A Missed Inference

My 19-year-old son with Asperger's never ceases to be a source of amusement.

The other day as I headed to work, I noticed that my husband had taken out the kitchen trash earlier that morning. Since our garbage can did not have a new plastic bag inside of it, some garbage had piled up on the kitchen counter. As I hurried out the door I asked Stephen if he would bring a new garbage bag up from the garage.

When I arrived home later that day, I saw the pile of trash on the counter had grown while I was away. At first I thought that Stephen had simply forgotten my request, but then I saw a new plastic garbage bag carefully laid across the garbage can.

I immediately burst out laughing. My son, who thinks in concrete terms, did exactly what I asked him to do.

Hoping to turn this in to a teaching moment, I went to my son's room and asked him if he remembered what I asked him to do earlier that day. He replied that I asked him to bring up a garbage bag. I then said, "Steve....when you brought the garbage bag upstairs and saw trash piled up on the counter, was there any inference you could have made?"

As he started to think about my question, a slow grin spread across his face and he said, "There is now...."

Grasping the Obvious

Common sense can elude people with Aspergers Syndrome.

My 18-year-old son, Stephen, is very bright with a gifted memory, yet sometimes his inability to grasp the obvious is startling.

This morning Stephen was trying to purchase a game online for his Nintendo DS with a gift card he received for Christmas. After numerous attempts failed, he asked for my help.

As I sat down next to Stephen and his laptop, I noticed that the American Express gift card was still unopened in a cardboard sleeve.

"Uh, Steve.........you need to actually open the gift card before you can use it," I said.

The light bulb suddenly went on. "Oh!" he exclaimed in the familiar high-pitched tone I had heard many times before when my son had an epiphany about something innately understood by most of the population.

Stephen had been using the card number from the picture on the front of the cardboard sleeve. He confessed he thought it was unusual that the card number was 123456789.

Wow. There's really nothing else to say, but wow.

Commentary from Stephen

Parents are often blamed for the traumas suffered by their children. As a parent of a son with Asperger's Syndrome, not only I am exposed to the normal risks of parenting, but I also have the burden of  parenting a child with an exceptional memory. Time does nothing to assuage the intense memories of past traumas......something I was reminded of when I read an essay Stephen submitted for his college English class.      

The Hills are alight, with the fire of my rage

               No one likes the Nazis, right? Everyone always cheers for whoever is fighting them to win, right? However, what if you found yourself cheering for the Nazis - does that mean you’re a horrible person who agrees with their evil views? Maybe, or perhaps you just hate who they’re fighting more. This is how I felt when I watched The Sound Of Music.
                When I hear a reference to The Sound of Music, I always say, "I’ll never get those four hours of my life back.” For me, it was just a struggle to get through that poor excuse for a movie. In fact the only reason why I even sat through the whole thing was because it was Easter and my mom wanted to watch one of her favorite movies with the family…needless to say, I no longer trust her judgment in movies.
                As far as I could tell, the plot of the entire movie was ‘woman helps bring family closer together,’ which evolved into ‘woman flees Nazi with new family’. Other than that, I can’t find a single plot line that extends throughout the whole movie. When I first heard a mention of Nazis in the movie, I was thrilled.  "Yes! At last something that sounds entertaining," I thought to myself. But alas, I was disappointed; not even Nazis could salvage this worthless piece of cinema (if you can even call it that).
                In case you weren’t aware; The Sound Of Music is a musical…and I don’t like musicals. In fact, the only musical song I’ve heard that I can listen to, start to finish, without Prozac, would be "Gay Or European" from Legally Blond The Musical.  To explain just how bad The Sound Of Music is, THE FIRST LINE IN THE MOVIE IS A SONG! Also, many of the songs sound like nursery rhymes, which I grew out of at the age of three (Does "Doe a deer, a femal deer" ring any bells?). It would have been really interesting had the music been written by The All-American Rejects. Could you imagine if they sang Move Along instead of that “Climb every mountain, forge every stream” song? Let me just tell you it would be awesome
                Now for the Nazis; I swear the only reason I knew there were Nazis in this movie is because they told us. The way they acted, if the writers had just made something up instead of using Nazis (and didn’t change any line in it that didn’t mention Hitler) I would have never known that they were Nazis. One thing that seemed to be an attempt to ‘humanize’ them was to make one of the Nazis a love interest to one of the daughters of the..... would ‘male lead’ be accurate? Anyway, his character was introduced before the Nazis were, and he wormed his way into her heart as wel.  By the time the Nazi's were introduced in the movie, it wasn’t a case of ‘falling in love with the enemy’, but rather a case of ‘my beloved is evil now’. So after a lot of pointless scenes, the family decides to run away to Switzerland. To illustrate just how much I hated this movie, when the family was hiding in the Abbey, the Nazi boy mentioned earlier  was close to finding them…I actually cheered for him.  That’s right -  I cheered for the bad guy, something I have never done before. Unfortunately the family got away and lived happily ever after.
                For me, the entire movie was a giant waste of time. In fact, this movie is now my justification to not watch musicals. I found the plot boring, the characters forgettable, the music awful, and I cheered for the bad guys. If you still can’t see why I despise this horrid piece of rot, then I just wasted my time, because you never will understand.

Asperger's and Being "Bad"

My son has always been different than his peers. In a world where conformity is often desired, I am grateful for many of my son's unique qualities.

I won't pretend that I have never longed for Stephen to be "normal". I remember when Stephen was in second grade and I saw one of the popular, athletic boys gracefully jog down the school hallway. Tears welled up in my eyes and I silently grieved for my son who would never be popular, athletic or graceful. The tears followed me years later when Stephen went to junior high and he had no desire to participate in social groups, joining teams and participating in clubs. In high school, when Stephen's peers were getting drivers' licenses, going to dances and hanging out with friends on weekends, it pained me that my son was missing so many teenaged rites of passage.

While I have occasionally mourned various aspects of Stephen's Asperger's, there are many more times I have celebrated his unusual traits.

I was recently reminded of how fortunate I am to have a son like Stephen. As I was discussing Stephen with an acquaintance, she asked whether I thought Stephen was accountable when he did something bad.

The question perplexed me - not because I wrestled with his level of accountability, but because I couldn't think of any example of Stephen doing something bad.

"Bad" implies a forethought or intent to do something wrong. Stephen may do or say things that are inappropriate or that appear insenstive, but his heart is pure. I saw many examples of Stephen's wonderful heart through the years, but until this conversation, I had viewed them more as anecodotal rather than broader evidence of my son's unadulterated heart.

One example of this evidence was a bizarre conversation I had with my son about five years ago after his younger brother had received several nice birthday gifts. When I stopped by Stephen's room to see how he was faring, it soon became apparent that he was oblivious that Hayden's cache of presents should be a source of discontent for him. He was incredulous when I explained the emotion of jealousy to him.

Stephen will never be normal. My son is not encumbered with the darker emotions of human nature that most people struggle a lifetime to overcome, such as malice, jealousy, guile, selfishness and greed. And for that, this mother is grateful.

The Power of Pizza

Pizza is a panacea for my 18-year-old son with Asperger's Syndrome.

For more than a decade our family has ordered pizza on Friday night. A medium Dominos pepperoni pizza on hand-tossed crust provides "a semblance of balance and control in my life," according to Stephen. When our ritual is unexpectedly altered, it's a crushing blow for my son who depends on consistency.

About a year ago we had a severe storm that knocked out power to half the city on a Friday night. When I explained to Stephen that Dominos did not have electricity and couldn't make pizza, the disappointment was overwhelming. Despite my promise to order pizza the following night, Stephen was too depressed to face the evening and went to bed at 6 pm.

It concerns me that missing an occasional pizza night can send Stephen into a tail spin. On the other hand, the joy in his face every time he sits on the couch and opens the box holding his precious pizza is priceless.

Priorities

Some things are very important to my son and he won't let the details get in the way.

Food is one of those priorities.

Stephen is enrolled as a full time student at DeVry University - the place where his stepfather, Gianni, is employed. Yesterday Stephen approached my husband on campus to ask him about the plan for lunch. He said he had looked for Gianni earlier that day and couldn't find him.

Gianni told Stephen he left campus to take me to the emergency room, where I was diagnosed with a broken foot.

A typical response from a child that just learned his mother was injured would be to inquire about how the accident occurred and how his mother was feeling. But my son has never been typical.

Instead, Stephen replied, "So does that mean we're skipping lunch?"

Living on Life's Perimeter

Being alone isn't necessarily a lonely place....especially for a person with Asperger's Syndrome.

When my son was in elementary school, I stood outside the school fence during recess so I could silently observe Stephen's interaction with his peers. I scanned the playground looking for my peculiar son among groups of boistrous children enjoying the brisk fall afternoon weather. I knew better than to look for Stephen on the basketball court or with kids playing games of skill or coordination. I searched the swings and slide, hoping he might be playing with someone there, yet I couldn't see my husky, blond haired boy.

Then I noticed a small figure walking alone on the perimeter of the playgound.


Stephen, 18 months, enjoying solitude on the playground.

Even from a distance, Stephen's unusual gait was unmistakable: he stared at the ground, walked on his toes and made strange gestures with his hands, as he was immersed in his own world. My eyes welled up with tears and I watched the stark contrast of my son's solitary figure juxtaposed with his peers who enthusiatically participated in normal playground activites. I couldn't bear to watch for long - my heart ached for a son I couldn't force into children's social circles.
         
When Stephen arrived home later that day, I took him into my arms and hugged him tightly, wishing that somehow I could protect him from the pain of being rejected on the playground. I desperately wanted to find a way to include my son during recess so he wouldn't have to wander around by himself. When I asked him why he didn't play with anyone on the playground, Stephen's response startled me: without a hint of dismay or regret, my son told me that he preferred to be alone at recess.

I was incredulous that Stephen's solitary walk was a self-imposed reverie from the school day. When I pressed him further he explained that he needed to be alone so he could think. As I tried to make sense of why any child would prefer to be alone during recess, I recalled reading an essay describing the unique challenges kids with Aspergers face during the school day. Asperger's expert Tony Atwood wrote:

"As with their classroom peers, a child with an Autistic Spectrum Disorder has to learn the traditional educational curriculum but they encounter additional learning experiences and sources of stress than do other children in their class. They have an additional curriculum, namely the social curriculum. They have to use their intellectual reasoning to determine the social rules of the classroom and the playground. Other children do not have to consciously learn social integration skills but these children have to decipher the social cues and codes and cognitively determine what to do and say in social situations. Often their primary feedback is criticism for an error with little recognition from others when they make the correct response. Learning only from your mistakes is not the most efficient way to learn. Thus these children have to concentrate on an extra curriculum that leaves them intellectually and emotionally exhausted at the end of the school day. They also have difficulty reading and responding to the emotional signals of the teacher and other children, coping with the complex socializing, noise and chaos of the playground or lunch room, the unexpected changes in the school routine and the intense sensory experiences of a noisy classroom. Throughout the school day they rarely have an opportunity to relax."

Stephen method of coping with his stressful school day was to escape during recess. Although it still saddened me as a mother, his need for solitude was understandable when I considered Tony Atwood's description of the complex issues Asperger's kids face at school.

I learned an important lesson about my son that day: I cannot view Stephen's life through the filter of my emotions, my wants or my needs. My son has been wired differently from birth and I must climb inside his head to understand what will make him happy and successful  in life.

At times I worry about a child who prefers to be alone in his room and has little need for human contact. My son joins us for dinner and other family activities, but he does so only out of obligation and not the desire to spend time with us. I wonder about the quality of my son's life when he moves into his own apartment - something he wants when he graduates from college and gets a job ("I don't want to be a weird 30-year-old guy living in my mom's basement", he has often told me). Will Stephen develop friends and want to socialize with them? Will he ever want to have a romantic relationship? Will he maintain relationships with family members when he no longer lives under the same roof? Or will Stephen retreat further into his Aspergers world, prefering the simplicity of solitude rather than the stress of navigating complex social situations?

When I begin to worry about my son's path, I revisit the lesson I learned from watching Stephen on the playground and remind myself that his happiness may be found on life's perimeter.

Empathy and Asperger's

Empathy is one quality thought to be absent in people with Asperger's Syndrome. Difficulty reading social situations and brutal honesty contribute to the perception that people with Aspergers are insensitive or lack empathy. As the mother of a child with Asperger's, I am frequently reminded of how mistaken those labels are.

Last Thursday was a difficult day and I fought back tears as I prepared dinner for my family. When Stephen came into the kitchen he noticed I was upset and offered to give me a hug. He said reassuringly, "I'm here for you, Mom. Whenever you need me, I'm here for you." My son periodically checked on me throughout the evening to see if I needed another hug. The following morning I discovered he had cleaned the kitchen without being asked - another demonstration of his support during a difficult time.

I have seen many examples of empathy throughout Stephen's life. When my son was three years old, I received news that my mom had been diagnosed with cancer. After hanging up the phone, I sobbed, feeling for the first time the reality of my mother's mortality. My sweet little boy stopped playing with his trains and came over to me, saying, "Don't cry, Mommy. I'll be your friend." Stephen was too young to understand the reason for my tears, yet he clearly showed the desire to comfort me when I was in pain.

Although it isn't unusual for a child to show concern for a parent or sibling, my son also consistently shows a surprising capacity to empathize with complete strangers.

One such incident occurred when Stephen was five years old and he and his younger brother accompanied me to the bank to discuss a matter regarding my account. While my boys played in the lobby, I was shown to the office of a woman whose body was terribly disfigured. The woman did not have any arms and her small deformed hands protruded from her shoulders. I was relieved the boys were preoccupied in the lobby, because I was certain if Stephen saw this woman, she would be the victim of his innocent, yet brutally blunt comments.

The office was behind a glass wall and I nervously kept an eye on Stephen, hoping he wouldn’t notice the woman's deformities and come in to have a closer look. Unfortunately he did notice and entered the office as I held my breath, waiting for the impending disaster to unfold.

“So……,” he began nonchalantly, “I think you look pretty good with those short arms.” I shrank in my seat. The woman, who was noticeably surprised, thanked him for his unusual comment.

I waited for my son to say something completely inappropriate and embarrass me further, when things took a very unexpected turn. He tenderly asked the woman if kids made fun of her at school. When she replied that they did, Stephen's little face clouded over and he said sadly, “Well, I know just how you feel. Kids on the bus make fun of me, too.”

Stephen, 5, waiting for the bus.

Both the woman and I were touched by Stephen's ability to empathize despite his young age. At the time this incident occurred, I was not aware of my son's Asperger's diagnosis and did not fully appreciate the significance of his compassion.

As Stephen has grown I have witnessed countless examples of Stephen's sensitivity to others' feelings. My son's capacity to empathize, despite his Asperger's diagnosis, poignantly illustrates how Asperger's and empathy can coexist.

"Larry Chocolate Licorice"

My son has always had an unusual attachment to inanimate objects, something that is not uncommon for a person with Asperger's Syndrome. Through the years his obsessions have included metal Thomas the Tank engine trains, a Jay Jay the Jet Plane stuffed toy, a purple Game Boy Color, an iPod and his laptop computer.

I have a special place in my heart for objects that have brought Stephen such great joy. My favorite attachment of Stephen's was something called, "Larry Chocolate Licorice."

Once we were riding in the car and I handed a half-eaten package of chocolate licorice to my 4-year-old son in the back seat. After eating a few pieces, Stephen proudly announced that he found one piece of licorice that was different than the rest and he decided to call it, “Larry".

Stephen and the six-inch long piece of licorice were inseparable. He carried "Larry" around during the day and slept with him clutched tightly in his hand at night. After several days the licorice became a sticky mess. I tried to exchange it for a fresh piece of licorice, but Stephen wouldn't hear of it: "Larry" was special and he refused to have him replaced. I attempted to prolong "Larry's" longevity by rinsing him off and putting him in the freezer for a few minutes.

About a week after "Larry" became a fixture in our family, I heard a painful howl come from my son's room. I raced upstairs to find Stephen in a heap on the floor, too despondent to communicate with me.

After several minutes of trying to comfort him, my son finally told me through his tears that Larry was gone forever. “I ate the best friend I ever had,” he wailed. I tried to soothe Stephen by telling him we could buy more licorice, but my little boy was inconsolable.

"Larry Chocolate Licorice" was never replaced. Although I still love to eat chocolate licorice, I do feel a little guilty each time I indulge.

UPDATE: Stephen admitted he got a little emotional when he read this post about his old friend, "Larry Chocolate Licorice". I think I might get him a Pet Rock .....it certainly would have a better survivability rate.

Bullying

A bulls eye was permanently tattooed on my son's forehead at birth.

Although the diagnosis for Asperger's Syndrome wouldn't come for six years, Stephen's brain was already wired to be different before he was placed in my arms. In a world where conformity is vital to acceptance, my newborn son was beginning a journey where his unique traits would often make him a target.

When Stephen was in elementary school, he began to attract the attention of bullies. I worried constantly about the cruelty and unkindness directed at my blond-haired boy and my heart ached each time Stephen was victimized by other children. My quirky son with an exuberant personality and a sharp intellect was so naive, he couldn't read subversive motives of others and was easily manipulated. His reactions were extreme, giving the bullies immediate gratification at the emotional expense and dignity of my son. I waged a fierce campaign for years to protect my little boy from the world outside our home.

Now that Stephen has graduated from high school, he is still not free from bullies. Instead of being targeted in the hallways at school, Stephen has to contend with bullies within the walls of his home. A place that was once a haven for my son, is an unfriendly environment at times.
 

Stephen as Pikachu, Halloween 1999

Late one night I heard peals of laughter coming from Stephen's room and I knew he had found something amusing on the Internet.  When he continued to giggle uncontrollably, I poked my head in his room to see what he found so comical. Stephen could barely catch his breath from laughing, but he finally composed himself enough to tell me that he found a hysterical parody of Pikachu on YouTube.

Pikachu was a small yellow Pokemon character that gave Stephen hundreds of hours of entertainment when he was younger. I still have a soft spot for things my boys loved while growing up. As I stood in my son's doorway looking at the delight on his face, I smiled to think that my teen aged son could still be amused by an innocent cartoon character while many of his peers sought drugs, alcohol and sex for their entertainment.

Unfortunately, the rest of the family didn't share my feelings and Stephen's innocent amusement became a source of ridicule in his own home. It wasn't unusual for family members to be intolerant of Stephen's interests and odd behaviors and I often must intervene on Stephen's behalf. If our family cannot provide a nurturing haven for Stephen, how can I expect society to accept his unusual qualities?

Stephen possesses many unique traits that should be admired and appreciated rather than ridiculed. I may not be able to eliminate all the bullying Stephen will face in a world that is often unkind to those who are different, but I refuse to tolerate it in the one place he should feel loved and secure. 

Discarding a Blueprint

There are no guarantees when a person embarks on the journey of parenthood that their child's future will be anything like the parent had envisioned. Parents make many choices during a child's tender years that will significantly influence how the child develops emotionally, physically, psychologically and spiritually. As a teen, the child begins to make his or her own decisions that greatly impact the life road that child travels. Although there are many uncertainties in life, most parents have a general blueprint of how they see their child's life progressing.

I have no blueprint for my son, Stephen.

As the mother of a child with a disability, one of the most challenging problems I face is knowing what is realistic to expect from my child. Stephen is perfectly content to live in his Asperger's world devoid of any human contact. I often struggle with the dilemma of when do I leave him in his world and when do I force him into mine? I don't want to handicap my son further by never pushing him out of his comfort zone, yet I also know he needs a refuge from social interactions that exhaust him both mentally and emotionally. When do I defy Aspergers and when do I accept it? I never feel comfortable with the decisions I make - always wondering if I'm limiting Stephen's potential or overestimating it.


Stephen, 13, in his own world at the mall

When you have a child with a disability, the "normal" blueprint is discarded early in life. I learned long ago that Stephen had no interest or talent for playing organized sports. He was never invited for play dates at other children's houses. The only birthday parties he attended were for his younger brother. When I overheard mothers talking about after school or summer plans their children had together, I was painfully reminded that my son was very different than his peers.

I was elated when my son declared in junior high that he was going to college. I knew how much Stephen disliked school and I had worried for years that he would never buy into the idea of continuing his education when it was optional. With his goal of attending college, I saw a future for him that mirrored many of his peers. I finally thought I could see a faint outline of a blueprint for Stephen's life.

That line begun to fade about a month ago. I was talking to a friend about Stephen's plans of graduating from college, moving into his own apartment and getting a job. This friend, who also has a son with Asperger's, challenged me on whether Stephen would be able to live independently and have a career. I was surprised by her skepticism because Stephen was so good about the routine of going to high school and functioning relatively well in that environment. She pointed out that navigating a work environment is very different than attending high school where bullying is not permitted and there are adults to aid Stephen with his deficits.

That conversation shook my confidence that Stephen will be able to support himself when he graduates from college. The maternal longing for my child to live a somewhat "normal" life, led me to minimize Stephen's Asperger's traits that co-workers and bosses may not tolerate. If my son finds employment, will people appreciate his unique personality and abilities or will people prey on his vulnerabilities and make his workplace intolerable?

Having a disabled child never gets easier. As the child grows, so do the challenges that loom in the future. I wish I knew what the future held for my son, but the blueprint for Stephen's life can only be drawn by him.

Aspergers and the Bible

Just before my son’s 8^th birthday, Stephen announced he was atheist. This came as a shock to me since he grew up going to church every Sunday. I had always assumed when Stephen turned eight he would be baptized.

I tried to reason with my son, but he wouldn't budge. I resigned myself to the fact that I couldn't force my beliefs on him and I hoped at some point he would change his mind. Despite his religious views, my son dutifully continued to attend church with our family. I tried not to push too much with deep religious conversations, for fear of pushing him further away.

When Stephen was 14, I decided to cautiously broach the subject of religion to gauge whether his beliefs had evolved over time. I asked him simply if he believed in the Bible.

 

“Oh, sure,” he said brightly. “I believe everything in the Bible.......except the parts about God and Jesus.”

Stephen's Diagnosis

A month after my son started first grade, his teacher requested a meeting with me. That meeting redefined my life.

Stephen, 6

Ms. Thibodeaux began by telling me that she adored my son. She said he was probably the most intelligent, funny, tenderhearted child she had ever taught. Her face lit up when she talked about Stephen and I knew she grasped the special essence of my son. Then she continued.

“Mrs. Ellis, there is something atypical about Stephen. The other kids think he’s strange. I think you should have him evaluated by a professional.” As the words sunk in, she cautiously uttered what turned out to be a very prophetic statement: “I think we need to find out what makes Stephen tick.”

I always knew Stephen was different, but until that conversation, it had never occurred to me that Stephen was different in a clinical sense. I was grateful for Ms. Thibodeaux’s candor and I made an appointment at Ochsner Hospital in New Orleans.

A month later, a psychologist at Ochsner gave Stephen a battery of tests, the results confirming what we already knew about his intelligence: he was exceptionally bright with an IQ in the superior range. The testing also revealed odd behaviors,  such as a high level of emotionality, excitability and expansiveness. The psychologist said Stephen's behavior seemed to fit the profile of a child with severe ADHD, but there were a broader range of difficulties involving odd communication, peculiar behavior and a wide range of idiosyncratic ideas.

The doctor confessed that our son perplexed her and she was unsure of the diagnosis. Some of the possibilities she suggested horrified us; schizophrenia, bi-polar mood disorder, pervasive developmental disorder - none of them sounded good.

She told us about a portion of the test when she asked Stephen a question and he started running around the room chanting a strange language. I was heart broken to think that my son might have schizophrenia, picturing my son becoming engulfed into his crazy world as each year passed. She then looked at her notes and read the chants he uttered as he ran around the room. “Shoo be do, bap da bap, ba, ba, ba ba dow….” The image of my crazy son disappeared and I burst out laughing. That wasn’t bizarre chanting! He was singing a song from the soundtrack of Tarzan. The doctor referred us to the head of child psychiatry, Dr. Milton Anderson, for further diagnosis. In the meantime, I went home and started reading about all the possible disorders the doctor mentioned. There was plenty of information on the Internet and most of it looked frightening.

Two weeks later, we met with Dr. Anderson. Based on Stephen’s test results and the parent and teacher assessments he read, he was quite certain Stephen had something called Asperger's Syndrome, the highest functioning form of autism. I don’t remember much of what Dr. Anderson said that day, but I remember being surprised there was an actual diagnosis for Stephen. I knew my boy was unusual, but it was so strange that my son’s quirks had a clinical explanation.

When I arrived home after our meeting, I looked up Asperger's Syndrome on the Internet. The more I read, the more convinced I was that indeed, my son had AS. The diagnosis explained everything about him; his great memory, his large vocabulary, his peculiar voice characteristics, his difficulty with transitioning and change, his awkward gait, his intolerance of incorrect speech, his sensitivity to certain sounds, his lack of coordination, his meltdowns, his inability to relate to peers and his obsessive interest in certain subjects.

I immersed myself in my studies and discovered that Asperger's was fascinating. As I read, I got the sense that Stephen had a mild form of Asperger's, for which I was grateful. I read about the other end of the spectrum and felt fortunate for the gifts Stephen had. The thing that struck me about the AS is that I didn’t know where it stopped and where my son began. I wondered if my son’s AS could be cured, what would be left. I loved Stephen immensely and found such joy and humor in his personality that I made peace with his diagnosis very quickly. I was so grateful that we had a diagnosis that would help us understand our son better.

Stephen's father, Steve, took the news really hard. He was devastated that there was something “wrong” with his son and it pained him to think of the hardships his little boy would face as he grew older.

Stephen and his dad

No one at Stephen’s school was familiar with Asperger's, so I made it my mission to educate the teachers, paraprofessionals, the school psychologist and the nurse about Stephen’s disorder. I wanted them to understand how my child’s mind worked. The more I learned about Asperger's, the more logic I saw behind Stephen’s behaviors. I knew that understanding his mind would make life infinitely easier for my son.

Before Stephen’s diagnosis, I would get irritated with him for doing things that I came to realize made perfect sense in his world. Understanding the motivation and thought process behind his behaviors helped me respond in a more patient, constructive manner.

One night as we excused the boys from the dinner table, Steve instructed them to clear their “plates.” Stephen said matter-of-factly, “No, father, they aren’t plates, they are bowls.”

We had just been chastising Stephen for something he did during dinner and his dad was annoyed with Stephen’s apparent disrespect. “Stephen! Stop being argumentative!” he barked. Steve's sharp response startled our young son, and he quietly cleared his bowl and then went upstairs.

Stephen often corrected me on speech errors and it annoyed me as well. However, this time I remembered something I had just read about Asperger's, and it gave me new insight to the situation. I said to my husband, “ I just read that people with Asperger's are intolerant of incorrect speech. From Stephen’s perspective, YOU made a mistake. YOU called the bowl a plate. He was simply correcting your mistake.”

Steve was quiet as he mulled over what I said. I was surprised that my husband did not get defensive as he usually did, and I continued, “Imagine how confused Stephen was by your response. YOU are the one that was wrong, yet you got upset with him for stating the facts correctly.“ I could see in Steve’s eyes that he got it. He understood the situation from his son’s perspective. Stephen correcting us, as long as it was respectful, was never an issue after that.

In addition to making Stephen’s life easier at home, the Asperger's diagnosis also brought a complete new level of understanding and appreciation for him at school. Shortly after Stephen’s diagnosis, Ms. Thibodeaux told me about an incident that occurred when the kids had lined up to go to lunch. Stephen became very upset with the girl next to him, shoved her and yelled, “Get away from me! You shouldn’t be here!”

He was so distressed that Ms. Thibodeaux took Stephen out into the hallway to calm him down. She told him that he hurt the little girl’s feelings by behaving that way and that he should never push someone else. Stephen said he was sorry he hurt her, but he insisted that his classmate shouldn’t have been next to him, so he pushed her. The incident clearly still agitated him. Stephen’s callous outburst perplexed his teacher because he was usually so kind and tenderhearted. It suddenly dawned on Ms. Thibodeaux what the problem was: “Stephen, when we line up, we line up in alphabetical order. When the person next to you is absent, the order of the line changes,” she said.

The light bulb went on in Stephen’s head. "Oh....." he replied in his high-pitched voice as the situation suddenly made sense to him. The person who usually stood next to him was absent. Now he understood why the "wrong" person had been next to him in line. After the explanation by his teacher, the order of the line was never a problem again.

As the year progressed, Stephen’s classmates and the staff at his school seemed to delight in Stephen’s sense of humor and his uniqueness. One morning Ms. Thibodeaux noticed that someone had scribbled with crayon on the floor. She asked the kids about it, but no one confessed. Stephen became obsessed with the mystery. He called himself “Detective Stephen” and borrowed a magnifying glass from another teacher so he could search for clues. He was quite upset that someone had broken the rules and written on the floor and he was determined to find the culprit. The other children were greatly amused by Stephen’s hunt for the mysterious rule breaker.

In addition to Ms. Thibodeaux, other first grade teachers were also smitten by my son. They loved to playfully tease him because his reactions were so dramatic. Stephen was often sent on errands into other classrooms because he was so funny. He broke up the monotony of the school day for the teachers and Stephen loved being the center of attention.

Stephen’s relationship with Ms. Thibodeaux helped the school year to run smoothly, except when she was absent. Any substitute that took her place was a mortal enemy of Stephen’s. In his world, Ms. Thibodeaux was his teacher and this stranger shouldn’t be in the classroom. Despite my attempts to explain the concept of a substitute teacher, Stephen was unrelenting, and refused to go anywhere near the substitute, maintaining a five-foot boundary. After several days of this behavior, one of the first grade teachers took Stephen into her class whenever Ms. Thibodeaux was absent.

First grade was the best year of school for Stephen. Ms. Thibodeaux provided a safe, nurturing haven at school as we learned more about Aspergers Syndrome and how to work with some of Stephen's unusual traits. I felt a true partnership with his teacher in providing an atmosphere for Stephen to learn about our world as he exposed us to his fascinating Asperger's world.

My son's haven at school ended when we moved from Louisiana to Kansas. Sadly, Stephen's rock star status didn't follow him into second grade and school became a hostile place where he was exposed to mild indifference and a lack of understanding from teachers and cruelty from other children.

As I reflect back on Stephen's public school education, the most significant person in his life was Ms. Thibodeaux, the intuitive and gifted teacher who initiated the quest of finding out "what makes Stephen tick." 

Asperger's and Graduation

Stephen graduated from high school last week. My son would have preferred to skip the graduation ceremony, but he dutifully participated in the ceremony without complaint, because he knew it was important to me. It perplexed him that people made such a big deal about graduating from high school. The Prom, yearbooks, cap and gowns and graduation parties were the furthest things from Stephen's mind as his high school experience drew to a close.

First day of preschool for Stephen, age 2

         
Stephen started preschool when he was two years old to give him the opportunity to socialize with other children. I didn't know it then, but there was little the preschool could do to develop my son's social skills. A later diagnosis of Aspergers Syndrome would provide the key to understanding why appropriate actions and responses in social situations eluded a boy who was so bright.

It's amazing to look back at the tow-headed boy holding my hand on that first day of preschool and to recall our journey together through the past 13 years of school. Stephen received his diagnosis in first grade and the ensuing years in the public school system were extremely challenging for a socially compromised boy and his mother.

Most of the time I love the qualities that make Stephen different from other kids, but there are times I wish he was "normal." The evening of May 17, 2011 was one such occasion. During the weeks that preceded graduation, I looked for any spark of excitement about this rite of passage that most teens relish: there was none. I was frustrated with his apathy and a little resentful that I couldn't enjoy the graduation of my first child like other mothers.

As I watched the ceremony from the bleachers of the football field, I couldn't see Stephen, but I suspected my son was probably miserable. I hoped the excitement of other graduating seniors would be infectious and Stephen would internalize what a milestone this night was in his life.


Class of 2011

After returning home that night, I uploaded pictures from graduation, hoping to find some evidence of my son acting "normal" at his graduation. I enlarged one of the photos and saw something that touched my heart. As new graduates from the Class of 2011 were looking skyward, tossing their caps into the air and celebrating, I perceived a tiny figure standing in a sea of green gowns on the 30 yard line, looking at the ground and covering his ears with his hands.

That figure was my son.

Stephen was miserable at his graduation ceremony as his senses were assaulted by the chaos on the football field. I imagined how difficult it must have been for him maintain his composure on the field as people were screaming and bumping into him. While the photograph reminded me of how different Stephen was from his peers, it also was a powerful illustration of his willingness to endure an agonizing two hours to make me happy.

On a warm night in May while families gathered to honor the academic achievements of the Class of 2011, I realized that my son's presence on the football field represented a child honoring his mother.