Yes, I did stop. For the most part instantaneously at least with one person to start with.

It was in my mid-20s when I met my best friend, Gavin. He’s about 5 and a half years younger than me. He’s not on the Spectrum. And except for having similar backgrounds in the sense that we have sparse familial connections and both know what it is like to be bullied growing up (and you definitely would not know that about Gavin from looking at him today), there was an instant bonding connection on multiple levels.

This was the first time in my life I was ever able to talk to someone who was able to talk back to me and both of us do so freely. It was like I don’t have ASD when I talk to him, almost. I know it’s there. I know it comes through, but meeting Gavin was like meeting family, a brother I was supposed to have but just got separated from at birth. He feels the same way.

We can talk about anything with ease. I’ve never had to script with him. And through that relationship I learned that I am enough just the way that I am. Sure, not everyone in the world treats me like Gavin. In fact, there is no one on the planet I can connect with like him. Yet I learned if I can be something and mean something special just as I am to someone like Gavin, just the way that I am as me, then I can move forward and begin communicating on my own if I work at it.

It would take time, but I would eventually do it.

I read the Art of Autism article about you. Is 3D the only thing you have had a deep interest in?

No way: I love all things Godzilla. I was all obsessed with going to the drive-in movie theater too and learning how those places worked (I had wanted to own one and still do). I loved spooky skeletons and traveling dark rides at carnivals. And while it does get mentioned in the article a bit, I do want to stress it again: I loved the idea of making logos for products. Astronomy was something I loved quite a bit too.

Are you really Jewish?

Last time I checked.