Commentary

After completing a year and a half of college, I have noticed that I have become increasingly tired of doing schoolwork. I was able to handle the pressures of balancing a busy personal life and fulfilling my college assignments as I began my studies. However, I feel that this same balancing act is harder to maintain now, even though there have been only a few changes in my life.

During my first semester of college, I was trying to get my bearings. I struggled a bit with readjusting to a regiment of schoolwork after a little over a year away from academics. I had to learn how to do things in each of my classes almost every day and maintain the proper participation level to get a good grade. Because I was new to attending classes online, I also had to learn how to hold virtual discussions, transfer documents from a word processing program onto the college website’s occasionally uncooperative interface, deal with the realities of dropped Internet connections, and try to cope with my “evil-hearted” printer that would not print out what I wanted neatly and completely. I have been able to handle these technology woes better over time, but there are still several words I would like to use to describe them but dare not on a family website. Despite these concerns, I actually enjoyed the challenge of trying to take all of this in at once. I was learning skills which I felt surely would become very useful to me in my later life, and I was well aware of the old saying, “No pain, no gain.”

Besides, I still had plenty of time to myself when I was not doing my college work, and there were many things in my life which supplied relief for when things got too stressful. I had a continuous schedule of extracurricular activities such as piano lessons and Special Olympics sports practices, which I found much more relaxing than my regular work. Breakfast, lunch, and dinner were also moments of respite for me, as I could simply eat and concentrate solely on whatever was playing on television. Of course, I learned in one of my health classes that this very pastime was a bad habit in itself, but quite frankly, I have to admit that not having to think sounds much more relaxing to me these days. In a roundabout way, even sleep proved to be a luxury, as it served as a rich prize after a long night of attempting to hammer out every last detail of a vital essay. 

In the middle of my second semester my attitude toward college began to change. I became increasingly frustrated by some of the assignments my professors gave me. Sometimes the assignments themselves were hard to work out, while other times the professors’ instructions were simply unclear and would not become much more understandable after I e-mailed my teachers asking what they precisely wanted. In addition, I felt that my schedule was becoming more restrictive. I had less free time to myself as my assignments began to require more of my time. I have even had to cancel some of my extracurricular activities some days because I had to put in extra work for an assignment, an outcome I have never been quite happy about.

However, I recognize that my perspective on this is shaped by the fact that some of these complications have resulted from my own behavior. I do not get going on my assignments early in the morning as my mother suggests I should because I prefer a slower transition into starting my school day. I like to take my first few waking moments watching morning news shows, eating a good breakfast, and taking a hot shower before I start my college work. I sometimes enjoy reading a portion of a good book in the morning as well, but this tends to make me lose track of time. I have also adopted a habit of looking at websites other than the college website, even though I am supposed to be doing my work. This also makes me lose track of the time, prompting my mother to remind me to refocus my attention on my work. I promised her at the end of my second semester that I would not slip into this habit again, and yet I still find myself doing this. I believe that I may have taken on this habit because I feel pressured by my increasingly tough regimen of work, and I feel like I need some sort of release to keep relaxed during intense work sessions.

Through analyzing my personal feelings and the effects they have had on how I have conducted my college work, I now realize I can do better and will work on improving the areas I am struggling with. I need to streamline my morning routine so that I can get to work sooner. I will also focus more on my work and not on my favorite websites which only serve as distractions, and I continue to let my professors know of any trouble I may have with the work they assign. 

I know I need to improve my attitude toward college because, while it may be frustrating at times, I feel it is still necessary for me to be successful in college if I hope to reap the rewards of a successful career and a life well-lived. I also take comfort in knowing I only have a few semesters left before I will be done with this phase of my life. In my view, it is wise to make the best of what I have now so that I can have even better opportunities for tomorrow.  

Last year, my brother Willie spent a day with me at my studio apartment in Washington, DC. I’d offered to stay with him while my parents went to a wedding in Northern Virginia. Even though I'd been looking forward to our time, I felt apprehensive as well. I knew that the day might be difficult for him, and I was right. 

When my family arrived, I could tell that Willie was tense. He seemed unsettled by the travel and the changes to his routine. So at first I tried, somewhat frantically, to entertain him. I brought out things he enjoys—books and word-searches—but my motivation was fear-based. I wanted to avoid confrontation. The thought of Willie having a meltdown in our tiny apartment scared me, even though my husband was present to help us. 

Yet as the afternoon continued, I realized that fearfully entertaining him wasn't the way to go. Willie picks up on other people's energy; I’ve seen his behavior deteriorate quickly when he senses fear and anger. Likewise, I’ve seen him calm down when the person he’s with consciously tries to exude peacefulness. This being the case, I knew I needed to change my mindset. 

With that in mind, I suggested that we head upstairs to the building's roof-deck. Though the day was overcast, I thought that sitting under the big sky would help Willie to stay calm. What I didn’t realize was that it would help me, too. 

We sat on wrought-iron patio chairs and read our respective books. The skies continued to darken. As the storm neared, Willie started doing his deep-breathing exercises. In that moment, I realized that, though our struggles manifest themselves differently, both of us struggle with anxiety. Willie works to remain calm and avoid blowups; I work to remain peaceful and avoid a judgmental, controlling mindset. 

These days, I have more and more moments of realization in which I see that my brother and I are two of a kind. He is a perfectionist with obsessive tendencies, just like me. I re-write my to-do list if it looks messy; Willie erases his math-problem mistakes so thoroughly that he wears out the pages of his homework. If he so much as doesn’t like the look of a number, he’ll erase and start again.

As we sat together on the roof-deck that day, I felt immense compassion for both of us. We were both trying so hard to be what one another needed, and somehow, the effort itself was a beautiful thing to witness. As I observed the scene in my mind, I thought: We two neurotic human beings are doing our best. We are trying, and that makes this day a success. 

The rain eventually forced us downstairs, but we were able to sit together in the apartment, with minimal anxiety, until my parents arrived. And after we'd said our goodbyes, I wrote this verse: 

Rooftop/Brother

We're sitting on the roof of my apartment

building when the light leaves us.

There are dark clouds above, darker

ones on the horizon. An ominous sky.

The wind picks up, and we set down

our respective reading, letting the pages flap.

Still we stay, staring out. When I feel

the first drops of rain on my arm,

we gather ourselves to go. There's

no hurry. Storms from without are nothing;

skies within, at last, are calm.

Sometimes I wonder whether or not my future life will involve caring for my brother on a daily basis. (My husband and I have agreed to be caregivers in the event that it becomes necessary.) If I do become “my brother's keeper," it will mean major changes for us both. But remembering that afternoon we spent together on the roof-deck gives me courage. It reminds me that, though both of us struggle with perfectionism, we don’t have to be perfect for each other. We just have to be human, to be ourselves. We just have to choose to walk through life together.

We've scored a major intelligence coup. Not in Iraq or Pakistan or even Libya, but here at home.

Spies recently intercepted a list of basic concepts to teach NT children. If this knowledge is half as effective as it's said to be, it really helps explain why NTs tend to get along much better in life in general. 

A redacted summary from Wikileaks gives us these bombshells: 

  • People want to work with others they like, even if they're not as smart. For example, in school if you're more polite and pleasant to be around, even if you're a B or even a C student, more kids will want to be your friend. 
  • The same ideas can be said two or more different ways, because often when you're talking you're both stating the facts and saying something else, like how much you respect the other person.

    For example, if you say “You messed this up,” you're not only saying it got messed up, but also focusing on the other person's mistakes. Only do this if you want to attack the other person's work and possibly even them personally. On the other hand, if you say “This got messed up” it means the same thing—but you're also saying that you're not necessarily blaming the other person. Or at least you're being polite about it and trying not to hurt their feelings. 

  • People don't like to have to say “no” directly. If someone asks you for something you don't want to do, respond very pleasantly and just don't directly say “yes” and everyone will understand you're still saying “no.” (Unless of course they're just overbearing jerks.)

    For example, if someone asks “Can you help me with this report?” and you don't know enough about it or don't have time, just say something like: “I'd really love to be able to do that, and I'm sure it's important work. Good luck with it!” Any nice person will understand. 

  • Don't look at the same person for a long time—more than a second or two, tops. It makes people uncomfortable. 
  • When you're talking to someone who isn't already a good friend, significant other or family member, stand maybe three or four feet away from them. And if you're somewhere like a crowded bus or elevator where you have to be closer than that, don't look directly at them. 
  • When in doubt, look around and see what most of the other people are up to, and unless it's something like standing around while somebody gets beaten up, do the same thing they're doing. Even if it's a mistake, it's much better to be wrong with plenty of company than to be wrong alone. (That goes double when you're in a new school, workplace, part of the country, etc.) For example, if everyone else is talking in hushed tones, speak in a low voice too. 

Any secret agent knows that if you want to infiltrate a group, adopt as many of their behaviors as possible. So if you're not actually an NT, you don't have to agree with them ... but the more you can fit in, the more you can learn about their strange society (and maybe send on to Wikileaks!). And they themselves may even reward you!

They don’t call it a “spectrum” for nothing, do they? When it comes to discussing Cameron’s disabilities, I still find myself tap dancing a bit, especially when discussing it with someone within the Autism “community”. When speaking with parents of Cameron’s peers at school, there’s always that point in the conversation where I start feeling out their child’s capabilities as compared to Cameron’s. It’s not intended as a competitive comparison, but more of a need to find a baseline for where Cameron is compared to the herd. It’s inevitably a delicate conversation, because I feel I’m either going to be crushed by the realization that Cameron is far behind the curve, or I’m going to crush someone else when I highlight Cameron’s high degree of independence. When I read columns written by my colleagues at Autism After 16, I identify with bits and pieces, but usually am left comparing where Cameron is to the writer’s subject matter. Cameron is usually so far off in one direction or another from any other ASD person that I’ve started referring to it as the Autism “Galaxy” as opposed to “Community.” I often feel Cameron is on a planet of his own in this galaxy. He’s like Pluto. Adorable, just like Mickey Mouse’s dog, but sometimes a planet, sometimes not, just kinda hanging out revolving around the sun, but at a much slower pace than those of us here on Earth. Coming from a planet of one, it’s impossible to find someone that speaks your language. But he’s adapting, as best he can. I’m no space explorer, but I suspect there are hundreds of planets in this Autism Galaxy, all very different from each other. So what is there to learn from the vast differences I see among the planets? It’s much more than, “Man, I’m glad I don’t have to go there!” or “Wouldn’t it be nice if we were there instead?” Perhaps interplanetary travel will facilitate relocation to different planets. Have I run this metaphor into the ground yet? Or am I digging myself into a black hole? My point is this: The more we talk to each other, the more we can learn. But in order to learn more, I realize I need to push myself beyond that social awkwardness and have the conversation without fear of offense. I don’t know that I would’ve realized that, had I not started this writing gig with AA16. In my enthusiasm for this website, I find conversations gravitating towards the issues facing the Autism Galaxy more and more. I feel a certain sense of relief coming from both sides of the conversation as the discussion takes place. Whereas before, it was a little like discussing religion or politics, now it’s more of an empowering feeling. Someone in the conversation has inevitably been there and done that, and the other participant in the conversation always welcomes details about that experience. But if I hold back, and fear I’ll appear less than adequate as a parent, or as a pushy know it all, I might as well be on a planet by myself. And what fun would that be?  

Last week, as part of my current care-giving role, I assisted an older gentleman named Stuart with his personal care routines. Stuart is recovering from total hip replacement surgery, and as such, he needs more assistance than usual. I helped him to shower and dress, and I cleaned up after him in the bathroom as well. As I held my nose, I reminded myself: This, too, is an act of love. 

As Stuart and I sat eating lunch at the kitchen table, he noticed the website I was reading: Autism After 16. He tried to sound out the words, and then, failing that, he asked me what it was. It was then that our conversation turned to the topic of intellectual disability.  

“Autism, oh yeah,” Stuart said. “I know about that. It’s something…that’s when something’s…different physically, right?” 

“Well, sort of. Autism is actually related to the mind,” I said, trying to explain a complex neurological condition in a way that he would understand. “It means that some people’s minds work differently than others.” 

“Oh, okay,” Stuart said. “You know, there’s a guy at my church who has autism. He comes to the services sometimes.” 

“Cool,” I said. “I bet since you’re an usher, you help him find a seat, right?” 

“Right,” Stuart replied. Then he paused, and said, with a tone of melancholy in his tone, I feel sorry for him.” 

Bear in mind, Stuart himself has been diagnosed with an intellectual disability, though he adamantly refuses to acknowledge this diagnosis. Bear in mind, too, that Stuart was born in 1936. He grew up in a time when people with intellectual challenges were often institutionalized. He grew up in a time when people with disabilities were overtly rejected by society. In the course of previous conversations, I’ve come to realize: Stuart equates having an intellectual challenge with stigma and isolation. 

I gathered my thoughts. Though I did feel a stab of hurt at his comment, I also saw an opportunity. Despite my discomfort, I knew that Stuart’s words weren’t meant to be hurtful. I also knew that they came from a lack of understanding. 

“Well, about that,” I said gently. “Did you know that my younger brother, Willie, has autism?” 

“Oh yeah?” he said, sounding interested. 

“Yeah. And, though he does have some big challenges in his life, he has a lot of things that come easily to him, too. He has amazing gifts.” 

“Like what?” 

“Well, he’s super-talented at music…” 

“Like me!” (Stuart loves to pound on his drums and play his harmonicas with all his might.) 

I laughed. “Yes, like you, he really enjoys playing instruments. He’s also a good artist, and he’s got a fantastic sense of humor. Always joking around…” 

I paused, raising my eyebrows for dramatic effect. Stuart smirked and laughed; he’s always playing pranks and making jokes. 

“…just like you,” I finished the sentence. “So, even though he’s different from you in some ways, he’s a lot like you in other ways. And he’s come a long way in his life, to have all that he has now.” 

I wanted to add, “He has a home. He has a family who loves him no matter what. He’s got a work program, piano lessons, and activities he enjoys. And he’s my brother, and I love him. So there’s no need to feel sorry for him,” but I couldn’t say anything more. I felt myself choking up, so I stopped. But I knew that the overall message came across by the way that Stuart smiled at me. 

There’s no need to feel sorry for my brother, or for any of us who left “normal” a long time ago. We don’t need people to pity us; we need people to walk beside us. We need compassion. Understanding. Patience. Friendship. These are same things that you need, because they are the things that bring us together, the things that sustain us all. 

 

Transition from the Trenches by Julie van der Poel

Tuesdays with Madison by Rebecca Faye Smith Galli

Roots and Wings by Liane Kupferberg Carter

Life of Reilly by Rose Donovan

A Place for Us by Judith Colihan

Building Bridges by Jeffrey Deutsch

The Learning Curve by Benjamin Kellogg

On the Job by Christopher Wedding

Leaving Normal by Caroline McGraw

Cody's Road by Michele Langlo

Making a Difference by Kerry Magro

You're already in college, or even beyond, and still never had a date. 

You've graduated college, or been years out of high school, and never had a significant other. 

You have no friends. Or, all your friends are people who nod at you in the hallways or on the street. Except when you're “loaning” them money, helping them move, writing their term papers for them, etc. 

You keep losing jobs, paid and unpaid. And they give you reasons that are very vague, difficult to understand or even outright false. 

Filling out a job application is a game: “Hmmm . . . do I have to list this job if it's unrelated to the job I'm applying for and it only lasted seven weeks? If the boss told me his grandmother died of arthritis and that's why he's closing up shop, can I just say that's what the boss told me? And leave out the fact that when I told my little brother about it he took five minutes to stop laughing enough to explain the concept of  “white lie” to me?” 

You want to buy stock in Selsun Blue, because of all the girls you call for dates who have to wash their hair every night. 

When shopping for clothes, you restrict yourself to the shirts without tags because they're the painless ones. 

Especially with personal conversations, you'd much rather exchange notes or use email or IM than talk on the phone, and you'd rather talk on the phone than meet in person. 

Small group conversations feel to you like driving while texting with one hand, eating a burger with the other and also changing DVDs feels like to many people. 

You're trying to figure out how much of your Atari 2600 expertise you need to exhibit in a single conversation before the other person will become so impressed they immediately invite you to their place for dinner. 

You can't wear certain fabrics without serious pain. 

You're always on eggshells, because you never know when someone will blow up and yell at you, telling you for the first time all the things you did over the last few months or years that pissed them off—and you had no idea about. 

Plus, your stomach turns at the mere thought of hearing afterward “I didn't want to hurt your feelings!” or “I was trying to be polite!” 

Other very common phrases you hear are “It's no big deal,” “Let it go,” and “Drop it!” 

You swear your arms get all the exercise they need raising your hand in class. 

If you're male, females are friendly to you, talk to you, tell you there's no problems . . . and the next thing you know you hear from their boyfriend or their brother or even the Dean's office or the cops about your supposedly harassing them. 

If you're female, males are friendly to you, talk to you, tell you there's no problems . . .and the next thing you know they try to push or even force you to do something you really don't want to do.

When day habilitation services are contracted for an individual, it is not as if all involvement of family members or caregivers can be just turned over to the staff and then they are expected to be solely responsible for the successes and failures of the individual they are there to support. Involvement of family, guardians and caregivers is essential to the success of a skill to be learned and applied by the individual.

After finally getting day hab services for Cody started, it was important for us to get to know the staff and to find out exactly what kind of curriculum they intended to employ. And they needed help from us as well. It was important to them to know Cody’s likes and dislikes, his personality traits that could be used as tools to incorporate into their plan to get the best results, and the areas that we felt needed the most immediate attention.

The first skills we wanted to see addressed were simple, everyday life skills that would help Cody begin to learn how to be more independent, including safety skills to use when in out in the community. We focused on household chores, simple meal preparation, and community integration activities. We wanted him to learn to go to restaurants and order and pay for his own meal. To go to the store to purchase specific items and correctly pay the cashier. To look both ways when crossing the street. We asked that support staff make a structured plan and then leave us notes about what they did during the day on how well Cody did and what kind of behaviors he had. But on days the staff was not there, we were expected to continue working on the skills they had worked on during the week.

There are many ways in which we help and encourage Cody to continue to practice the things he works to learn with his staff. And it’s really not that difficult. They are the same things that most of us never give a second thought. For instance, when we visit a restaurant, we encourage Cody to greet the staff who comes to take our order. Cody must order his own meal from the menu. If he needs assistance we are there for him. But we encourage him to do as much as he can on his own. When we are done, we work to explain to him what leaving a tip is about. Then we give Cody the bill, show him where the total is, then show him how much money we will need. When it comes time to actually pay we may give Cody the money and have him pay the cashier.

We also work to instill in Cody appropriate behavior to have in a restaurant. We work with him about using a proper voice tone, polite manners when speaking to the staff and when eating, and how to ask where the restrooms are. Then there is watching for moving vehicles when walking from the car to the restaurant and vice versa.

There are also ways we can work on these very skills right at home. One of the things Bill did was to buy a play money set. You can find a one at variety stores, toy stores or educational stores. Cody’s looks like a cash register drawer. It has pennies through quarters as well as bills in denominations of ones, fives, tens and twenties. We first help him to identify each coin and then each type of bill. We work with him to teach him how much money that is. Math has always been a challenge for Cody, so it continues to be an ongoing process which both requires our patience and his.

Knowing when the learning experience is no longer viable is also crucial to an individual’s success. We can tell that when Cody can no longer sit still, he is gazing is out of the window or off in another direction that distractions are getting the best of him and aggravation is setting in. This means he is losing all focus on the task at hand. Pushing him to continue working on a task beyond this point would serve no good purpose. In fact, it may result in a complete meltdown due to building frustration—on Cody’s part, but also in my husband and me. This is the time when we need to stop these life lessons for the day. So we do our best to end on a good note, praise him for what he has done well and then begin fresh again tomorrow.

One feeling which I have become very accustomed to throughout my life is anxiety. On many occasions, I feel an enormous pressure to complete a task or intense anticipation for a certain event which I find hard to ignore. This force has been both a powerful motivator and an almost insurmountable obstacle in my life. I am not sure if I will ever be completely rid of it.

When I feel anxious, my mind becomes clouded, oblivious to everything around me except for the task at hand. As my anxiety grows, individual details begin to overshadow other aspects of my activities, standing out like large towers looming in my mind. My worrying also takes a physical toll on me, causing me to feel moments of weakness and to get ill. It takes much encouragement from the people around me, mainly my mother, for me to stop becoming so obsessed.

My time in college has provided many examples of how anxiety affects my everyday life. In the days leading up to each semester, I check the college website daily for when my classes will be put up, becoming more anxious with each passing day when they are not. Once classes do start, I then become obsessed with my assignment deadlines, working feverishly to fulfill all of the requirements for each and worrying about every last detail. Even when my assignments are finished, I begin to worry about what my final grades will be for each submission, the class as a whole, and my collective grade point average. The presence of so many details in one setting tends to overwhelm me to the point where I think that I am suffering the academic equivalent of not seeing the forest for the trees.

Anxiety recently played a significant role in my preparation for the current college semester. I was at the college bookstore with my mother looking for the textbooks I would need for my classes. I became anxious as soon as I got into the store. I was not able to take in my surroundings and I headed directly for the cash register without realizing there were people in line ahead of me cashing out. My mother had to point out to me that there were people ahead of me and that I needed to get out of their way. The crowded situation in the store caused me to feel a bit claustrophobic. We spent a minute or two finding the books on our own, during which time I became worried that they would either be sold out or unavailable. One of the store’s employees helped us find the remaining books I needed, but I became somewhat uncomfortable around him, just as I would around anyone I do not normally interact with on a regular basis. Also, there was a line of people in front of the store’s cash register, meaning that my anxieties grew the longer we waited for our checkout time to come. Furthermore, because of my spatial issues when people are too close to me, it became uncomfortable as people passed in front of and behind me to get where they wanted to go. I am glad that this ritual of my college life only happens about twice a year, but when it does come around, I always feel uncomfortable about it.

Life outside of college also offers plenty of opportunities for my anxieties to surface. If my family is about to head out for an errand or trip, I wait for the anticipated time of departure; it always seems a few moments away to me, making any delay seem an eternity. If I decide to watch a TV show at a certain time and I do not feel inclined to record it using the DVR, I attempt to pass the time by visiting my favorite websites on the Internet, playing video games, or watching television, but the primary show’s start time is constantly thumping around in my head, which sometimes drives me to distraction for the moments leading up to it. Details of my daily chores, such as making sure that I put the right amount of detergent into the washing machine, sweep every single visible portion of the kitchen floor, and straighten all of the sheets of my bed haunt me for long periods of time during the day. It seems that hardly a moment of the time that I am awake goes by without some new worry accompanying me.

In my examination of my anxieties, I have found that I have a tendency to concoct mountains out of molehills; I perceive imaginary difficulties when, in reality, the challenges life presents to me are comparatively easy. I feel that I need to work on controlling my anxieties. For most of my day, I suffer from anxieties of every possible sort even when I know that this should not be so. I have spoken with my parents several times about learning to control my anxieties, but thus far, I have been unable to take their advice to heart. I am not sure if I will be able to completely control my worries so that they will cease to be a regular occurrence, but I do and will try to not let them rule my life.    

After last week’s column, I was asked, “Do you think about what it would be like to have a kid with autism yourself?” And I do. In fact, I tend to imagine any future child as having autism or other special needs. 

In part because of my life with my brother, in part because of my current care-giving work, it’s difficult for me to picture a family without autism. And,the jury’s still out regarding the statistical likelihood of me having a child with autism. 

When I consider starting a family with my husband, I am faced with several truths. One truth is that I am intimidated at the thought of having a child, any child. The idea of being a mother seems daunting to me, perhaps because I appreciate the level of commitment it demands. 

That said, I have spent the last five years in a professional care-giving role. These years have been rich and full. My life experience in tending to physical, emotional and spiritual needs (my own as well as another’s) would stand me in good stead should I become a parent. 

Yet even with my experience, I am afraid

I fear for my imagined child with autism, born into world of prejudice, a world wherein people who are differently-abled are not offered the same choices and opportunities as those who are considered “normal”. 

So this is one part of the truth:  my intimidation, my fears and our collective bias. And yet this truth is not the complete picture. It’s not the end of the story. 

There is another truth, the truth of the people with special needs and autism that I’m honored to know, the truth of being my brother’s sister. This is the truth that we all change each other. And, in changing one another, we begin to change our world. 

Knowing and loving one another alters us in ways we cannot understand fully. Caring for one another alters us, deepens us. All children are individuals, with unique strengths and weaknesses. In this way, having a child is always a risk. 

I know the risks. I know what it is to feel unsafe in your own home. I know what it’s like to question whether or not you actually love your own brother. And yet I also know what it’s like to come through these things stronger, kinder and more fully human.

On my wedding day, I am told that my brother made an announcement. After remaining quiet throughout the ceremony, he spoke up just after my husband and I exited the room. Willie stood up and told everyone, “Now Caroline's going to have a baby!” 

While his statement wasn’t exactly accurate, it was, I believe, straight from the heart. I can guess how it was in his mind: Willie has seen friends of mine get married, and he knows that babies often follow their unions. Knowing this, I wish I'd been there to hear him say it. I would have laughed along with everyone else, because who knows? He may be right. And I like to think of that announcement as Willie’s own oblique way of giving his blessing. 

In the end, I believe it comes down to faith. Do I have faith in love and its transformative power? Do I have faith in the beauty of diversity and differing abilities? Do I believe that people who have autism are just as fully alive as I am? 

And, at the end of the day, there is nothing I can say but Yes

Last week, while driving upstate, I noticed that several cars ahead of me in the left lane, one after another, swerved onto the shoulder around a certain spot. When I got there, I noticed a couple of long strips of tire. Nothing I probably couldn't just drive over. 

Which I would have—if I'd been alone. 

Seeing all the other drivers swerve around the tire strips, I wondered if maybe the other drivers knew something I didn't. So just to be safe, I swerved too. 

Safe in at least one sense: If there was something more to the tire strips, like maybe the possibility that my car could have slipped on them and skidded, I avoided that danger. 

But how do I know that they were right? In fact, what if only the first driver had decided independently to swerve, and everyone else behind her had each had simply followed suit? Remember when you were in a study group, and everyone assumed everyone else had read the material so nobody at all studied? 

What if I was wrong? Well, if I swerved wrongly, the consequence would be a few feet of wasted driving and several extra seconds lost. 

But if I drive through wrongly, I might risk damage to my car...but also looking like a fool. 

Thing is, a mistake can be one thing if everyone is wrong together. However, it's quite another if you're the only one messing up. Then you may really look dumb! 

In fact, people are wired to assume others know what they're doing and imitate them. As Richard Conniff documents in his The Ape in the Corner Office, imitation and conformity began with the animals. Standing out has always been a very good way to attract a predator's attention. In other words, it's not so much a matter of finding out the “objectively best” thing to do, as it is making sure you stick with the herd. 

People do what they do in large part because they figure other people will want to do it. For a real-time version of this behavior, observe any investment banker in action. The worst-case scenario is a speculative bubble in which people bid something's price up to ridiculous heights because they figure some “greater fool” will take it off their hands for even more money. 

Three lessons for Aspies: 

First, people aren't necessarily logical. Logically, I should have saved the time and energy by driving through the tire strips. I didn't, and I had plenty of company. 

Next, the logical solution is not necessarily the best one. Maybe others know things you don't, especially when you have to make decisions on the fly. In fact, according to a study, knowing how somebody else felt about an event is a better indicator for how you're likely to feel about it, than is knowing about the event itself! 

Finally, conformity really can matter. Even if you're right, sometimes the best thing is whatever the group is doing precisely because it's what the group is doing. For example, we all drive on the right side of the street in the US and the left side in the UK. What matters is not which side in itself but rather that everyone drives on the same side. 

So, I'm not sorry about having swerved around the tire strips. On the other hand, I am sorry about having done so little to fit in while in school. I was voted “Most Individual” in junior high school, and also “Most Individual” and “Most Controversial” in high school by a landslide. Now, if you know of anyone who was voted “Most Individual” and/or “Most Controversial” and “Most Likely to Succeed” please drop me a line!

 

It was probably about five years after Cody graduated from high school when Cody’s case worker called us and began asking questions regarding our thoughts about the possibilities of Cody seeking work. Funds were still limited in Missouri and finding programs the state would pay for had already proven to be a serious challenge. But I had serious reservations about those prospects. I really felt like Cody needed to learn more problem solving skills, life skills and other necessary social skills before he entered the work force. How could he be expected to function in the work place with so few of these skills on board? I began to think about social dilemmas that could arise from others who did not understand my son. He still had a habit of thinking that it was OK to just take what wasn’t his even though we had been working very hard to instill in him, that was not acceptable. But the longer he sat at home without any social interaction with others, the more a gradual regression began to ensue. This was not a situation which gave me an easy feeling, either. So I opted to at least check it out.

We went to the local vocational rehab office to fill out the paperwork. We talked with a vocational counselor who told us that we would be given a list of agencies to choose from. These agencies would evaluate Cody for different types of skills that could be used in a workplace, provide a staff member to accompany him to the job site and then that staff member would provide any assistance and counseling he would need to complete tasks during his time at work. All we would have to do is to provide transportation to the vocational rehab office each day, where they would meet.

It all sounded very good, but shortly after our initial meeting Cody broke his foot and we could not complete the process. 

After Cody’s foot had healed we began the process of pursuing day habilitation services further. Cody’s time in a walking boot had given me the opportunity to rethink the whole idea of sending him into a work environment without the social skills and life skills I so desperately felt he needed. The more I thought about it, the more uncomfortable I became with the idea of him going into the work place without the ability to ask questions, to act appropriately around others and to handle the stress of an ever-changing environment. How could sending him into a situation like this unarmed be conducive to good self-esteem and self-confidence? I could just envision my son engaged in a full-scale meltdown after failure to thrive in his work, day after day all because I, his mother, who is supposed to love him and be on the lookout for his welfare overall, sent him into this circumstance unprepared for what he would face, simply because there was no funding to pay for other day programs which would have been much more applicable for meeting his more immediate needs. So once again research and telephone calls filled our time, when we were not at work, to continue to seek any possible day rehabilitation programs out there that state funding would pay for.   

It was several more months before day hab services became available, but it was well worth the wait. Once a week Cody’s staff takes him for community integration activities or a social setting where the staff is there to supervise and instruct Cody on proper social interaction, purchasing meals at restaurant, shopping for items on a list and then paying for them with an appropriate amount of money.

All of these things Cody is now learning will teach him patience, consideration toward others, to focus on a particular task from start through completion, proper actions to take in the work place regarding his time and work ethic, to converse appropriately with those around him and ask to questions to those in a supervisory role when he is in doubt. Cody looks forward to those days his staff comes and he is rewarded for a job well done, whether it is preparing his own meals, completing a job successfully with few or no prompts at all, counting money and knowing he is able to express himself in a manner in which he is understood. Once he is able to firmly grasp hold of these talents in a firm manner, then employment can be a consideration and his success at the end of a work day can then be something for him to be proud of. But from my standpoint right now, it is just a blessing to see him begin to learn what life in the real world of adulthood is all about.

 

 

While babysitting for my friends’ young son this weekend, I couldn’t help but wonder about my brother Willie as an infant. What was he like back then, before his autism diagnosis? How were he and I alike as babies, and how were we different? 

From my mother, I hear that our personalities were distinct even from birth. I was nearly three weeks late, and when I did come into the world, I came with my eyes wide open. Though it’s atypical for an infant to have a sustained, focused gaze, my parents swear that I met their eyes with a purposeful look of my own. 

Willie, by contrast, fell asleep almost immediately after being born. His first act in the world was an act of rest.

When I consider these stories, I think about the gifts that both of us brought, gifts from within our natural ways of being in the world. I’ve always been a determined person, and I’ve always valued close relationships. In these things I’ve had the privilege of being my brother’s teacher; I’ve tried to help him achieve his goals and connect with others. 

Willie, on the other hand, teaches me about fidelity to myself. Willie teaches me about there being a time for everything. Willie teaches me that it is all right to run away laughing, to play, to rest. 

As I care for my friends’ son, another insight comes: I am prone to over-caring. I can see within myself the tendency to do everything for, to prevent the child from struggling. If a toy is out of reach, I push it closer. If the baby’s arm momentarily becomes stuck in the sofa, I free it rather than let the baby learn his own way out. 

When I’m caring for someone with special needs, it’s tempting to value efficiency over independence…yet so often, what’s needed is not for me to do for, but to do with. My brother doesn’t need me to make a phone call for him, but with him. He doesn’t need me to order for him at a restaurant, but with him. 

This isn’t simply a question of semantics. It’s the difference between fostering unhealthy dependence and empowering a person to grow. In my own life, it has come down to this: Do I believe that I have something to learn from the person I’m caring for? 

If I believe myself superior to my brother, I will try to do everything for him. If, on the other hand, I believe that I have things to learn from him, then I can pay attention. I can travel expectantly, allowing my brother to learn and grow. 

Recently, I borrowed a few home videos from my parents. I borrowed them with the intention to search for evidence. I thought that watching the tapes would help me to know, in some deep, essential way, that Willie and I are who we have always been. 

I know what I expected to see:  Willie as a happy-go-lucky kid, content to grin in the background while his older sister took charge. That’s how it was when we were younger. But we switched places many times in the course of our life together. As a teenager, I sometimes felt as though I’d stepped into the background as my brother’s struggles took the foreground in scenes of our family life. Even before I’d pressed Play on the ancient VCR, I had a strange feeling that the tapes wouldn’t show me what I needed to see. 

And that feeling proved correct. When I tried to watch the tapes, the decrepit VCR garbled them and spat them out. I was left frustrated, with nary a scene, nary an image to hold to. 

And then I realized: That’s the point. I don’t need a video to tell me who we are. If I want to look at the person my brother was born to be, all I need to do is look at him. He’s not a mystery to be solved, but a person to be loved. He’s a work-in-progress, but then, so am I. So are all of us.

 

 

 

 

Here's what Emily and I think it takes for a reasonable and caring NT to establish a good working (or other kind of) relationship with an Aspie: 

Firmness and consistency—even more than with most people. Rapid changes, especially if they seem arbitrary, can drive an Aspie out of his mind. 

Advance planning. Aspies, as a group, don't take well to spontaneity like “Instead of going to the park this morning like we planned, why don't we get Chinese takeout instead?” 

Willingness to converse one to one. Aspies keep track of things, let alone people, best one at a time. Small group conversations can be very difficult. 

Conciseness. Aspies take in facts best in all their literal, unvarnished glory, one at a time. So be prepared to give the bullet point version when talking about something. 

Ability to go into detail. Remember that the Aspie may not have the background knowledge of the situation that many NTs would. In fact, an Aspie (and probably some NTs) may not even know enough to know to ask a question about something. So, for example if you're going to an event which serves food and which asks for donations to defray the cost of same, make sure to volunteer that fact up front. 

Patience with multiple questions. Aspies have difficulty generalizing. For example: 

“It's going to be cold that day. Make sure to wear your coat on the bus going there.”

 “What about going back – do I also need to wear my coat then?”

 “Yes, that would be a good idea too.”

Patience in general. It may take several different ways of explaining something to get the point across:

 “How long would it probably take us to get there?”

 “Well, you know traffic is tied up that time of day, and especially along the Beltway it's bumper-to-bumper traffic.”

 “But how long would the trip be?”

“Well, you take into account that it's going to snow a few flakes, and Washingtonians' collective driving IQ drops heavily when snow is involved.”

 “Once again – what amount of time will the trip take? About how many hours?”

“Oh I see. Figure between one hour under normal conditions and an hour and a half or even two hours, tops, if the traffic gets really bad.”

 “That long possibly, huh? OK, thanks for the information!”

Tolerance. Not only for the Aspie, but also for many people who won't be quite as kind and understanding as you are. Not to mention a great big dollop of patience will come in handy here too. If, say, you're the Aspie's boss or significant other, people will come to you with complaints, of varying degrees of merit, about things he's said or done.

Individual understanding. AS affects different people in very different ways. Your Aspie friend, worker, lover, etc., is still an individual and needs to be treated like one, not like a generic prototype. Not all or even most Aspies can do the same things or need the same accommodations. For example, some Aspies have no problem with public speaking, while others find it a major effort even to get out of the house.

Last but not least, a whole bunch of kindness and love never hurt.

What I thought I knew about autism some two decades ago could have fit on the head of a pin. Brief snippets of made-for-TV movies and a character on a favorite weekly series told me that autism was either something that could be “overcome” through countless hours of hard work and obsessive dedication on the part of the autistic child’s parents, or a lifelong, debilitating condition that doomed the sufferer to a world of non-communicative isolation. The one thing I did not know—the most important thing of all—was that my life was playing out on the autism spectrum. That fact was impacting every facet of my existence, every decision I made about my present and future, every choice in my past. Two decades ago, as I was making my way into the adult world, what I knew about autism and the transition to adulthood and beyond was exactly nothing. But now, I know more about autism than I ever thought there was to know. With the diagnosis of my son in the late 1990s, and my daughter several years later, my knowledge base from the parent perspective grew by leaps and bounds. Along the way, I began to suspect that much of what we identified as my children’s strengths and struggles mirrored those of my own past—and present. But it was not until years later that I made the decision to “kinda” find out for sure if the ratio of Aspies to neurotypicals in my household was more like 3:1 than an even split. I sought out what I classified as an informal diagnosis and proceeded to test out different strategies that I knew had been successful with others and apply them to my own life. This approach gave me the strength I needed to come up with a plan to achieve career goals that had been all-but-forgotten. Suddenly (!) I find myself with a Master’s degree in Special Education, and am now enrolled in a doctoral program in the same discipline, while teaching adolescents and young adults with developmental disabilities in a Career Education program at a private school in Pennsylvania. Most recently, I made the decision to seek out definitive answers about what made me tick, and as suspected, the answer came back: Asperger’s Disorder. Truth be told, there was a time where I would not have minded the word “disorder” so much, but I have come too far, and learned to much, to feel comfortable using that word to describe how my brain is wired. As long as I can continue to find ways to use my Aspie powers for good instead of evil, there’s not too much disorder in my little world, after all! Had I known some two decades ago what I know now—as a parent, as an educator, as a student, as an autistic person—I can only imagine what a difference it would have made in my own life, and the lives of the people who matter to me the most: my neurotypical husband (God bless him!) and my children. What I can hope for at this point is that it is not too late for them to share in the benefits of what I now know, and what I am learning still. I hope, through this column, to have the opportunity to talk about the ins and outs of becoming and living as an autistic adult. And because I am spending unending amounts of effort, energy and tuition on studying special education issues (my dissertation is going to be related to transition issues in some way, shape or form) and more than 35 hours a week as a teacher in Career Education, I hope to be able to provide, at the very least, an informed perspective. Because there is one thing I have learned since finding out that I’m autistic: Knowledge is power. All of a sudden, after a lifetime of knowing what I wanted for myself professionally and not having any idea of how to get there, I’m a teacher…and a writer.

A large portion of my primary education was spent being taught at home by my mother. My parents removed me from the public school system because they had a major point of contention with the district’s program coordinator who was not willing to work with them as a team regarding my needs. Therefore, they decided to take me out of the public school system after third grade and home-school me. Over the course of many years—up to the point when I earned my GED—my mother used special courses and classes to teach me about the world. There were many benefits to me being home-schooled which helped me to improve mentally, emotionally, and socially. 

My home schooling was mainly conducted using two sources: a series of packets with content similar to textbooks, and a more traditional set of textbooks from another company. Both sources were written using a heavily Christian slant and proved to be excellent sources of information for all my subjects. The material presented in each book was very advanced, so much so that the state tests I took at the end of every school year dealt with material I had learned about two to three years before. The vast difference in the level of the material made me feel strangely empowered whenever I talked with my friends about what they were learning about in school.  

There was one case, however, in which the material was so different that I could never completely wrap my head around it, no matter how hard I tried. This was algebra. In my experience, it was a convoluted set of formulas in which numbers needed to be calculated in a particular way. If a calculation was even slightly off, the equation’s logic would be broken into a million pieces like a delicate Faberge egg. I could handle small groupings of three to four numbers and equations of only a few steps with relatively no problems, but once they increased beyond a small threshold, I had difficulty keeping up. I was able to get through my first year of basic algebra with my head above water, but for the rest of my home schooling and into college, I was never able to completely master the subject. 

I was not completely isolated from the rest of the world while I was being home-schooled. I still kept up with the happenings of my elementary school friends at religious education class, informal meetings, and other occasions. I also took part in a variety of extracurricular activities. I attended jazz dance classes, was part of a private treble choir group, and took piano lessons. I still study the piano. All these activities included some type of public performance at various times during the year. Being part of the treble choir put me in front of audiences many times. From the time I was in preschool until the time that I finished being home-schooled, speech, occupational and physical therapies were part of my life. As I did my therapies. I had to adapt to whatever social situations were occurring. These therapies gave me a chance to get out into the community and learn good communication skills. I also participate in a number of sports programs designed to accommodate people with special needs. I participate in Special Olympics and Challenger League Baseball and have done so for many years. I have met many people while participating in these activities, and have gotten to know a few. I have one very good friend that I do many activities with. 

Home schooling also helped me to learn how to deal with frustration, an emotion I often felt as I did my schoolwork. There were times during study sessions when I would become hung up on a particular fact. I would become very frustrated with my inability to recall this fact during times when it really counted. When this happened, my mother would take me away from my work for a while and perform drills with me where I would repeat the fact numerous times until it was firmly implanted into my mind. After performing these drills, when I encountered the fact again as a question on one of my tests, I would remember the information and answer the question without a second thought.  

In addition, when I was getting particularly frustrated about my schoolwork in general, my mother would give me sensory input like deep pressures on all my joints and do brushing therapy. When she did this, I became much calmer and was able to think more clearly when I sat down to do my schoolwork again. Also, by being at home, I was able to take more breaks when needed in order to calm down. Another great therapy that helps me a great deal is a listening program. It helps with loud noises and also helps calm me. 

Working at home did offer a unique advantage that I never would have gotten if I had stayed in the public school system. I could enjoy looking out the window at pleasant sunny days and calm scenery, hearing almost nothing but the sound of a gentle breeze at times. I almost never got such opportunities at the elementary school I used to go to because the classrooms and lunchrooms were always crowded, generating levels of noise which I had great difficulty tolerating. I still enjoy this advantage to this day because I attend college online and work out of my home. 

I feel that my home schooling provided a solid foundation for the rest of my life. I learned much about the world and social interaction. I will always cherish the new friends I made and the opportunities that learning at home brought me. I was not confined to my home; instead, the world opened up to me.

When my brother Willie was younger, I knew just how to make him laugh. All I had to do was initiate our favorite game. As children, we developed a fairly elaborate game that we called, “Run away.” 

The game went like this: To begin, I would stand on a small wooden stepstool in the kitchen. Willie would look on with glee, his face alight with anticipation. He knew what was coming next. From my perch, I would feign disinterest in him, gazing at the spice jars on the bottom row of my mother’s antique spice rack, which was mounted on the wall just above the stepstool. 

Once I’d turned to face the spice rack, I’d read out the names of the four jars on the bottom row. (I read the bottom row simply because it was the only row I was tall enough to see when we first began our ritual.) Slowly, I’d read, “Basil … Allspice … Thyme …” 

At this point I’d pause for dramatic effect, allowing the tension to build. Suddenly, I’d yell, “PEPPER!” and the race would be on.  

I’d leap from the stepstool and take off running. Willie would usually be ahead of me given his head start, but I’d race to catch up with him. We’d run around and around the ground floor of our home, running as though the hounds of hell were chasing us. All the while, we’d be wailing, “Run away! Run away!” over and over again. 

This was my mom’s cue to chase after us, which she did day in and day out. (God bless mothers.) The game always ended in the same way, with Willie and I huddled together in the carpeted stairwell. We’d cling to one another, trying to avoid being tickled by our mom. A mixture of laughter, excitement and adrenaline would be coursing through us, and we’d be gasping for breath. 

Looking back, I can think of several logical reasons why the game was so appealing to us as children. First, it served as a carefully-constructed ritual, something we ourselves had created. In addition, there was the physiological high of running and being chased, of pretend danger; it was addictive. 

Yet the thing we loved most of all was the feeling of togetherness, of solidarity. It didn’t matter that the danger we were trying to escape from was imaginary. It didn’t matter that we had full control over whether or not to play the game at all. It didn’t matter, because we were in it together. 

A final unspoken-yet-immutable rule of the game was that whenever one person admitted defeat, the other did, too. When I would throw myself into the little stairwell in exhausted surrender, Willie would jump in after me. My mom would catch us both there. 

As we grew older, we played the game less and less, until finally, it became a memory. As a teenager, I remember thinking that it was bizarre; who made up games like that?

Now I realize that, though perhaps it was a bit strange, it was also ingenious. It filled our mutual need for adventure. It made our comfortable, familiar home a place of drama and danger. And most of all, it was a form of play that both of us loved. 

As an adult, I can see how valuable it must have been for Willie to race around with his sister, instead of rewinding videos and memorizing film credits. What a gift it must have been for my parents, to see their son and daughter banding together. 

Years later, our silly game is still a treasure for me. It gives me the assurance that, although my brother is “different”, he’s still my partner in crime. 

And though I didn’t realize it at the time, that game began teaching me the lessons I needed to learn as Willie’s sister.

To take connection with Willie in whatever form I find it. 

To celebrate what works, rather than focusing on what doesn’t. 

To see our similarities and honor our differences.

And most of all:  To do whatever it takes to end up in a pile, laughing.

 

 

I've been happily married to Emily, an NT, for close to seven years now. She taught me about AS...and then about NTs. Here's a few things she's helped me discover about how people relate: 

Knowing exactly when she'll be home from work each day is not in fact a matter of life or death. 

Timing matters. For example, if I'm thinking of going to yet another event or meeting on a Saturday, I don't mention it when she's wondering how much time we can spend together. On the other hand, if she's complaining of how little sleep she gets, I can tell her she can sleep in on Saturday without me around to disturb her. 

When I'm sitting in the car ready to go and she's running late to someplace we're both expected at, it may be mutter-under-my-breath time but it's not meltdown time. 

Maybe she just wants to tell me about the goings-on among her colleagues because it helps me understand her feelings, not because I can do anything useful with that information. 

Sometimes it's nice to be the one who wants to move on and agree to disagree. (It helps—if that is the word—that  she's a lawyer!) 

Sometimes just sitting with her without saying anything is good, because she wants to know I enjoy being with her. 

Trying new things, like Moroccan restaurants, can be good if planned in advance. Many people like to use restaurants as ways to explore other cultures. 

Some people can actually stand to watch others nonchalantly saunter across the street against the lightand still not even be tempted to honk at them! 

She wants to know how she looks—even when she already knows the answer she wants to hear!

It's actually possible to converse about emotional topics in real time, not just by exchanging emails! 

If a top executive is visiting the office, you should not only clean off your desk but also have your best recent written work within easy reach, and extra chairs not only for the executive but also any guests of his/hers. 

One can relax without rocking back and forth or side to side! 

Emily carries her bags to the door in the morning, looks for her scarf and talks to me ... all at the same time. (When reading this, she said she didn't think it was much of an accomplishment!) 

No (inanimate) explosive force on Earth matches a woman to whom you have just used the phrase "women more attractive than you." 

It's possible to meet someone who behaves in totally unusual and at times off-putting ways, put in loads of hard work and patience to understand them and love them for who they are ... as she's shown me for many years so far.

I've been happily married to Emily, an NT, for close to seven years now. She taught me about AS...and then about NTs. Here's a few things she's helped me discover about how people relate: 

Knowing exactly when she'll be home from work each day is not in fact a matter of life or death. 

Timing matters. For example, if I'm thinking of going to yet another event or meeting on a Saturday, I don't mention it when she's wondering how much time we can spend together. On the other hand, if she's complaining of how little sleep she gets, I can tell her she can sleep in on Saturday without me around to disturb her. 

When I'm sitting in the car ready to go and she's running late to someplace we're both expected at, it may be mutter-under-my-breath time but it's not meltdown time. 

Maybe she just wants to tell me about the goings-on among her colleagues because it helps me understand her feelings, not because I can do anything useful with that information. 

Sometimes it's nice to be the one who wants to move on and agree to disagree. (It helps—if that is the word—that  she's a lawyer!) 

Sometimes just sitting with her without saying anything is good, because she wants to know I enjoy being with her. 

Trying new things, like Moroccan restaurants, can be good if planned in advance. Many people like to use restaurants as ways to explore other cultures. 

Some people can actually stand to watch others nonchalantly saunter across the street against the lightand still not even be tempted to honk at them! 

She wants to know how she looks—even when she already knows the answer she wants to hear!

It's actually possible to converse about emotional topics in real time, not just by exchanging emails! 

If a top executive is visiting the office, you should not only clean off your desk but also have your best recent written work within easy reach, and extra chairs not only for the executive but also any guests of his/hers. 

One can relax without rocking back and forth or side to side! 

Emily carries her bags to the door in the morning, looks for her scarf and talks to me ... all at the same time. (When reading this, she said she didn't think it was much of an accomplishment!) 

No (inanimate) explosive force on Earth matches a woman to whom you have just used the phrase "women more attractive than you." 

It's possible to meet someone who behaves in totally unusual and at times off-putting ways, put in loads of hard work and patience to understand them and love them for who they are ... as she's shown me for many years so far.

“Looks like our McDonalds is getting a new sign,” I remarked to Pat as we passed the restaurant where we’ve lunched most Tuesdays for the last three years. 

I hadn’t had any calls from the school to report aggression or self-injurious behaviors that week—always a plus. The pollen count was down and the weather was mild—both factors we have learned that can influence her moods. 

I hope I had a “Happy Madison” in store for this week’s visit. 

I waited in the van while Pat went into the school. A few years ago, Madison moved from a ten-month residential program to a twelve-month offering that addressed her educational regressions. At the new school, our weekly lunch dates worked well, giving her family time while keeping her progressing educationally in a consistent structured environment.

Madison’s smile said it all as she skipped through the front door with her one-on-one, Ms. L. 

“She’s happy today, “Ms. L reported. We buckled up and enjoyed Madison’s serenade as we returned to our lunch spot. 

Pat slowed down as we neared the restaurant’s entrance. “Oh, my,” she exclaimed. “It’s closed!” 

There was a collective cringe in the car. Pat, Ms. L., and I knew such a major change in Madison’s routine could be disastrous. Her favorite phrase, “Schedule, please,” was about to be radically altered. 

Madison, still singing, seemed oblivious. I spied a Taco Bell/ Kentucky Fried Chicken combo restaurant across the street. 

“She’s had some kind of chicken nuggets from there, right?” I asked Pat. 

“Yes,” she replied. “We drove through on the way to camp last year. She loved them.” 

“Madison, let’s go to Taco Bell,” I improvised. “Get nuggets.” 

She looked at me and grinned as if a fairy had whispered something in her ear, a look I love and wish I knew how to produce on that now angelic face. 

“Nuggets at Taco Bell, please,” she replied as her grin grew wider. 

Close enough, I thought, realizing we would have to order from both restaurants for one meal. 

“Okay, ladies,” I muttered to my crew. “Prepare for an adventure!” 

We exited the van, ordered, and sat down to a combo lunch of KFC’s nuggets, fries, and taco salads. 

Madison picked at her nuggets and kept eyeing Ms. L’s taco salad. 

In her younger days, Madison would only eat brown food—graham crackers, peanut butter, fig newtons, nuggets, nutri-grain bars, and cereals. She eventually expanded her diet to include other meats and fruits, but still was not much of a veggie eater and was quite decisive in her preferences. She would politely try a new food when asked, but then promptly spit it out or even gag if she didn’t like it. 

“Take a bite of nugget, Madison,” I prompted her. She took the smallest bite possible and then suddenly reached across the table and broke off a piece of Ms. L’s taco salad shell. 

“Well, it’s brown,” Pat remarked, thinking that Madison was after the crispy shell. 

Then Madison reached for the lettuce. Ms. L took a fork and layered lettuce, cheese, and meat on it. Unbelievably, Madison took the fork and ate the whole bite. 

Soon, she was stabbing away with her own fork at Ms. L’s salad, stunning the three of us as we watched this young lady, so controlled and comforted by structured routines, try something new. 

We wondered where she learned to like taco salads. 

Then we had the most startling thought of all—maybe she hadn’t learned it. Maybe she challenged herself to learn something new, a thought so foreign to us, especially given her age. It was a soul-shocking, almost spiritual experience. 

Madison enjoyed trying something new—with no prompts or rewards. 

Now our Tuesdays have a new routine. 

“Madison, do you want Taco Bell or McDonald’s?” I ask each time. 

“Taco Bell, please,” she most often replies. 

She loves Mexican food. 

Who knew!

I’d like to share something I’ve not been able to get out of my mind this week. It’s from the Sibling Support Project, from a page entitled, "What Siblings Would Like Parents and Service Providers to Know":

 “…some typically-developing brothers and sisters react to their siblings' disability by setting unrealistically high expectations for themselves—and some feel that they must somehow compensate for their siblings' special needs.”

These particular lines struck me, and I had to stop reading. I sat back, feeling a sense of rueful recognition. When I read something like that, it’s as though a light turns on in a dark room of my subconscious, and I stand there saying, “Oh. Oh. I see.”

I’ve written before about this issue of compensation, of deserving, about how it relates to my brother:

“Every time I have wanted to let myself ‘shine’ in a new way, I’ve faced this haunting fear. That fear speaks to me in (barely-audible) words: ‘If you do [x, y or z], you’ll put even more distance between who you are and who your brother is. You’ll be abandoning him. You won’t be able to connect. And if you do manage to take a leap, I’ll make every step fraught with guilt, so deep-down you can’t identify it or shake it.’”

Once we as parents, caregivers or siblings have acknowledged a tendency toward perfectionism (e.g., always needing to be in control, constantly apologizing for things that aren’t our fault), we have to ask ourselves: What am I using these behaviors to hide from?

At the deepest level, the burdensome expectations aren’t about compensation. They’re about avoidance. If I trap myself into trying to please everyone … if I set unrealistic goals and take on false identities … I’m actually avoiding myself.

And I believe that the reason we do this—the reason that we avoid our true selves—is the fear that, in becoming our true selves, we’ll somehow distance ourselves irrevocably from our sibling, from the person we love. We fear that coming into ourselves may somehow ruin our connection.

It’s difficult to admit, but this fear has held me back and taken me prisoner. But the beautiful, freeing thing is this: It isn’t true.

What’s true is how I feel when I watch my brother play the piano, and how proud I am when he makes music. What’s true is that, just as I celebrate his accomplishments and victories, he, in his own subtle way, celebrates mine. Because I’m his sister, and he loves me.

I remember the first time my brother came to visit me at the home where I was living and working as a direct-care assistant for adults with intellectual disabilities. It was a summer evening, and all of my housemates were gathered at the supper table to welcome my family.

Prior to my family’s arrival, I’d imagined all kinds of potentially difficult scenarios. Instead, I got this: Willie sitting peacefully, enjoying the meal. One of my housemates held his hand for most of the meal, and he’d typically be averse to that kind of prolonged physical touch.

It was such a strange, wonderful supper. And, though I couldn’t have articulated it at the time, the happiness I felt at seeing my two families together helped me to be free, to see past the lies.

Instead of living from a place of compensation, I’m choosing to live from a place of interconnection. How does that work? It starts with the realization that becoming myself and loving my brother are inextricably linked.

If Willie and I had not been siblings, I probably would never have chosen to live and work with adults with disabilities. And if I hadn’t come to love others with intellectual disabilities, I might not have learned to celebrate Willie just as he is.

My path has led me away from Willie, and my path has led me back to him. And not a single step has been wasted. In walking this road, I’ve come to see that our journeys are twined. And for that, today, I give thanks. 

John Scalzi wrote a long list of things of what it means to be poor. That was six years ago and it's still one of the most popular things he's ever written.

Hopefully now people who never thought much about poverty have an idea what it's like. Maybe I can give you an idea what it's like to be an Aspie. Of course, different parts of this will apply more to different Aspies.

Being an Aspie is people not telling you what's going on—but still expecting you to know.

Being an Aspie is everybody saying to you: “How can you be so smart and yet so dumb?”

Being an Aspie is people blowing up at you and refusing to even listen to your side of the story—and you're the first person they've blown up at, so obviously it's your fault.

Being an Aspie is the first time you find out about a problem being someone blowing up at you—either themselves, or complaining to the boss who then blows up at you. 

Being an Aspie is then getting told they didn't tell you about it before … because they didn't want to hurt your feelings. 

Being an Aspie is being cut no slack—after all, if you can discuss the fine points of Soviet military doctrine, 19th century railroad history, or modern art you must be smart enough to know better in general. Therefore, you must have pissed them off on purpose. (Especially teachers and others who don't like anyone disagreeing with them or knowing anything they didn't know.) 

Being an Aspie is cringing at terms like “drop it,” “common sense” and “obvious”. 

Being an Aspie is perpetual frustration when you ask a simple question of fact and get a complex story. And when you just ask a few simple follow-up questions like “Look, is class being held today—yes or no?” the other person gets upset. 

Being an Aspie is having your best laid plans blown to smithereens because someone feels like leaving a half hour earlier or later, or going to the museum before walking through the park instead of afterward.

Being an Aspie is only being able to wear a few shirts or pants without living in agony ... and family members being hurt when you don't wear their gifts.

Being an Aspie is having to navigate your day without touching metal, or paper, or even water, if those things are what set your nerves to screeching.

Being an Aspie is tiptoeing through a minefield every time you interact with people.

Being an Aspie is going through middle and high school, maybe even college and beyond, without a date or even an actual friend. 

Being an Aspie is thinking you have friends when all you have are people who say hi to you and don't spit at you. Maybe they also exploit you for money ... or other things.

Being an Aspie is an Ivy League education and maybe more ... yet the only jobs you get involve phones, food and/or service counters. 

Being an Aspie is continual frustration at how vague people are and how much they expect you to read their minds. 

Being an Aspie is simply declining someone's kind offer and having them get mad at you for insulting them.

Being an Aspie is loading up on all the facts you can research, because when it comes to feelings you're a fish out of water. Facts are all you have.

Being an Aspie is being afraid to show any kind of insight into someone's feelings, because if in the future you don't understand ... they may not believe you.

Being an Aspie is knowing that you don't escape these issues simply by socializing with other Aspies. 

Being an Aspie is wondering if you'll ever enjoy the friendships, love lives and jobs that everyone else takes for granted.

Being an Aspie means all that stuff about acceptance and diversity doesn't apply to you—if you just say what's on your mind or do or say something else that somebody finds uncomfortable, they get to complain about you and you're the intolerant one. 

Being an Aspie is wanting to change places with a terminally ill kid—because at least everyone likes him.

Being an Aspie is your parents wondering what will happen to you when they are gone.

Being an Aspie is looking back after all these years and finally getting a clue how annoying you were—and how far you still need to go.

In my previous column, I mentioned that I do not drive because I do not trust my hand-eye coordination. Even though I am old enough to try to obtain a driver’s license, my fear of my lack of skills prevents me from attempting to do so. My decision has affected my life in negative and positive ways, some of which I have never really thought about until now.

As I stated above, one of the primary reasons I have chosen not to drive is because I do not trust my own hand-eye coordination. For all of my life, I have had issues with learning to control my fine motor skills, and they still affect my daily routine. I need to be careful about the way I carry bags and heavy packages up and down stairs so I do not spill anything. Eating a meal becomes a delicate exercise in slowly moving the food from my plate to my mouth, because I am almost certain to drop it on the floor. If I were to begin driving, I am certain that I would be swerving all over the road because I would not be able to maintain firm control of the steering wheel.

Another reason I have decided not to drive at the present time is because I have problems taking in everything around me and staying focused on the road all at the same time. On a recent family trip, I conducted an experiment to see if I would be able to view the road through a driver’s eyes. My mother told me that a good driver is able to take in everything they see all while keeping their eyes on the road. I do not possess this skill; instead, I tend to focus on one particular area, shifting my attention from one object to another. I need to work on shifting my focus in order to learn how to take everything in at one time.

Assuming the driver’s position in the car would also deprive me from maintaining my personal comfort zone in the backseat. Ever since I was a young boy, I have felt most comfortable in the backseat of my family’s cars, and over time, I have developed certain traditions which make family trips and errands more bearable for me. I rarely go on a trip without taking a good book along with me to pass the time. I tend to alternate between reading the book and taking short naps while the soft hum of the car passing along the road lulls me into a calm bliss. I am afraid that if I start driving, I will begin to lose this comfort zone.

My not pursuing a driver’s license also affects my ability to be free to come and go as others my age do. Because I do not have the right to drive on my own yet, I depend on others to take me where I want to go. If I want to go to one of my favorite places such as the bookstore, I travel in the cars of people I trust who know how to drive; this position is often filled by my parents but can also include relatives and friends. This greatly restricts my movements, but I do not see this as a negative aspect at all. In fact, I accept it as a necessary limitation and think very little of it whenever I am out on an errand or trip. 

On a positive note, I do not have to endanger myself or others with my untested driving skills just yet. In addition to ensuring my personal safety, any passengers I have, and any other oncoming drivers, my choice also allows me to maintain my comfort zone in the backseat. 

I also do not want the added anxiety at this point in my life, and between writing columns and completing college, I feel that learning how to drive a car would add too many pressing concerns and take too much time out of my schedule.

I consider driving a car to be one of the most dangerous responsibilities of adulthood. I do believe that at some point on the road ahead, I will have to take up the challenge of driving a car, but right now, I want to spend a little more time at the rest stop.    

Recently, I was asked, “What was it like, growing up with your brother?” And I said the first thing that came to my mind: “Well, it was interesting. He ran away a lot.”

When I think of growing up with Willie, autism isn’t the first thing that comes to mind. Neither is the way he’d play "differently." How many kids watch film credits once, then dash to the computer and type out the series of names? And print out the pages and place them in sequential order?

I don’t think about these things first. Instead, I think of how much he loved to run.

Imagine: We’d be on a walk, with Willie leading the pack. We’d turn a corner and he’d be gone. We’d be sitting in the backyard, and then suddenly, he’d disappear. He was always so fast; he was so good at vanishing.

I remember sitting in the backseat of our car while my mom drove, on the lookout for Willie. Despite all my parents did to keep an eye on him, he’d slip away on a semi-regular basis.

Fortunately, we knew where he would go: to the park to chase the geese and play on the playground. Rarely did we have to call in reinforcements to help find him.

These were not particularly rebellious disappearances. On the contrary, Willie would usually have a look of glad, mischievous glee on his face when we found him. Perhaps he thought of it as a game of hide-and-seek. 

Me? I was a typical firstborn. When Willie ran away, I would feel jealous of the attention he received, embarrassed that we had to go hunting for him, and upset at his lack of remorse. How did he break the rules with such a carefree spirit? His runs seemed to me to be the footsteps of a stranger and I didn’t understand them.

Years later I realize: I was jealous of more than the attention. I was envious of the verve. I didn’t run away. I obeyed the rules. In short, I was the Jeanie to his Ferris.

I also realize: Willie wasn’t just running away, but running toward…whatever was out there. Running toward adventure and exploration. Running for no other reason than because running felt good.

As he grew older, he ran away less and less, but he would still walk out in front of us every chance he had.

As a child, I felt at times that I was competing with him. As a teenager, I was afraid of him. Now, I feel grateful, glad that I can have any relationship with him at all.

When you’ve been through that much doubt and discouragement with someone, you are attuned to their small victories. The piano lesson wherein they play beautifully. The peaceful night’s sleep.

I’ve come to appreciate that Willie’s desire to run ahead, to be first, is an integral part of him. As such, one of the ways in which he shows love comes when he allows others to be first.

For example, when Willie leads dinnertime prayer, I am astonished at what he says every time: “Thank you God for heaven and for prayers and for my sister Caroline and Jonathan in Washington DC…”

No one prompted Willie to do this. It’s simply how he expresses himself, a reflection of his heart. He may not always engage with me when I visit; he may not want to talk for long on the phone. But when he prays, I am clued in: he cares. 

It’s comforting to me that, amidst the many changes in our lives, one thing has not changed. Whenever my family walks together, he loves to take the lead. Though he needs our support, he remains a daring spirit, an adventurer, intrepid.

Last weekend, I met my family for supper as they were passing through town. As we walked, Willie shot out ahead of me, then returned to walk beside me (at my parent’s prompting, since I was giving directions).

“Go on, honey,” I said. “I’ll tell you where to go.”

As he dashed ahead, I thought how amazing it is that I’ve finally learned to love this about him. 

My brother, always blazing our trail.

Danish entrepreneur Thorkil Sonne—father of an Aspie—has set up a firm, Specialisterne, so that Aspies can have better work opportunities. At Specialisterne, Aspies test software, build computer programs, enter data and do other things that take advantage of Aspies' typical strengths.

Sonne's Specialist People Foundation uses the "Dandelion Model" to show how Aspies—while admittedly different in ways that upset some people—deserve to be accepted. Sonne points out in this summer's Autism Advocate magazine that while some people consider the dandelion just a weed to be exterminated, those who like dandelions can use them for salad, beer, wine, coffee and natural medicine.

So why not—to borrow a bit from Mao Tse Tung—let a hundred dandelions bloom? The Specialist People Foundation itself gives a clue—its logo is a single dandelion seed. Dandelions spread their seeds willy-nilly.

We can decide for ourselves that dandelions are good. But when we grow them outside without our neighbors' consent, we're deciding that for the neighbors too. Something people tend to frown upon.

Similarly, Aspie traits—like other human traits—often affect others. For example, if you have difficulty multitasking that could mean others sometimes have to wait until you've completed one task before they can even talk to you about another. If you need a workplace free of distractions that may mean getting your own office space while others have to share—and which they may not even be able to walk near. If you have difficulty in framing your responses politely enough that can mean your employer always has to have someone else work with clients. It may also mean that your co-workers have to do all the emotional work of softening your expressions for you as they listen to you. . .and may still remain a less cohesive team because the easy, natural give-and-take is gone.

The Dandelion Model gives us a solution. The requirements include clearly discussing what is needed. That can extend to negotiating mutually acceptable solutions—not just catering to the Aspie. For example, an Aspie who has difficulty multitasking can agree to check her email at regular points throughout the day, and colleagues can email her their requests. Someone who needs a minimum of distraction may go to an out-of-the-way room a few times a day to work—preferably with his boss and co-workers knowing the phone number there so they can call him if needed. An Aspie who has difficulty speaking tactfully can study books and even take coaching in interpersonal skills, while his workmates may be briefed that his direct expressions are not necessarily meant negatively and asked to tolerate his bluntness up to a point (and praising any especially tactful expressions of his may help too).

If the Aspie's boss and co-workers know that she is doing her bit to lighten the load on everyone, that really helps. On the road to accommodation, everything goes faster when it's a two-way street.

Last but not least, one kind of accommodation is careful career selection. Everyone—including Aspies—needs to take a good, hard look at one's own strengths and weaknesses. No job is for everybody, and nobody can do every job. For example, Aspies (and many NTs) who like to control situations may initially be attracted to teaching; they need to realize that effective teachers have to make their students want to learn, and in fact have to deal with all sorts of individual needs and personalities. That means making a special effort to understand each student, and that goes far beyond taking in the facts that they say in so many words. Aspies can learn to do these things—but those who for whatever reason haven't got what it takes need to pick a different career.