Chaos is comforting for those who carry the deep psychic scars of long and unspeakable battles. At the close of the Vietnam War countless American soldiers found themselves restless and overwhelmed upon finally returning home. After fearing for their lives in the humid jungles of a hostile, alien world, dreaming only of drive-in movies, good ol' American food, and the family and sweethearts they left behind ... these ghostly survivors found their long awaited homecoming not only disappointing but oddly terrifying.
I went undiagnosed for nearly 25 years. That alone resulted in enormous stress and heartache. To make matters worse, my family faced a series of tragedies to rival those of Job, that ever-suffering Biblical figure.
Shortly after my diagnosis, my life grew stable for the first time in over two decades. Yet my anxiety was more crippling than ever. I wanted only to return to the comforting chaos of my past. Why?
The following words are a cryptic portrait of a profound inner struggle—a battle between my ruptured psyche, still caught somewhere in the humid jungles of my own suffering, and the brutally unfamiliar calm following that devastating storm.
A Prisoner of Heaven
On empty streets I searched for knowledge in a bottle of beer
And glimpsed the comedy of life while staring down the barrel of a .45.
But I learned! Oh, I learned!
And poetry ran wild and barefoot through the garbage in the sweatbox alleys.
We slept in the shadow of society,
Lying on our backs beneath a concrete network of freeways,
While the hum of the traffic above lulled us to sleep.
As we closed our eyes we vowed to be friends forever.
But forever came sooner than expected.
I was shot down in the streets on a quiet summer evening,
When the air was perfumed with adolescent lust and rage
And the red sky was cut into one long, jagged strip by the black teeth of the skyscrapers,
The skyscrapers that knelt their heads when my blood hit the pavement,
And seemed to onlookers like great robed monks standing in mourning.
These things I remember.
I see them now like blood-stained snapshots.
But we are not to think of such things here in heaven.
Though I am safe in this place I miss my friends
And we have wine only for our meals.
The rest say terrible things about the streets I came from
And they are happy for their eyes have seen God.
I too have seen God
And cried out when I looked into his eyes ...
For I could not mistake the eyes of the boy who killed me!
And though the rest of his features were kind I knew then that I'd been lied to,
And vowed to escape this gilded prison.
All around me are smiling faces, empty as a mannequin's.
The birds in the trees are stuffed yet somehow they sing.
My neighbors believe I am their friend
But I am alone.
Last night, as the voices of the choirs drifted like lazy gulls into the sunset,
I dreamt I was lying on my back beneath a freeway.
My friends slept around me.
It was quiet.
I was hungry and I was scared but that was alright,
For I could hear the hum of the traffic above me.
I knew that it would put me to sleep
And, momentarily forgetting heaven,
I believed it would meet my ears when I awoke.
Cody in a crowded mall, a noisy restaurant or a social scene where chaos runs amuck used to spell disaster. There is nothing that would send him spinning into a full-blown rage faster than the lack of structure and routine. Communicating his needs and desires at home is difficult for him. But in a situation like this he simply wasn’t equipped for it.
There is a certain part of the brain that processes communication. There are days when Cody’s brain processes speech just fine. But on a normal day it is sketchy at best. He knows what he wants to say, but the signals from the brain to the tongue short out along the way.
Imagine taking a movie on DVD, putting it into the player and then looking for a particular scene somewhere in the middle of the movie. You hit the skip button and you hear a few words from a scene. Then you decide that isn’t the scene you are looking for. So you skip to the next scene. You hear a few words from that scene but it isn’t the right one either. So you continue this process until you come to the right location of the movie. Now take all the words from the segment of the movie you just heard and put them together in a paragraph. You probably will end up with something that makes no sense to you. That’s sort of how Cody’s speech patterns work. You can kind of get a picture of how frustrating that would be for him.
What if many people are present in a room and conversing in several groups all at the same time, and there are people attempting to converse with you? Perhaps there are many different activities going on as well. Maybe two or three people are at a buffet table getting food and talking. Three or four are ordering drinks at the bar. There’s a group of people playing pinball, a group who are playing darts and another group who are playing video games. Now take the volume of all the noise and amplify it about 10 times. Take all the activity and speed it up about five times faster. How would you feel? Would the noise level bother you? Would the multitude of people and activities be overwhelming to you? This scenario might have the same effect on a neurotypical individual as a normal pub and grill scene has on Cody.
Cody does enjoy going to social activities but they must involve an itinerary for all the people to follow. Going to a movie theater is one example of a social activity that Cody enjoys. If everyone is doing the same thing then it makes it very clear to Cody what the agenda is. This makes him feel like he finally fits in with a crowd.
Sometimes being social is participating in something with only one other person. Cody and his tech, Stephen, often go to the recreation center to play basketball. They both like antique stores so they often go there to browse around. They go to the nature center and to the local discovery center—a sort of science museum here in the area. Stephen is very astute about how to converse with Cody, and sets an example of how to converse and be social with others. Because of this, Cody is now progressing toward being able to participate in activities with small groups of people.
Small groups are best for Cody right now. Larger groups tend to have too many who wish to do their own thing. For instance, if a large group of people visit an amusement park, there may be some who want to go to the fun house, some who want to ride the roller coaster, some who wish to see the animal exhibits and some who want to ride the Ferris wheel. So which group will Cody join? There are many options on the table, in a crowded place where many people are doing different things all at the same time. For some of us, it’s not an issue. For Cody it’s quite the conundrum.
Finally being able to see him begin to learn how to enjoy the things his neurotypical peers have been enjoying for a long time is a welcome sight. It makes my eyes well with tears to see his life becoming full of new adventures … things many others may take for granted. While he may have a long way to go I know Cody can do it. After all he’s come a long way in a short time, already!
Don't you just love it when things don't go as planned?
Of course, most of us don't love it. We like our plans. We like being in control, despite the fact that this is an illusion.
While I believe that being prepared and making plans are important, being unprepared—in the sense of being open and receptive—is also a skill worth cultivating.
I don't need to make this point to those in special needs families, because you already know all about this. You know how important it is to take a deep breath and let go when things get wild and crazy.
This being the case, it is you who have been my greatest teachers in the art of loosening up. My relationship with my brother Willie and with others in the L'Arche community have showed me, time and time again, that adhering to a rigid sense of how things ought to be leads to missing out on the strange, true, chaotic wonder of what is.
In short, it is because of those relationships that I was able to go with the flow at the Lollipop Kids Foundation Family Support Day last Saturday. As I wrote in last week's column, I'd volunteered to lead fellow siblings in a Sibling Support group. I'd prepared a mini-curriculum, complete with questions, activities, and time for reflection.
However, I'd prepared with the (incorrect) assumption that the siblings would be teenagers, or pre-teens at least. Yet as I enjoyed meeting families during lunch, I realized that nearly all of the siblings present were 10 years old or younger. In fact, one sibling was only 3 years old!
Oddly enough, I didn't feel panic. I'd resolved to show up and be present for whomever came to the event, and if that meant throwing my plans out the window, so be it.
I will always be glad that I did choose to show up. Though there was a fair amount of chaos—the 3-year-old's sole mission was to escape from the supervision of his (very patient) 14-year-old brother—there were also moments of strong connection. Though we took breaks to tangle ourselves up in a “Human Knot” and listen to Taylor Swift, we did talk about the realities of being a special-needs sibling.
The kids shared their experiences with straightforward transparency: How cool it was that their special-needs siblings had unique gifts, how awesome it was to know just how to make their siblings smile. They also shared the harder things: How frustrating it was when one parent always had to stay with their sibling, how self-conscious they felt when their sibling did something strange in public.
When I shared stories from my life, they reciprocated immediately. When I spoke about how frightening it was when my brother got out-of-control angry and punched holes through walls, another girl spoke up, saying that her dad had punched a hole in a wall after a frustrating time with her sibling. We met each other's gaze, and something of the isolation every sibling experiences healed over for both of us. As I listened to their stories—so like my own—I felt tears prickle in my eyes.
Despite the age difference, I felt akin to these kids. One young girl in particular seemed a kindred spirit. She was incredibly smart, perceptive, and kind; her presence was an anchor in the group. Because of her, I felt brave enough to share a little bit from my book, “Love's Subversive Stance.” Though I didn't read a story aloud like I'd planned, the kids loved looking at pictures of me and Willie when we were younger.
As the event drew to a close, my kindred spirit approached me, a copy of my book in hand. With a lump in my throat, I wrote a message for her. Parents milled around me; many were wiping tears from their faces, thanking the director and the other volunteers. And in the midst of it all, I was putting pen to paper, thinking once again how leaving normal had brought me to a beautiful place.
I know that for most people my age, dealing with illnesses like the common cold is a simple thing to do. However, I find it difficult to take care of myself when I am ill because even though I realize that there are symptoms to illnesses like the simple cold, I have a hard time recognizing them when they affect me personally. To me, colds generally come on suddenly without much warning. I have always had my parents to help me with any illnesses or injuries that have befallen me, but as I have gotten older, my parents have begun helping me to understand what I need to do as an adult regarding my own well-being and any health issues that come my way.
This issue came up last week when I came down with a cold. I spent much of the past week recuperating from this cold while attempting to maintain my regular school schedule. It gave me a chance to not only think about how such unexpected illnesses can negatively affect my daily routine—which really throws me off because I like my schedule to be consistent—but it also has opened my eyes to the fact that I really need to focus on what I need to do when I am ill.
The day I came down with my cold, my mother was the first to notice that I was becoming ill and discussed this with me. I did not recognize the symptoms of the cold because I tend to sneeze a few times every day, and I thought it was going to be just another day of only a few sneezes and nothing more. I also did not connect my sore, scratchy throat along with a developing cough to a cold coming on. As the day wore on, however, my cough started sounding worse and worse and because of my asthma, I struggled to breathe at times.
This pattern continued for most of the next day, with my mother giving me asthma treatments to help me breathe. I use a nebulizer machine to dispense my asthma medications, which my mother helps me set up and run. She also tried giving me a throat lozenge for my sore throat, but because the flavor was so overwhelming to me, I could not handle it. She also decided it was time to take me to the doctor. It was my mom that made the appointment and got me there. I did not make the appointment myself because I do not have the proper phone skills yet to effectively do so. My mother has given me a script in the past to practice calling 911, and she has told me that she will help me to come up with a template for making doctor’s appointments on my own. The doctor did prescribe some medicine for me, but I was wondering when relief would come.
As my cold continued, I realized that I would not be able to go to my favorite extracurricular functions including basketball and piano lessons. I also really wanted to go to a bookstore with one of my aunts; this trip had been part of my plans for a number of weeks, but due to my cold, I could not go. This was especially disappointing for me because I had been there before with my father, and there were several items there that I wanted to look at further. I do not like having disruptions in my schedule or plans, but I did have to accept the fact that I would have to wait until I was well before I could resume them again.
In the past few days, my cold has almost completely disappeared. I think I handled the changes in my schedule and plans fairly well. It does make me anxious, but I calmed myself down with the knowledge that my cold would soon end, and then I could get back to my regular routine again. After discussing my cold with my mother, I also realize that I need to work on recognizing the signs of illness, if I plan on living on my own. I did not notice my symptoms this time, but I am sure I will be able to recognize them in the future. I also plan on learning how to administer my own asthma treatments for when these symptoms do appear before they get worse. In the past, my mother has prepared different sets of instructions for other tasks that I have learned and mastered such as doing my own laundry and cleaning the bathroom and kitchen areas. She laminated them and used Velcro to strategically place them throughout the house on walls and doors. She plans on putting together a set of instructions for running the nebulizer as well as many other tasks I have as yet to learn and compile them in an easy-to-use reference book for me. I will also need to be aware of what medications I will need to take when I am ill, and know when to take them.
I can see that I will have to be more responsible for myself in this area as I work toward being an independent adult. My focus right now is on my college work, but I realize I will need to look beyond my parents and prepare for these things in the future. For now, I try to learn as much as I can from my experiences as they come up. In addition, having step-by-step instructions in place will greatly help me learn many life skills. I know this will take time, but with my parents’ help and a good plan, I know I can succeed.
According to the Centers for Disease Control (CDC), 1 in 110 children are known to lie on the autism spectrum in the US. For boys alone, that number increases to 1 in 70. It’s common knowledge within the autism world that boys are diagnosed more often than girls, and those girls that do get diagnosed are far more likely to be what’s often referred to as “low-functioning,” or severely affected. The medical community usually explains this away by saying that for some reason, autism affects girls differently. For whatever reason, girls who “get” autism are more likely to be “more autistic.” But what the soft sciences (sociology and psychology) ask that the hard sciences often don’t is: Where are the “high-functioning” girls? Is this a matter of actual numbers, or of accurately recognizing autism in girls? I’m sure that there are biological differences that cause autism to present differently in males than in females, but perhaps there is a far simpler explanation for the diagnostic discrepancy: Male and female social roles and pressures are different.
From a very young age boy and girl children are treated very differently. It’s an interesting paradox, because stereotypically autistic behaviors are far more socially acceptable in boys than in girls, which sounds like autistic boys would be the ones glossed over. But over time, as children age, this reverses. An autistic little boy who is obsessed with trains—watching them, talking about them, taking toy models apart and putting them back together—seems more like his peers of similar age. Many little boys go through a “train phase” and, assuming the autistic boy isn’t too socially challenged, he will be at least partially successful at integrating into a social group.
Now think about what happens to autistic girls. When I was very small, for example, I was obsessed with a great number of things: animal taxonomy, niche adaptation, and development; ecosystems, and meteorology; and outer space, and Star Wars. Most adults loved me because I was a very stereotypical “little professor.” But the vast majority of my playmates were little boys. We pretended to be Jedis, complete with light-sabers; we explored jungles and hunted lions; we played videogames mostly consisting of stealing cars and running over pedestrians; and we built spaceships out of cardboard and old pie tins. I had a few girl friends, but they only wanted to play with Barbies (games that always turned into murder mysteries if I was involved) and gossip about who “liked” whom. Not to say I didn’t enjoy those kinds of games; I would have gladly been friends with these girls if they had let me. They just didn’t like me. My best girl friends were “tomboys,” and early on I prided myself in that title. Everything that was marketed to me as associated with girls and femininity seemed weak, pointless, and devoid of any real strength or character. Boys were G.I. Joes, crime fighters, and the only superheroes who were more than their bodies.
As I grew older, the boys I identified with—the stereotypically “masculine”—began to avoid me. We were all slowly approaching puberty, and though we didn’t really understand, the boys knew of the unwritten social clause that separates boys and girls into two separate groups. The only boys who would still play with me were the boys who liked animals better than cars and didn’t play videogames. I eventually was forced to make female friends—real female friends, involving lasting relationships.
Thankfully, I was one of the lucky few singled out by a mother hen friend who took me under her wing and helped me create my own social circle. At this stage, autistic boys and girls begin to separate, developmentally. Autistic girls definitely don’t have it easy, but we have one distinct advantage. The female gender role encourages nurturing behavior, and an emotional openness that is actively discouraged in little boys. A friendly neurotypical girl may see a socially awkward lonely girl and go over and say hi. This neurotypical mother hen will befriend the autistic who can’t take the active role, and even introduce her to others, eventually building relationships for the person who couldn’t have done it alone. It’s not that neurotypical boys don’t want to do this, or are somehow less kind than girls, it’s that the way they are raised discourages this type of behavior, which is usually considered motherly. In girls, this is actively encouraged.
By high school this difference becomes far more obvious. Usually, the few autistic boys who aren’t forced loners have congregated into their own social circle. If you sit down at a lunch table and start talking about the special effects in Star Wars, one of the few kinds of people who’s going to respond positively is another autistic, who doesn’t mind the lack of social convention. In this way, the slightly more outgoing autistics will usually find each other. It’s the ones who stay quiet—or who’ve been bullied badly enough to want to stay quiet—who remain alone without the help of a mother hen. But their high-functioning female counterparts are often already part of a social circle, often one that includes neurotypicals. Verbal, high-functioning girls often have this distinct head start in the social world.
To thrive, or even get by, within the social role allotted to the female gender, one must develop social skills. Men are given somewhat of a pass when it comes to more nuanced social convention. Think of every time you’ve heard a joke or seen a sitcom about how men can’t read nonverbal cues. Women are expected to talk in a round-about, read-between-the-lines manner—“Do these pants make me look fat?” means “Tell me you think I’m thin and beautiful”—and men are expected to stumble in this mysterious women’s language. A girl who’s direct and forthright is often seen as blunt and rude. This convention is so culturally embedded that when sociologists conduct studies with equally qualified male and female candidates, men who ask for a raise are referred to as “go-getters” and women who ask for a raise are referred to as “pushy,” even “bitchy.” As a girl who was all but clueless when it came to social rules, I was thought of as a rude, annoying know-it-all. Even today I have a hard time making friends with neurotypical girls because of this; no matter how much I smile (and it has to be constant) I’m perceived as rude and unfriendly by girls my age.
This all comes back to diagnostic discrepancy, especially with late-in-life diagnoses. As girls get older, if they are able, they are forced to learn to interpret at least basic body language, tonal variation, facial expression, and social nuance. This means that after a certain point, the only “obviously” autistic women are those deemed “low-functioning,” because they’re the ones who can’t learn to fake it. Boys learn to fake it as they grow older, but even then there’s nowhere near as much pressure for them to rid themselves of autistic traits.
Many of the autistic girls and women I’ve met have spent much of their lives without a diagnosis. So, they’ve learned to adapt, and no longer feel they fit the diagnostic criteria. They used to have trouble reading facial expressions, but not any more, not since they learned how to. These high-functioning girls are getting missed, and they’re growing up struggling with depression, anxiety, and other mental health issues and they don’t understand why. I believe that in the near future, the diagnostic discrepancy will correct itself. Maybe there are more boys on the spectrum than girls due to genetic reasons, but I know that the gap is not as wide as it seems. There are more of us out there, and no one even knows we exist.
I've had some firsthand experience with anxiety over the past few weeks. Anxiety—as a frequent comorbid condition of ASD—may be very familiar to parents in the Autism Universe. My previous experience with anxiety had been primarily as a spectator. Watching Cameron obsess over an upcoming event has often left me scratching my head. Why does he keep asking me about the details over and over again? Why, after I told him we had cookie dough ice cream for his birthday celebration, does he have to dig through the freezer to see said ice cream before he believes me?
Well, I am starting to understand Cameron's anxiety in a way I never have before. On top of hitting the height of the juggling act that chairing Cameron's school auction has become, in recent weeks I've also experienced the decline and death of my grandmother. Stressful times, for sure, but on the bright side, I now have a better understanding of what Cameron might experience when his anxiety rears its head.
This anxiety I'm experiencing is something I feel in the pit of my stomach. I have the same sensation as if I was stuck in a horrific traffic jam on the way to the airport, and I'm going to miss my flight. It's the same feeling I get when I have that recurring nightmare about trying to get to a college final exam, and realizing I have forgotten to go to class the entire semester. So I walk around all day with this nervous energy gurgling in my gut. I have a hard time focusing because I have the constant feeling I should be somewhere else, and I'm late getting there. It's very distracting. But I'm fortunate in that I can recognize this anxiety. I understand that the current circumstances of my life have resulted in me feeling this way, and as these circumstances are temporary, so too is my anxiety. I'm fortunate in that my husband knows me well enough that he doesn't take it personally when I snap his head off for no reason. I have an arsenal of remedies at my disposal such as deep breathing, exercise, and maybe an extra adult beverage every now and then.
When I compare my own anxiety to Cameron's, the primary difference is my ability to recognize the anxiety and the resulting actions around that recognition. I can rationalize what I'm experiencing in my gut. I've never asked that of Cameron, but is there a way I could help him recognize his anxiety? How in the world would I even begin to work with him on these concepts? Is there an app for that? (I've actually been told there is a relaxation app that does wonders for reducing anxiety.) In my mind, empathy is always a good thing. Anytime I can put myself in Cameron's shoes and better understand what makes him tick, I can better understand the type of support he needs. So maybe understanding what anxiety feels like will help me help Cameron. And that's one less thing to be anxious about.
"Jeffi, where are we again?" I asked my sister.
Her answer came slowly, as if I'd requested a brief description of quantum physics. "Wal-Mart," she said finally.
And why did we come here again?"
"Um … to get milk."
"Then why have we spent the last ten minutes sorting through this giant bin of 99-cent Hispanic videos? I don't speak Spanish, do you?"
If you read my column, “A Life-Threatening Case of ADHD,” you know that my entire family struggles with executive functioning, myself most of all. It is now nearly 2 p.m. This column is due in three hours. At this point I have written ... everything you have just read. The comma button on my computer has mysteriously stopped responding to the punch of my finger. No matter how hard or how many times I hit it no comma appears on the page. So, pressed for time as I am, I'm writing this column on my iPhone. Yikes!
As I struggle to become independent, I find myself overwhelmed by executive dysfunction. While living at home I had little to worry about save churning out articles like ticker-tape. Now I have so much more on my plate. I feel like there are a dozen hi-def TVs in my brain, each turned to a different channel, playing at full volume.
A friend of mine took me to the grocery store a couple days ago. Thank God he was with me! My cart was full of Captain Crunch, capers, Reese's Peanut Butter Cups, and an expensive wheel of cheese with a name I couldn't pronounce. My friend politely explained to me that these items would not make for a week's worth of meals. He then helped me to compile a more nutritious selection.
I cannot seem to manage even the simplest of basic tasks without a hard set routine. In the past two weeks I have stayed in seven different places. I have dealt with the expulsion from my family home, an online stalker contacting my employers and claiming to be my assistant, the unwarranted cancellation of a speaking engagement, potentially stolen cookware, dog-sitting for an extremely hyperactive puppy, unexpectedly pleasant encounters with the police, the abduction and return of my boyfriend, the loss of a very dear friend, and a great deal more! Needless to say my routine had been more than a little interrupted.
Charming and hilarious as it may seem in hindsight, these past weeks have been emotionally draining. I've only had one major meltdown, crying, screaming and hitting myself in the passenger seat of my boyfriend's Mustang as he drove along a darkened highway with the top down and Elton John playing loudly to calm me and drown out the sound of my wailing.
I wish I could offer some helpful tips for making executive decisions and avoiding meltdowns, but alas, in the midst of all this chaos, I'm still learning myself. But when life gives you lemons ... get your money back and make movies!
I've decided to chronicle my struggle for independence in a madcap, viral reality TV series entitled "Fugitive Autistic Filmmaking." You can look forward to witnessing my adventures as a homeless autistic writer on the loose in the big world! “FAF” will be featured on a revolutionary website premiering soon, for which I am Creative Content Architect.
Hours of raw footage have been sent off for editing and I will be sending more every day. Head over to www.autismbrainstorm.org and join the mailing list for updates on the progression of FAF and other exciting features of this interactive community!
Life is absurd. I can cry and scream, I can give up and meltdown ... or I can laugh and make the best of what I've been given. When I step back and survey the madcap, delirious and often heart-wrenching events of the past weeks. I realize that I've been blessed with a life stranger and more compelling than any work of fiction. The Marx Brothers, Salvador Dali and Quentin Tarantino all working together could not dream up my outrageous existence. It may hurt like hell sometimes ... but it's never boring!
Living in Missouri presents a number of predicaments for all who reside within its boundaries. While weather during the summer is hot and dry, fall is usually very mild and pretty, and winter is damp but not terribly cold. The spring however, is fraught with tumultuous thunderstorms and tornadoes. Cody doesn’t like either one.
The mere sound of gusty winds is enough to set my son on edge. Lightning and thunder will send him down the stairs to the basement in a hurry. Then we see the anxious pacing, and until the storm has passed, we hear the talk of power outages before they happen, falling trees and a sundry of other predictions of gloom and doom.
When inclement weather happens during day it is bad enough. But many storms seem to wait until the dark of night just after everyone is tucked in their beds and just about to drift into peaceful slumber. And then a single clap of thunder can begin an all-night cycle of Cody being up and down out of bed. Reassuring him that everything is fine is useless. Upon climbing back in my own bed I hear the creak of the floor and footsteps up and down the hallway. This makes for a sleepless night for everyone. Add to it the fact that sometimes the storms last for several days in a row and you have a brutal 72 hours of sleep deprivation and irritable moods.
Cody is no more at ease with storms now at the age of 25 than he was as a 5-year-old child. It was about five years ago when Bill and I finally conceded that he may never be able to sleep through the night when winds and rain were audible or when flashes of lightning would illuminate his room. We had to do something for his sake and ours. So I decided to try having Cody sleep in our room.
Our bedroom is large enough to accommodate another bed. But instead of putting in a stationary bed, I went shopping for an airbed. I found one that was queen-size and would rise 21 inches from bottom to top. I made it up with a mattress pad, sheets, a blanket, and quilts so it would seem like his regular bed. I changed the pillow cases so they would match the sheets on the airbed just the way he likes them. And then I prayed it would work.
I knew storms were due to roll through our area throughout the night. The winds were predicted to gust up to 40 miles per hour and we were supposed to have heavy rains. Thunder and lightning were bound to occur. Now, my last step would be to prepare Cody for the new plan of action.
After the bed was all ready to go, I brought Cody downstairs to see it and asked, “How would you like to camp out downstairs tonight with Bill and me?” Upon first sight of it, he really didn’t know what to think. He walked all around it, investigating every angle. I asked him, “Why don’t you lie down on it and try it out.” He was very unsure about it at first, but then reluctantly he decided to try it. He eased himself down and lay on his back. He was statue-still for about two minutes. His face was void of expression during this time. But then a grin began to emerge. And then, he flopped over on his stomach and the sound of his muffled giggles set my heart at peace. Now if we all could only get a good night’s rest.
Nighttime came and so did the storms. What started out as a light rain pelting the windows soon turned into a torrential downpour. Thunder crashed and lightning flashed and the raindrops soon turned into hail. The clatter on the roof was enough to make me tense. But I wasn’t about to show it. I calmly got up from my chair and told Cody it was time for bed. To my surprise, there was no hesitation, no balking or anything of the like. He got up and went straight to his new airbed, climbed in it and pulled the covers up around him. He squirmed around for a bit then said his prayers as usual. When I went to my own bed, he seemed content to stay put. I climbed under my blankets and turned out the light. I waited and listened for a few moments. Then I heard the sound of a faint snore coming from the direction where Cody lay. I fell asleep that night to the sound of rain falling and my son snoring. It was music to my ears. My plan had worked and now we could all get a good night’s rest.
It's always a strange feeling when someone asks you to lead a group you've never been a part of before. It's an honor and a challenge, both. I'm nervous at the prospect, but even expressing this fear in writing helps me to dissipate it, and to prepare.
What's going on? This weekend, I'm planning to attend a Family Support Day hosted by the Lollipop Kids Foundation, a non-profit based in the DC Metro area, which “exists to combat social stigmas, ease the financial burden placed on [families], offer emotional support, and provide brief respite so that every child with a disability has access to a hope and a future.” At this particular Family Support Day, I've agreed to meet with and lead a group of fellow siblings in discussion and reflection. We'll share stories and (hopefully) build bonds with one another.
I don't have a precise plan in place for our time, but I envision creating a space safe for sibling reflection and connection. We'll speak, be silent, draw, and write letters to our sibs—which, I suspect, will become love letters. I'll plan to share relevant stories from my book, and also listen closely to the treasure-troves that others have within them.
Though I've certainly experienced the power of sibling support in my own life, there's a part of me that always hesitates before meeting fellow siblings (and especially so when I'll be the one leading this particular group). I wonder: Will we be able to translate our specific experiences into something the rest of the group will understand? Will we be able to empathize with one another, and offer encouragement and hope? I have to believe that we will.
Personal as our family relationships are, I believe that we can find common ground if we're looking for it. As special-needs siblings, we've all had crash-courses in paying attention, listening, and connecting with someone with a highly individualized communication style. Siblings face unique challenges, yes, but we also receive amazing gifts, if we so choose. Siblings know the pain of feeling excluded from “normal” … and we know the joy of being included in something better.
For my part, I've found that fellow special-needs siblings tend to be a remarkably open group. The reason is no secret: Our siblings teach us not to make assumptions, to be open to possibility. Furthermore, our siblings are our best instructors in the art of flexibility and patience. As someone who has struggled with perfectionism, I appreciate how my brother Willie has taught me about the power of play and the significance of happiness.
And even though I have a highly verbal, hilarious, and capable brother, I've also experienced the intense difficulty of behavioral struggles, self-injury, and violence. This being the case, I can relate to siblings whose brother or sister may simply seem “different” from others, as well as to siblings whose brother or sister needs intense levels of support and behavioral intervention.
In short, being Willie's sister has helped me to appreciate the good stuff and let the rest go. And that is what I'll take with me into this event. Whether our group is a “success” or not, what matters is our willingness to show up, to acknowledge that we have something to offer one another.
In a sense, we special-needs siblings are brothers and sisters to one another as well. We're a part of an ever-growing family, standing in friendship and solidarity, empowered to see past appearances. And when we're willing to make an honest attempt to be present to one another's lives and stories, the possibilities are boundless.
Autism spectrum disorders (ASDs) involve what Bill Goodyear, who has taught and coached Aspies and autists for over 30 years, has called the Triad of Impairments—difficulty with communication, with social relationships and with flexible thinking.
As William Stillman, an Aspie speaker, has pointed out, a high percentage of Aspies are unemployed or underemployed. Sherry Moyer, Executive and Research Director of the University of Toledo Center for Excellence in Autism, tells of Aspies just 25 or 30 years old who have already held 20 or 30 different jobs. Many, if not a majority of, Aspies have literally no friends. We also have a very hard time finding and keeping romantic partners.
The impairments we have cause these problems for us. Some people feel that we shouldn't have to change; the rest of the world simply needs to accept our differences and accommodate us by, for example, not taking offense at our staring, stimming or standing too close. People should accommodate our inability to change plans on short notice, and should let us do things one at a time, etc. While we do need some accommodations in order to contribute to society, we need to remember that acceptance and accommodation need to go both ways. Imagine, for instance, substituting another disability for autism. We might end up with something like this modest proposal:
Glaucoma patients...ummm, people with glaucoma...errr, people on the vision-challenged spectrum (PVCS), unite!
Why do people keep trying to find a cure for glaucoma? That's eliminating PVCS—a form of genocide!
Why can't people accept us as we are? Why do they keep trying to change us—“for our own good,” no less?
Society is ableist! It's currently built around people who can see wide angles. They miss our unique strengths ... after all, when your vision is limited to a small circle, you don't get distracted easily, right? We PVCS can focus our vision much better.
Also, our sense of hearing can get stronger than average to compensate—another unique strength!
Why does society discriminate against us? For example, why do we need any kind of peripheral vision to drive a car? Isn't it all too easy to be distracted—say, by a pretty young woman walking on the sidewalk, or a billboard, or a bumper sticker?
Instead, we should have cars with telescopic windshields. Maybe also roads with only one lane each way, so that we don't accidentally get hit by some car we can't see changing lanes. (And can't people hear other cars, anyway?) Society can accommodate us if it really wants to!
Meanwhile, if you have to directly face someone to see and talk to them that makes eye contact much easier. So glaucoma actually improves social interaction.
Not to mention so-called “tunnel vision” means we don't need really big flat-screen TVs or monitors or other expensive stuff ... any old screen will do.
And it helps us hunt—in fact, it's just like Thom Hartmann points out when he uses the model of "a hunter in a farmer's world" in talking about ADHD! We can focus on the prize, just like (other) predators with their eyes in front of their heads instead of off to the side like prey.
We need to focus on the beauty of glaucoma—being able to shut out more and more of life's visual annoyances, better exercise for your neck as you turn to look at everything—even being less likely to accidentally look at a solar eclipse!
Maybe it's not “normal” to look out at the world as if through a tube. So what? Normal is a city in Illinois. Normal is a dryer setting. Normal is not for people! Visual diversity is the way to go.
So I found myself on Dictionary.com the other day, and drawn to the definition of the word, “independent.” According to this source, independent can mean a number of things, and I would like to take this opportunity to explore these meanings a bit as I reflect on how much focus is being placed on fostering independence in the lives of the young people I teach (not to mention the ones I live with). And not coincidentally, I have given more than a passing thought to what independent means in my own little world. So here it is:
Independent is defined as:
Not influenced or controlled by others in matters of opinion, conduct, etc.; thinking or acting for oneself. Not subject to another's authority or jurisdiction; autonomous; free; not influenced by the thought or action of others; not dependent; not depending or contingent upon something else for existence, operation, etc. Not relying on another or others for aid or support.
Hmmm. Here’s the part where I get confused. I have taught individuals with autism spectrum diagnoses young enough to still legitimately be in diapers and old enough to be able to consume alcohol legally in all 50 states. The one common denominator—regardless of whether the particular lesson being imparted has to do with simple greetings, multi-step tasks, or taking care of one’s personal hygiene needs—has been that we want the individual to be able to demonstrate that they can perform the skill or task independent of prompts or assistance. There is nothing we are asking our young people to do that we want them to need to rely on others for… just like the definition says, right? Well of course. And in my own little universe, the idea of asking for help, of admitting help may be needed, of knowing when and how and where to ask for help (all, by the way, areas we focus specifically on in my Career Education part of the universe) has only recently reached the point where I can recognize that admitting that I need help is not the same thing as admitting helplessness.
So we want to teach our students how to be independent in everything. At least, that’s what all of my data collection over the years would lead me to conclude! But back to my confusion … at the same time I am teaching students how to independently do this, that or the other thing, I also want them to recognize, understand and most of all value the idea of interdependence. I want them to be able to listen to what their supervisor on the job tells them to do and just DO IT BECAUSE THE BOSS SAID SO while at the same time not being subject to another’s authority or jurisdiction. Then, I want them to know when to ask a coworker to lend them a hand on a certain job while at the same time not relying on another or others for aid or support. Then, just to top it off, I would like very much, personally, to be able to listen to the input of my colleagues, supervisors and subordinates and integrate the valuable pieces they bring to a discussion while at the same time not being influenced or controlled in matters of opinion or conduct. Okay. Remind me again, exactly what should the end result be? Because as one might deduce, I seem to perhaps still be just a little confused. So I went back and looked up interdependence, and found that definition pretty clear-cut: “Depending on each other.” So maybe, in the midst of all this quest for independence, we should keep in mind that accessing help is not the same as being helpless. On the contrary.
It’s all about employability. Maybe not all about employability, but it’s a lot about employability. I don’t see Cameron as someone who will be a degree-seeking candidate in a postsecondary setting. If, however, that were to become a consideration, the decisions to pursue a degree would be made by carefully weighing the options. What will best further his employment opportunities, and how to best develop job skills? It may well be that those decisions are three to five years ahead of us, but developing employable skills starts now. Or sooner.
So what will the most difficult obstacles be when Cameron is looking to join the workforce? Will it be his academic challenges, his verbal inefficiencies, or his social awkwardness? Or, as I suspect, a combination of all of the above? Or maybe it’s something else I haven’t even thought of yet.
So as I said above, it’s (pretty much) all about employability, and it starts now. I am the domestic boss, and here’s how it’s going to go: No more whining, arguing, or grumbling about assigned tasks. Cameron has his chores around the house and in exchange for doing these chores he gets a certain monthly allowance (income). It sucks for Cameron that a mild winter has brought on grass mowing sooner than usual, but a reminder that the grass isn’t getting any shorter should not be met with “Fine!” I’m the boss, remember? I deserve a little respect. Maybe not to the point of snapping his heels together and answering, “Sir! Yes Sir!”, but a degree of respect and appreciation for my authority would be well received. (And hey, put a smile on that face, and come review time, I might consider a raise.)
I really think there’s an opportunity here for Cameron to practice the behavior he should be exhibiting at the workplace. I may be in the habit of ignoring Cameron’s grumbling and terse replies, but I don’t think an employer will be as understanding as dear ol’ Mom. If I can get Cameron to respond in an appropriate manner to his domestic bosses, it’s likely going to result in a most splendid relationship with his managers in the workplace. Hey! I may be on to something … I should let his academic bosses in on what I’m after here. Arguing, excuse making, and feigned helplessness are not in Cameron’s best interest. If he has a legitimate problem or concern, he needs to utilize those self-advocacy skills he’s developing per his IEP to appropriately address the issue.
Here’s a call to bosses everywhere, whether domestic, academic, or otherwise: Rise up against bad attitudes. Exert your authority and let it be known that a happy employee makes a happy boss. And everyone wants a happy boss, because everyone wants to be a happy employee. With all this contagious happiness, the world will be a much brighter place. Namaste, kumbaya, and peace out.
Go home sailor...
The waters have all dried up.
The ocean has fled and your ship sags uselessly on the rocks.
Behold the rotting fish!
The cruel heat has reduced them to simmering, gelatinous pools.
Yes, it is a strange graveyard sailor, and you'd best go home.
Go home to your poor mother. She is old and she is dying,
Yet she waits up for you at night and leaves the porch light lit.
Restless sailor, what is it you seek?
I have seen you wandering in the gray October mist,
Trudging wearily past tombstones that jut from the earth like the crooked teeth of some lunatic hillbilly.
What has happened to the world? There is nothing left but dust and dreamers.
So what do you dream of sailor, and what is this strange yearning that stalks you? It is a melancholy figure and it walks beside you in a dead man's clothes. It speaks and the voice puts the fear in you, making your flesh feel like a field of wilting flowers.
I beg you to go home.... You belong there always. Remember? Remember?
In that other time you played kick the can in the sweet heat of a summer night. For hours you played. One by one the others yawned and disappeared into the chilling suburban darkness... but you stayed on.
And still you stay, searching for that purple, twilight, childhood something. The neighborhood is dark save one light. Your mother leaves it lit. It is a sad little lighthouse, ever summoning you to the shore.
Go home sailor, please go home...
We just had Cody’s first quarterly meeting with the staffing supervisor of Cody’s new service provider, Mike, and Cody’s case worker, Jacquie. And it went well!
It was refreshing for once to be able to say that we were pleased with Cody’s tech, Stephen, and the kind of initiative he puts forth into helping Cody work his program. Stephen is able to be stern with Cody without using a harsh tone of voice or intimidating demeanor. By the same token, Stephen is also not intimidated by Cody—something with which staff from his previous service provider seemed to struggle.
Patience and determination are among Stephen’s greatest qualities, and perhaps the qualities we look for the most in any staff member who would be here to help Cody in learning his daily life skills. Cody requires multiple prompts and directives at times to stay focused on a task. Having observed Stephen and Cody from behind the glass, so to speak, I know that Stephen is conscientious and will follow through with these requirements until Cody has achieved the given goal. In short, we were able to tell Mike and Jacquie that the objectives in Cody’s plan were being carried out as stated thanks to Stephen’s enthusiasm and assertiveness.
Mike and Jacquie were also pleased to see the daily schedule Stephen and I posted on the door to the family room. They liked the fact that we were truly involved in Cody’s program through communicating with Stephen, and putting forth our own efforts to make the plan a success. They expressed their appreciation that we as Cody’s parents were on board to work with them as a team, and not to simply state our desires and then sit quietly on the sidelines expecting the agency to take full responsibility for Cody’s progress.
We then exchanged ideas for ramping up expectations for Cody a bit. Now that Cody and Stephen have been working together for a month, and Cody knows he is expected to participate and cooperate with Stephen, we decided to set up a reward system. We are going to implement a sort of grading scale. This will be 10 point scale, with one being the lowest number. The grading scale will be used by Stephen to give Cody a visual of how well he completed a given task, but also be used by Cody to rate how he felt about that task. So for instance, if Cody and Stephen are working on math, when math time is over, Stephen will draw two scales on the dry erase board with the label “Math” written above it. Stephen will use one scale to rate how well Cody completed the task and Cody will use the other to rate how he feels about the task and his performance. The scales will be used for each time block and task throughout the four hour period of each day Stephen comes to work with Cody.
Rewards will come in different forms. Cody will have an opportunity to earn a small reward each day. Daily rewards might range from a candy bar and a soda, to a trip to McDonalds for an ice cream cone or maybe a trip to the Dollar General to buy a dollar item of Cody’s choosing. But there will be weekly rewards as well.
Weekly rewards will be given on a basis of Cody’s overall score for the week. So for example if his average score for all the tasks during the week is an 8 or above, then he could earn a special outing. This could be a trip to see a movie or lunch at one of his favorite places to eat followed by a stop for his favorite milkshake.
I believe the reward system will give Cody more incentive to work harder and put more focus on achieving each task on the schedule. The scale will give a concrete visual to help Cody understand how well he did on each task and how well his day went at the end. It reinforces the concept of, “You did awesome!” or, “We need to work on this.” I have tremendous faith in Stephen’s abilities to help Cody be successful. I’m very excited to see the progress that Cody and Stephen have made in only a month, and extremely appreciative of the attention and care Cody’s service provider puts into seeing their clients achieve their given goals. Given what I have seen thus far, I’m rating this program a great, big 10!
I no longer have the best letter I ever received. I let it go earlier this year, because I knew that, even if I threw away the paper itself, I'd never forget the contents.
When it came time for me to choose a college, my choice was simple. Though I visited more than a dozen campuses, the second school I visited was exactly where I wanted to go: Vassar College. I was in love with the library, the lawns, the list of English courses. It also didn't hurt that the school was exactly an hour-and-a-half-long drive from my family in New Jersey. It was just far enough for me to feel like I was truly “away,” and just close enough for me to come home at a moment's notice ... or to flee back to school, as I did one afternoon.
It started out as a routine visit home. As always, I offered to stay with Willie for a time while my parents went out; as usual, they hesitated, but said yes eventually. I assured them that I would be careful, and that I would call them immediately if Willie was having a particularly hard time. Unfortunately, neither of these things prevented what happened next.
I don't remember many details of that afternoon; my memory has blocked them. Or perhaps, having received grace to forgive them, I have also been given grace to forget. In any case, I know that Willie was edgy and upset. I know that I helped him to roll up in the rug, applied calming pressure, and prompted him to take deep breaths. Yet I also know that, as it became clear that he wasn't calming down, I got angry. And scared.
Nowadays, I'm better at keeping calm when Willie is upset—In part thanks to years of practice, and in part because I know that maintaining a peaceful energy is one of the best things I can do to help. But that afternoon, I wasn't prepared.
Willie was rolled up in the rug, and then suddenly, he wasn't. Almost before I knew what was happening, he bit me. He sunk his teeth into my right leg, and I screamed at him. Furious and hurt, I ran upstairs and locked a door behind me. I called my parents to come home, and they did, right away. As soon as I heard the garage door open, I picked up my bags and put them in my car. Though I knew it would upset my parents, I drove—flew—back to Vassar.
Several days later, I received a card in the campus mail. I remember opening it in the busy mailroom area, and then closing it quickly, knowing that if I stopped to read it I would end up crying. I took the card back to my room. Inside, my parents had sent their love, sorrow, and comfort to me … and they had included a letter from Willie as well.
Dear Caroline, the letter said in my brother's best printing, I'm very sorry I bit you. Please forgive me. Love, Willie.
When I saw his handwriting—those distinctive letters, the spots where he'd used White-Out to make everything perfect—I knew I would forgive him. Before I even read his words, I felt the tears pool in my eyes. He had hurt me, but he was still my brother. Somewhere underneath the aggressive behavior, he was still Willie, and I still loved him.
The bruise from the bite took months to heal. Every time I looked at it, I wanted to weep—for all the similar cuts and bruises my parents had incurred, for all the anger and frustration inside Willie that made him strike out. For all the beauty that was hidden behind his terrible behavior.
Nowadays, Willie's doing much better. Each time I see him, I am amazed at how far he's come. And even though my skin tends to scar easily, that fateful bite didn't leave a mark. The letter, however, did.
In a few months, I will be graduating from college. This signifies that I have learned a lot about different subjects, some of which I will need in order to continue working, and some of which I will probably never have to use to any great extent. However, there are some things which none of my college studies have taught me, things I will need to learn in order to live more independently.
I am going to have to learn how to shave by myself. Currently, my father and mother help me shave. I do not have the hand-eye coordination necessary to safely shave with a razor, so I depend on my parents to perform this duty. We are all intent on buying an electric shaver which I will be able to use effectively on my own. My parents have purchased several that have not worked out for me. I need to obtain one which is easy to use and which I can safely manipulate without accidentally cutting myself. If we can find one that works for me, it will be another step toward independence in my life.
I will also need to learn how to do my own taxes and pay my own bills. I do not worry too much about financial matters because my parents currently advise me and help me understand any financial transactions that I make. I learned about taxes in the money management course I took, but I have not yet put what I learned into practice for myself. After I graduate and have more time to devote to these issues, I want to learn all that I can so that I am able to manage my own finances. My parents have assured me that they will continue to help me in this area.
I will need to learn how to maintain my own apartment or house. I have lived with my parents for my entire life, and they have helped me to learn how to do many chores around the house. I can do the laundry, wash the dishes, clean the bathroom, take out the trash, make some of my own food, maintain my bedroom, and do some light cleaning. I go grocery shopping with my parents, but I will also need to learn to do this on my own. My parents are continually teaching me more and more tasks, and I know that in order for me to live independently, I will need to know how to do everything that is entailed in maintaining an apartment or house.
If I do not learn to drive, I will have to learn how to navigate the public transportation that is available in my area or come up with a plan that will enable me to get around on my own. I am sure that with my parents’ help I will be able to come up with a plan of action and carry it out. I have no interest in driving yet, but there may be a time when I feel comfortable giving it a try.
These are just a few issues that I have thought about and know I will have to work on in the coming days. I am sure there will be many new things that I will have to learn along the way and there will be challenges that I must overcome. With the help from my parents and a little bit of time, I know I will be able to make any adjustments that will be needed and make everything work for me. I have to remember that circumstances in my life will always be changing and I need to be willing to adjust and change with them.
Summer’s coming! We may have dodged the extreme snowfall of recent years, but not the planning required to make sure our kids with autism have summer activities—and we have peace of mind.
This year, I am ready. Madison’s camp confirmation first arrived in an email over a month ago, and then in my mailbox. The thick mailing included a summary of the essential paperwork:
Our plans are set—but it has not always been so easy.
For 14 years, I had sent my other children to summer camps where I was surprised to learn that activity is a major adjustment for both child and parent. For a long time, I simply could not imagine it for my Madison.
How would she adjust? Could they take care of her? And that darn, “What if” thinking delayed my actions.
I did make attempts to learn about camp programs. In those pre-Internet days, I followed up on the occasional camp flyers sent home from school. And, I did attend the locally sponsored Special Needs Camp Fair to meet with regional representatives. But, I stopped going after the first year, since most of the camps required the child to be potty trained, a feat Madison didn’t accomplish until she was almost 10. At least she wasn’t a “runner”—very few camps accepted kids who regularly tried to leave the premises.
Finally, after more research, parent networking, and good old-fashioned relentless pursuit, I found a five-day sleepover camp that was highly recommended by another parent. Madison attended and came home unharmed and happy.
I thought all had gone well.
But a few weeks later, with no real explanation, she was kindly asked not to return the next year.
Devastated, I began the search again. I found a couple of local day camps. One, however, was discontinued after its first session. The other was terribly understaffed, even with the addition of a one-on-one I hired to attend with Madison. The program was not structured enough, so Madison’s behaviors escalated—as did my concern.
Finally, I learned about a well-established camp in Catoctin Mountains near Camp David. And the rigorous application process to Camp Greentop began.
The first step was to attend a Visitor’s Day during camp where I met the staff and saw kids at camp in action. I could envision Madison at the lunch table, in the cabin, and in her number one favorite activity—the swimming pool! I met with the director, talked with a mother of a successful camper, and then decided to apply.
The application process revealed even more attention to the details of daily living. After an interview with a program specialist, the application arrived. A skills checklist of activities from dawn to dusk offered a rating of "Independent," "Needs verbal prompts" or "Needs physical assistance." They were speaking my language!
I hoped they would speak Madison’s.
Talking was difficult for Madison. Only after intensive ABA (Applied Behavior Analysis) therapy, did she finally find her words. Even now, at age 19, we teach every word she knows. So her language is highly scripted and sometimes difficult to understand.
To help the staff, I created a "cheat sheet" and called it, "Madison-eze" or "What is she saying?"
"I want skejul, please," means she wants her schedule for the next activities.
"I want dideo, please," means she wants to watch a video.
"I want mummy, please," means she wants to be wrapped tightly in a blanket like a mummy.
And to help staff know how to communicate with Madison, I had sent in another set of tips, “Communicating with Madison,” garnished with a family photo.
Although we were waitlisted the first year, we finally applied early enough and she was accepted. She has been a Camp Greentop camper for the last seven years and now has a new phrase to add to the list, “I want camp, please.”
As always, Madison’s success results in a straight-up learning curve for me. Here are five tips for others in search of a good camp program:
And then, most importantly, put “what if” thinking in its place. Don’t let it rule your life and deprive your child of a wonderful summer experience.
Consider this a warning: There is a certain "ick" factor to this column. As the thought of this column began to blossom within me, I myself was overcome by a certain degree of "ick." How can I possibly write this? If Cameron ever reads this, will he ever recover from the embarrassment? Well, I apologize in advance, to readers and Cameron alike. But for the sake of cutting edge journalism, I will trudge on.
So, Cameron's bedroom is in the finished attic, which puts his bed directly above the master bedroom. (Are you starting to see where I'm going with this?) Occasionally, as I am trying to drift off to sleep, I hear ... certain sounds. Certain creaking sounds. Ewww, right? But the last time I heard this sound, I was like, wait a minute ... Wasn't it last Thursday when I heard that sound? And the Thursday before that? Does Cameron actually have this on his schedule?
Cameron schedules things that most people wouldn't consider schedule worthy. He wears collared shirts on Tuesdays and Fridays. He keeps inventory of his shirts by brand. If he has two shirts of one brand, he rotates wearing each, so that they get equal wear. If one of them must drop out of the rotation, it's a cause for worry. Cameron eats certain things on certain days. During his bus commute to school, he listens to music on his iPod on particular days, and watches videos on the others. I'm sure there's a particular order in which he listens to playlists, but I haven't dared to delve that deeply into his routine. Without fail, whenever I discover one of Cameron's rituals and ask him about it, I'm met with that "Well, duh, of course I do that!" look of his. It all makes perfect sense to him. Doesn't everyone do it his way?
As I start to ponder Cameron's routines, I've started to think about them in terms of skills. (This does not apply to the sounds in the night routine, by the way.) But really, some of these little idiosyncrasies could be conveyed to employable skills. For instance, Cameron is the most punctual person I know. If you tell him to be somewhere at a certain time, he will be there precisely at that time. Employers appreciate that trait, right? And his tendency to create patterns in everything from how he eats to how he dresses means he may thrive in a workplace where what may be considered mundane tasks by some would be completely fulfilling to Cameron. I think (and hope) that some of what makes Cameron unique will benefit him in the workplace one day. I think (and hope) that he will be gainfully employed one day, and be self-sufficient. I think (and hope) more and more employers will start to recognize and value the traits of the ASD population in general, and maybe, just maybe, this group will find employment beyond the end of the check-out lane at the grocery store.
Leave it to a mom to find the bright side of the nighttime activities of her adolescent son.
With the advances in research being made in finding what causes autism, more and more evidence is being discovered that points to genetics as a key factor.
Through the years of witnessing Cody engage in some peculiar behaviors, I used to find it disturbing that I myself have exhibited some of those same behaviors—some in the past, but also some in the present. Did my son’s condition come from me?
Although I think I always knew I suffered from OCD, I wasn’t officially diagnosed with it until I was in my early 40s. I could not go to bed without checking the doors at least five times to make sure they were locked. It was a compulsion to check the burners on the stove at least three times before I left the kitchen when cleaning up after the evening meal. If things are out of place in my house, the anxiety that sets in used to be unbearable. If I came home and the house was in disarray and I was too tired to clean it up, I would spiral into a dark depression. When at work, if I was three cents off on the bank reconciliation I could not stop looking for it until I found it. When looking for my error my mood swung from extreme panic to tearful distress in the beat of a heart.
My doctor prescribed medication that eased my symptoms tremendously. I was finally able to focus and to feel stress-free most of the time. It was during this time that I started noticing how similar some of Cody’s behaviors were to my own.
If he doesn’t have his one special coffee cup in the morning he is troubled until he finds it. If there is someone in our house with whom he is unfamiliar, he is overwhelmed with nervous energy until they are gone. If he is drawing on his computer and something isn’t just right, he will erase it over and over until it looks the way he wants it to look. If he cannot make it right, he becomes frustrated and angry for the next several hours.
Cody and I also exhibit several commonalities in how we cope with stress. Rocking is a form of vestibular stimulation for both of us. It evokes a calm and peaceful feeling for me and it seems as though it does for Cody also. My son and I are both pacers. I notice myself doing it a lot when I’m on the phone. Cody does it when he’s bored. Neither of us stands still very well. In church I often notice we sway from side to side—not enough to be terribly noticeable to others, but yet there is subtle movement, and oh Heaven’s yes, it must be in unison!
It is pretty common for individuals with PDD not to be highly verbal. Cody is no exception to that rule. But is this the nature of the disorder or is it by choice? Though I feel my vocabulary skills are quite adequate, I’m not a big talker. I don’t really do idle chit-chat. Social situations for me are terribly uncomfortable. And when I do talk, I much prefer one on one conversation than a group discussion. And wouldn’t you know it … Cody’s pretty much the same way!
As I said earlier, it used to bother me that I saw the same peculiar traits in my son that I saw in myself. But now it is something I embrace. Who is to really say that just because one possesses a particular behavior that is different from the neurotypical population that it meets the criteria as a negative behavior? Is it so terrible that my son has a favorite coffee cup or that I am most at peace with myself if my house is clean? Neither my son nor I are what society would classify as social butterflies. So should we be stereotyped as strange because we both prefer the more intimate interaction of one on one conversing rather than large gatherings where conversation takes place in increments instead of whole dialogue? If so, who is it that made the rule that everyone must maintain the status of what society deems as socially normal? I would like to encourage them to consider the possibility that it may be high time the rules were changed.
If you've seen the movie “Good Will Hunting,” then you know about the farting scene. It's the scene in which Robin Williams’ character is telling Matt Damon's character about his late, beloved wife. He doesn’t talk about her accomplishments; instead, he remembers her quirks. She farted in her sleep, he says, and once she farted so loudly that she woke herself up. The two men can't stop laughing at the thought.
I had that scene playing in my mind as I sat down to write this morning. For some reason, I wasn't thinking about my brother Willie's accomplishments (though I celebrate them) or his gift for music (though I'm so proud of his talent). Instead, I was thinking about the strange, funny moments that only our family knows about. I was thinking about Willie's wonderful, individual quirks.
I was thinking about how Willie used to ski, before he mastered the art of turning. When we were younger, our parents would take us skiing each winter. Willie would ride on the chairlift, disembark, and then he would fly. Pointing his skis parallel, he'd simply accelerate, zooming down the trail until he came (or tumbled) to a stop at the entrance to the ski lodge. He was surprisingly good at this unconventional method. Unlike me, he wasn't terrified of picking up so much speed. Sometimes I'd try to ski alongside him, both of us shooting like bullets down the mountain. I only made it the whole way a few times, but Willie made it every time.
I was thinking about how, on those same ski trips, we'd take our sore, tired bodies out to restaurants for supper. Even though Willie always ordered familiar dishes—spaghetti, fries, hamburgers—the food's presentation would be different from what he knew and recognized.
Once, when Willie's order of chicken fingers arrived at our table, he didn't eat, but simply stared down at them. Willie loved having chicken nuggets at home, yet we all noticed he wasn't eating his food. Puzzled, my parents encouraged him to explain why. His face furrowed in concentration; I could see the mental wheels turning. How to explain this sudden aversion to his supper? Finally, he spoke up. In a plaintive tone, he said, “I'm sorry, bananas!”
We burst out laughing, as the problem became clear in an instant. The chicken fingers were longer and thinner than the chicken nuggets Willie was used to, and as such, he just didn't know how to place them in his mind. To him, the chicken fingers looked like … well, breaded and fried bananas.
Another time, Willie ordered spaghetti and meatballs, a perennial favorite. But when his plate came, he once again stared down at it without eating. When prompted to explain, he said, with a tinge of horror in his voice, “It's still growing!” That's right: The unfamiliar sight of parsley sprinkled over the meatballs made it look like they'd sprung up from the earth, and Willie was dismayed at the prospect of ingesting them!
When I miss my brother, these are the small stories that make me smile. I miss his sense of humor, because it helps me to have a greater openness, a sense that life isn't always what it seems. True, learning to look at the world through Willie's lens of perception can be a challenge, but it can also be a delight. I haven't always appreciated that as much as I do now. I used to long for a “normal” family. Yet even then, there was a deep-down part of me that knew: Normal wouldn't have been nearly as much fun. And it's the lessons learned in laughter that stay with me now.
Thus, when Robin Williams' character says:
“... that's [what] I remember: wonderful stuff, you know? Little things like that. Those are the things I miss the most. The little idiosyncrasies that only I know about. ... People call these things imperfections, but they’re not. Ah, that's the good stuff.”
I can't help but agree wholeheartedly. That's the good stuff. And, lucky for me it's still growing.
In order to prevent welfare-reducing effluvia, we ask you to please reduce externalities (bathe) during exams.”
I walked into my graduate school classroom one fine evening to find that on the blackboard.
Oh no—not again!
Back then, I wasn't showering—or doing laundry—on a regular basis. In fact, I hadn't been since before I can remember. I knew that I had a “B.O. Problem.” I also knew that it was driving people away from me. And yes, I knew it was inconsiderate of me to expose others to that kind of smell.
All in the same sense that pretty much everybody knows that smoking, scarfing down double cheeseburgers and chocolate doughnuts and never exercising are all Bad Ideas. If you know a healthy person, you know someone who doesn't stop with knowing the right things. Doing them kind of helps.
You might be wondering: “Jeff, couldn't you smell yourself?” Unless I'd been dirty for a really long time—as in weeks—no. Like many Aspies, I have a very weak sense of smell. (For example, when I was a child, for a short time the local grocery store unknowingly sold spoiled cottage cheese. Unlike many other people, I didn't know it in time—and for years afterward I had a habit of carefully sniffing everything before I ate it.)
And if you were one of those people who had the bad luck to be downwind of me, you probably wanted to ask “Jeff, <cough> couldn't you <cough> <cough> get around to jumping in the shower—or didn't you care?” Well, no I didn't care … not so much because I hated society or anything like that but rather because I was clinically depressed. And that meant it took a lot out of me some days just to get up and get on with my day. Making a daily or even semi-weekly appointment with Mr. Shower and Ms. Soap was beyond me sometimes.
Depression, as you might have heard, is a common co-morbidity of AS. You see, when you go through life wondering when, not if, you will tick somebody off enough so they scream at you or worse, losing job after job, having no friends and certainly no dates, depression is a common result. (Not to mention a common cause of same—especially when it entails an “H2O allergy.”)
Last but not least, not having any friends meant not having anyone close to me to notice I smelled like high heaven and call me out on it before it became a public scandal.
So, in a nutshell, it just didn't occur to me that often that I needed to shower and wash.
Of course, all of the above may be reasons—but still no excuses. Barring some kind of extreme medical condition, if you're not a hermit personal hygiene is not optional. It's a matter of basic consideration for others. (Conversely, it would also have been considerate—and much more productive—if under those circumstances someone had approached me privately instead of making passive-aggressive public announcements.)
Many aspects of AS are like this. Being an Aspie often means doing certain things that really annoy others. And being a human means that once you know what the problem is, you do everything you reasonably can to reduce these annoyances. That's not just a matter of being nice—it also really helps you make friends, find good jobs and even get dates.
PS: I've now been regularly showering for nearly 20 years!
In the past couple of weeks, I have spent more than what could be considered a normal amount of time focused on appearances. Beauty comes from the inside out, or so I’ve been told, right? And yet we all seem to gravitate in one form or another towards what we look like on the outside, and that gravitational pull takes many forms. For example, there seems to be a consensus of sorts that people with ASD have a general lack of concern about how they appear to others. From my own experience, I don’t quite know if I would characterize this as a lack of concern so much as a lack of prioritizing. I know that I get positive feedback on my appearance when I am wearing makeup. I enjoy positive feedback. But more often than not, I don’t wear makeup. It is not a priority for me in the mornings to take the time that could be spent in other productive pursuits—yes, sleep counts—to go through the whole production of putting on makeup. I care about how my appearance affects others’ perceptions of me. That said, I do not quite care enough to concern myself with keeping track of whether or not the mascara in the bathroom is too old for me to use when I dig it out for special occasions. This gravitational pull towards a more natural look does not appear to have hampered me in the workplace setting, and as such I feel comfortable assuming that I am correct when I tell myself that "less is more."
Conversely, there are individuals who will go to great lengths to create an outward appearance that on the surface seems to be for no other reason than to provoke a decidedly negative reaction. This presents problems for the educator in me, not to mention the Aspie in me, on numerous levels. The teacher cannot allow students to present themselves in the workplace in a manner which is likely to prompt an unfavorable reaction. In addition, I am working with young adults who, let’s face it, probably have the deck stacked against them in the first place with or without a disability simply by nature of the economic times in which they are coming of age. Certainly it is in their best interests to present themselves in such a way that those who will undoubtedly make judgments based on outward appearances will have reason to make those judgments favorable ones. But … here’s where the Aspie part gives me pause. What do I want more for my students? For them to “fit in” based on outward appearances if nothing else? Or for them to feel at home in their own skin and be secure enough in their perceptions of themselves to not worry or even care what other people think of the way they look? After all, beauty comes from the inside out, so why should it matter how many earrings someone chooses to wear, or what color or style their hair is? I find it more than a bit challenging to argue the point that the rules are the rules (written or unwritten) and we have to follow them.
Beyond hairstyles and whether or not wearing a particularly garish eye shadow is the best life choice, I would feel remiss at this point if I did not tie all of this together with a mention of the potential consequences of overemphasizing the imporance of physical appearance to our young people with AS: This is National Eating Disorders Awareness Week, In 2007, Asperger’s syndrome expert Tony Attwood reported that between 18 and 23 percent of teenage anorexics meet some or all of the diagnostic criteria for Asperger’s syndrome. That is a staggeringly high statistic, and one more reason we need to be teaching—dare I say, embedding—in our young people the idea that beauty truly comes from the inside out.
If you are concerned that your child or student is struggling with an eating disorder, do not be afraid to act. Eating disorders have the highest mortality rate of any psychological illness. In an individual on the autism spectrum, it may be hard to distinguish food selectivity and rituals that stem from the autistic characteristics from those of an ED. Some of the indicators that your child/student (most ED suffers are female, but the disease is NOT exclusive to girls) may have and eating disorder include:
There may not be a noticeable change in body weight. Just as there is no “typical” autistic person, there is no typical anorexic, bulimic or compulsive eater, and many individuals with eating disorders demonstrate a variety of symptoms that encompass all of these classifications. If your suspicions are correct, please remember that eating disorders are NOT a choice, but a mental illness that can have dire physical complications if left untreated. Please do not be afraid of alienating your child or student by acting on your concerns, as you could very well be helping to save her life.
I'm sitting in an airport with my husband, but no children. We're jetting off to the Bahamas for a "work" function, thanks to my husband's employer. It's always bittersweet when my husband and I take the rare trip without the children. For some reason, my thoughts always tend to go towards "What would happen to the children if this plane goes down?" Call me morbid, but it seems I'm the one with separation anxiety, and not the children. Call me a control freak, but I can't imagine what Cameron's future would look like without me there to help him along. Cameron is no mama's boy, and he is certainly showing signs of being able to take care of himself, but who better to make sure he's on the right track than me?
Cameron will be 17 years old in a month's time. (Yikes!) One of the Transition issues I need to start paying attention to is guardianship. How do I make the assessment of whether or not guardianship is in Cameron's best interest? What if I retain guardianship and something happens to me? How do I even begin to impart my intentions for Cameron to a subsequent guardian if I were to meet an untimely death when I don't even know my intentions? I'm sure if I'm alive and kicking I will make the right decisions as they come along because I'm his mother, and Mother knows best. How do I convey those on-the-fly decisions if the unthinkable happens? Should I stipulate in my will that a Ouija Board be consulted for all Cameron's life decisions, and I will reach out from the afterlife? Hmmm ... maybe I should consult a Ouija Board for some of these answers now.
It seems the more I try and get a handle on Cameron's future, the more slippery the handle becomes. And the more I try to learn from other people's experiences, the more vast the differences appear to be between Cameron and everyone else. Even as I read my colleagues' columns here, I see vast differences in experience. While Cameron will never write an eloquent piece on what it's like to be him, he has also never had issues stemming from aggression, elopement, or being nonverbal. There is, however, a common set of hurdles that we all must navigate. Honestly, I don't know that the issue of guardianship would have entered my mind were it not triggered by my association with Autism After 16. Even though I may not have all the answers, it is a step in the right direction to know the questions.
I'm no closer to deciding what to do about guardianship for Cameron in my lifetime and beyond, but I have arrived safely in the Bahamas since beginning this column. Two more days, and two short flights home, and I will have survived another trip without my children. Guardianship research is on the top of my to-do list when I get home. It will be so nice to travel on our next trip without this hanging over my head.
At Age 16
At Age 17
One Year Before High School Graduation
At Age 21
All Along the Way
Is it so bad, then, to be misunderstood? Pythagoras was misunderstood, and Socrates, and Jesus, and Luther, and Copernicus, and Galileo, and Newton, and every pure and wise spirit that ever took flesh. To be great is to be misunderstood.—Ralph Waldo Emerson
A child-like man is not a man whose development has been arrested; on the contrary, he is a man who has given himself a chance of continuing to develop long after most adults have muffled themselves in the cocoon of middle-aged habit and convention.—Aldous Huxley
Seemingly overnight, Ritalin gained a permanent place in the classroom, becoming as common as book bags and sack lunches. My pediatrician informed my parents that I had “the worst case of ADHD he had ever seen.” In a time when Asperger’s syndrome was not yet widely recognized, I was truly a puzzling little terror. However, without a proper label, my eccentricities remained natural and unspoiled, unique personal characteristics rather than symptoms. As ADHD diagnosis rates rose at an alarming pace, that particular label began to lose credibility among teachers and parents. There were no special services available for “another kid with ADHD,” even if I was a shockingly severe case.
I struggled socially and academically. Though undeniably precocious, I couldn’t seem to manage even my elementary school workload. I was universally regarded as a defiant troublemaker, a class clown with the bright, anarchic energy of Groucho Marx. Matters were not improved by the fact that I was typically smarter than my own teachers. A hyperactive, pint-sized encyclopedia constantly disrupting the classroom, correcting adults, and failing to turn in homework, I was not a welcome sight filing into school on Monday morning.
This pattern continued well into my adolescence. However, my teenage years proved especially difficult, as I was suddenly faced with pressures and expectations that far surpassed any previous challenges. Peer interaction received a hormone injection. It was time to learn to drive. I was expected to balance multiple classes and teachers, keep track of my schedule, books, and due dates, and avoid the scorn taunting of my peers whenever possible. My natural surplus of energy, constant anxiety, impulsiveness, and obsessive focus combined with these more typical teenage issues to make life virtually unbearable. I have never considered myself to be disabled, but I will say without the slightest hesitation that I am certainly developmentally delayed.
Lacking the Asperger’s diagnosis, I frequently used a creative, if medically shaky excuse for my eccentricity and developmental failure: “Sorry, I have a life-threatening case of ADHD…”
Now that I’ve been diagnosed with Autism Spectrum Disorder, I often struggle to separate the ADHD from the autism. I find the genetic and diagnostic overlap to be both confusing and intriguing. My mother, father, and sister have all been diagnosed with ADHD. We share many symptoms, though the untrained eye would likely fail to find similarities. My sister struggles with anxiety, inattentiveness, and mild sensory issues. Before psychotropic medication, my mother had as many fidgety little stims as I do, shaking her leg so forcefully whenever seated that strangers nearby suspected a low-intensity earthquake. My father shares my longwinded single-mindedness. When these “ADHD traits” combine within me, I am told that they are symptoms of autism. But where do we draw the line?
According to Andy Shih, Vice-President of Scientific Affairs at Autism Speaks, “… genetic changes seen in children with ADHD often involve the same genes that are associated with autism. This finding helps explain why children with autism often have ADHD symptoms. In other words, if these disorders share a genetic risk factor, it’s logical that they often occur in the same individuals. Genetic insights, in turn, can help scientists understand underlying causes and, so, may improve how we diagnose and treat these issues.”
I’ve learned that labels are only useful if they facilitate access to special services. Regardless of the label applied to the wonderful, neurological freeway pileup that is my brain, it is the symptoms which must be treated. When I finally learned to target my symptoms and apply the correct pharmaceutical and behavioral interventions, I suddenly found myself enjoying tremendous success. Rarely is any neurological condition entirely positive or negative. The idea is to identify both the beneficial and detrimental elements, and emphasize the positive while reducing the negative.
Whether I have autism, Asperger’s, ADHD or mad cow disease, I’m still me. I’ve been misjudged and misunderstood—that’s okay, because now I know myself. I embrace my strengths, and unashamedly admit my weaknesses. Closed mouths don’t get fed. I may struggle greatly to perform many seemingly simple tasks, but with minimal effort, I can also accomplish things others would never dream of. I can’t drive or remember my own address, yet despite being chronically forgetful, I’m somehow capable of memorizing enormous quantities of facts and statistics without breaking a mental sweat. Detailed trivia pours out of my mouth whenever it is open … yet I often get lost in the grocery store.
I take daily doses of stimulants (mixed amphetamine salts, dextroamphetamine, or methamphetamine) and while I’m reluctant to credit all my success to drugs, I do know that my life has been utterly transformed since the addition of these medications. I’ve found the motivation, confidence, and executive functioning necessary to fulfill my potential. I still struggle, but my efforts are finally rewarded with personal and professional growth. Working tirelessly only to disappoint yourself and all those around you is no way to live.
ADHD once threatened my life. Now I’m not even certain that I have ADHD. Furthermore, I don’t care. I am who I am. A rose by any other name … would be just as brilliant, bizarre, and hyperactive!
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