Day 3: Autism diagnosis or discovery story

Today’s topic is about the reaction to a discovery or diagnosis of autism. My sister found out her son had Asperger’s around the time he was in first or second grade. My father was the one who told me. He explained to me that my nephew had Asperger’s, and said it was a form of autism.

I had never heard of Asperger’s, but I did know about autism. At the time, neither terms were in great circulation. This was around the time of DSMIII (Late 80s), when Asperger's and Autism were separate diagnoses. Whatever the case, I knew he was in good hands. My sister and her husband have worked very hard to get him through public school, the army, and two associate degrees.

My siblings and other nieces and nephews accepted him as he is. We enjoyed his odd sense of humor (we are all very irreverent), his fascination with horror movies, Star Trek, video games and the military. We know he is a stickler for detail and will call you out on any mistake you make on any of those subjects. He can be brusque at times, but we know he has a good heart and the right intentions.

When my sister and her husband received the diagnosis for their son, we lived far apart and spoke infrequently, and because they kept their son involved in everything like the rest of his cousins, I assumed everything was fine. My sister would get frustrated and express it privately from time-to-time – to me, her husband, our parents – but publicly she acted as if her son was just another child who deserved an education. Her rare displays of anger were reserved for school officials who did not pull their weight or neighbors or friends who mistreated her son from time-to-time.

I’ve long admired my sister and her husband for seeming to sail through this calmly and without a hiccup. They made it look easy. They acted as partners and their marriage is still strong after 34 years. But there was a lot of hard work, and many tears and struggles behind the scenes. It makes their accomplishments – marriage and in raising their children - all the more admirable.

There is an Autism community page on my company's internal website. Many people post there about their children. It is impressive how they share it so freely. Some members tell me that many “side conversations” take place in which they support one another or suggest help. If that’s all the  community ever achieves, Then it is a success. The community is there for many purposes, support being one of them.

Day 2: What I love about being autistic is...

It’s day two of this month-long challenge and I am profoundly stuck: I am not autistic, and I cannot answer the proposition. I have often thought that my own hearing impairment, since birth, offered a clue into what it is like to be autistic. But I still cannot genuinely say I know what it is like to be autistic.

Instead, I do my best to understand – as I wish people would do for me and my hearing problem. I listen in on many Facebook forums and Twitter feeds to see what actually autistic people say. I’ve read numerous books in the last few years, some written by actually autistic people.

What strikes me the most about the people writing these fora and books is how proud they are of their abilities, and how fiercely they want to be recognized as different, not less. I also hear much of the struggles they have in getting by in jobs or social situations.

I can instead say what I love about those people, and that is their pride in their abilities and their strength to endure against a world that is often indifferent and at least not understanding. I hope this month we can change at least a few opinions or open a few minds to the possibilities of hiring people with autism, or at least learning to treat autistic people with the respect they deserve.

I would love to hear what parents or actually autistic people have to say about their pride in autism.

thanks,
Paul

Day 1: Autism Awareness Day? Week? Month?

I follow a Facebook Group in which one of the members challenged us to write something every day for Autism Awareness Month, providing topics for each day. The first day is just an intro.

I run an "employee resource group" (ERG) or an internal website where I work that concentrates on autism awareness, support, hiring and research in my company. It has about 600 members so I wanted to share the posts I create with this group. 

When I went to create the post  I saw that I had missed what a colleague posted earlier in the week: A piece about the Autism Gap, and​ Autism Awareness Week. Both of them are worth reading, but the latter gave me some pause, and eventually the topic for this piece.

My colleague's post celebrates the week as March 26th-April 2nd. April 2nd is Autism Awareness Day, and the whole month of April is for Autism Awareness. I'm easily confused (a fun party game), I don't know what authority decides these things, but it occurred to me that it doesn't matter. Whether we are parents of autistic children, looking to change recruiting and HR to accommodate autistic people, researching autism, or #actuallyautistic - we are always aware of autism and always looking for the rest of the world accept autistic people.

Still, I accepted this challenge for this month and I will do my best. I will post each day on a new topic around the subject of autism. Most of the time my expertise will be sorely challenged or utterly lacking. What I hope, though, is that as I share each topic some of you will respond from your points of view as parents or autistics, and we can learn from one another to help spread awareness and acceptance the rest of the year. I hope you will participate and bear with me.

The summer my taste in music changed

When I was in eighth grade I thought I was pretty cool because I liked the Moody Blues. I’d heard them on my brothers’ eight tracks in the car and I thought that was hip. Guitars and powerful voices WITH AN ORCHESTRA. Or at least a Mellotron. Anyway, no one else my age listened to them – they were old! – and that was part of the appeal. Because I was a dick. Other kids were listening to Journey or Zeppelin and I just sadly hadn’t come to appreciate them, yet.

But in the late afternoon of one eternally long adolescent summer afternoon, with a dry, warm breeze blowing along the long shadows of yellow and green, my friend Mark invited a few of us to his house to listen to his brother’s album by Frank Zappa.

I’d heard of him. Heard he was weird. Just didn’t have the resources to try it without hearing it, first. So I wanted to try this.

We all got high, and Mark put on the album Joe’s Garage, Acts II and II, side one. On comes a guy speaking through a megaphone about the First Church Of Appliantology, and a song launches about being taro-fied and I learn the phrase I love to use to this day, “It’s just a token of my extremes.”

The song is about a guy named Joe going to see Dr. L. Ron Hoover [sic]. The good doctor tells Joe that in order to solve his problems, he has to learn German and go fuck an appliance. Dr. Hoover tells Joe a bar to go to – The Closet – where he can accomplish this, and then asks for 50 bucks.

The song has a long fade out. At this time Mark tells us the best part is coming. “You are not going to believe this next song.” In between, a guy called The Cental Scrutinizer tells us that Joe has walked in to a bar called The Closet and started to hit on dancing machinery covered in marital aids.  Then Mark gets up. The next song starts. It’s hopping.

It’s in German, and Mark mouths the words. I do not know what is going on. I am stoned and Mark _______ is dancing like a child acting in a vaudeville show, lip-syncing a song in German. Oh, and I AM STONED. I’M IN EIGHTH GRADE AND I AM LISTENING THE MOST BEAUTIFUL MUSIC I HAVE EVER HEARD. AND I AM STONED.

It gets to the middle of the song and the singer takes a break while Joe notices one of the appliances noticing him. The machine hits on him with classic come-ons, and propose to dance with Joe. Joe has a better idea. Mark is ready to lip-sync again as Joe repeats what he had said in German, earlier, but now in the English words that changed the trajectory of musical taste, forever.

FUCK ME, YOU UGLY SON OF A BITCH! You ugly son of a bitch!

FUCK ME, YOU UGLY S-

The four of us exploded into laughter for the obvious reason, but because I am a dick, I thought I heard something more. Rather than just the shock of saying a vulgar word in middle school that could get you suspended – the power that word once had! – I felt for the first time what irreverence means. I had crossed a rubicon.

The song went on, introducing a new phrase and repeating it four times each:

STICK IT OUT! Stick out your hot curly weenie!

Till it squirts, squirts, squirts, squirts, FIRE!

Don’t get no jizz upon that sofa, sofa.

The next song involved the two of them enjoying sex until Joe pees on the machine, destroys it, and is immediately confronted by The Central Scrutinizer that he is under arrest for destroying government property.

I remember going home and calling Mark when I got there to ask where his brother got the album. “Two Guys,” he said. A department store near my house that I went to, often. Got caught shoplifting there, once. I went there the next day.

But this time I marched down there with my semi-honestly earned allowance – I had to be reminded frequently to do my tasks – and I bought the thing. A double-album. $11, if I recall correctly. I had the money and then some.

As I walked to the cashier to pay, I bumped into my brother. Six years older than me. He looks at me, “Hey! What are you doing here?” I never thought liked me. Not that it made me special, he hated EVERYONE. What shook me was that he sounded nice for once.

“Getting this Frank Zappa album.”

“Oh, I hear he’s kinda weird. I might have to tell Mom and Dad about this he said.”

But he did something weird when he said that. He smiled. I knew he was joking. I read his face properly for the first time. I don’t know why that strikes me.

“Well, I’ll see you later. I gotta go to work.”

I went home and listened to it. I had to listen to it in the living room, where the phonograph was. I had headphones so I sat in a chair nearby and listened. I went past the songs I was already familiar with and made the gut-wrenching, soul changing discovery of what heroin must be like: Frank Zappa guitar solos. They were meaner than anything I had ever heard. Odd-metered phrasings, influenced by middle eastern sounds and atonal scales. I did not know these things then, but I sensed their presence, somehow, and had to learn the currency for them.

I told my friend a few weeks later, when school started, what the whole album was like. He never listened past the first three songs he’d played for us, really. He said it seemed boring but he was happy I liked it.

I was now turned down a path less traveled a lot of people had walked down before me but were not here now and I could not find them. I believed there must be other people who listened to him, and I had to find them.

Taking a Music Theory class in tenth grade, I started to find them. First, we were learning about fundamentals – rhythm, harmony, antecedent and consequent phrases, melody, chord progressions, scales, modes. We learned these along with the history of Western music, with its roots in Greek tetrachords, up to the present day, and all the changes in how each fundamental was used in each genre and age. When we got to Jazz, something unlocked in me.

I got an explanation for how music works, and how it was unfolded to make music incredibly new, visceral, and and intellectually stimulating. Because now I got music. Before, I had just dug the whole, big, sound. Now I could hear inside the music and appreciate the craftsmanship and ingenuity of some musicians.

During this time I picked up a Jazz album from the library. I had to hear this stuff. It would piss off my father because he absolutely hated Jazz. More than Rock and Roll.

I stared at the meager collection, and saw an album called, “Sunday Walk” by Jean-Luc Ponty. Jazz Violin. I liked violins. Jazz violin? Let’s try it. I took it home and dropped it on the turntable without the headphones.

Four acoustic instruments – drums, double-bass, piano, and violin – impeccably recorded live from a performance that, from my father’s JVC walnut console phonograph and reel-to-reel, sounded as if it was happening in front of me. My hearing sucked but this record was so well done I could hear the rosin dust settling on the face of the violin as Ponty sawed those strings.

I now got it. I heard how the chord progression changed and the soloist followed it. I heard how the how the melody was introduced and then played with, in turn by ever instrument. I got this and I loved it for some reason. I understood how it was put together – and I respected it.

Our project in that class was to explicate some music of our choice using the knowledge we’d picked up that year. One student in the class, a year ahead of me, wore a King Crimson shirt – Discipline, the red one with the knotwork. I had heard of them. “What’s it like? I asked. “I’ll make you a tape,” he said. He had friends who introduced me to Killing Joke. I was forever freed from top 40 radio. I would also never have another normal conversation about music for the rest of my life. And I am still a dick.

Sketch 1: Campervan and 25 years later

I remember Pat loading his campervan that morning as if the night before never happened. Annette, Doug and Gwen were sleeping off their hangovers, but he was up early getting ready to leave. 

He went from porch to van to porch to van, moving the boxes he’d packed between finals to their proper spots on the floor between the seats. His hair followed him like flaxen wake. 

Bing, his cat was mildly intrigued by the long braided leather lanyard, which held his keys, swinging from the back pocket of his cutoff Levis. But it was too hot to attack. 

When the last box was in, Pat stopped and pulled off his sweat-stained concert tee – I think it was an old Yes concert shirt – wiped his face and hands with it, and put it carefully on the back seat. He grabbed a cotton BoSox jersey from the front seat and put it on. 

“Good morning,” I said, weakly, from just inside the paint-choked screen door. 

He stopped and stared in the side-view mirror of the van, his back to me. He pulled a rubber band from his pocket and tied back his hair. 

“Morning,” he responded finally. He did not turn to look at me as he fussed with his hair a little more. The he moved to the back of the van, opened the hood and fiddled with the engine a moment, let the hood slam, then came up to the porch, holding his now greasy hands up like a surgeon after washing. He stopped just outside the screen.

“Would you open it for me?” he asked.

“Sure,” I responded, and opened the door and moved aside. He breezed past me to the kitchen. I could hear water come on and off quickly, then heard the step-can open and shut. He then came back out to where I stood, and stopped right before me. 

He looked right into my eyes, just as he always did when he spoke to me, when he spoke to anyone, but it made you think they were there for you. They were green or hazel or whatever we never agreed they were, but they drew me in and he never knew it and he did not know right then, either, that if he asked me to drive to the Andes with him in that rickety tin can on wheels – right there, right then – I would have done it. 

My mouth opened slightly. I wanted to say something, start stuttering it, “I … I … I…,” but he started speaking first. 

“Just send my piece of the deposit when you can. I trust you.”

“Okay.” 

He kept looking right at me – not staring – looking. My eyes darted back and forth from his left to his right but his gaze was fixed at the center of me.

“It was fun last night. Hope we can do that again someday.”

“Yeah.”

He let go his gaze slowly, as if following a feather floating through the air. The imaginary feather took his gaze to Bing. He walked outside and grabbed the feline like sack of potatoes. Before the screen door slapped back into the frame, he and Bing were in the van. 

I heard the engine roar and watched them back out of the driveway, and disappear beyond the hedgerow. He waved. 

It was then that I noticed I’d been wearing only a bra and panties. 


(x years later)

One man on the other side of the table never looked up. From the moment he walked in, sat down, and started writing notes, he never looked up. Occasionally, when one of his team spoke, he nodded in approval but he kept writing. Not typing into his Ipad like everyone else – writing in a pad of paper in a weathered oxblood leather binder with a Mont Blanc pen. He never once checked his cell phone like the rest of us. 

He wore no tie or undershirt like the rest of his team, just a clean black jacket, black slacks, a white oxford shirt. He ran his hand over his grayed brush cut every now and then, as if checking to see if his hair was still there. It was all there, more so than his younger team members. 

At one point in the negotiations, as his one of his colleagues spoke, he stopped writing for a moment and stared at a point in the center of the table. He quietly laid his pen down and soundlessly drummed his fingers on the table, to his right. As the colleague continued to speak about an important contract rider, his brows came together and I saw something familiar in his eyes. Then he quickly grabbed the pen, put his eyes back to the paper, and started writing again. 

During the first break he walked swiftly outside to a water fountain. Two of his colleagues followed him with travel mugs full of coffee and chatted with him as he took a sip of water. I could see through the glass that he was talking to them, but he did not look at them. When they were finished talking to him, they nodded heads and walked away. The man then leaned against the wall, held his left hand to his chin with his left elbow in his right hand. And he stared into the imaginary spot in the center of the table again from the hall.h

I could see his eyes and then I knew. They were hazel, or green, or whatever we never agreed they were. They were all that I could be sure identified him as Pat, but I was certain. I walked outside to where he was and without looking at him I took a long drink from the fountain. He did not acknowledge my presence, but kept staring. 

When I finished my drink of water, I stood up and looked at him. His eyes instantly shifted and he looked right at me. 

“I … uh …” I started

He kept looking right into the center of me. 

“… Pat?” 

“How have you been, Cynthia?” (He NEVER once called me ‘Cindy’ like the rest.) He said this warmly. Or at least that’s what I felt wash all over me. I was afraid for a nanosecond that I’d wet myself. But I felt relaxed all of a sudden. 

“Well, it’s been what – 25 years?”

“Yup.”

“The last time I saw you, you just packed up and left us, you and Bing…” I was starting to relax. I fiddled with my wristwatch and looked about the office. But he kept his gaze right on me, and he still held his chin in his hands. 

“You had that ancient VW – what was it, already 15 years old when we graduated? And you packed it that morning and you left. We were all hung over, but you got up like you’d drunk water the night before…and packed your van. You’d packed your boxes all that week between finals, you didn’t study at all!” 

One of the lawyers called us back in the room. People started filing back in. But Pat and I stayed at the water fountain, him still with his chin in his hand, me rambling on.

“And you had that Yes shirt on that day, and you switched into a BoSox jersey before you left. I remember it like it was five minutes ago! How…” I started to ask, but he moved. He straightened his back and let his arms down, slowly to his side. 

“How have you been?" I said, dropping to a whisper. I went to look into his eyes, but he moved his gaze back to the conference room, through the glass. Then a sly grin slid over his face and he blushed.

“I remember you were wearing just bra and panties.”

My Brief Stint As a Performing Musician.

Bill's parents were gone for the weekend and he was throwing one more epic party before he and many of my other older friends left for college. He invited my friend Roger and me, but we had misgivings about going. Our friend Tony would be performing there with his band, and Roger and I had sticks up our asses about Tony impregnating some girl and abandoning her. We got uptight about that kind of stuff. 

Bill implored us to show up. He and I could take the mic between the band's sets and play our music, for fun. Unlike the guys in Tony's band, who could play music, Bill and I could bang out a few chords and maybe riff a melody and make it sound OK. 

Well, Bill could. He taught me how to write three-chord songs and fake a solo over them using ping-pong recordings (where you record on one device, play it back and play along with it and record on a second one, over and over again). He even taught me one of his own songs, "Kill Yourself". Together, we came up with "Prisoner of Pizza Hut" and I composed my very own "Cambodian Folk Song", which Roger would sing to, stream-of-consciousness style.

So Roger and I agreed to go to the party, but just to keep some sense of cool about ourselves, we showed up late. 

That fucker Tony was using my guitar. I had lent it to him for the gig, and he was playing it upside-down left-handed because that's what Jimi Hendrix did. And he had a cigarette stuck in the strings above the nut.

Their set ended just as we walked into the basement. It was full of the neighborhood friends and various others from around town. Tony feigned excitement to see us and we feigned excitement to see him. Bill was smashed and took me aside to tell me he was too drunk to play and could only sing. I had to play lead on the songs. 

Stone cold sober, my first performance in front of a crowd of my peers. No problem. I don’t remember the last time I summoned that kind of courage. Maybe when I jumped out of a perfectly good, working airplane or walked my daughter down the aisle.

I looked over at Bill as we started to play. His eyes were bugged out, lips were clamped shut, and he was sweating cold beer. He looked like he was about to fall over.

Whatever the first song was, I think I stayed in key, I don’t remember and I didn’t care. Laurie Tooley was standing there, before us.   She was leaning against a jackpost, slightly tipsy, with an off the shoulder sweater. One of the most stunning brunettes I have ever seen. Veronica Lodge with Betty Anderson’s body. If she’s on Facebook, someone tag her, she deserves to know this.

She smiled. I think she was just being nice.

Everyone humored us. It was nice, really. Makes me feel strangely warm. Can’t explain it. Might be nostalgia that I don’t want to admit to.

After a few bars of the first song, the “real” band members started playing along a little. It was a nice touch. We played “Kill Yourself” and “Prisoner of Pizza Hut” to mild applause and friendly laughter. Worst thing you can do is encourage me.

For the third song we played my “Cambodian Folk Song”. It was ad-libbed by my friend Roger – he rambled on in skeltonics and a lounge act's voice about all sorts of surreal shit that no one on all of God’s LSD could imitate – and he did it straight. I really admire people who can come up with surreal, absurd shit like that. Been trying to do it all my life. Roger sat Tony down on his lap and dedicated to the song to him, throwing in vague references to the fact that we were disgusted with him for violating a girl on his parents’ basement floor and then treating her like dirt afterward. I remember Pete playing rimshots along with the slow. tinkling sounds of a repeatedly arpeggiated D chord (that’s all the song was; Bill taught me this! Keep it simple! If it sounds good, it IS good!). Greg (guitar) and Chris (bass) added a few notes, too.

We finished and the party broke up a little later. Lotsa laughs. Tony got hammered to the point where we didn’t want him to drive. We forced him to let a sober driver take him home in his father's car. We made him wait in the passenger’s seat in the driveway while we summoned someone - I think it was Eric - with cleaner breath.

Roger watched him and made sure he did not go for the driver’s seat. He tried creeping over a few times but Roger would reach over and yank him back by his neck. At one point I think he clocked Tony in the face to get him to stop. 

I don't know what I miss more about those days, but whenever I feel the urge to lament how hard growing up was, I recall that I at least had refuge in a circle of accepting and decent people when all else seemed to be going wrong. 

Or maybe I just wish I could have my fifteen minutes as a garage-band star back. 

 

Recurring Dreams and Images

Images from some dreams I had almost 30 years ago continue to haunt me. I hesitate to use that word for the connotation of terror. The feeling is more one of captivation and mysterious wonder. Some of them make sense to me, others do not.

One particularly vivid image came from a dream in which I viewed myself through the eyes of another person waking up on a stunningly bright summer morning after a rain storm. The person walked through a house to see me in the back yard, hanging bleached white sheets on a line. The light coming off the sheets was blinding, and the I can still smell wet grass when I remember the image. The person asked me what I was doing, and I replied, "Tying up loose ends." I recalled this dream very vividly after brokering a meeting between may different people of late so I've rationalized some meaning out of this by noting my enjoyment at fostering connections between people and networking heavily to promote certain causes I believe in. Perhaps it was a premonition or an early, inarticulate realization of a talent I had.

I've had a recurring dream about the sky being on fire and my viewing it from the building I work in. I look south across a parking lot to where the clouds are on fire in the distance. I think I am alone until I am shocked to see a coworker leaving. I tell him that the sky is on fire. He shrugs and says something like, "Well, I am going home. Good luck!" The first time I had the dream it was an older man that I worked with who said it to me. The second and third times it was people closer to my age or younger than me. I can't figure this one out.

Then there are a series of four images I recall from dreams long ago. In the first, I am surrounded by or actually inside of a large machine, like an old mainframe computer, and I am frantically trying to make sense of all the wires and connect things to their proper mates. I have a wild, manic look as if I might be controlled by the machine as I try to control it. When I saw The Matrix I wondered if it had something to do with that kind of a feeling, but for lack of a better explanation it just didn't feel right.

In the second I am wearing a robe like a bedouin, I have long hair and I am carrying a staff in the desert. I have bent down to check what is either a prosthetic food or a brace around my leg. As my right knee starts to give with age in real life, I wonder if it was a warning that I would someday fall apart.

In another, I am still in the desert, but I have collapsed at the foot of a woman dressed like a fairy or an angel.

In the last, I am prostrated on a couch in a sun-drenched room, late in the afternoon, in a house near the shore of the ocean or a great lake like Ontario. There are three figures around me dressed in white but I cannot tell who they are. I hope this is what my death is going to look like because it's a very relaxing image.

Of all the images I have had in my dreams these ones persist the most. I have read that dreams may be our way of playing with ideas and imagining how we'd deal with certain situations should they arise some day. If that is the case, I wish I could unlock what I was toying with in my head, and discover why these images persist in my memory.