BY AND FOR PEOPLE ON THE AUTISM SPECTRUM
MY MOTHER NEARLY DIED FROM GERMAN MEASLES
My mother nearly died from German measles, in Chicago, when she was three months pregnant with me, hoping to end an untimely conception. I was born with Infantile Autism. She told me, and I remember, screaming, wailing without consolation, from an onslaught of environmental offenses, clothing, light, noise, touch, and her mother’s milk. You may not believe that I could remember, but I do, especially the white cap of the nurse who peered over the portable basket, lifting my tightly swaddled body, cooing into my face, nose-to-nose in an effort to calm me, her face devoid of features, the sounds emulating from the triangular hat.
My mother sought a neighbor’s advice, a squarely built woman who knew how to raise farm animals. “Wrap her up real tight in a flannel blanket, then keep her warm in a cardboard shoe box, and don’t disturb her for three hours at a time.” My mother placed me in the kitchen next to the oven door, then did as she suggested, drip fresh goat’s milk down my throat from a glass bottle with a hard rubble nipple. “She’s just like the dear little animals that aren’t quite finished developing their nervous system,” she told my mother. Thanks to her, I survived, but my nervous system remains sensitive, overloading when I receive too much stimuli, such as riding a tram, eating in noisy restaurants, attending sporting events, and at celebratory parties, causing my arms to ache, nausea, and a disorientation of time and space.
High Functioning Autism, a category, niche, diagnosis that gives me a mailbox for many of my defining characteristics, some positive, even extraordinary, my sense of color and smell, awareness of environmental emotions, like the visceral awareness of angry, happy, or, sad energy permeating a space, even when no one else is present in the room. And then, other, challenging aspects of my being: my tactile defensiveness, when someone approaches me from behind, with a highjack response to plant my elbow in their solar plexus. I have a photogenic recall of spaces with a keen observation of changes in the decor, any changes, mentally editing the film that replays in my head from the previous time that I was there. Then, there are my problems with sensory overload from fluorescent lights, noisy fans, obnoxious odors, which are painful and distracting. I scan the room to locate a safe space from the offensive elements, allowing me to calm my sensory system enough to process visual and auditory information again. And, the biggest challenge, hiding my discomfort, if I am with strangers. Appearing calm, moving my body gracefully, responding appropriately to social overtures.
The friends I have, today, are understanding, perhaps even cherishing, my unusualness, allowing me transition time, even helping me find my comfort zone in social situations. Maybe, it is my playful nature and oblique sense of humor that I share, when I am relaxed, that help maintain our relationship. I see and experience the world from a unique perspective, as you may say, as all of us do. I believe that this is a major communication gap between those of us who are aspies and those who are considered to be neurotypical. What I mean to convey is the degree of uniqueness that we experience. I agree with the father of a son who is diagnosed with Aspergers, who said, “Differences for my son are more like ten thousand times normal.” He said ten thousand, not ten or one hundred times. It is the difference between carrying an empty backpack on the hike of life and one filled with boulders.
When asked, “Would you like to get rid of your autism,” I said, “No.” I am who I am and accept myself. However, I am willing to change. I continue to modulate sensory overload, avoiding some situations altogether, and learn to ask for accommodations in a friendly way. I value the fresh approach and unique perspective that defines my autism. Like adjusting a camera angle, I celebrate the differences between my view and others. Vive la différence! Ultimately, we are all part of the great human condition, and in the magnificent scheme of all things, we are interconnected and the same.
Hi Stephen, how do you do?
Here is my first essay that I am sending you and hopefully it is OK.
If I need to make changes to it, please let me know. I do have one request only. I would not want my real name to be place in the link.
I have chosen Serendip as my pen name, if it could be use I will certainly appreciate it.
Please let me know if this is possible or not.
I have two more letters—as I call them—that I would like to post if they fit what they (Autism Today) are looking for.
One talks about ways of communicating between two people in the spectrum and outside the spectrum too. The other one talks about what I feel the experts are missing about us and how their labels bring a shadow to many lives.
Send my regards to your wife and will pray for you and your trip to Lincoln, Nebraska.
Autism and I
I am a female with Asperger’s Syndrome, I was born and raised abroad and now live in the USA.
My diagnosis was given to me when I was 37 years old, opening the doors for me to harmoniously try to channelize my autistic journey which began so long ago. I wanted to bring the fragmented part of me to a whole, and in the process I have learn to recognize my weakness, my strength and part of me that links both.
Autism, my weaknesses, and I
Control of oneself and the emotions I feel are perhaps one of my biggest challenges in my life with autism. I did not know—before I was diagnosed that—what I felt at times could be an obstacle in my life.
I did not know how some of my flaws could impair my interaction with others.
There are times in which it is hard for me to control emotions of frustration and of sadness, and they both pose a threat to the way I communicate with others.
Ambiguities are not my forte, and when I have no control of what goes on around myself I feel anger, and frustrations that show. If at times I have plans and they do not go my way, I have a hard time adapting to what is to happen next. I worry, I get confused, I might withdraw, and I wish I could shut off and retreat into my world to find peace in my secure refuge.
Those are things that I have to combat in my daily life. Things that I have leaned to recognized and I am trying to understand. Life is not easy for me, having to constantly battle the way I feel, trying to gain a more even control of me. Molding myself to a more assertive being in order to interact with others in better ways and be able to achieve a simple dream.
Autism, my strengths, and I
One of the biggest strengths I have is that I persevere in what I believe and that I never cease to try to achieve a better way to communicate and a better way to adapt to the world.
Even though I am an Aspie and naturally resist change, I have a brain with the capability of reasoning and of learning new ways. I learn from my failures more than from anything else, so every time I have failed, at the end I fight to transform it into gain. I have read many books in search for new ways to help myself understand the mechanics of what is called Emotional Intelligence; and I have learned to rethink a previously set thought.
Changes are not easy for anyone in the spectrum, but they can be achieved; especially if there is a third person who could guide us more to learn to interpret the outside world. I was raised in an extended family setting, and in a way that helped, I was guided by family all the time in the things I should do or say.
The social world was a lot more complex than what I thought and I failed a lot, but with the passage of time I gained knowledge by practicing—role play—and at the end I was able to adapt better to change.
Life continues to be a challenge in the social world, but it is not an impossible task anymore. It takes time, it takes energy, and it takes a lot of prayers from me to be able to go out there and relate.
I thank my upbringing for the way I have turned out to be, but most of all I thank God for helping me.
I am still having many problems communicating with others in the outside world, especially when people behave in unconventional manners. However, I do no longer try to impose my orthodox ways, I just try to understand the mechanics of their thought so that I can help bring down the barrier and thus communicate. I believe in self-improvement, perseverance, and progress; every time I am out there I think of better ways to help myself and my Aspie friends to overcome the fears and ambiguities of the social world. In time all will fall into place, but until then I continue in the search for ways to communicate.
Linking my weakness and my strength
When I am in the outside world, I have to control and channelize my emotions and my belief in order to be able to communicate effectively with people in different types of settings.
I have to remember that my orthodox ways are not the rule and that I have to adapt to what is the norm. It is then when I have to make a great effort to change from my true self to my pretend self.
I have to come to terms with the fact that in order for me to better communicate I must learn to decipher others people’s ways. I am scared in a way—after failing so many times—of the ambiguities that I might find when I am among others; however, I am mostly prepared to face them with the knowledge that using less emotions and more logic is the way to go.
Emotional intelligence plays a great role in how I communicate with others as much as thinking of me in a third person does—my pretend self—and not my true me.
When I link past experiences, knowledge, and self-control of my emotions and beliefs I am better prepared to have a more successful way of dealing with social situations of any type. Knowing my weaknesses and my strengths is a plus, since I can use both of them to make life easier for me and for others around me as well.
Communicating effectively will always be a challenging task for me, but it is achieved by means of perseverance, control of emotions, knowledge, and practice.
I was 37 when I discovered why a part of me was fragmented, I cried, I raged, I calmed down, and I learned to understand my weakness and strength; so that I could try to rebuild my fragmented self and turn it into a whole.
The journey has been long, at times I leave pieces of my heart on the road, at times I pick a rose; but throughout it all I know that I am not alone, that there are many fellow Aspies like me on the road … And so I continue to persevere in ways to learn to communicate so that others can hear my inner voice.
Contributing Author Veronica York is a female with Asperger’s Syndrome. She was born and raised abroad and now lives in the USA. Her diagnosis was given to her when she was 37 years old, opening the doors for her to harmoniously try to channel her autistic journey that began so long ago. She wanted to bring the fragmented part of herself to a whole and in the process had to learn to recognize her weaknesses, her strengths, and the part of her that links both.
AND THEN, THEY’LL SEE MY MOTHER
Autism: the word once rang of despair for a lot of mothers who only hoped that their children’s actions would be controlled by, perhaps, a behavioral medication. The word once rang of loneliness, for the children on the spectrum had become lost to their own void, their own world, and the mothers and children who had become outcasts to the society to which the mothers once belonged. The word also once rang of defeat, for the mothers broke down, losing all hopes that their lives would ever be the same again, and sometimes leaving their children to try to fight the darkness alone, only to fail and lead a life with no purpose whatsoever. This was the word’s definition 11 years ago, when I and many like me had no hope. This was its definition before my mother, Lynley Summers, came and inspired a different meaning behind my once-terrible world.
True, I was only four years of age in 1994, but that didn’t stop the doctors from trying to trap my mother in the same kind of depression that had ensnared the other mothers of autistic children. They ran diagnostics and IQ tests, among other things. But what they were telling my mother was so much worse: “Your daughter has an IQ of 50. Normally, that is considered “mental retardation.”; “Your daughter will probably never be able to speak English.”; “Here’s how it works: when Jessica gets a little older, she will have to start wearing a helmet. There is always the option of a group home, full of other people like her (and other misfits to society). Any questions?”
Had I understood what the doctors were saying of me at the time, I most likely would have broken down and gone even further into my own void. My diagnostics had clearly explained to my mother why other people labeled me as a “freak,” and why our own family—YES! OUR OWN family—had abandoned us as though I had the plague and like Mom caught it. My autism was something that neither of us could control at the time. However, if my mother had been like the other moms out there at the time, I would not have turned out the way I ended up. And, lucky for me, my mother still isn’t the type to give up without a fight.
We went through therapy after painstaking therapy, and sure enough, one year later, I was able to walk into the world again. They had considered me a genius for my age, though I do not remember how high my IQ was after that one year of therapy. I still acted autistic, but I was still getting some more of my mother’s Chaos Theory Therapy in the meanwhile, to help me “act” normal. There were major setbacks at times. After all, kids will still be kids.
I was still acting sort of “funny” when I entered kindergarten, and so the other kids harassed me. They framed me for almost everything, and the teacher believed every single one of the kids but me—just because I was different. She didn’t know what autism was and didn’t seem to care what it was. Before I knew it, that lady put me in a remedial class part-time, and the kids made fun of me there, as well. My mother tried to set things straight after she caught one of the kids framing me again. Guess what the lady said: “I’ve been around your kid more than you have and I can tell that she’s nothing but trouble …”
Mom was madder than I’d ever seen in my life.
Not only did she move me away from that school, she started doubling our therapy sessions, making sure that I’d never have to deal with anything like that ever again. Before I knew it, after school I was coming to the college where Mom worked and practicing what we had learned in therapy. Sometimes, Mom was interviewing college students while I was in the other room, practicing what I had learned by myself. Other times, my mom and I hung out together with some of her friends while we practiced some more therapy.
Most of the friends that I had in first, second, and third grade were my mom’s friends: adults. They understood me; I understood them; all was right with the world, and we could have had a party celebrating our friendship. That’s how happy I was, despite the fact that I was still in therapy. And my adult friends liked me so much that I was recruited as the first Junior Member of Alpha Psi Omega, the college’s drama fraternity. Even when I went to Japan with Mom for two years, most of my friends were adults, and a lot of them even hung out with me during my therapy.
By the time I went into junior high and high school, when I came back to America, you could hardly tell that I was autistic at all. My mother’s love had already brought me out of the void that I was in. And people just didn’t care anymore. Autism had become just another condition, just another bump in the road, so to speak—much like nearsightedness. I found friends who were my peers. Sure, I was teased every once in a while, but that’s just what it was: teasing. So it wasn’t a big deal to me. However, every once in a while I end up wishing that I could tell the world some very major points that could probably turn their lives around.
Mothers, please: DO NOT GIVE UP ON YOUR CHILDREN! Although the world might be sunny and bright outside, the void is a dark, lonely place to be, filled with your children’s fears, anger, and sadness. I know because I’ve been in that horrible place. If anything besides my mother’s therapy regimen can bring your children out of the void, it is your love, faith, understanding, and guidance. You have to believe in them. That’s all it will take to bring them out of the void.
It’s always easier to be lazy about it. It’s always easier to think that all is lost or that nothing can be done. You’d probably hear a person after the diagnostics, crying, “Oh, no! He has autism! All is lost! Alas!”
But that’s the thing: all is not lost. That is the mistake that some parents with autistic children make. They give up on them and allow them to sink deeper and deeper into the void. Most of them expect their kids to learn all they need to know at school. What a joke. Parents leave their kids alone too much. They don’t get involved. They let their kids be raised by the television or by the Internet, or they expect everyone else to do it for them. Then, they blame it all on the autism. And one of these days, they’re going to sit on a chair, missing their precious children, wondering where they are now. And then they’ll realize they’re right where they left them: lost in the void, some of them perhaps in a home where they have few opportunities.
I shudder to think of my “self,” left shackled by a “disability,” helpless. Some parents may say to themselves, “What have I done? What have I done that made my child deserve this treatment? Why should he have to suffer for the fact that I abandoned him in his time of need? Why didn’t I fight for him? He was my child. Why did I have to give up on him?”
And then, they’ll see my mother: not the woman who defeated autism, but rather embraced it and formed it to her liking. I was only the clay to the potter, and I was shaped into person I am today not only by experience but by love itself. My mother had so much faith in me that it helped me to carry on in life. Yes, there are times when I feel desperate and weak and as though I might falter to the mission in which I must succeed, but my mother is the one who gets me back up on my feet with her faith and love, as she tells me, “You can do it, Jazz; I know you can ….”
Every once in a while, at Mills University Studies High School, the school I go to now, when I tell people about Autism, some people already know about it or know someone with it. That, I believe, is progress on our part. However, some of the other people I tell do not know about it or make fun of it afterward. Like I mentioned before, that’s just how kids are.
One of the more infamous, but hurtful, jokes goes something like this:
“Why did the Autistic girl cross the road?” “Well, I don’t know. Why?”
“I don’t know, either. Why wasn’t she in the asylum?”
Like I said: hurtful. It sounded a lot like they were laughing at me, but the truth of it is that they had no clue what it was really about. They didn’t even know I was autistic, and when I told them that I was they automatically kept their mouths shut about the “autistic girl joke.” I also meet people who have absolutely no clue what autism is. I tell them a little about it, and usually I get: “Autism? What is it, like mental retardation?” People should learn that being autistic just means you’re a little bit more special than some of the normal kids.
To be perfectly honest, I really don’t think that anyone is truly “normal.” The only people who really are “normal” are the really boring adults and the really mean kids. Other than that, everyone has their own special qualities. Just like there are special shapes and sizes; everyone is going to be different from you. Different is a good thing; America is a land of diversity, after all.
My point is that you shouldn’t shun people just because they’re different. According to a song in Schoolhouse Rock, we are said to be the Great American Melting Pot. The way I see it, we, the autistic, are just one more ingredient to this delicious country that we call America. Just because we’re different doesn’t mean we’re defective. It just means that we make America all the more unique.
Contributing Author Jessica “Jazz” Summers was born in Arkansas in 1990. Diagnosed as mentally retarded at age three and autistic at four, she is the daughter of Lynley Summers. Jazz is the youngest member of Bobbi McKenna’s Write Your Own Book Club, a club intended for adults, and will release a book next year.
She speaks in her community to increase autism awareness. Having skipped 6th grade, she is an honor student at Mills University Studies High, ranked #20 in the nation by Newsweek.
The journey begins.
It was one of the last things my Dad said to me in our final conversation prior to his death last December, at the age of 82. “You know, I never did understand why you were always so different from other kids. You were just different, is all I know how to put it. No one else in my (extended) family ever had that problem learning how to talk.” He went on to tell me how it was both a surprise and a mystery for him. I seem to recall my Mom, prior to her succumbing to Alzheimer’s, telling me the same kind of thing. I took it was a mystery to her as well, though she did tell me she was immensely relieved when the doctor said that whatever was causing my speech delay, it was definitely not due to any kind of cancerous tumor on my vocal chords. According to the doctor, in that respect, I was completely healthy.
You see, all my life I’ve been on a journey, even before I realized I was on one. Even in college, others realized it before I did. One acquaintance remarked, “My goodness! I just realized the truth about you. You’re in a search for yourself and you’re lost in the woods.” Then he shook his head some more and walked away. Now, after so many years, I finally understand what he meant. Truly, I was different from other people, had compulsions and habits others did not have. The same sporting events that others seemed to enjoy so much, complete with all the crowd noise, repelled me. What especially bothered me was how my level of functioning kept changing for no apparent reason. Some, with contempt in their voice, openly labeled me “retarded”; others, with an unmistakable air of amazement, expressed how much they admired my intellect. An enigma indeed.
My journey toward self-discovery began in earnest in the spring of 1995 with work at a local print shop. The work, being fairly routine, suited me well. One day, I went to the break room as usual, but this time I noticed a religious newsletter on the table. I put my bologna and cheese sandwich aside and picked up the colorful magazine. A front page article titled “What is Autism?” captured my attention. I had heard the term before but was not quite sure what it meant, if anything. Inside the brochure, I found the various identifying traits of the condition.
I gasped in shock. It was like looking in a mirror.
It was me, all me—the delayed speech, the rituals, the rigid thinking, the difficulty grasping abstract concepts. A storm of mixed emotions stirred inside me. I felt elated, and yet I also felt violated. I was elated because now, for the first time in my life, my sensory related difficulties felt real. I could now grasp them in ways I couldn’t before. I felt justified in believing they were real. Yet at the same time I was shocked that the whole article of information redeeming my belief system came from a person or people whom I had never met, who didn’t know me. They somehow knew my deepest secrets, things I’d never told anyone. I threw the offending paper back onto the table and rushed out of the break room, resolved not to ever research the subject. It was too disturbing.
Late that evening, I went to the grocery to attempt to shop. As I entered the store, I noticed that few other shoppers were around and the Muzak heard over the intercom was even soothing. I took a deep, satisfying breath; I could shop with little or no torture this time. I grabbed a cart, careful not to make any more noise than necessary. As I glanced up, a child in another shopping cart caught my attention. Though I had never seen this boy before, he seemed so strangely familiar. The boy had a fixed stare at the wall, almost like a statue. The mother, standing to his side, raised her hands and began speaking through sign language. Without ever turning around, he signed in response.
My hands felt cold and clammy. Chills ran down my back. I tried to get a breath and couldn’t. An image began to form from the distant, intentionally forgotten memories of my childhood. This boy was like me as a child. Then a storm of memories flooded my psyche. I drew back, unsure what to do next, or how to assess what had just happened. Slowly, I looked back at where the boy and his mother had been. They were gone.
Some days later, my professor told us to research a list or newsgroup. After a quickly prepared, tasteless supper, I went to the local computer lab to do the assignment. After a while, I glanced up at the clock and rubbed my aching eyes. It was 2:00 a.m., and I sat alone in the campus computer lab—except for a lab technician who was busy running programs. Bleary-eyed and tired, my only thoughts were of how I should be in bed instead of torturing myself at this computer station. After all, it was only worth 10 points.
Yet, I felt compelled to continue. Though having seemingly accomplished little, I still felt unable to quit for the night, unable to fathom such a change in gears. I just couldn’t decide on which article to print.
There were so many. Moments later, I came across a list that included an autism discussion group. My heart pounded. I couldn’t sit still. I was convinced that if I didn’t open this door right then, the matter would forever haunt my nightly dreams. I closed my eyes and took a deep breath. No matter what I might find, I knew I had to know more. What about the condition I had read about in that newsletter? Could there really be other people out there like me? I felt compelled to know one way or the other.
I rushed home, too excited to sleep. I poured myself some hot tea and thought about my discovery.
Could I really be autistic? What does it mean to be autistic, anyway? In the days and weeks that followed, I spent countless hours at the university library delving into the matter, and taking meticulous notes about what I found. A few months later, after rigorous testing and a seemingly endless number of interviews, I received my diagnosis. For me, the diagnosis was a relief. I was finally on the verge on understanding myself.
In the process of this journey, I’ve learned many things about myself. Autism is not just something I have, in the sense that one may have high blood pressure. It is something that I am, in that it affects every facet of my life. It affects the way I think, the way I perceive the world, and the way I respond to it.
2) The basic traits
One way the autism affects me is that I tend to think in much more tangible terms than do most people. In order to grasp abstract terms, I think of them in terms of what I can see, hear, touch. I think in illustrations and analogies, a trait medical experts often think of as mental rigidity.
To an autistic individual, mental rigidity is more than mere words printed on the pages of some psychiatric journal; it is the source of much of his being and who he is. It determines, to a great extent, how he learns about and responds to his environment. It is the reason autistic individuals tend to be so literal in their thinking and why figures of speech often confuse them.
To someone within the spectrum, abstract concepts of any kind are learned only with great difficulty, and realness is a constant issue. It has also been my experience that things I have not seen or touched in a while tend to lose their realness to me. For that reason, I have always had this affinity for nouns, and a certain dislike for verbs. Especially as a child, I had to go around the classroom touching the walls in order to feel comfortable being there. Things have to be tangible to me to seem real. The problem is that if they don’t seem real, my mind tends to automatically reject them. Concepts that I reject, I soon forget, as well.
For the autistic, learning must relate to something tangible. For myself, the actual learning is not as important as the learning how to learn. So much of what I was expected to learn was abstract, and yet this was the very thing I had trouble grasping. I was puzzled when, in my senior year of high school, my fellow classmates voted me “most studious.” I figured it surely could not be true because I didn’t even know what that meant, exactly. Being studious was just another concept that I had difficulty grasping.
Thus, I had my own way of learning how to learn. For instance, the word “running” would conjure up for me an image, a memory of someone hurrying to the bus stop to catch the bus, breathing heavily, with me cheering them on.
Doing this not only made it more tangible, but easier to remember as well. Why visual imagery? I think perhaps so many people within the autistic spectrum are visually oriented because the other senses are even more vulnerable and thus more problematic.
I also discovered that the best time to learn was while I considered myself at play. I would make the learning situation into a game. I would be relaxed and comfortable, and learning became much easier. Experience has shown me that concept learning is best done when the child is relaxed, especially while the individual is at play—not during periods of high-pressure drills. It is my belief that such drills produce masses of memorized statements, but little more.
Another aspect of mental rigidity involves the need for routines and rituals. Everyone has at least some need for a sense of order and, with it, daily routines. Just imagine how hectic life would be without those daily routines, if one had to decide every morning how to get out of bed, what to eat for breakfast, what route to use to get to work, and so forth. Indeed, our lives are filled with enough stress as it is, without making it exponentially more so with constant decision making, as would be the case if one had no daily routines.
Thus, we all need at least some sense of routine and purpose, but children especially need it, and autistic children need it most of all—simply because of the mental rigidity that comes with the disorder.
That mental rigidity is a major trait of autism that has been known for a long time. One of the implications of this is that autistic children, living in a chaotic world as everyone does, must find ways to impose on their environment a sense of order. Life never comes completely scripted, so far as I know, anyway. As much as I might like sameness, life still goes on. Since none of us live on a desert island, there are always changes in the way we go about our lives from day to day. I have found that if I know in advance what to expect and that there is a valid, important reason for this change, then I can usually accept the change on an emotional and cognitive basis. But if the change is a total surprise, and seems arbitrary at that, then I have difficulty mentally accepting its realness.
For the autistic individual, virtually everything about life is not only frustrating, but is so in the extreme. The rituals serve a useful purpose in that they impose a sense of order for those who need it. Otherwise, they are forced to cope with the continuously high level of frustration in other, less appropriate ways. Thus, a ritual is a vital technique for coping with a confusing, often disorderly world.
Especially during childhood, all the time I feel either very comfortable and secure, or else very uncomfortable and insecure. Back then, it was always either one extreme or the other. I recall many times things during childhood that when things were not exactly explained to me, and especially not in tangible terms, it caused me to feel mentally frustrated and quite insecure.
Thus, as one might expect, I found ways to cope, including rituals. Some of my rituals were common, such as not stepping on cracks in the sidewalk. But I also felt compelled to tap my teeth together a certain number of times and in a certain manner. Or tap my thumbs with my forefinger in perfect geometric patterns.
During meals, I ate in “rounds.” That is, I would take one bite of everything on my plate, then start again. If I disliked an item on the tray, I simply removed it. Since it no longer belonged with my meal, I felt no obligation to eat it—and the sense of order that my psyche required was maintained. My drinks had to be placed on the tray so that they could be included in the meal.
Another ritual involved the way I walked the half mile home from the bus stop. I had a compulsion to walk with my right foot on the road and my left foot on the grass. Any deviation from this and I had to walk it over. Also, I could not enter a bathtub without first rubbing my feet three times each. At the front door, I would knock three times, turn around three times, and shuffle my feet three times before entering. At school, I had to go to my desk, shuffle my books, go touch the teacher’s desk, then return to take my seat.
In time, as I developed and as I learned to cope in other ways, my need for rituals decreased.
Truly one of the beautiful aspects of classic autism is the sense of innocence. Autistic individuals tend to be playful, optimistic, and a bit mischievous. We tend to want to project good feelings toward others and expect that in return.
Out of this sense of innocence comes a sense of wonder that pervades every day. No matter how often I have experienced it before, it is always as if it were the first time. I am amazed at the way honeysuckles manage to fill a whole neighborhood with their fragrance. I look up at trees reaching up to the sky and marvel at their magnificence. I see streams bubbling and wonder about that, too.
3) Sensory difficulties
For all the inherent difficulties affecting those within the autism spectrum, I would have to say that, by far, the one that causes the most suffering and torture is the tendency toward Sensory Dysfunction, also called Sensory Integrative Disorder.
There are several sensory-related issues that, for someone who is autistic, cause the disorder to be much more troublesome than need be. Indeed, it is the tendency toward sensory difficulties that makes autism so difficult to deal with. Also called sensory defensiveness, the worst part is that it tends to go in an unending cycle and worsens as it continues—until abated. Parents and teachers may observe it as negative behaviors or as an extreme reluctance to do certain things. But what is really going on is that the child is suffering from sensory distress. Being unable to talk, as is the case so often in classic autism, the child is unable to express what it is that is torturing him or her.
The sensory dysfunction and overload tend to lead to a heightened level of frustration and anxiety. As the nervous system becomes increasingly stressed, the sensory dysfunction worsens, causing harsh sounds and rough textures to become even more irritating than ever. The sensory dysfunction, as it worsens, leads to yet more anxiety and frustration. The cycle continues until interrupted. As one can see, the well of sensory-related suffering goes deep.
Nature intended us, for our own survival, to have sensory defensiveness. A certain amount of touch sensitivity is necessary to warn us of dangers. Have you ever been out in the yard or in the garden and felt this spider crawling up your arm? Or tried to read with a fly annoy you? When a sensory system dysfunctions so greatly, as it frequently does in autism, the tactile system is especially affected. The skin itself becomes hypersensitive.
So, what does a light touch feel like? The best way I can describe a light touch from the point of view of someone with sensory problems is that it is like having bugs crawling all over you. Believe me, it is quite annoying. This can be anything with a rough, abrasive texture, like certain foods. This would especially apply to polyester-based clothing. Stiff, roughly textured blankets can be just as annoying. I often wonder why manufacturers ever make blankets scratchy like that. Tactile sensitivity is one of the main reasons individuals with autism so often have trouble sleeping through the night. After all, who can sleep with that kind of stuff going on? No wonder I had so much difficulty sleeping through the night for most of my life.
A second way this hypersensitivity affects is me visually. I often have to keep my computer screen dim to avoid high contrast and the brightly colored, animated advertisements that decorate most web pages. Such harsh glare tends to make me instantly nauseated. On my really bad days, even ordinary fluorescent lights seem to resemble strobe-like floodlights. I may not see the flickering, but I can certainly feel it.
For me, the worst part of going to the dentist was never the shots or the drilling; it was the glare from the lamp. More than once, I wanted to tell the dentist what he could do with his evil lamp. Unfortunately, I couldn’t talk for having to hold my mouth wide open.
Noise can be a problem. Hearing sensitivity is especially troublesome for me because it is difficult to protect myself from. Unlike visual distress, it doesn’t help just to turn the other way. Actually, turning my head so that one ear is facing away from the noise just makes the pain worse. It seems that both ears must hear the sounds to a similar degree for my brain to process it adequately. The two types of noise that bother me most, though in vastly differently ways, are sharp, explosive sounds and crowd noise.
Sharp or sudden noises may include such things as metal banging on metal, pencils tapping against a desk, chalk squeaking along a chalkboard, tires squealing, metal forks touching ceramic dishes, as happens at mealtime, car horns blowing, and car doors shutting. Leaf blowers, sirens, and vacuum cleaners are also major offenders.
What’s worse is that the sound does not even have to be loud to be irritating. Water coming out of a faucet, a toilet flushing, the hum of a dishwasher or an air conditioning system all bothered me. It feels like electrical shock waves beginning at my ear, and being especially bad there, but also traveling along every nerve fiber of my body.
The other type is crowd noise. Our senses are like windows to the world. Information is uploaded to the brain for processing. Nature knew that our brains’ processing ability needed protecting. Thus, during periods of loud crowd noise and such, most people are able to block out irrelevant noise. As noted earlier, it’s the specialized cells known as Purkinje that do the magic. Unfortunately, without them in sufficient quantity, sensory information overload becomes a big problem for those of us who are autistic. Without this protection, we remain so vulnerable.
Crowd noise can be found everywhere, and even a small amount hurts me. So most of my life has been filled with torture. All too often I find myself in a social setting, filled with people innocently talking—and I am totally unprepared for the unwelcome bombardment of meaningful noise on my senses.
Unable to simply ignore it, I find myself forced to listen in on and try to make sense of every single conversation going on in the room. At such times, I feel as if I were a fortress under siege from both meaningful and meaningless sensory data. Mentally, I may know what noise is relevant and what isn’t, but my senses don’t know. So my senses pick up every bit of available information. Because speech is meaningful noise, my mind wants to somehow grasp it all, to somehow comprehend everything being said.
For the first few seconds, I feel my head filling up, as it were, and being overwhelmed by all the sensory data coming my way, and I cannot ignore it. At first I am acutely aware of the neural pressure, like one feels the pressure of the water when diving into several feet of water. I am also acutely aware of how uncomfortable it is, how much it hurts. I feel the shock waves start at the ears and travel through every nerve fiber in my body. It feels like an electrical jolt surging through my entire nervous system.
Then, as the sensory overload sets in, I become dazed and have difficulty functioning. I can’t focus my thoughts. My brain gets overwhelmed to the point that conscious thought is difficult. Mental fog sets in. I begin to feel mentally and physically numbed and disoriented. If I stay there long enough, I feel an aura coming on, leading to yet another seizure. Later, after some rest, mentally I may feel I have recovered somewhat, but physically I feel bruised. I ache and sting all over as if my entire nervous system were in rebellion.
After repeated assaults, my senses would indeed become confused. I would get dazed and numb. I could have an ache without grasping where I feel the ache, or even whether I feel, hear, or see it. At times my senses have gotten so confused and all I have known is that it was torment of some kind and it was real. As anyone who has ever been to a dentist can verify, after being numb a while one begins to crave a sense of feeling in the anesthetized area. Now imagine if one’s entire body remained numb over a long period of time. For most, the craving would be unbearable, and so it often is for the autistic individual. Thus, the level of frustration remains high and the quality of life low.
As a child, and even now at times, I have had a continuous feeling that my arms and legs were no longer attached. I have felt compelled throughout the night to continuously rub my joints and wiggle my toes, without ever actually gratifying the strange need I had to touch, to feel something, anything at all. It has caused me a lot of insomnia.
I once fell off the cab of a truck and completely broke my wrist but felt no pain or other discomfort at all from it. My body was that numb. As I looked down, the sight of my limp hand looked odd, but it did not hurt. I could not feel any physical sensation at all. I realize now I was fortunate not to have gotten hurt more than I did throughout my childhood, as things for me could have been much worse without my realizing it.
But there is a craving that often goes along with this kind of numbness. If one has ever been to a dentist and had one’s gums and jaw numbed so the dentist could do a root canal, one may understand just how annoying numbness can be, no matter what the cause. After a period of such numbness, one starts craving some kind of physical sensation in the area that got numbed. Now imagine if one felt that same numbness all over one’s body. Imagine, too, that this numbness is not only continuous but lasts for an indefinite length of time. This could be months, even years. After a while, one gets desperate to feel something, anything at all, even if the means to that end is inappropriate.
4) Some final thoughts
Do I feel cheated not to be like other people? Not at all. I like and accept who I am, and I have a passion for life. I am who I am and would not want to be anyone else, even if I could.
The difficulties of my life have made me more appreciative of the beauties of life and tend to make me appreciate the value of friendships I have made along the way.
For more information, Daniel Hawthorne may be contacted through his website: www.autismguidelines.com.
Contributing Author—Daniel Hawthorne is a diagnosed High Functioning Autistic. He is the author of Child of the Forest and Guidelines to Intervention in Autism and webmaster and author of the award-winning site www.autismguidelines.com. He has degrees in Communication and Business Administration, most recently through the University of Arkansas. He does numerous speaking engagements to autism support groups and to special schools, in addition to managing an online résumé posting business.
Making our film, Normal People Scare Me Too, with a cast and crew of autistic people was challenging, both during filming and editing. But when we finished our film in April, the rewards were worth it. We had about 75 percent of cast, crew, art, animation, and music done by autistic people. Beyond the cast and crew, though, making our film as mother and son was really hard at times—especially for me as an adult, and for my mom in the roles of both a director and a mother.
If you are a parent, you might relate to asking yourself this important question: “When do I back off, and when do I keep doing things in my kid’s life—especially when they are adults?” If you are like me, you might ask yourself this about your parent a lot! We had to deal with this question—over and over—for an entire year while making our film, and it was definitely not always easy. We know lots of parents around the world who work as their adult child’s “manager” to support and promote their futures and miro-enterprise-like businesses. This sometimes creates breakdowns and hopeful breakthroughs.
I worked on this article, at first by myself, and then side-by-side with my mom. When we made our first film, Normal People Scare Me, a decade ago, I was 15 years old. Today, I am 27 and live independently with supports. Mostly, these are my words with a bit of my mom’s suggestions to help me word things that are hard for me to get out. She asked me basic questions to help get me started.
Mom: Taylor, what motivated you to make this film?
Me: OK, I’m laughing at myself right now. I’m sitting in front of my laptop, inside of a Chipotle, finding it difficult to find the motivation to write an opening paragraph that’s almost all about motivation and how I sometimes have trouble with it. It’s laughably ironic.
Mom: Is that a common theme for you, trying to find motivation for things you want or need to do in your life?
Me: Yes, it can be very hard. It is often the process steps that confuse or stall me. What does any of this have to do with my experiences filming Normal People Scare Me Too? A lot. It’s about how I decided that I needed to get back on the proverbial horse so that I could lead a life that I’m more than happy with, and the journey it will take to get there, and the amount of effort it would take for me to get there.
I got involved with NSMP2 very early on in preproduction, when (you) asked me if I want to do the film. I accepted almost immediately. However, I was not heavily involved with the main production of the film behind the scenes. My primary responsibility during the filmmaking process of NPSM2 could be summed up fairly easily. I was essentially the lead actor who helped guide the other actors to better serve their parts on camera. I asked the questions that were in the script, and I went off-script to ask even more questions that were related to the people I interviewed. Some of the better recorded moments were even tangents that couldn’t be helped because they showed the struggles some people as a whole go through on a day-to-day basis, and that’s not even factoring in the autism. Those are the ones that I remember the most.
Mom: What were the highlights for you in the interviews you had with old and new cast members?
Me: For me, the things that I remember the most are some of the most emotionally intense in the film. However, they are intense for the same reason stated above, it’s just some of the struggles and horrors people go through every day. I remember those moments because they serve as a strong reminder that people will not believe that things are going to be OK just because someone says so, but because they will believe things are going to be OK because they want to get help and will move their butts to obtain said help. Also, it makes the more inspirational moments shown in the film all the more special to me.
As an example, one of my childhood friends, Vince, got involved with wrestling—something he was passionate about since he was a kid. I was excited for him when he told me about that on camera. However, it also got me to think about where I was going in my life, because he showed that his passions have made him a much more emotionally healthy person. I wanted the same thing he had. So I reevaluated everything about myself. My likes, my dislikes, and my overall skill set. That got me on the path to going back to school, getting job development, and the support needed to succeed at both.
There were also points where I got to chat with some of the people from the first NPSM, like Vince, Ben, Kyle, Rick, and others who are now 10 years older and have gained more real world experience in between the two films. Some have become really cool people that I would totally hang out with if we lived in the same area code. With others, I just went and quickly put them in the “best kept as acquaintances” folder of my mind’s file cabinet. We all have those, you know.
Mom: What are you doing now to help you with motivation?
Me: I have new and better staff in place now. My current staff, James, who is employed to work with me through a program called FADE, is on the autism spectrum. He is close to my age, and he gets me. Last semester, he attended an English class with me at community college. After failing college classes in the past, I finally got my first B. That was highly motivating.
I have fallen down a lot since I made the first Normal People Scare Me film. I graduated a Transitions to Independent Living (TIL) program through the ARC of Ventura County. Three years ago, I moved into my apartment supported by Social Security and support staff. People often ask me why I can’t “just” follow through? Or say to me, “Taylor, if you would ‘just’ …” I seem capable, yet executive and administrative functioning are hard for me. Sometimes it is hard to say the right words or share my thoughts. It’s just hard to get them all out. Sometimes, when I am interviewed for my film work, though, I get my words out OK.
Mom: Sometimes you wanted to drop out of the film. Why was that?
Me: During the filming of Normal People Scare Me Too this past year, I almost dropped out of the project. I just didn’t know where I fit in to Normal and making my real dream of becoming a gaming reviewer happen. At one point I told you (Mom) and Joey Travolta (our producer) to just finish the film without me, because I felt no value to me in completing the project.
After I took some time to think about it and realized that I needed to form the skills that would be required of me to do what I really wanted to do, finishing this film made more sense to be a foundation for the eventual goal of being a good writer. So here we are. Needless to say, I completed the film because along the way I found inspiration among the people I interviewed in Normal People Scare Me Too to get back on the horse I mentioned so that I could lead a life I’m more than happy with and the journey it would take to get there. I am beginning to see I have to do many things that take a lot of effort if I want to reach my other goals.
Mom: What would you say to young autistic boys/girls, men/women about following their dreams?
Me: Well, now I feel motivated to go after what I truly want in life outside of this film (which was a lot of fun to do), and I will go to great lengths to get it. I hope that my thoughts on how Normal People Scare Me Too affected me on a personal level will inspire people to get either themselves or others to be motivated to live life to the fullest. Doing the hard thing eventually inspired me. It is not easy, but hey, who said life would be?
And now that the film is done, I look forward to speaking engagements and to sharing our film all over the world. And even though I like to travel with my mom to speak, if my staff, James, can come, I would really like that.
About the Film:
A decade after the award-winning film Normal People Scare Me was released, Taylor Cross, the film’s cocreator, is at it again with Normal People Scare Me Too. In the new Normal, he interviews former and new cast members and family about attitudes and first-person perspectives in autism today.
Created by a film crew comprised of 75 percent autistic students and graduates of Joey Travolta’s Inclusion Films, with music and art created and performed by 65 percent autistic musicians/composers/artists, the new Normal is pleased to be a more inclusive production this time around. Normal People Scare Me Too is driven by Taylor Cross, directed and coproduced by Keri Bowers (Taylor’s mom), and produced by Joey Travolta. Keri is the cofounder of The Art of Autism, a key supporter behind the scenes of the film, and has created four films in autism and other disabilities. The new Normal can be ordered through our website.
Taylor Cross has worked on four documentary films, including Normal People Scare Me, The Sandwich Kid, ARTS, and Normal People Scare Me Too. These films have taken him all over the world to speak at conferences—with supports. Taylor lives in his own apartment in Ventura, California, and is currently taking a few classes at community college. He works with his support staff to improve the skills necessary to help him find gainful employment or micro-enterprise opportunities as a gaming reviewer and public speaker. Recently, he’s begun booking his own speaking gigs and film screenings.
LIGHT AT THE END OF THE TUNNEL
I debated with myself during the writing of this as to when (in the course of the article) to disclose that I have Asperger’s Syndrome. Should I come right out with it or should I build the suspense until the end. Needless to say I came right out with it (a very special coworker suggested I fill you in at the beginning).
I have spent most of my life wondering what was wrong with me and why I was so different. For the longest time I didn’t have any answers and neither did anybody else. Not that many people wanted to know. It seemed that no one wanted to get to know me or understand me. But I must say I didn’t know or understand myself, either. I didn’t have any friends. Sometimes that really hurt, yet at other times it didn’t bother me at all. I was quite content to do my own thing. What a strange contradiction.
There were many issues with family members. I remember my aunt telling me (within the last few years) that she would have her version of a pep talk with my cousins before we went for a visit. It went something like this: Okay boys, your Auntie Marilyn and the kids are coming for a visit. We all know how Terri can be, so we need to tread lightly. This isn’t an exact quote, but you get the gist of it. I’m still amazed that even in my late-’30s these words had the power to devastate me. At times they still do.
There were good things about me, special gifts if you will, yet not many seemed to notice. I excelled at academics, music, and sports, but people only seemed to see my “obnoxious and socially unacceptable” behaviors. I wanted to shout, “there is a fun and enjoyable person in here,” but I couldn’t because more often than not I wasn’t even aware of it myself. I was ostracized and bullied in school even though I was bigger than most of my peers. It wasn’t “easy being green.”
So I did my own thing and got in trouble a lot because I didn’t conform to the norm. Just what is the “norm” anyway? It took me many years to develop coping skills and techniques to be able to do the things I wanted and knew I was capable of doing. Yet there were two or three people who loved me unconditionally. For that I feel very blessed.
My music and my love of reading helped through the tough times (of which there were many). When I was playing my trumpet, and later the euphonium, I was able to put all the hurt, anguish, and joy into my music and no one was intimidated or repulsed. What an experience. There was joy in my life; I just wasn’t able to realize it then.
My diagnosis of Asperger’s Syndrome came late in my life; well, at the time I thought it was late. I was in my early thirties. Initially the diagnosis was ADHD, yet that didn’t ever seem to fit. My spouse and friends didn’t agree with the diagnosis because I met very few of the criteria. However, that’s all I had so I went with it. A few years later my psychiatrist mentioned Asperger’s Syndrome, and he believed I should be the recipient of such a delightful diagnosis. Lucky me, I’m an Aspie!!
Actually, he was bang on. As I started reading more and more literature, I realized I could have been (and still should be) the poster child for Asperger’s Syndrome. What an incredible relief. I finally had something to hang my hat on. For those of you who are reluctant to label your child (or yourself), I encourage you to go for it. There was a reason I did all those strange and wonderful things as I was growing up. I wasn’t just a big freak who didn’t fit in anywhere and nobody liked. Now I’m a big freak with a label and I love it.
I have come to a place in my life where I love and respect who I have become and who I am. I still don’t always fit in, but that’s okay because I have my own space. I don’t always say the right thing in public, but when my family and friends need my support I somehow figure it out. I’m honest to a fault and I’ll be there for you through thick and thin. Once you’ve climbed my walls and seen through my behaviors and mannerisms that offend, you will have a very special place in my heart and I in yours. Love me for who I am and the rewards are tremendous (so are some the challenges, but hey, that goes with the territory).
Take the journey with your child, family member, or friend as you both grow and learn. Remember, there is light at the end of the tunnel. I have found mine.
Contributing Author Terri Robson is an adult with Asperger’s Syndrome. She is the controller at Autism Today. She has a Bachelor of Education with a Music Major and an English Minor. As well, she has a Music Merchandising Diploma and is a Certified Journeyman Partsman. She is pursuing a designation as a professional accountant. She loves great music, good wine, reading, camping, and spending time with her partner of 10 years, family, and friends. She has two purebred dogs (one of which is a Canadian and American Champion) that she calls her children. Terri loves being an “Aspie” and wouldn’t want to be any other way.
SELF-ESTEEM ON THE HIGH END OF THE SPECTRUM
My name is Mary DeMauro, and I have Asperger’s Syndrome. I am also a social media manager. My job involves managing professional social media accounts with the goal of broadening their reach and encouraging a certain action from the audience, such as buying a product, signing up for a program, or simply clicking the “follow” button. I schedule posts ahead of time for an optimal reach, search for and create new content to share, and use analytical programs to study my outreach. Social media is not just for sharing vacation pictures or telling people what you had for lunch. It is a vital part of the modern professional world. If you have any sort of business or organization, it is essential to have a strong presence online. But managing Twitter and Facebook profiles can be time-consuming. This is why you bring in someone like me.
I began this job a few months after I graduated from George Mason University. I had a bachelor’s degree in art, specializing in graphic design. I also had a revived interest in writing and was working on several manuscript ideas while looking for a job. My mother put me in touch with Dr. Dixiane Hallaj of S & H Publishing, who gave me feedback on my work. She also asked me if I would be interested in helping build S & H’s presence on social media, as well as doing some graphic design work. This happened in October 2015, and I have now been working for S & H over two years. In early 2016, Dr. Hallaj introduced me to Ms. Karen Simmons, and I began running several campaigns for her, including the social media pages for her company Gem Gallerie and her organization Autism Today.
This opportunity has been an exciting one. I never thought that only a few months out of college I would begin a job that I enjoy so much. I’ve learned a lot about social media marketing over the past year, and Dr. Hallaj has been an excellent mentor. I’ve had a fantastic year gaining experience in a job I’ve come to love.
This job has been a gift, not just because I love it, but because it works well with my Asperger’s. I get to work from home, which means I can set up a workspace that meets my personal requirements, and a schedule that won’t be badly compromised by problems such as anxiety.
I was diagnosed with Asperger’s syndrome when I was a teenager, about sixteen. I also have Obsessive Compulsive Disorder, which is commonly seen in tandem with a spectrum diagnosis. It was originally suggested that I might be autistic when I was in preschool, but my parents, who had not heard of the high-functioning variant of Asperger’s syndrome, were skeptical. However, in high school I was diagnosed with OCD, and this was followed with an Asperger’s diagnosis.
Learning that I have Asperger’s has explained a lot about me, such as why I feel bursts of energy that cause me to walk randomly around my house, why I’m obsessed with housing floor plans, and why I find denim to be so uncomfortable. Asperger’s, especially the attached OCD, has been challenging, but it’s also made me who I am. Because I have Asperger’s, I was fascinated with dinosaurs as a kid, I have a close connection with my parents, and I have a deep empathy for others. The idea that people on the spectrum are not empathetic is profoundly untrue; I feel for others so deeply that it is hard to just go about my life when others are suffering. I have also bonded with my parents, both because they are so supportive and because I am more comfortable with them than with strangers my own age. Meanwhile, the “special interests” I’ve had over the years, from my love of dinosaurs to my fascination with UFOs, has kickstarted my love of storytelling. In addition to my social media work, I am also trying to start a writing career, and many of my novel ideas revolve around my Asperger’s-fueled curiosities.
Nevertheless, Asperger’s still brings challenges. Possibly the biggest difficulty has been my OCD, which forced me to live by nonsensical rules I set for myself. This severely impacted my quality of life and kept me from enjoying things that should have been fun. This struggle has also led to depression, which made school difficult. Unfortunately, there wasn’t much help from school officials. In high school, my family requested academic assistance for me, but it was refused because, supposedly, my grades were too good. College was also a challenge, partially because my OCD issues reached a peak during that time, as did my depression. I was able to receive some help with test taking, but there was no help for my anxiety. When a professor callously told me she could not give me extensions unless I reported an issue more than twenty-four hours in advance—not possible with my anxiety attacks—the department supported her decision. However, with a few extra semesters, I was able to graduate college. My ability to graduate is a continued source of self-esteem for me.
Another self-esteem boost was learning that there were jobs compatible with me. As a social media manager, I get to work from home, which means I can work in a way that’s comfortable for me. I’m grateful I was able to find a job that is so well suited to me, and I look forward to a bright future. I’ve experienced challenges, but I’ve come through them stronger for the experience.
Mary DeMauro is twenty-four years old and lives on the East Coast of the United States. She was diagnosed with Asperger’s Syndrome as a teenager and has since embraced it as part of her identity. She holds a Bachelor’s Degree in graphic design from George Mason University and currently works as a social media manager.
It’s a long haul … but we are getting there … and yes, there’s much more. However, inklings of making fulfilling and productive lives for individuals on the autism spectrum the rule rather than the exception is taking a turn towards reality as we transition from a model based on deficit, disorder, and disability to one of ability.
There are three steps to reaching the light at the end of the tunnel that every individual, organization—for profit or not—and all the way up to entire country makes: awareness, acceptance, and appreciation. For years, many have devoted themselves to making others aware of individuals on the autism spectrum. The Autism Speaks Light It Up Blue campaign is one of many such examples.
As awareness of the strengths and challenges the autism spectrum brings, a sense that autism is something that can be worked with develops as educators devise strategies for teaching to individuals strong points. Now, and growing ever brighter, are glimmers of appreciation where individuals with autism are valued for who they are. Perhaps the clearest example of appreciation can be found in Information Technology companies such as MicroSoft and SAP that have vowed to make 1 percent of their workforce be individuals with autism. These and other business recognize the extreme strengths people with autism can bring to the workplace realizing that hiring these individuals are good business decisions rather than being a form of charity.
Addressing the question of providing employment to everyone else who are not IT geeks, www.autismworksnow.org matches people more significantly affected by autism and/or skilled in other areas to meaningful employment, as well. Whether it’s the parent of a child going through the steps of awareness of autism in their child before transitioning to acceptance and finally appreciation, or entire countries such as the Russian Federation and Bangladesh reaching out to experts to build their capacities for education of children with autism. Rather than staring at the closed door of disability, disorder, and deficit, let’s walk through the tunnel together toward the light and ask what the person with autism can do.
Contributing Author Stephen Shore, M.Ed., Boston University—Diagnosed with “Atypical Development with strong autistic tendencies,” Mr. Shore was viewed as “too sick” to be treated on an outpatient basis and recommended for institutionalization. Nonverbal until four, and with much help from his parents, teachers and others, he is now completing his doctoral degree in special education at Boston University with a focus on helping people on the autism spectrum develop their capacities to the fullest extent possible. In addition to working with children and talking about life on the autism spectrum, Mr. Shore presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy and disclosure, as discussed in his book Beyond the Wall: Personal Experiences with Autism and Asperger’s Syndrome, the recently released Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, and numerous other writings. A board member of the Autism Society of America, he serves as board president of the Asperger’s Association of New England as well as for the Board of Directors for Unlocking Autism, the Autism Services Association of Massachusetts, MAAP, and the College Internship Program.