Category Archives: Autism/Aspergers/Mental Health

An Interview with Eustacia Cutler

Most anyone who is part of the Autism Community, would recognise the name Dr. Temple Grandin. But would you reckognise the name: Eustacia Cutler?

Some people know immediately. Others have absolutely no clue who this person might be. Eustacia Cutler, is Dr. Temple Grandin’s mother.

What is Autism

Autism is a developmental disorder of the brain. As the brain matures, it becomes neurologically (wired) different then what is found in the Neuro-Typical (non-autistic) general population. Approximately 1 percent of the population (1 in 88) are affected by an Autism Spectrum Disorder.

I had a few moments with Ms. Cutler at a recent Autism conference held in Tucson. A charming woman, with a distinctive Boston accent.

The Politics of Autism

Autism and Politics. Why isn’t the political system doing anything to help?

There is a great deal that we don’t know. That’s why I am working to develop this fund, the Temple Grandin/Eustacia Cutler fund to support and guide all members of the family. I think basically Autism is a family dis-order.

This is one of the reasons politician’s don’t approach this. They want to be kind. But how do they do this? The part of the problem with the government is they are not always sure what is the most helpful thing to do? I am not sure either. They can’t take care of the situation. In the end, the family is going to take care of the situation. The family is the lynch pin.

This also means, school and therapists. But they [politicians] can’t handle the life problems. They can only guide people and teach them to handle problems themselves.

There are not going to be answers. There are only going to be choices.

Changes to how Autism is diagnosed

Controversy surrounds proposed DSM (Diagnostics and Statistics Manual) changes to remove the diagnosis of Aspergers and roll that into Autism Spectrum Disorder. What is your opinion?

I am not in a position to evaluate it. I will watch it. My role is be an ambassador. To explain and listen to the doctors.

Learning difficulties

Temple is a visual learning. As a child, she was almost a “tape recorder.” What role did hearing playing in her learning process?


We have different ways of connecting neurologically. We are all visual learners in my family. It’s not always information that’s appraised. That’s why I talked about the difference between conceptual thinking and categories. How hard she has to work, for the conceptual thinking, which does NOT come to her neurologically.

Autism Speaks

The organisation Autism Speaks. Do they help? Does they hurt?

Interesting question. People think differently. It’s corporate thinking. Of course they have done good. They have raised huge amounts of money. They have put a great deal of it into research. All help is good.

A followup question. On several websites, there are posts that say: “Autismspeaks does NOT speak for me.” Comments?

I have no way to appraise this. I see the tremendous need each of us has to hang on to our identify. The fear that particularly High functioning Apsergers have is losing themselves. Research will change them.

At a conference that Margaret Bowman did (from Mass. General Hospital) in Bakersfield California, a young Neurologist was talking about medications. A man stood up and said: “I am Asperger. Is the point of your research to do away with me?”

The Future

A final question. If you could leave one thought to the future generation about Autism, what would you tell them?

Choices. We change. The capacity to change, I think is an extraordinary gift. The choices change us. We have some sense in our neurology of some spirit in us, to be the person we would like to be. In the choices, clarify it for your child. You make the choices for your child to be fulfilled. I would say that. No, Temple is not cured of her Autism. But she is fulfilled. She is fulfilled as she would like to be fulfilled.

The film Temple Grandin is an excellent biopic of Eustacia Cuter, and Dr. Temple Grandin.

Precious Gifts

We hear the word “precious” bantered around like it is something ordinary. We might hear: “Oh doesn’t so-and-so look precious?” The word seems pedestrian. We hear it everywhere.

I like this definition of precious: (from dictionary.reference.com)

(something) highly esteemed for some spiritual, non material, or moral quality:

It is uncommon. It is exceedingly rare.

This past week, I realised I had two very distinct precious gifts.

A person who is part of my extended family was ill. He came home from the hospital, to die. We didn’t know when, but was certain that we had a few days. He came home on a Friday. Despite all, we had a great evening, enjoying each others company. The next day, Saturday, we also enjoyed a wonderful (awe filled) day. He wanted sausage. I went home to prepare the peppers and onions that would accompany the meal. He didn’t eat a lot, but as I jokingly said, he always ate with gusto. He savoured every morsel. It was time to rest. He was having difficultly moving, so his wife called me to help him back to bed. A few hours later, he had passed. No lingering illness. No suffering. He was gone.

The Bible says:

“Precious in the sight of the LORD is the death of his faithful servants.” (Psalm 116:15 NIV)

While I was saddened at the loss of a dear friend, I realised that God had given me a great honour. I was privileged to help prepare the last meal he would eat on this earth. While I wasn’t there physically when he passed, I knew that he was safely in the arms of our beloved Saviour.

Exactly a week later, I was visiting a friend who is severely autistic. I have high functioning Autism. I share a kindred bond with other Autistics, that Neuro-Typicals (our name for people who are NOT on the Autism Spectrum) would not understand. One of the other residents there, a non-verbal Autistic, had been seated in the living room. He enjoys playing with toys, and I asked the staff if it would be okay if I gave Michael a toy. They said it would be fine. As I carefully placed the toy in his lap, he took my hand in his. He looked at me, then carefully took my hand, and kissed it. People with Autism are usually poor at non-verbal communication. This simple act communicated volumes. God had again bestowed, a precious gift.

“The closer we are to the Lord, the more likely He is to commit precious things and precious people to our care. Let’s love him deeply, that we might be privileged to serve our Lord as John served Christ.”

Richards, L., (1990). The 365 Day Daily Devotional, pg 810, Wheaton , Illinois: Victor Publications

The Strange and Curious Tale of the Last True Hermit

An interesting story about the last hermit, Aspergers, surviving.

The Strange & Curious Tale of the Last True Hermit

Reposted from here. The original site has tonnes of excess contacts a loads very slow.

——–

For nearly thirty years, a phantom haunted the woods of Central Maine. Unseen and unknown, he lived in secret, creeping into homes in the dead of night and surviving on what he could steal. To the spooked locals, he became a legend—or maybe a myth. They wondered how he could possibly be real. Until one day last year, the hermit came out of the forest

By Michael Finkel

September 2014

Photo: Andy Molloy/ Kennebec Journal/ AP Photo

The hermit set out of camp at midnight, carrying his backpack and his bag of break-in tools, and threaded through the forest, rock to root to rock, every step memorized. Not a boot print left behind. It was cold and nearly moonless, a fine night for a raid, so he hiked about an hour to the Pine Tree summer camp, a few dozen cabins spread along the shoreline of North Pond in central Maine. With an expert twist of a screwdriver, he popped open a door of the dining hall and slipped inside, scanning the pantry shelves with his penlight.

Candy! Always good. Ten rolls of Smarties, stuffed in a pocket. Then, into his backpack, a bag of marshmallows, two tubs of ground coffee, some Humpty Dumpty potato chips. Burgers and bacon were in the locked freezer. On a previous raid at Pine Tree, he’d stolen a key to the walk-in, and now he used it to open the stainless-steel door. The key was attached to a plastic four-leaf-clover key chain, with one of the leaves partially broken off. A three-and-a-half-leaf clover.

He could’ve used a little more luck. Newly installed in the Pine Tree kitchen, hidden behind the ice machine, was a military-grade motion detector. The device remained silent in the kitchen but sounded an alarm in the home of Sergeant Terry Hughes, a game warden who’d become obsessed with catching the thief. Hughes lived a mile away. He raced to the camp in his pickup truck and sprinted to the rear of the dining hall. He peeked in a window.

And there he was. Probably. The person stealing food appeared entirely too clean, his face freshly shaved. He wore eyeglasses and a wool ski hat. Was this really the North Pond Hermit, a man who’d tormented the surrounding community for years—decades—yet the police still hadn’t learned his name?

Hughes used his cell phone, quietly, and asked the Maine State Police to alert trooper Diane Perkins-Vance, who had also been hunting the hermit. Before Perkins-Vance could get there, the burglar, his backpack full, started toward the exit. If the man stepped into the forest, Hughes understood, he might never be found again.

The burglar eased out of the dining hall, and Hughes used his left hand to blind the man with his flashlight; with his right he aimed his .357 square on his nose. “Get on the ground!” he bellowed.

The thief complied, no resistance, and lay facedown, candy spilling out of his pockets. It was one thirty in the morning on April 4, 2013. Perkins-Vance soon arrived, and the burglar was placed, handcuffed, in a plastic chair. The officers asked his name. He refused to answer. His skin was strangely pale; his glasses, with chunky plastic frames, were extremely outdated. But he wore a nice Columbia jacket, new Lands’ End blue jeans, and sturdy boots. The officers searched him, and no identification was located.

Hughes left the suspect alone with Perkins-Vance. She removed his handcuffs and gave him a bottle of water. And he started to speak. A little. When Perkins-Vance asked why he didn’t want to answer any questions, he said he was ashamed. He spoke haltingly, uncertainly; the connection between his mind and his mouth seemed to have atrophied from disuse. But over the next couple of hours, he gradually opened up.

His name, he revealed, was Christopher Thomas Knight. Born on December 7, 1965. He said he had no address, no vehicle, did not file a tax return, and did not receive mail. He said he lived in the woods.

“For how long?” wondered Perkins-Vance.

Illustration by Tim O’Brien

Knight thought for a bit, then asked when the Chernobyl nuclear-plant disaster occurred. He had long ago lost the habit of marking time in months or years; this was just a news event he happened to remember. The nuclear meltdown took place in 1986, the same year, Knight said, he went to live in the woods. He was 20 years old at the time, not long out of high school. He was now 47, a middle-aged man.

Knight stated that over all those years he slept only in a tent. He never lit a fire, for fear that smoke would give his camp away. He moved strictly at night. He said he didn’t know if his parents were alive or dead. He’d not made one phone call or driven in a car or spent any money. He had never in his life sent an e-mail or even seen the Internet.

He confessed that he’d committed approximately forty robberies a year while in the woods—a total of more than a thousand break-ins. But never when anyone was home. He said he stole only food and kitchenware and propane tanks and reading material and a few other items. Knight admitted that everything he possessed in the world, he’d stolen, including the clothes he was wearing, right down to his underwear. The only exception was his eyeglasses.

Perkins-Vance called dispatch and learned that Knight had no criminal record. He said he grew up in a nearby community, and his senior picture was soon located in the 1984 Lawrence High School yearbook. He was wearing the same eyeglasses.

For close to three decades, Knight said, he had not seen a doctor or taken any medicine. He mentioned that he had never once been sick. You had to have contact with other humans, he claimed, in order to get sick.

When, said Perkins-Vance, was the last time he’d had contact with another person?

Sometime in the 1990s, answered Knight, he passed a hiker while walking in the woods.

“What did you say?” asked Perkins-Vance.

“I said, ‘Hi,’ ” Knight replied. Other than that single syllable, he insisted, he had not spoken with or touched another human being, until this night, for twenty-seven years.

···

Christopher Knight was arrested, charged with burglary and theft, and transported to the Kennebec County jail in Augusta, the state capital. For the first time in nearly 10,000 days, he slept indoors.

News of the capture stunned the citizens of North Pond. For decades, they’d felt haunted by…something. It was hard to say what. At first, in the late 1980s, there were strange occurrences. Flashlights were missing their batteries. Steaks disappeared from the fridge. New propane tanks on the grill had been replaced by old ones. “My grandkids thought I was losing my mind,” said David Proulx, whose vacation cabin was broken into at least fifty times.

Then people began noticing other things. Wood shavings near window locks; scratches on doorframes. Was it a neighbor? A gang of teenagers? The robberies continued—boat batteries, frying pans, winter jackets. Fear took hold. “We always felt like he was watching us,” one resident said. The police were called, repeatedly, but were unable to help.

Locks were changed, alarm systems installed. Nothing seemed to stop him. Or her. Or them. No one knew. A few desperate residents even left notes on their doors: “Please don’t break in. Tell me what you need and I’ll leave it out for you.” There was never a reply.

Incidents mounted, and the phantom morphed into legend. Eventually he was given a name: the North Pond Hermit. At a homeowners’ meeting in 2002, the hundred people present were asked who had suffered break-ins. Seventy-five raised their hands. Campfire hermit stories were swapped. One kid recalled that when he was 10 years old, all his Halloween candy was stolen. That kid is now 34.

Still the robberies persisted. The crimes, after so long, felt almost supernatural. “The legend of the hermit lived on for years and years,” said Pete Cogswell, whose jeans and belt were worn by the hermit when he was caught. “Did I believe it? No. Who really could?”

Knight’s arrest, rather than eliminating disbelief, only enhanced it. The truth was stranger than the myth. One man had actually lived in the woods of Maine for twenty-seven years, in an unheated nylon tent. Winters in Maine are long and intensely cold: a wet, windy cold, the worst kind of cold. A week of winter camping is an impressive achievement. An entire season is practically unheard of.

Though hermits have been documented for thousands of years, Knight’s feat appears to exist in a category of its own. He engaged in zero communication with the outside world. He never snapped a photo. He did not keep a journal. His camp was undisclosed to everyone.

There may have been others like Knight, whose commitment to isolation was absolute—he planned to live his entire life in secret—but if so, they were never found. Capturing Knight was the human equivalent of netting a giant squid. He was an uncontacted tribe of one.

Reporters across Maine, and soon enough across the nation and the world, attempted to contact him. What did he wish to tell us? What secrets had he uncovered? How had he survived? He stayed resolutely silent. Even after his arrest, the North Pond Hermit remained a complete mystery.

···

I decided to write him a letter. I wrote it by hand, pen on paper, and sent it from my home in Montana to the Kennebec County jail. I mentioned I was a journalist seeking explanations for his baffling life. A week later, a white envelope arrived in my mailbox. The return address, printed in blue ink in wobbly-looking block letters, read “Chris Knight.” It was a brief note—three paragraphs; 272 words. Still, it contained some of the first statements Knight had shared with anyone in the world.

“I replied to your letter,” he explained, “because writing letters relieves somewhat the stress and boredom of my present situation.” Also, he didn’t feel comfortable speaking. “My vocal, verbal skills have become rather rusty and slow.”

I’d mentioned in my letter that I was an avid reader. From what I could tell, Knight was, too. Many victims of Knight’s thefts reported that their books were often stolen—from Tom Clancy potboilers to dense military histories to James Joyce’s Ulysses.

Continued (page 2 of 5)

Hemingway, I wrote, was one of my favorites. It seemed that Knight was shy about everything except literary criticism; he answered that he felt “rather lukewarm” about Hemingway. Instead, he noted, he’d rather read Rudyard Kipling, preferably his “lesser known works.” As if catching himself getting a little friendly, he added that since he didn’t know me, he really didn’t want to say more.

Then he seemed concerned that he was now being too unfriendly. “I wince at the rudeness of this reply but think it better to be clear and honest rather than polite. Tempted to say ‘nothing personal,’ but handwritten letters are always personal.” He ended with: “It was kind of you to write. Thank you.” He did not sign his name.

I wrote him back and sent him a couple of Kiplings (The Man Who Would Be King and Captains Courageous). His response, two and a half pages, felt as raw and honest as a diary entry. He was suffering in jail; the noise and the filth tore at his senses. “You asked how I sleep. Little and uneasy. I am nearly always tired and nervous.” In his next letter, he added, in his staccato, almost song-lyric style, that he deserved to be imprisoned. “I stole. I was a thief. I repeatedly stole over many years. I knew it was wrong. Knew it was wrong, felt guilty about it every time, yet continued to do it.”

We exchanged letters throughout the summer of 2013. Rather than becoming gradually more accustomed to jail, to being around other people, Knight was deteriorating. In the woods, he said, he’d always carefully maintained his facial hair, but now he stopped shaving. “Use my beard,” he wrote, “as a jail calendar.”

He tried several times to converse with other inmates. He could force out a few hesitant words, but every topic—music, movies, television—was lost on him, as was most slang. “You speak like a book,” one inmate teased. Whereupon he ceased talking.

“I am retreating into silence as a defensive move,” he wrote. Soon he was down to uttering just five words, and only to guards: yes; no; please; thank you. “I am surprised by the amount of respect this garners me. That silence intimidates puzzles me. Silence is to me normal, comfortable.”

He wrote little about his time in the woods, but what he did reveal was harrowing. Some years, he made it clear, he barely survived the winter. In one letter, he told me that to get through difficult times, he tried meditating. “I didn’t meditate every day, month, season in the woods. Just when death was near. Death in the form of too little food or too much cold for too long.” Meditation worked, he concluded. “I am alive and sane, at least I think I’m sane.” As always there was no formal closing. His letters simply ended, sometimes mid-thought.

He returned to the theme of sanity in a following letter. “When I came out of the woods they applied the label hermit to me. Strange idea to me. I had never thought of myself as a hermit. Then I got worried. For I knew with the label hermit comes the idea of crazy. See the ugly little joke.”

Even worse, he feared his time in jail would only prove correct those who doubted his sanity. “I suspect,” he wrote, “more damage has been done to my sanity in jail, in months; than years, decades, in the woods.”

His legal proceedings were mired in delays, as the district attorney and his lawyer tried to figure out how justice could be served in a case entirely without precedent.

After four months in jail, Knight had no clue what punishment awaited. A sentence of a dozen or more years was possible. “Stress levels sky high,” he wrote. “Give me a number. How long? Months? Years? How long in prison for me. Tell me the worst. How long?”

In the end, he decided he could not even write. “For a while writing relieved stress for me. No longer.” He sent one last, heartbreaking letter in which he seemed at the verge of breakdown. “Still tired. More tired. Tireder, tiredest, tired ad nauseam, tired infinitum.”

And that was it. He never wrote me again. Though he did finally sign his name. Despite the exhaustion and the tension, the last words he penned were wry and self-mocking: “Your friendly neighborhood Hermit, Christopher Knight.”

···

Three weeks after his final letter, I flew to Maine. The Kennebec County jail, a three-story slab of pale gray cinder blocks, permits visitors most evenings at six forty-five. I arrived early. “Who you here to see?” asked a corrections officer.

“Christopher Knight.”

“Relationship?”

“Friend,” I answered unconfidently. He didn’t know I was here, and I had my doubts he’d see me.

I sat on a bench as other visitors checked in. Beyond the walls of the waiting room, I could hear piercing buzzers and slamming doors. Eventually an officer appeared and called out, “Knight.”

He unlocked a maroon door and I stepped inside a visitors’ booth. Three short stools were bolted to the floor in front of a narrow desk. Over the desk, dividing the booth into sealed-off halves, was a thick pane of shatterproof plastic. Sitting on a stool on the other side of the pane was Christopher Knight.

Rarely in my life have I witnessed someone less pleased to see me. His lips, thin, were pulled into a downturned scowl. His eyes did not rise to meet mine. I sat across from him, and there was no acknowledgment of my presence, not the merest nod. He gazed someplace beyond my left shoulder. He was wearing a dull green overlaundered jail uniform several sizes too big.

A black phone receiver was hanging on the wall. I picked it up. He picked his up—the first movement I saw him make.

I spoke first. “Nice to meet you, Chris.”

He didn’t respond. He just sat there, stone-faced. His balding head shone like a snowfield beneath the fluorescent lights; his beard was a mess of reddish brown curls. He had on silver-framed glasses, different from the ones he’d worn forever in the woods. He was very skinny. He’d lost a great deal of weight since his arrest.

I tend to babble when I’m nervous, but I made a conscious effort to restrain myself. I recalled what Knight wrote in his letter about being comfortable with silence. I looked at him not looking at me. Maybe a minute passed.

That was all I could endure. “The constant banging and buzzing in here,” I said, “must be so jarring compared with the sounds of nature.” He shifted his eyes to me—a small victory—then glanced away. His eyes are light brown. He scarcely has any eyebrows. I let my comment hang in the air.

Then he spoke. Or at least his mouth moved. His first words to me were inaudible. I saw why: He was holding the phone’s mouthpiece too low, below his chin. It had been decades since he’d used a phone; he was out of practice. I indicated with my hand that he needed to move it up. He did. And he repeated his grand pronouncement.

“It’s jail,” he said. There was nothing more. Silence again.

I shouldn’t have come. He didn’t want me here; I didn’t feel comfortable being here. But the jail had granted me a one-hour visit, and I resolved to stay. I settled atop my stool. I felt hyperaware of all my gestures, my expressions, my breathing. Chris’s right leg, I saw through the scuffed window, was bouncing rapidly. He scratched at his skin.

Photo: Jennifer Smith-Mayo

My patience was rewarded. First his leg settled down. He quit scratching. And then, rather shockingly, he started talking.

“Some people want me to be this warm and fuzzy person. All filled with friendly hermit wisdom. Just spouting off fortune-cookie lines from my hermit home.”

His voice was clear; he’d retained the stretched vowels of a Down East Maine accent. And his words, when he deigned to release them, could evidently be imaginative and entertaining. And caustic.

“Your hermit home—like under a bridge?” I said, trying to play along.

He presented me with an achingly long blink.

“You’re thinking of a troll.”

I laughed. His face moved in the direction of a smile. We had made a connection—or at least the awkwardness of our introduction had softened. We began to converse somewhat normally. He called me Mike and I called him Chris.

He explained about the lack of eye contact. “I’m not used to seeing people’s faces,” he said. “There’s too much information there. Aren’t you aware of it? Too much, too fast.”

I followed his cue and looked over his shoulder while he stared over mine. We maintained this arrangement for most of the visit. Chris had recently been given a mental-health evaluation by Maine’s forensic service. The report mentioned a possible diagnosis of Asperger’s disorder, a form of autism often marked by exceptional intelligence but extreme sensitivity to motions, sounds, and light.

Chris had just learned of Asperger’s while in jail, and he seemed unfazed by the diagnosis. “I don’t think I’ll be a spokesman for the Asperger’s telethon. Do they still do telethons? I hate Jerry Lewis.” He said he was taking no medications. “But I don’t like people touching me,” he added. “You’re not a hugger, are you?”

I admitted that I do at times participate in embraces.

“I’m glad this is between us,” he said, indicating the glass. “If there was a set of blinds here, I’d close them.”

There was a part of me that was perversely charmed by Chris. He could seem prickly—he is prickly—but this was merely a protective cover. He told me that since his capture, he’d often found himself emotionally overwhelmed at unexpected moments. “Like TV commercials,” he said, “have made me teary. It’s not a good thing in jail to have people see you crying.”

Everything he said seemed candid and blunt, unfiltered by the safety net of social niceties. “I’m not sorry about being rude if it gets to the point quicker,” he told me.

Continued (page 3 of 5)

That’s fine, I said, though I expected to ask questions that might kindle his rudeness. But I started with a gentle one: What was your life like before you went into the forest?

···

Before he slept in the woods for a quarter century straight, Chris never once spent a night in a tent. He was raised in the community of Albion, a forty-five-minute drive east of his camp; he has four older brothers and one younger sister. His father, who died in 2001, worked in a creamery. His mother, now in her eighties, still lives in the same house where Chris grew up, a modest two-story colonial on a wooded fifty-acre plot.

The family is extremely private and did not speak with me. Their next-door neighbor told me that in fourteen years, he hasn’t exchanged more than a word with Chris’s mom. Sometimes he sees her getting the paper. “Culturally my family is old Yankee,” Chris said. “We’re not emotionally bleeding all over each other. We’re not touchy-feely. Stoicism is expected.”

Chris insisted that he had a fine childhood. “No complaints,” he said. “I had good parents.” He shared vivid stories of moose hunting with his father. “A couple of hunting trips I slept in the back of the pickup, but never alone and never in a tent.” After he’d disappeared, his family apparently didn’t report him missing to the police, though they may have hired a private detective. No one uncovered a clue. Two of Chris’s brothers, Joel and Tim, visited him in jail. “I didn’t recognize them,” Chris admitted.

“My brothers supposed I was dead,” said Chris, “but never expressed this to my mom. They always wanted to give her hope. Maybe he’s in Texas, they’d say. Or he’s in the Rocky Mountains.” Chris did not allow his mother to visit. “Look at me, I’m in my prison clothes. That’s not how I was raised. I couldn’t face her.”

He said he had excellent grades in high school, though no friends, and graduated early. Like two of his brothers, he enrolled in a nine-month electronics course at Sylvania Technical School in Waltham, Massachusetts. Then, still in Waltham, he took a job installing home and vehicle alarm systems; valuable knowledge to have once he started stealing.

He bought a new car, a white 1985 Subaru Brat. His brother Joel co-signed the loan. “I screwed him on that,” Chris said. “I still owe him.” He worked less than a year before he quit. He drove the Brat to Maine, went through his hometown without stopping—”one last look around”—and kept driving north. Soon he reached the edge of Moosehead Lake, where Maine begins to get truly remote.

“I drove until I was nearly out of gas. I took a small road. Then a small road off that small road. Then a trail off that.” He parked the car. He placed the keys in the center console. “I had a backpack and minimal stuff. I had no plans. I had no map. I didn’t know where I was going. I just walked away.”

It was late summer of 1986. He’d camp in one spot for a week or so, then hike south, following the natural geology of Maine, with its long, glacier-carved valleys. “I lost track of where I was,” he said. “I didn’t care.” For a while, he tried foraging for food. He ate roadkill partridges. Then he began taking corn and potatoes from people’s gardens.

“But I wanted more than vegetables,” he said. “It took a while to overcome my scruples. I was always scared when stealing. Always.” He insists he never encountered anyone during a robbery; he made sure there was no car in the driveway, no sign of anyone inside. “It was usually 1 or 2 A.M. I’d go in, hit the cabinets, the refrigerator. In and out. My heart rate was soaring. It was not a comfortable act. I took no pleasure in it, none at all, and I wanted it over as quickly as possible.” A single mistake, he understood, and the outside world would snatch him back.

He roamed about for two years before he discovered the campsite he would call home. He knew at once it was ideal. “Then,” he said, “I settled in.”

The majority of North Pond residents I spoke with found it hard to believe Knight’s story. Many insisted that he either had help or spent the winters in unoccupied cabins. As the time allotted for our visit wound down, I challenged Chris myself: You must, I said, have had assistance at some time. Or slept in a cabin. Or used a bathroom.

Chris’s demeanor changed. It was the only time in our meeting that he held eye contact. “Never once did I sleep inside,” he said. He never used a shower. Or a toilet.

He did admit to thawing meat in a microwave a few times during break-ins. But he endured every season entirely on his own. “I’m a thief. I induced fear. People have a right to be angry. But I have not lied.”

I trusted him. I sensed, in fact, that Chris was practically incapable of lying. I wasn’t alone in this thought. Diane Perkins-Vance, the state trooper present at his arrest, told me that much of her job consisted of sorting through lies people fed her. With Chris, however, she had no doubts. “Unequivocally,” she said, “I believe him.”

Before he hung up the phone, Chris added that if I could see where he lived and how he survived, I’d know for sure.

It was my plan to find his camp. Afterward, I said, I’d like to return to the jail. Could we meet again?

His answer was unexpected. He said, “Yes.”

···

The Belgrade Lakes area, where Knight lived, is cow-and-horse rural, nothing like the vast North Woods of Maine, wild and unpeopled. Knight’s camp was located on private property, just a few hundred feet from the nearest cabin, in an area crisscrossed by dirt roads.

When I saw Knight’s woods myself, I understood how he could remain there unnoticed. The tangle of hemlock and maple and elm is so dense the forest holds its own humidity; one step in and my glasses fogged.

But what made navigation truly treacherous were the boulders—vehicle-sized glacier-borne gifts from the last ice age—scattered wildly and everywhere. I thrashed about for an hour, wrenched a knee between two moss-slick rocks, then gave up and retreated to a road.

From left: Jennifer Smith Mayo; Maine State Police/The New York Times/Redux Pictures

Before Chris was jailed, he’d led Hughes and Perkins-Vance to his camp; I knew roughly where it was located, but my second attempt was also a failure. There was no hint of a trail. Mosquitoes swarmed. Finally, reduced to slogging in a gridlike pattern, I squeezed around a boulder and there it was.

My goodness. Chris had carved from the chaos a bedroom-sized clearing completely invisible from a few steps away, situated on a slight rise that allowed enough breeze to keep the mosquitoes away, but not so much as to cause severe windchill in winter. It was surrounded by a natural Stonehenge of boulders; overhead, tree branches linked to form a trellis-like canopy that masked his site from the air. This is why Chris’s skin was so pale—he’d lived in perpetual shade. I ended up staying there three nights, watching the rabbits by day, at night picking out a few stars behind the scrim of branches. It was as gorgeous and peaceful a place as I have ever spent time.

The police had dismantled much of his camp, but during my next visit with Chris, and several after that, he described his living space in meticulous detail. In total, Chris and I met at the jail for nine hours.

He slept in a simple camping tent, which he kept covered by several layers of brown tarps. Camouflage, he felt, was essential; he didn’t want to risk anything shiny catching someone’s eye, so he spray-painted, in foresty colors, his garbage bins and his coolers and his cooking pot. He even painted his clothespins green.

The breadth of his thievery was impressive. He’d fled the modern world only to live off the fat of it. Inside his tent was a metal bedframe he’d removed from the Pine Tree Camp; he had hauled it across the pond in a canoe. He didn’t steal the canoe. He just borrowed one, as he often did, from a lakeside cabin—”there’s a wide selection”—then returned it, sprinkling pine needles inside to make it seem unused. He also stole a box spring and mattress and sleeping bags.

He stole toilet paper and hand sanitizer for his bathroom spot. He took laundry detergent and shampoo for his wash area. There was no fire pit, as he’d insisted. He cooked on a Coleman two-burner stove that he connected to propane tanks. He stole a tremendous number of tanks, pillaging gas grills along the thirty-mile circumference of the pond. He never returned them. He buried the tanks—possibly hundreds of them—in his dump at the camp’s edge.

He stole deodorant, disposable razors, flashlights, snow boots, spices, mousetraps, spray paint, and electrical tape. He took pillows off beds. He kept three different types of thermometers in camp: digital, mercury, spring-loaded. Knowing the exact temperature was mandatory. He stole watches—he had to be sure, while on a raid, that he could return to camp before daybreak.

Deeper into the forest, in his “upper cache,” as he called it, he’d stashed plastic totes filled with enough supplies—a tent and a sleeping bag, some warm clothes—so that if he heard someone approach his camp, he could instantly abandon it and start anew. He was committed.

His diet was terrible. “Cooking is too kind a word for what I did,” Chris told me. He’d not been sick in the woods, and his worst accident was a tumble on some ice, but his teeth were rotten, and no wonder. I dug through his twenty-five years of trash, buried between boulders, and kept inventory: a five-pound tub that once held Marshmallow Fluff, an empty box of Devil Dogs, peanut butter, Cheetos, honey, graham crackers, Cool Whip, tuna fish, coffee, Tater Tots, pudding, soda, El Monterey spicy jalapeño chimichangas, and on and on and on.

Continued (page 4 of 5)

He stole radios and earphones and hid an antenna up in trees. For a while, he listened to a lot of conservative talk radio. Later he got hooked on classical music—Tchaikovsky and Brahms, yes; Bach, no. “Bach is too pristine,” he said. He went through a spell of listening to television shows on the radio; “theater of the mind,” he called it. Everybody Loves Raymond was a favorite. But his undying passion was classic rock: the Who, AC/DC, Judas Priest, and above all, Lynyrd Skynyrd. We covered hundreds of topics while chatting in jail, and nothing received higher praise than Lynyrd Skynyrd. “They will be playing Lynyrd Skynyrd songs in a thousand years,” he proclaimed.

He also stole the occasional handheld video game—Pokémon, Tetris, Dig Dug—but the majority of his free time was spent reading or observing the forest. “Don’t mistake me for some bird-watching PBS type,” he warned, but then proceeded to poetically describe the crunch of dry leaves underfoot (“walking on corn flakes”) and the rumble of an ice crack propagating across the pond (“like a bowling ball rolling down an alley”).

He stole hundreds of books over the years; his preference was military history—he named William Shirer’s The Rise and Fall of the Third Reich as his favorite book—but he took whatever was available. Magazines were more common. When he finished them, he’d create bricks of magazines, bound with electrical tape, and bury them in the ground to level out his camp. Beneath his tent area were dozens of these bricks.

I unearthed a stack of National Geographics with the dates still legible: 1991 and 1992. I also saw People, Cosmopolitan, Glamour, and Vanity Fair. There was even a collection of Playboys. One book Chris never stole was the Bible. “I can’t claim a belief system,” he said. He celebrated no holidays. He meditated now and then but did not pray.

With one exception. When the worst of a Maine winter struck, all rules were suspended. “Once you get below negative twenty, you purposely don’t think,” he told me. His eyes went wide and fearful from the memory. “That’s when you do have religion. You do pray. You pray for warmth.”

···

Chris lived by the rhythms of the seasons, but his thoughts were dominated by surviving winter. Preparations began at the end of each summer as the lakeside cabins were shutting down for the year. “It was my busiest time,” he said. “Harvest time. A very ancient instinct. Though not usually associated with crime.”

His first goal was to get fat. This was a life-or-death necessity. “I gorged myself on sugar and alcohol,” he said. “It’s the quickest way to gain weight, and I liked the inebriation.” The bottles he stole were signs of a man who’d never once, as he admitted, ordered a drink at a bar: Allen’s Coffee Flavored Brandy, Seagram’s Escapes Strawberry Daiquiri, something called Whipped Chocolate Valley Vines (from the label: “fine chocolate, whipped cream & red wine”).

Photo: Jennifer Smith-Mayo

As the evenings began to chill, he grew his beard to the ideal length—about an inch, long enough to insulate his face, short enough to prevent ice buildup. He intensified his thieving raids, stocking up on food and propane. The first snow usually came in November. Chris was always fearful about leaving a single boot print anywhere, which is impossible to avoid in a blanket of snow. And so for the next six months, until the spring thaw in April, Chris rarely strayed from his clearing in the woods.

I asked him if he just slept all the time, a human hibernation. “Completely wrong,” he replied. “It’s dangerous to sleep too long in winter.” When seriously frigid weather descended, he conditioned himself to fall asleep at 7:30 P.M. and get up at 2 A.M. “That way, at the depth of cold, I was awake.” If he remained in bed any longer, condensation from his body could freeze his sleeping bag. “If you try and sleep through that kind of cold, you might never wake up.”

The first thing he’d do at 2 A.M. was light his stove and start melting snow. To get his blood circulating, he’d pace the perimeter of his camp. His feet never seemed to fully thaw, but as long as he had a fresh pair of socks, this wasn’t a problem. “It’s more important to be dry than warm,” Chris said. By dawn, he’d have his day’s water supply. “Then, if I had had food, I’d have a meal.”

And if he didn’t have food? There were, he said, some very hard winters—desperate winters—in which he ran out of propane and finished his food. The suffering was acute. Chris called it “physical, emotional, and psychological pain.” He hinted to me there were times he contemplated suicide.

Why not just leave the woods? Chris said he thought about it. He even kept a whistle in his camp. “If I blew on it in sequences of three, help might come.” But he never used it. Rather, he made a firm decision that unless forcibly removed, he was going to spend the rest of his life behind the trees.

When he heard the song of the chickadees, he told me, he could finally relax. “That alerted me that winter is starting to lessen its grip. That the end is near. That spring is coming and I’m still alive.”

The cold never got easier. All his winter-camping expertise felt offset by advancing age. “You should have seen me in my twenties,” he boasted. “I was lord of the woods. I ruled the land I walked upon. I was tough and clever.” But over time, like an aging athlete, his body began to break down. The biggest issue was his eyesight. “For the last ten years, anything beyond an arm’s length was a blur. I used my ears more than my eyes.” If he saw a pair of glasses during a break-in, he always tried them on, but was unable to find a better prescription. His agility faded; bruises took longer to heal. His teeth constantly hurt.

The victims of his thefts, after years of waiting for a police breakthrough, eventually took matters into their own hands. Neal Patterson, whose family has owned a place on the pond for fifty years, began hiding all night in his dark house with a .357 Magnum in his hand. “I wanted to be the guy that caught the hermit,” he said. He stayed up fourteen nights one summer before he quit.

Debbie Baker, whose young boys were terrified of the hermit—to quell their fears, the family renamed him “the hungry man”—installed a surveillance camera in their cabin. And in 2002, they captured a photo of Knight. The police widely distributed the photo and figured an arrest was imminent.

It took eleven more years. After a robbery in March of 2013 at the Pine Tree Camp, Sergeant Terry Hughes, who often volunteered there, contacted the border patrol for advice. “It had gone on long enough,” said Hughes. He installed a motion detector that sounded an alarm at his house and practiced dashing from his bed to the camp until he had it down under four minutes. Then Hughes waited for the hermit to return.

···

Following his arrest, the court of public opinion was deeply divided. The man who wanted to live his life as invisibly as possible had become one of the most famous people in Maine. You could not walk into a bar in the Augusta area without stumbling into a debate about what should be done with Christopher Knight.

Some said that he must immediately be released from jail. Stealing cheese and bacon are not serious crimes. The man was apparently never violent. He didn’t carry a weapon. He’s an introvert, not a criminal. He clearly has no desire to be a part of our world. Let’s open a Kickstarter, get him enough cash for a few years’ worth of groceries, and allow him to go back to the woods. Some people were willing to let him live on their land, rent-free.

Others countered that it wasn’t the physical items he robbed that made his crimes so disturbing—he stole hundreds of people’s peace of mind. Their sense of security. How were they supposed to know Knight wasn’t armed and dangerous? Even a single break-in can be punishable by a ten-year sentence. If Knight really wanted to live in the woods, he should’ve done so on public lands, hunting and fishing for food. He’s nothing but a lazy man and a thief times a thousand. Lock him up in the state penitentiary.

On October 28, 2013, Chris appeared in Kennebec County Superior Court and pleaded guilty to thirteen counts of burglary and theft. He was sentenced to seven months in jail—he’d already served all but a week of this, waiting for his case to be resolved. The sentence was far more lenient than it could have been, though even the prosecutor said a long prison term seemed cruel in this case. Chris was ordered to meet with a judge every Monday, and avoid alcohol, and either find a job or go to school. If he violated these terms, he could be sent to prison for seven years.

Before his release, I met with Chris again. He said he’d be returning home, to live with his mother. His beard was unruly—”my crazy hermit beard,” he called it. He was alarmingly skinny; he itched all over. We still didn’t make much eye contact.

“I don’t know your world,” he said. “Only my world, and memories of the world before I went into the woods. What life is today? What is proper? I have to figure out how to live.” He wished he could return to his camp—”I miss the woods”—but he knew by the rules of his release that this was impossible. “Sitting here in jail, I don’t like what I see in the society I’m about to enter. I don’t think I’m going to fit in. It’s too loud. Too colorful. The lack of aesthetics. The crudeness. The inanities. The trivia.”

Continued (page 5 of 5)

I told him I agreed with much of his assessment. But, I wondered, what about your world? What insights did you glean from your time alone? I had been trying to ask him these questions every visit, but now I pushed the point harder.

Anyone who reveals what he’s learned, Chris told me, is not by his definition a true hermit. Chris had come around on the idea of himself as a hermit, and eventually embraced it. When I mentioned Thoreau, who spent two years at Walden, Chris dismissed him with a single word: “dilettante.”

True hermits, according to Chris, do not write books, do not have friends, and do not answer questions. I asked why he didn’t at least keep a journal in the woods. Chris scoffed. “I expected to die out there. Who would read my journal? You? I’d rather take it to my grave.” The only reason he was talking to me now, he said, is because he was locked in jail and needed practice interacting with others.

“But you must have thought about things,” I said. “About your life, about the human condition.”

Chris became surprisingly introspective. “I did examine myself,” he said. “Solitude did increase my perception. But here’s the tricky thing—when I applied my increased perception to myself, I lost my identity. With no audience, no one to perform for, I was just there. There was no need to define myself; I became irrelevant. The moon was the minute hand, the seasons the hour hand. I didn’t even have a name. I never felt lonely. To put it romantically: I was completely free.”

That was nice. But still, I pressed on, there must have been some grand insight revealed to him in the wild.

He returned to silence. Whether he was thinking or fuming or both, I couldn’t tell. Though he did arrive at an answer. I felt like some great mystic was about to reveal the Meaning of Life.

“Get enough sleep.”

He set his jaw in a way that conveyed he wouldn’t be saying more. This is what he’d learned. I accepted it as truth.

“What I miss most,” he eventually continued, “is somewhere between quiet and solitude. What I miss most is stillness.” He said he’d watched for years as a shelf mushroom grew on the trunk of a Douglas fir in his camp. I’d noticed the mushroom when I visited—it was enormous—and he asked me with evident concern if anyone had knocked it down. I assured him it was still there. In the height of summer, he said, he’d sometimes sneak down to the lake at night. “I’d stretch out in the water, float on my back, and look at the stars.”

At the very end of each of our visits, I’d always asked him the same question. An essential question: Why did he disappear?

He never had a satisfying answer. “I don’t have a reason.” “I can’t explain why.” “Give me more time to think about it.” “It’s a mystery to me, too.” Then he became annoyed: “Why? That question bores me.”

But during our final visit, he was more reflective. Isn’t everybody, he said, seeking the same thing in life? Aren’t we all looking for contentment? He was never happy in his youth—not in high school, not with a job, not being around other people. Then he discovered his camp in the woods. “I found a place where I was content,” he said. His own perfect spot. The only place in the world he felt at peace.

That was all he had to tell me. He’d grown weary of my visits. Please, he begged, leave me alone; we are not friends. I don’t want to be your friend, he said, I don’t want to be anyone’s friend. “I’m not going to miss you at all,” he added.

I liked Chris, a great deal. I liked the way his mind worked; I liked the lyricism of his language. But he was a true hermit. He could no longer disappear into the wild, so he wished to melt away into the world.

“Good-bye, Chris,” I said. A guard had appeared to escort him away, but there was time for Chris to express a last thought. He did not. He hung up the phone. No wave; no nod. He stood, turned his back on me, and walked out of the visitors’ booth and down a corridor of the jail.

MICHAEL FINKEL is the author of True Story.

Where can I go, when I’m addicted?

addiction-title

Where can I go, when I’m addicted?

Betsy is an attractive middle aged blonde, living with her parents. In this economy it is difficult to make ends meet. Appearances are often deceiving. Besty had travelled from the mid-west, to take care of her parents: her father has senile dementia, and her mother just had surgery to remove a cancerous tumour, and has a feeding tube.

One day I heard a knock at the door. It was Betsy. Her hair was a bit dishevelled, she slurred her speech, and she was not steady on her feet. As she passed by, I knew the reason. She was drunk. I could smell it on her breath. God must have had a reason to send her my way. Like the prophet Nehemiah, I shot a “prayer arrow” (Neh 2:4-5) to God asking for wisdom.

She wanted to go to the store for more booze. She had the keys to her car in hand. But she realised that she could not drive. Okay God, what do I do now? Almost by instinct, we have a tendency to do a knee jerk response. We want to play junior Holy Spirit, and judge. I sensed that was not my role. That is NOT what God wanted. It was a “woman at the well” (John 4:1-26) scenario. There is an old saying: “In vino veritas.” In wine, there is truth. I have 2 ears and 1 mouth, so I did twice as much listening, than talking.

As I listened, I discovered that she was trying to take care of her parents by herself, with no respite (rest and relief.) My family reached a point with my Dad, where we could no longer provide for his care. I understood where she was coming from. Betsy’s mother is very critical of her, and did not appreciate the sacrifice. Her parents did not drive her to drink, but they contributed. Scripture warns parents not to exasperate their children (Eph 6:4)

I asked Betsy, what role God played in all of this? She said: “I can’t believe a loving God would allow my parents to suffer this way.” “Ahh” I muttered to myself: “The Disneyland Syndrome.“ For a moment, I was able to share good news. I gave her a card for an online church, which she can access from her computer, on her schedule. God opened the door, just a crack.

There are many people who are on the fringe of society. Drunk, poor, addicted, gay, hiv/aids, lonely, widowed. Where can these people go? I could have just shut the door, instead God provided an opportunity to share the good news.


can i take my addictions into your theology
is it big enough to feel my pain
or will i stain your glass
with street smells and sweat
and where can i go
and where can i go
when i’m addicted?

Steve M. – outcastpress.org

Aspergers and relationships

A salient ability of Aspergers, is the ability to view everyone equally. Black. White. Brown. English Speaking, non-English Speaking. Republican. Democrat. Young. Old. All are equal in the eyes of most Autistic’s. This can be a decided advantage in dealing with the varied opportunities for relationships. It can also be an unravelling. Those on the Autistic Spectrum are easily blind sided by the need to custom tailor their approach to relationships to an individual, and not the group en masse. What works for one group or individual does NOT always work with another.

Ignoring someone with Autism/Aspergers is the most powerful weapon Neuro-Typicals (NT) employ. Silence (no communication) is interpreted as rejection. The deafening cry is a plea to be left alone.

For many, the social information can not be processed correctly or immediately. It takes a long time (weeks or months) to understand when a relationship is over, because many process emotional information, through logic. When the social information is properly decoded, there may be a plea for grace to end the relationship expeditiously and friendly, so that the loss can be appropriately mourned, and the long journey to restoration can finally begin.

Wayno
October 16, 2011

Ministry and the Disabled

I found this 15 minute video, from Dallas Theological Seminary to be a refreshing insight of Ministry and the Disabled.

This is precisely where I am.  But he left out one category:  social disability.  I struggle with Autism.

Ministry and the Disabled

Ministry and the Disabled (2007) (Summary of the Video)

I. Who are the disabled? (disabilitystatistics.org)

1. Sensory (Blindness, Deafness, Severe Vision or Hearing Loss)

2. Physical Disability (trouble moving by themselves)

3. Mental Disability. (Learning, Remembering, Concentrating)

4. Go outside the home

5. Employment

6. Self Care

Disabled over the age of 5, and NON-institutionalized. (In U.S.)

10 million
10 – 15 million
20 million

Over 20 million?

As of 2007, 41.3 million non-institutionalized and over the age of 5.

1 in 5 have a functional disability.

54 million in the U.S. (National Organization on Disability)

As age goes up, chances of disability go up.

Majority of disabled over 18.

Special needs. Special and needy but geared only to kids.

Disability viewed as abnormality, but is it?

Life between trees

Garden of Eden                              Heaven
Tree of Life            Fall of Man         Tree of Life
Gen 2:9                 Gen 3               Rev 22:22
(disability/abnormal)   disability/normal   disability/abnormal)

Rev 21: God wipes away tears, and no more suffering.

55 y.o. stroke victim. Can’t speak, but otherwise okay. Where do they put him? Special needs ministry for kids.

Less then 15% of churches have a disabled ministry.

53% have no church.

54 million people — 1/2 don’t attend church.

2 in 7 families have a disabled family member.

85% of marriages end in divorce when one disabled child present.

No public places. No baby sitter. No church support.

What do we do?

The role of online church ministry in the world today

As you saw from the previous video, about 20% of the population of the United States is disabled. Some mildly, some severely.

I have Aspergers Syndrome. A form of Autism. I do NOT read social information correctly. Body language and cues, are foreign to me. I stumble through social situations. Always uncomfortable. Always unsure, of what to do or say next.

Some parents of severely autistic children, find it hard to find a place to worship, simply because the church does not accommodate autism, or traumatic brain injury. How to you reach these folks for Christ, is they can not come to a brick and mortar place of worship?

The church instead, goes to them. 24/7/365 online church is streamed live via the internet. For me, it was God sent. I was too far away from my old church, and could not afford to travel that far. I tried to find a church close by, but while you can kick the tires on a car, they don’t like you kicking people in the congregation. Online church allows me to be as engaged in the discussion, or as anonymous as I need to be.

They are no expectations to meet. There are other Christians there to help guide you along the journey to pray for you. Chat Moderators from all over the world, allow services to be global in nature, and not just minister to one locality.

The world is now a global village. And to shun a person or pigeon hole them because of a physical or mental disability, is becoming less of a barrier. How do we reach these people?

One person at a time.

The ABC’s of Communication

A – Adjust your agenda. Make the time to minster to these people. Meet them where they are at. Home, lonely, often dejected. Each has a story that must be told, must he heard, and must be prayed for. Take the time to listen, and meet the needs of the individuals.

B — Build a bridge. Find something you both are genuinely interested in, and cross that bridge together. It could be movies, art, music, tv, books….anything. Find something you both have in common and both enjoy. This requires you to invest time in the life of another person.

C — Communicate the character of Christ. People do not need to see our mouth flapping, they need to see our life working. It means being as transparent and open and honest as possible.

As one author said:

“Tell me how much you pray for a person,
and I will tell you how much you have loved them.”

Brillat-Savarin

Wayno

The Real Me: A look at Dyslexia, Dysgraphia, and Learning Disabilities

TO: CLASSROOM TEACHERS

SUBJECT: The Real Me – A Composite Picture

FROM: The Dyslexic Student in your Class (assisted by Jo Polk, Language Science Teacher)

I just wanted to write you a note to say thanks for all the time and trouble you put in working with me at school every day. Also, there are a lot of things I would like for your to know about me, but trying to put my thoughts down on paper is the hardest thing I do, so my Language Science teacher said she would help me try to tell you what I’m really like.

I know you are interested in what I’m really like because you had me fill out that questionnaire about what I liked best. Well, I told you the food I liked best was hot dogs, but I hate hot dogs! What I really like is spaghetti, but I couldn’t spell that. I also told you my favorite subject is math, but I had to put that down, because I couldn’t spell “science.” So I never can say what I really mean when I’m writing because I can’t spell what I want to say. My teacher says that some studies show that there is a relation between violence and an inability to say what you want to say, either because of a poor vocabulary or because the words are just “tied up” inside of you and won’t come out no matter how hard you try. Sometimes I do just feel like I’m going to explode!

I know that I must be a puzzle in class sometimes because, even though I look like the other kids and act like them, most of the time, I just can’t seem to do my work as well as they do. Maybe you just think I’m kind of weird and that’s why I wanted to try to tell you what it feels like to be me.

This is kind of what it feels like: Do you remember what it felt like when you had that earache and had to have drops and a piece of cotton in your ear? Or when you had your eyes dilated and words looked blurred, and you couldn’t read very well? Or when you had a broken finger or arm and had to do everything with the “wrong” hand? Or how frustrated you feel when you can’t bring up the word you want? Or you can’t remember someone’s name? Or you drink too much of what you want? Or you drink too much coffee and have a case of coffee nerves, and you feel all jittery and uncomfortable inside – and no one else really knows it?

Then suppose you’re struggling with all these things – and the principal walks in to appraise you – and stays six hours! (A whole school day!) (Mom said I should put that in to help you see how I feel, because she said even a TEACHER gets blurry eyed and jittery when she’s getting appraised – whatever that is!) If you can imagine all these things then maybe you feel something of the way I feel at the end of a school day. So sometimes I go home and blow up at Mom and Dad – and they ground me!

I can do some things pretty well though. For instance, I’m a fairly good math student, but words are almost meaningless to me. (That’s what dyslexia is, you know – “bad words.”) So when you give me vocabulary terms to learn in math – they might as well be Japanese! Same way with computer terms or word problems. You see a lot of times I can solve math problems in my head, but when I have to write them down, I make a lot of mistakes – especially if they involve subtraction or multiplication facts.

And I know you must wonder why I almost never get everything copied down from the board. Well, I’m what the doctor calls dysgraphic, which means that my hand just won’t always do what my brain tells it to, so my writing is cramped and out of line and has poor spacing. Besides that, I’m left handed, and I just never did learn to hold my pencil correctly.
Because it’s so hard for me to copy from the board I very
often don’t get home with a complete vocabulary list or notes to study, so I make a bad grade on my test because I didn’t have all the information to study.

Of course copying from the board is usually not as hard as copying form a transparency. Besides the fact that the lights bother me, the letters sometimes blur and seem to move, so by the time I relocate a word that I was working on, the transparency has been moved, and I’m completely lost. That’s usually when I kick Bobby to make him mess up too. And if you’re talking while I’m trying to copy – forget it! I don’t get the notes copied and I also miss what you’re saying!

Just think how confusing it is to try to work with these handicaps in a room with twenty-five or thirty other people moving about and making noise. I also have to try to resist what my teacher calls the “visual static” of highly coloured bulletin boards maps, pictures, charts, posters, etc. I like these – they’re pretty! But the “gatekeeper” in my brain lets in too much of this stimulation and it boggles my mind.

My teacher says all of this stuff makes me have an “output deficiency.” She says that means something is different about the integration process – that after sensory information is received by my brain, something different happens in the neuronal, electrical and/or chemical processes somewhere in my central nervous system. This different neurological organization often keeps me from responding properly to stimuli. (She’s always talking weird like that! We just try to overlook her.)

But some of these things that are different about me make me really good at things like art and music and drama. And everybody in my house brings me things when they need to be fixed. I’m a great swimmer and golfer. And I’m learning photography as a hobby, and I can usually think of a solution to problems that’s different from what everyone else comes up with – and I fell good about that. I’m inquisitive too, and I want to know how everything works.

But yeah, I know I’m in trouble a lot. You’re probably thinking about the bus conduct report I got last week. But how was I to know when the bus driver said, “Hit the seat!” that she meant for me to sit down. Instead, I whacked the seat with my lunch kit and tore the upholstery and she got mad! Why don’t adults say what they mean?

Another thing about me is, what I’d really like to do is to play sports, but it seems like I’m always doing something wrong in football practice. When the coach calls us into the muddle (seems like that to me!), I try to concentrate but my auditory mis-perception problem gets in the way, and I hear what he says, but I just don’t understand what he means. My dad says too, that I can remember some things like an elephant, but that my short term memory is not so good, so I forget the plays. Then when I get on the field and run right instead of left, well.

But I always have too much homework to play football anyway, so I thought I would try band, and I could practice at night after I got my homework done. Boy, I’ve got my problems there too, though. The director tells me I must look at him and if I do, I lose my place on the music, and all the lines and spaces and notes run together and I’m just lost. And the rhythm! I know I couldn’t hear accent in words, but I didn’t know that I would also have trouble with the strong and weak beats in music!

Well it may not matter much, because I don’t want to be a football star of a musician when I grow up, anyway. I want to be a veterinarian – or maybe a surgeon like my mother’s brother. Maybe I can make it, because Mom said my uncle couldn’t have made it through medical school without a reader. I told Mom I couldn’t believe they have basal readers even in medical school.! (Those things will haunt me all my life, I guess!) She said that wasn’t what she meant -just like the bus driver!

Well anyway, my parents say it was the luckiest day of our lives when we moved to this school and I got put in classes with teachers who try to understand and work with me. They said kids like me used to drop out of school – but, then those kids didn’t have teachers like you!

I’ve got to get out of here. It’s 5:30 already and dinner’s at 6:00. Yikes! That’s not 5:30 – it’s 6:25! Oh, no. I’m late again! Mom says I have NO sense of time!

Well thanks again. See you in class tomorrow. I’ll be the one rummaging through my backpack trying to find my pencil and paper. So now for long!

Jo Polk 10/1/87

Copyright (c) Jo Polk – All rights reserved.

Regarding Dysgraphia: (personal note)

My whole learning process is oriented toward hearing, not seeing. It was how I coped with this disability. I never even knew I had it. I just knew, it was hard to learn subjects like math, which is all visual. I had to tape lectures in college and listen to them again. Trying for copious notes just didn’t work. It is probably why my eye/hand co-ordination is so poor, and why I do very poorly at video games. I grew up feeling like I was a clumsy”“klutz” and never knew why. I was never good at sports,never good at art, drawing, or so on. Cursive writing is impossible for me. It’s why I print, and use block letters, to this very day. Stroke by stroke, I form each letter.

I discovered this, when I was doing volunteer work at the Orton Dyslexia Society, in the San Fernando Valley. (They have an excellent chapter in San Diego!) I wanted to better understand some of the other kids I meet, who have learning disabilities, as well as myself.

Dysgraphia, like Dyslexia, is covered under the American’s with Disabilities Act (ADA). If I ever return to school, I will be provided with a note taker, at no cost. Early diagnosis, is important. I went most of my life, thinking that I was ”“different!” I was! But now, I know why. Note that the official diagnosis (for me) was made by a Psychiatrist.

There is solace in numbers. CS Lewis said this: ”“Perhaps the most liberating words ever spoken in any language are these:You too? I thought I was the only one!”

And so it goes –

Wayno Guerrini
September 10, 2000
Addendum

I was diagnosed with Asperger Syndrome, in August, 2008.

This is especially poignant:

Dysgraphia

Cases of dysgraphia in adults generally occur after some neurological trauma. Dysgraphia may also be diagnosed in a person with Tourette syndrome, ADHD or an autism spectrum disorder such as Asperger syndrome.

This explains a lot of my childhood struggles.

The Sameness of Days

Reprinted from here

Wayno

The Sameness of Days

Those of us with Aspergers/Autism find it difficult to navigate in an environment that is both foreign and un-inviting to us.

On one hand, you will find we like things in our environment, the same each day. We may wear the same clothes, watch the same tv program’s, eat the same food. We like things ordered, and to a degree, predictable. We want to find the keys and remote in exactly the same place each day.

We almost ritualise certain events. I myself have a tendency to eat virtually the same things everyday. Breakfast is usually hot oatmeal cooked on a stove (NOT microwaved!) It’s not that we don’t know how, it is that innately we desire a sense of control and order over our environment. This is shown in the things we say and do. For variety though, I do have polenta occasionally, Cheerios, and on Wednesdays and Sundays – an omelette which I make for myself. It’s not laziness or lack of initiative, or even lack of knowledge (I am an accomplished cook.) We have a daily schedule, to which invariably, we internally adhere.

We sit in the same place in restaurants. Why? Because we know where everything is. God help us, if the floor is wet, and we have to sit someplace strange. (The booth next door.) I am fortunate in having a friend here, that understands that I need to scope out the inside of a restaurant to make sure it is not too crowded. Autistics NEVER like to have their escape path to the outside, blocked. Perhaps unconsciously, we position ourselves so that we can always see the exit. When things get too intense for us from a sensory overload (just several people talking at the same time in a room, makes a cacophony of sound, that overwhelm many of us.) I have left meetings simply because my escape route was suddenly cut off. Sometimes we need to exit a situation, that becomes over stimulating for us.

I was in the Emergency Room of a hospital here last week. Many of us, can’t filter out the distractions: lights, sounds, colors, noises, or odors that envelop us. And so we may ask to dim the lights, close the curtain or close the door. Anything to block the over stimulation. When I informed the staff that I had Aspergers, I might as well have said I am from another planet. Most Medical Professionals I have discovered, are 129% clueless when it comes to Autism.

My Primary Care Doctor, let me explain to him, what having Aspergers is like for me. He took the time, to accommodate Autism. His welcome and inviting tone and manner greeted me when I was finally transferred to a room. I didn’t have to explain. He already knew. More people would be wise to follow in my physician’s footsteps, and take a few minutes to educate themselves, on how Autism affects our daily lives.

A good place to start: All Cats Have Asperger Syndrome by Kathy Hoopmann

As much as we like things to stay the same, we also want to form bonds and friendships. That is an area, where we Aspies (as we call ourselves) don’t function well. We are unable to read the social cues and body language of the people around us. It is very hard for us to form relationships, simply because we don’t have the skills necessary to do so.

We isolate ourselves from a harsh and cruel world, because we are tired of the rejection and snide comments made by NT’s. (Neuro-Typicals. Our name for people that are NOT on the Autistic Spectrum.) We sit in the corner, and pretend to be a wall flower. We don’t belong. We don’t fit in. We feel like the proverbial square peg in a round hole. We go into survival mode. Magical thinking.

If we sit in a corner, we can be invisible and won’t have to talk. Gosh what do we talk about? I don’t watch sports, and the weather: Yup it’s hot out there, all right! Aspies are not interested in weather, or sports per se. But I speak for myself only. We’d rather discuss: books, movies, politics, religion, sex or music. Anything other then the dull. Mundane. Ordinary. We might discuss things which are resolutely insignificant to the world, but which makes our inner world, revolve.

Yeah we’re the kid in the corner who sits by himself, because he is so beaten up emotionally, that removing himself mentally into an imaginary world, might be the only method of coping. I am the adult, who sits in the same booth almost everyday, orders the same thing off the menu everytime, and sits alone. I talk to imaginary friends as well, because there is no one else.

Pets for many of us, are the only creatures we know on the planet, that won’t automatically judge us. They love unconditionally: just as I am. We don’t have to hide who we are. We are free to be ourselves. They give back to us, the love that the world so harshly with holds.

Many of us, are penurious. We give our time, instead of money. All we want is to be recognised for our contribution, however small it may be. We depend on others to remind us of God’s love and God’s forgiveness, by returning a simple please or thank you. Basic Human kindness. The little things.

We all need affirmation. What’s that? It’s simply saying the right thing, at the right time. Looking beyond the quirks and eccentricities, to see someone and something of value. Few people are willing to take the time to get to know us, let us stumble through friendship, and make a deep and enduring impression on our lives. Those few that do venture into the world of Aspergers, may find a deep, abiding friendship and loyalty that is unparalleled in their own world. But until that happens, everyday is like the day that came before. Nothing varies. Nothing changes.

Wayno Guerrini

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