Can't a mom get a break? I worked so hard to find a proper placement for my son, I thought I could rest on my laurels for just a second. When my family and I repatriated, I spent the final months before the move researching schooling options. There was a short list that became even shorter after trial visits. One clear choice presented itself, and I was pretty confident with the decision. I was further vindicated in my choice by having the local school district make initial placement at my chosen school. No due process hearing. Yay me! We have three years down at this school and I realize I have pretty much been coasting since the decision to enroll him. One might even say I took my eye off the ball. At my son’s son's IEP/eligibility meeting his sophomore year, I happened to notice his eligibility “expired” in two years. (This is where you'd hear sound of the needle being ripped from the record player.) Somehow, my son—who reads at the 4th grade level on a good day—had a target graduation date already set, and he had somehow miraculously caught up the year he repeated kindergarten. This is a "regular" diploma program we're talking about, not modified, not a certificate of completion. I have often pondered when reviewing my son’s report cards, full of mostly A's and B's, who is actually being assessed by these grades? If a student with learning disabilities can't earn a decent grade, does that mean that the IEP wasn't followed closely enough, or accommodations weren't extended in all circumstances? With so many students, each having an IEP, meaning individualized strategies for every student, how is a special ed teacher to keep up? If a student is failing, won't that reflect poorly on teaching abilities? Is it in a teacher's best interest to report good grades, regardless of performance by the student? Skeptic that I am, I decided it was time to push up my sleeves and see what was really going on. I’ve prided myself on allowing my son to take ownership of his academic life as he entered high school, but now I find myself walking a fine line between pushing my son to be more independent at school and being the helicopter mom, hovering over his shoulder, checking every homework assignment. I realize that certain things are out of my control, and I need to focus my energy where it is most effective. Worrying about each and every assignment and assessing his comprehension of the curriculum is not something I can do on a daily basis. What I can do is build in day-to-day activities that provide me with feedback of how he is doing. For instance, I cut out a (very short) article from the newspaper each day and attach one or two questions to it. This has shown me how challenging it is for my son to draw inferences. As I learn tricks to getting him over these hurdles, an email goes straight to school. I’m not trying to do the teachers’ jobs, but trying to keep an open dialogue on what’s working. I’m not only keeping my eye on the ball, but I’m keeping my position on the field as well. I hope my teammates are with me!
It was during Cody’s senior year that we had to appear in court in order to get legal guardianship of him before he turned 18. Legal guardianship would ensure we could make crucial decisions regarding things like medical, financial and legal matters on his behalf. Even though Cody knows to call 911 in an emergency, panic, fear and distress would most likely override that decision-making ability. Communication issues prevent him from representing himself in a legal matter and also with regard to financial decisions.
After high school we struggled to get him enrolled in a program which could further help him become self-sufficient. But this presented a huge challenge. There are good programs here in the area but because Cody is not at immediate risk of losing his home (and won't be as long as I'm alive) and he is well provided for in the way of food, clothing, transportation and medical care, then he didn't meet the state of Missouri's criteria to be placed in these programs.
However, we were told that Cody could attend the program at one of the adult daycare services in the area. We began checking them and thought we had found one that had a structured program and an appropriate number of support staff. We later found this to be not true. Staff at the program allowed everyone to roam about freely throughout the day. There were no scheduled activities to participate in, only those which were initiated at random. The environment as a whole was loud and chaotic and completly overwhelming to Cody. He began acting out in a violent manner. He hit his head on numerous occasions. He broke a figurine which belonged to the director of the facility. We were told he was involved in an altercation with another program recipient there as well. It became clear to us that enrolling Cody in this program had been a horrible mistake. After only a few weeks, we decided to remove Cody from the daycare center.
But to meet the state’s criteria for other programs, a person had to be at risk in some physical way or have a profound intellectual disability. The irony was that the programs Cody needed were programs in which someone with severe ID could never thrive. It made absolutely no sense! And while my husband and I are able to provide love and all life essential needs, we cannot afford to pay for these programs out of pocket. So Cody remained on the state's waiting list from the time he was 18 until just a couple of months ago, when Missouri increased the availability of Medicaid monies.
Cody is now 25 years old and is beginning to come into his own in terms of interacting in the community. He continues to show growth in academic skills as well, improving in math, spelling, writing, and using appropriate sentence structure. This is the result of appropriate programming. In addition, for 12 hours per week, Cody is taught daily life skills such as housekeeping, cooking simple meals, answering the telephone and appropriate responses to give to a caller who asks for my husband or me, in the event we are not home or not available. Staff members also work on helping Cody know what is and is not an emergency, and the appropriate way to respond. He participates in group activities such as outings to parks, dances and other social functions. Once a week they do community outings that involve him ordering his own meal at a restaurant and paying for it, himself. When the group goes to the store it is his responsibility to shop for items on a list and pay the cashier. I cannot begin to express my gratitude and relief at finally seeing him able to get to learn and do these things. Not only does it bring me much joy, but it is also a monumental burden off my shoulders to see him become more and more self-sufficient every day.
Upon traveling to my parents’ home last weekend, I seized the opportunity to listen in on my brother Willie’s weekly piano lesson.
The fact that Willie takes piano lessons is a victory. A few years ago, his behavior was out of control, and we questioned whether or not he could continue to live at home. Yet despite the doubt and discouragement of those years, the lesson allowed me to see: he’s made tremendous progress.
Though Willie has always had a talent for music, lessons have taught him to read notes and play complete pieces. Moreover, lessons have helped him to cultivate the self-control necessary for practice.
Perhaps it was because I had miracles on my mind. Yet whatever the reason, I felt a moment of magic arise as I watched the lesson.
Willie was playing “Colors of the Wind,” the theme from Pocahontas. The sun was setting, and the windows of the piano teacher's living room were letting in all the light.
Though Willie wasn't singing, I could hear the lyrics as he played:
You think the only people who are people/Are the people who look and think like you./But if you walk the footsteps of a stranger/You'll learn things you never knew you never knew.
As those words ran through my mind, I said a silent prayer of gratitude: for Willie, who does not think like me. For Willie, because being his sister has taught me what I needed to learn: the importance of acceptance, the wisdom of empathy, and the rightness of celebrating people exactly as they are.
Those lessons hit home for me last year, when Willie spent a week at a respite home for the first time. While my parents were looking forward to spending their 25th wedding anniversary in Bermuda, they were apprehensive about traveling without Willie for the first time in a decade. Since phone service would be difficult to come by, they asked me if I'd check in with my brother each day. Naturally, I agreed.
Those daily phone calls made for a strange but memorable week. Willie would stay on the phone for only about two minutes, but those two minutes became more meaningful each time.
When I picked up the phone to call him, I was always afraid that something would be wrong. I was afraid that he would be struggling and that I wouldn’t know how to help. Or worse, that he would be having a hard time and I wouldn’t know about it.
Though I imagined horrible scenarios, Willie actually did very well at respite. I felt proud of him and of my parents, who had to summon bravery to offer him the dignity of risk.
Every time I picked up the phone to dial, I felt my throat tightening; my younger brother was “on his own.” But every time, I also had the sense that it was the right step toward maturity, the right thing for him to be doing as a young adult.
This was the context for my lesson in celebration: my parents' anniversary falls the week before my birthday. As such, Willie instituted an unprompted countdown.
Every evening, I'd say, "Hi Willie, how are you?" and he'd reply, "Hello Caroline! It's [number] days until Caroline's birthday!" At which point I'd gently remind him: "You can say 'your birthday', honey." So he'd repeat, "Until your birthday."
My brother may never say to me, “I’m glad you’re my sister,” or even, “It’s nice having you around." But he will probably count down the days until my birthday again next year. And that small celebration will be the best gift he could possibly give to me.
Why does that small remembrance carry such significance?
Because when I imagine Willie counting down the days until my birthday, I get the same feeling I had in that sun-filled living room, listening to him play.
It’s the sense that I’ve only just begun to appreciate the mystery that is my only sibling. It’s the feeling that his expressions of love, enigmatic as they may be, are infinitely valuable. It’s the belief that maybe, just maybe, that love will be enough to carry us through.
So shouted Joe Wilson, a Republican Congressman from South Carolina, during President Barack Obama's speech on health care reform two years ago.
Whether you're an Aspie or an NT, you might support or oppose Obama's version of health care reform. But if you're an Aspie, you're especially likely to have wondered what the fuss was all about afterwards. Wilson sincerely believed Obama was lying, and he exercised his freedom of speech to say so, right? And if Obama was lying, he certainly deserved to be called out, didn't he?
It's not quite that simple.
Sometimes, it's not considered OK to say what you want—even if you think the other person deserved it. One of the most important examples is calling someone a liar (or saying that they are lying). Aspies are more likely to be sensitive to what we perceive as lying or promise-breaking, and we're more likely to be direct about it.
Thing is, most people don't see it as a simple matter of fact. They feel it as a deep personal insult. The idea is, if you consider someone capable of lying, you must not trust them. And if you can't trust them, how can you possibly deal with them anymore? Thus, saying that someone is lying is like a declaration of war. And, once people started seeing it that way, made it more so—after all, if saying it is almost guaranteed to tick the other person off, why do it unless you actually hate them?
And centuries ago, hating someone didn't just mean unfriending them and maybe tagging them on nasty pictures. It was cause for mortal combat. If you insulted someone, they could “demand satisfaction”—that is, challenge you to a duel with a sword or gun. (Otherwise, people might figure that if they weren't mad enough to want to kill you for saying it, it must be true.) You could either fight—and risk being permanently disabled, possibly even killed—or retract your words and apologize. Or have everyone think you're a dishonorable coward.
Even today, we take great offense. That's why legislatures the world over forbid their members to attack other members' honor, considering it unparliamentary language. That includes the United States, by the way, as shown for example by these rules for Republican Congressmembers. It doesn't matter if you believe the other person really is lying—there are certain words you agree not to say if you want to get along.
We can say anything we want—as long as we're prepared to take the consequences. Aspies tend to talk like a detective novel: “Just the facts, ma'am.” Problem is, NTs—and often Aspies, too—tend to hear not just facts but also feelings. For example, an Aspie may not see a problem with saying “You look like you're at least 50 or 60” because literally, that's just a statement of fact. Whereas NTs tend to hear that as “You look ugly and possibly fat too,” and maybe even also “You haven't accomplished as much as you should by now.”
It's a bit like writing a webpage—an Aspie may type in simple HTML code, but the other person sees the webpage itself with many background colors, images, fonts, font colors, etc. We need to understand that just as webpage features are activated with simple codes, so are people's feelings—and we need to learn the codes that activate them.
One good way to find those codes is to see what people struggle to avoid saying. For example, in a show I saw as a child, an old man was being helped by a group of children after the government started harassing him. After making him franks and beans, they asked him how it was—and he said it had a “unique, well-done flavor.” Well-done means cooked a great deal—not a flavor. And he didn't say just how it was unique. That may have meant he was trying not to say how he really felt. And what possibility is closest to what he said? Burned—that’s well-done going too far. The franks were burned but the man was grateful and didn't want to hurt the generous children's feelings. That's how I learned that if someone helps you out, be careful before saying that anything's wrong with the help.
In a nutshell, let's think before we speak...people may take more out of our words than we mean to put in them!
My name is Benjamin Kellogg, and for all twenty years of my life, I have lived with a condition called autism. Autism affects the way I think and act around people; I find it difficult to grasp certain concepts while others seem crystal clear to me. I am currently facing one of the most challenging periods of my life as an autistic person as I pursue a Liberal Arts degree at a community college near my home. Even though some might call my autism a debilitating condition which greatly limits the type of experiences I can have, I feel that I have lived just as fully as anyone else could. I am an only child in a small family, living with my mother and father. We used to have a cat, who I considered one of my closest companions, but she passed away recently and I still miss her dearly. I also have a large extended family which includes grandparents and many aunts, uncles, and cousins who I see very often. So I have been able to learn much about social situations from attending informal gatherings, weddings, reunions, and other family functions. I have a support system of friends and former teachers who I continue to stay in contact with; they have become close confidantes and help me to learn about the wider world around me. I have also developed a wide range of interests which cross over into TV shows, movies, comic books, videogames, and especially books. It is my passion for books which led me to pursue a career as a writer. I feel that writing has helped me to overcome one of the most limiting aspects of my autism. Due to this condition, I often struggle with the ability to effectively communicate what I am thinking or feeling to others. By learning to write effectively, I have forced myself to directly confront this problem, and in the process, I feel that I have become greatly liberated. When I write, I feel my thoughts flowing through me to my fingers as I compose words on a page or type them using a keyboard. No obstacles hinder the process of transforming my thoughts into forms that others can understand. I decided to go to college to learn how to become a better writer. Thus far, I have learned much about refining the way that I write and about living with autism in a collegiate setting. I attend online because I feel most comfortable learning on my own away from a customary school environment; I have been home-schooled for many years, and thus feel most comfortable working by myself. Another reason that I am completing my degree online is because I do not drive. I do not trust my hand-eye coordination enough to consider obtaining a driver’s license. I have always had difficulties with fine and gross motor planning, so I do not feel confident enough to drive to the campus and back. Working online has necessitated that I learn how to communicate with professors and other students in a formal setting. I had some trouble with this at first because I had never had the opportunity to practice this skill before. I attended a specialized preschool class for two years and public elementary school for four years, but the majority of my formal schooling was spent being home-schooled by my mother. College has also helped me to learn how to do things most adults have to do, but which I, as an autistic person, struggle with. I have to check all of my courses for new assignments and posts from my professors and fellow students, do all of my required work in a timely manner and to the best of my ability, and keep up with a constantly changing and very demanding schedule. As an autistic person, I feel more comfortable with a simple, relatively unchanging schedule than one which undergoes many sudden, unexpected changes. If my schedule does go awry, I become confused, frustrated, and anxious. As I continue in my college studies, I believe that I am becoming better able to handle sudden schedule changes; they feel like a natural part of life, which in itself is constantly changing. I feel that this will help me to learn how to handle the pressures of being a working adult. As of this writing, I have completed three college semesters and am just starting my fourth. My classes have helped me to greatly expand my knowledge and to formulate a viewpoint of the world around me. They have also taught me how to properly conduct myself as a working adult. As I begin to take the path into adulthood, my experiences as an autistic person in college have forged me with a great resolve. In this column, I will describe what it is like to experience college as an autistic person. My regular course work, coupled with the communication problems brought on by my autism, bring numerous struggles into my life. I will discuss each of them in turn and present the various solutions which I found to be most effective. I believe that negotiating the obstacles of autism and college life will prepare me for dealing with the challenges that will undoubtedly come up in the future. My hope is that as I share my struggles with you, it will benefit those of you out there living or dealing with autism as we face new situations together.
You know how it can be for someone moving to another country, a blue-collar kid growing up into a white-collar college or occupation or a person converting to a different religion, for example? Well, it's like that for an Aspie living in an NT world, too.
I grew up and went to school and college long before AS was even recognized in the U.S. Back then, you were either Rain Man, or normal. So if you weren't Rain Man, and you did stuff like correct the teacher, or ask people about "meaningless" typos, or not respond to "obvious" hints, you were considered a disrespectful jerk (right alongside the many truly disrespectful jerks who did those things and more) and were treated accordingly. Extra demerits if you were smart in, say, math and English. That obviously meant you were smart enough to know better.
You might say I've gone through an elite training program: Decades of Home-based Experiential Lifelong Learning (HELL). As an Aspie, I had a hard time picking up social skills. With history or reading skills, if you don't have them people tend to help you out and not assume you must be acting up on purpose. Whereas if you lack social skills, people assume you're deliberately being rude, and they tend to go out of their way to hurt you.
They certainly don't discuss with you the specific things you're missing. So you go through life just knowing that people don't like you...but having no idea why. (And under those circumstances it becomes much easier to "live up to the label" as Dr. Phil once put it when describing teenagers who had become delinquent after having been stigmatized as abnormal.)
I've left more jobs--full-time and part-time, permanent, temporary and volunteer--on bad terms than most people have ever held. Most often, I'd ticked off too many co-workers, bosses, customers, janitors, saints...you get the idea. I met my first friend and first date (same person) in my second year of college, at age 19. Unfortunately, she and I have long since lost touch.
Now I'm happily married to Emily, who I met at age 29 and is neurotypical. In fact, she's the only girlfriend I've ever had. When we were dating, she told me about AS and insisted I read articles and books about AS and about how Aspies can better relate to NTs. It hasn't been easy, but then again no relationship is. For example, she has since told me that when she first brought up AS to me, I was...well, immersed in a certain river in Egypt. She remembers that it took me a long time to accept that my brain is wired very differently.
While I learned how NTs think, talk and act, I experienced many "Aha!" moments. As in "Aha--no wonder so many teachers were irritated with me! My hand was up in class so many times it became a lightning rod!" And, "Aha--no wonder I never had any friends! Who knew that some folks actually want to discuss something other than Soviet military capabilities and doctrine?" (Answer: Everyone else, including the little kids coming home from daycare.) "Aha--No wonder I kept getting fired! I was supposed to be telling customers how to find books to improve their skills, not giving them critical feedback myself!" That's an eye-opening--and humbling--experience.
Until the day I die, I'll always need to make extra efforts relating to others. It's gotten much better now, and I've dedicated my work to helping fellow Aspies get along better in an NT-dominated world--on the job, with friends and in personal relationships. I also help NTs, including employers, service providers, first responders and friends and partners of Aspies, better recognize and work with Aspies. Basically, I'm becoming the kind of person for others that I wish had been for my family, classmates, teachers, bosses--and myself--20 to 30 years ago.
Some people work their whole lives to tame their inner child. You might say I've tamed my inner Aspie.
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