Posted Thursday, March 14, 2013, at 4:13 PM
This question originally appeared on Quora.
Answer by Jean Marion, Mother:
"What if you get in a car crash and never come home again?” my son asked me as I was getting ready to go to the grocery store…
I knew as soon as I got in the car that he would come running out into the garage with that look of terror on his face and ask me the same obsessive question again. From the age of 3, every night at bedtime he was convinced that the sun would not rise in the morning. His fears of abandonment were heart breaking. How do you make a promise to a child that you are not sure you can keep?
We always knew he was different from other children, but it wasn't until his school performance was adversely affected that we sought professional help in determining the best course of action. There were so many signs along the way, but we were on a long road with many detours, and we had no way of knowing which signs were important, which personality traits meant ‘I am unique,’ and which meant ‘ I am in trouble.’
This is the story of a boy who was on a destructive path to nowhere. With schoolwork undone, friendships nonexistent, and prospects for the future dwindling year by year, something had to be done. The problem was that we had no clue what his problem was. We did not understand him, or understand why he was having difficulties. Things that come so naturally for other children were totally out of his grasp. We had no idea about what to do to help him.
As an infant, we took our cues from him, he let us know what was acceptable, what he could handle. He did not like to be held while nursing. He was very easily distracted and would pull away constantly if any eye contact were made while he was sucking on the bottle. We found that if we laid him alone with the bottle, facing away from us, he would down the whole thing in 15 minutes, and then we could hold him, burp him, cuddle him, and make eye contact. I didn't realize at the time that he was unable to process interacting with me and eating at the same time. He could do one or the other but not both.
Another oddity was that he didn't smile at all, or make many facial expressions. We tested this theory by putting ice on his skin. There was no reaction from him. He would not cry if he were wet, or cold, or uncomfortable. He was very docile, and one would assume he was content. He would sit there and give us ‘the eye.’ Which was his version of an intense stare. Our nickname for him was “Veggie” because he reminded us of a vegetable. We did not mean this in a negative way, we actually found his lack of response humorous, and we tried for months to find things that would make him respond. He finally cracked his first smile while listening to his music mobile. From that day on, we surrounded him with music and he would smile.
As each month passed and he missed certain milestones, we assumed he was on his own timetable. Although he was delayed with sitting and walking, the fact that he eventually learned each skill led us to accept him the way he was, and we never pushed for him to exceed his personal capabilities. He enjoyed playing with toys; his favorite thing was the TV Guide. Tearing it apart, page-by-page, each week. He was fascinated with the sound of ripping.
By the time he was 3, he had a vocabulary of 20 words or so, but he would only speak in single words, never two words together. “Uppy” to be picked up. “Chacha” for chocolate milk. “Car” to point out once again another car on the street. His favorite word to repeat over and over was “Squeaks.” To this day, we still don’t know what it meant. We were told that we should take him to a speech therapist, which we did. However, he was so terrified each time, he would cling to me, certain that if I left him there he would be abandoned or that something horrible would happen to him. So I stayed with him in the room and watched as he sat in a group of children. Each child responded to the group instruction during book reading time. He did not. Sometimes he would get up and wander off to explore the toys in the room. Other times he would sit there and stare off into space. The speech therapist was unable to help him, he would not speak to her, and it was obvious that he didn't have any problems with hearing or pronunciation when he did choose to speak.
His first two-word phrase when he was 3½ was a revelation. “Hot Pizza!” he exclaimed one night after the deliveryman came. We spoke often after that, and when he turned four, he learned to read and enjoyed reading books to us. We could tell that he was very intelligent. He could put complex jigsaw puzzles together, which he did often. He enjoyed building with various multi-piece toy sets. Most of his play was always singular. We started him in daycare to tried to introduce him to the other children, but he mainly ignored them. He had no interest in them or what they were doing unless they had a toy that he wanted.
It took a while to find a daycare that would accept a four-year-old child still in diapers. Potty training was a nightmare; he refused resolutely to have anything to do with it. After many different approaches, we finally decided to try the technique recommended by his daycare provider. We let him walk around naked. This was so that he would have no option but to use the bathroom once he realized that not doing so could be very messy.
The first day, 12 hours passed and still nothing happened. He was holding it and refused to go. This was pure will power on his part. It was obvious he was miserable, and my heart went out to him. Finally, I couldn't take it any longer, I marched him into the bathroom and placed him on the toilet. I told him he could get up as soon as he went. That’s when the screaming started. He called my name at the top of his lungs for 30 minutes straight. I stayed in the other room and prayed. My prayers were answered. There was silence, and then there was exhilaration. “Mommy! Mommy! I went potty!!!!” He was so excited. I was so thrilled for him and relieved. I needed to have him potty trained by the time he was five so that he could start school.
Within a week, he was running to the potty whenever he needed to go, although usually after holding it for over an hour, bouncing around, and finally giving in. It wasn't perfect, but I was grateful. That was until the first poop. He would prefer to hold it for a week or more until he absolutely could do so no longer. So now we had a new hurdle, but the timing was so far in between poops, that I couldn't have him go naked for weeks on end. When it was time to poop, he would go hide. He would squat behind his toy box, or in another room where no one was and do the deed in his underwear. This was extremely frustrating. It would happen so quick, it was usually too late for me to march him into the potty, and by then it was over and it would be another week before the next time when he would repeat his behavior. This continued for 10 more years. (This is not the case for many children with Asperger's, but it does happen sometimes.)
Usually I would drop him off at preschool, and he would run off to play not giving me a second glance. He felt safe there and didn't worry that I wasn't coming back. He enjoyed watching game shows on television, and when a contestant would win he would jump up and down flapping his hands in excitement. Sometimes at daycare though he was rather destructive. He would kick toys, and sometimes kick over block towers that other children had spent time making. He found this humorous and would giggle and jump up and down. He would run pencils along the wall as he walked, cut furniture fabric with scissors, and he seemed to have no conception of the value of things.
He was pretty excited about his first dentist visit. There were balloons and bears painted on the walls. The other kids got to pick out prizes and lollipops so it seemed like a cool place to be. That was until they took him alone into the back room. It wasn't long before he started screaming. I was completely mortified as the other parents were staring at me wondering why my child was acting like someone was sawing off a limb. He came out holding his balloon, eyes red and puffy. The doctor said that if they were to treat him again, he would need to be sedated. And so he was, each time we went. He still screamed in bloody fear, but at least it wasn't during the entire appointment.
Because of the dentist appointment, everything after that day changed. He was even more terrified to let me out of his sight. He would scream through a haircut, (I had to start cutting his hair at home). If he woke up in the middle of the night, he would come and sleep on the foot of our bed. (A night light solved that problem.) But some things couldn't be solved.
On the first day of kindergarten, he was the only child that cried. He clung to me. He was terrified. I should have known he wasn't emotionally ready to start school, but he was already reading and adding, I thought it would be wrong to hold him back a year. The teacher said to just leave and that he would be fine, so I did. I came back three hours later and peeked through the window. I could not find him in the classroom. I walked around the building and saw that he was alone in the play yard, crying and pulling on the doorknob to the classroom. Apparently when the bell rang and all the children went back to class, he didn't hear it or realize what was going on. I was livid with the teacher, and she was shocked that a student could be locked out like that. She wasn't used to dealing with someone like him. She was used to blowing a whistle and having all the kids come happily running into class to start working. She learned pretty quick that she had to make concessions for him.
It was obvious that first year that he did not fit in. He often looked bewildered. We refer to that look as his "deer in the headlights" look. His teacher would say to the class, “Boys on the right side, girls on the left side.” All the children would get up and move, but he would remain seated. He never realized that he was part of the group, or that there was something that he needed to do. He would not pay attention, and often his work remained on his desk undone. We would do his schoolwork together at home. This is what happened his first four years of school. He would not talk with the other children. During recess he would not play, preferring to stand off on the sidelines. He had trouble playing ball, doing hopscotch, anything involving gross motor skills, coordination, or strength. He walked funny. It was kind of a jaunty bouncy step with his hands waving like he was listening to music somewhere and going along with the beat. We found it endearing. The other children found it strange.
There were many teacher conferences over the years. Each year, it was recommended that he be held back. Each year, he was capable of doing the work, often getting A’s on his math and spelling. But he rarely did work in school, many times he would get up and wander around the room studying the maps on the walls, and he never paid attention to group instructions. I felt that holding him back would be pointless, since he would exhibit the same behavior in the next class, but especially since he would be bored repeating the same school work. Many of the teachers felt that he had attention deficit disorder, although it was obvious that although he wasn't paying attention or staying in his chair, he had no problem sticking with a task that held his interest, like a jigsaw puzzle or a good book.
I called our HMO to try and get him in to see a doctor about his possible ADD, but after a half hour phone call, the nurse suggested I pull him out of school and homeschool him, since he seemed to be doing so well with the personal instruction he was receiving at home and not doing well at school. I however, did not feel that this would be in his best interest. I felt it would be ignoring the problem, and I felt that if we just stuck with school long enough, he would eventually prevail. I was very angry at the HMO because they would not even agree to have him tested.
I learned not only how to home school him while he was not in school but how to prepare him for certain social situations. He was invited to be a ring bearer at a friend's wedding. I was terrified. How was he going to pull that one off? I spent months taking him to the church, sitting in the pews, getting him used to the atmosphere, letting him play on the church piano, and practicing walking down the aisle and standing up at the alter with the pillow while not moving. I bought him the tuxedo so that he could wear it often and get used to being in it. By the time the wedding came, he was as prepared as he could be. I didn't breath a deep breath until it was all over. Other than having the pillow hang from his hand he did wonderful. Stood still and smiled in all the pictures. Was completely adorable. I was so very proud of him that day.
It became apparent that most of the children in his class were much taller, bigger, and more mature. He had problems from the very beginning; he was picked on quite often and began to withdraw more during recess and lunch, staying to himself on the playground. He started throwing rocks at other children, hitting the playground teachers, and being sent to the principal’s office. He was suspended for this type of behavior, which didn't affect him in the slightest.
It became apparent by the end of the third grade, that continuing on to the fourth grade was not a good idea. He was incapable of being responsible for his homework, the more class work he skipped, the farther behind he got in class. He failed the state testing miserably, and it was finally decided by the teacher that he would have to repeat the third grade.
Although he was reading at a high school level, his reading comprehension was dismal. Mathematically he was advanced, but he refused to do the schoolwork. When informed he must do it, he knew he did not have to. After all, nothing bad happened in class when he did not. The fact that all the other children were doing it had no bearing on his consciousness. Missing out on recess, sitting alone out in the hallway, being sent to the principal’s office, and receiving citations did not faze him. I worked with him over the summer on his handwriting, which was close to illegible. He started in a new third grade class at a new school in a new state. It was a brand new start for him to get his act together and prove he could do it. Unfortunately, he couldn't do it on his own.
His new teacher called a conference. In attendance were the teacher, principal, school nurse, school counselor, and district psychiatrist. We all sat around a table and I wondered what was going to be said. Nothing like this ever happened back in California.
Each person in attendance started describing his or her association with him. What they had observed. One noted that he would be sitting in class and start staring off into space as if he were thinking about something very important. Sometimes these moments of inattention would last 15 minutes. During this time, he would not hear any class instructions or participate in any class discussions. At other times through out the day, he would not do his school work, it would sit on his desk undone while he would draw pictures or make a valentine for the teacher. He would sit on his teacher’s lap and hug and kiss him. Likewise, he would attempt to hug and kiss his classmates, both male and female. His classmates did not look upon this too kindly.
The teacher spoke of times when he was attempting to talk to the class and he would be constantly interrupted by him, so eager he was to tell him that he knows the capital of Kansas, or some other totally irrelevant fact. There were many instances when he did not return to class after recess, choosing instead to remain outside and play longer. Meandering back to class when the mood struck him. He was a loving, sweet, quiet, unassuming child, very shy and withdrawn. Each person around the table expressed their sadness that such a child was obviously having difficulties, and that there was no way he would advance to the fourth grade under the current conditions.
We finally took him to a private psychiatrist out of our own pocket and hoped and prayed that he would have an answer. The doctor tried to talk to him but he would not look the doctor in the eyes. This was normal for him. The doctor said repeatedly, “Look at me,” while he was talking to him. He would stare at him with his eyes wide open as if it was a real hardship to do so. As soon as he would start to respond he would look away, either staring at the ceiling, or giggling with his hands covering his mouth. At one point, he turned around in the chair so that he was sitting on his head. It became very apparent to me that he was embarrassed by the attention and unable to cope with it. I sighed.
The doctor asked us a series of questions.
“Does he have any unusual fears?”
I thought about all the "what if?" questions over the years. What if the earth hits the sun and explodes? What if lightning hits our car while we are driving? I remembered the times we went to the store and I turned around and he was gone. I wouldn't have to wait long before I could hear his screams all across the store. Convinced that I had abandoned him in the store he would stand in one spot screaming “Mommy!!!” the terror and tears plain on his face.
“Does he have any friends?”
We replied that he did not. When school kids would say “Hi,” he would usually act as if he hadn't even heard them and didn't know how to respond. Even after repeatedly prompting him to “Say hi back to them…” he would ignore them the next time again. He was not able to carry a conversation with his peers or share his toys. Yet he constantly lamented the fact that he didn't have any friends or that the other kids didn't like him.
“Is he able to be in a group of people and act appropriately?”
We thought about it and remembered the time in church when he was with a group of children that were preparing to sing. All the children were sitting quietly in the pews, while he was crawling under them and playing with the children’s feet, giggling uncontrollably. He was unaware of how disruptive he was during the service. One teacher had to sit near him and physically restrain him so that he would not get up and further disrupt the service. I was embarrassed and pulled him from the church classes immediately.
We also remembered the Boy Scout meeting where all the boys were huddled in a group on the floor intently listening to the fireman describe his job while he was hugging the boys and kissing them and not listening to the fireman. When the boys rebuffed his advances, he tried to get their attention by tickling them or pulling their clothes or hair. He had no concept about the idea of personal space or appropriate behavior.
Then there was the school field trip to the zoo. His demeanor was so abhorrent that the other children’s mothers had a terrible time handling him and he was banned from future field trips. He was incapable of staying with the group, following the directions of the chaperons, or behaving without laughing uncontrollably. He was so over-excited to be going on a trip to the zoo that he couldn't handle the experience.
“Is he very interested in certain things to the exclusion of other things?”
“Definitely, yes!” we responded. He can sit and play video games for 8 hours straight, not saying a word to anyone. When we try to pull him away from things, he obsesses about when he can return to play longer, over and over until we give in. He can work on jigsaw puzzles for hours, play the piano for hours, and watch his Star Wars videos for hours. Play the computer for days on end, just stopping long enough to grab a bite to eat or run to the bathroom at the last possible moment. Attempts on our part to draw him out and do other more social things were met with resistance or lackluster compliance with him asking every 5 minutes, “Can I go play Nintendo now?” “Can I go play Nintendo now?” “Can I go play Nintendo now?” "Can I go play Nintendo now?” “Can I go play Nintendo now?” “Can I go play Nintendo now?” We felt like we were torturing him by not letting him do what he wanted.
“Does he do any strange motions with his body?”
We nodded affirmatively. He likes to drum. His hands on the table, his pencil on his leg, toys against one another. Constantly banging something when he has nothing else better to do. Banging on the wall with his hands or feet. When talking, he waves his hands around gesturing wildly with his fingers to try to help him get out the right words he is trying to say, or he holds his finger in his mouth for an hour and talks with it there, making his words very hard to understand.
“Does he have any problem with gross motor skills?”
P.E. at school is very difficult for him, he still can not skip. He doesn't have the strength to move his arms on the rungs of the jungle gym. He looks funny when he runs. He seems very uncoordinated. Simple things like opening and closing the car door are overwhelming for him. It seems like the car door weighs a ton and he is unable to maneuver around it. It is so strange to have a child be able to type and play the piano yet unable to figure out how to use his muscles to open a box of cereal.
“Is he sensitive to loud sounds?”
Again, we nodded. When we take him to the movies, sometimes he screams and cries because the speakers are too loud. He will sit there and watch the entire movie with his hands covering his ears. It makes us feel guilty for subjecting him to that torment. He also cries uncontrollably when we go to see the fireworks. I asked him if he was afraid of them, but he responded that he was not, but that the loud boom of the mortars hurt his ears. He also claims that airplanes overhead hurt his ears, and loud music on the radio.
“Does he often repeat himself?”
“Repeatedly! sometimes he drives us nuts…” I will tell him that we are going to visit cousins at 4 pm. Between noon and the time we leave, he may ask at least a dozen times if it is time to go yet, even though he knows how to tell time and I have repeatedly told him that we aren't leaving until four.
“Is he able to follow a string of instructions?”
I shook my head. “No.” I can ask him to put a cup on the counter, bring me a fork and turn off the light on the way back. In his haste to do this, he will either get the fork but not the light, or vice versa or neither. The cup does make it on the counter though, most of the time.
“Does he often ignore people who are talking to him?”
I looked over and noticed that he was entranced with the world atlas lying on the desk. I said, “Honey, would you like some ice cream when we leave here?” There was no response. He turned the page. I said to the doctor, “Most of the time we have to call his name several times before he will even look at us, let alone hear what we have to say. He is like that with everyone. He is very preoccupied with his own interests.
“Does intelligence tend to run in your family?”
“Yes. His father is a computer programmer. His grandfather is an electrical engineer. On my side are two physicists and on the creative side, a painter and a pianist.”
“Does anyone in your family have a history of mental disorders?”
“Yes. My father has schizophrenia. My mother has bipolar disorder, and I have bipolar disorder. My father’s brother, father, and grandfather also are schizophrenic. The school doctor wasn't sure if he was displaying early signs of schizophrenia because of the way he stared off into space. But I haven’t seen any other signs of it. The doctor also mentioned autism, but he doesn't seem autistic, does he?” I asked.
“Actually, it sounds like he has Asperger Syndrome." the doctor said. "It is part of the autism spectrum of disorders. Get a book about Asperger’s and tell me if you think it fits him. We can talk more about it after you read the book” the doctor answered.
I found a lot of information on the Internet about it, and I read all the books I could find that were available back in 1998 until I felt I knew Asperger Syndrome as well as I knew my son. All at once, many strange things he did or said made sense. I could tell now upon watching him, that he was totally clueless when it came to reading other people’s minds. He had no idea what anyone else was thinking or feeling and could not respond to those signals appropriately. He could not tell when a schoolmate was put off by his behavior. He did not understand why they didn't like him.
I could see how he floated through the days in his own little universe of his own making. His interests in the planets and geology and the weather was telling of how hard he grasped to make sense of the world and his place in it. But as hard as he tried, he was also blatantly unaware at the same time.
He would sit and pull on his shirt so hard it would be completely misshapen by the time he got home from school. He would also have pencil marks all over his shirt, totally unaware that while he was playing with his pencil all day at school, it was marking up his shirt. Then there was the food. He refused to use napkins, so everything he ate that didn't make it inside of his mouth was smeared on the front of his shirt, his pants, or on his sleeves. Because he also refused to blow his nose when he had a cold, snot would end up everywhere too. He saw nothing wrong with this.
He would wake up in the middle of the night with terrible stomach pains, and cry relentlessly, and nothing we said or did helped. He was unable to articulate where the pain was, or what type of pain it was and he couldn't talk to me at all while it was happening. Afterwards, he would just shrug his shoulders as if nothing had happened.
Sometimes he wakes up with dreams that seem so real to him. He will bring them up later, sometimes even a year afterwards and talk about it as if it happened yesterday. He does that with real events also. We will be sitting watching television, and out of the blue he will say, ‘I am good at making ice cream.” I ask him what he is talking about and he seems upset that I don’t already know what he is referring to. He has no clue that I can’t read his mind. With much prodding and questioning I finally discover that he is referring to making ice cream like we did on the 4th of July, 4 years ago. As if it happened yesterday for him. I can tell he gets frustrated when I don’t know what he is trying to tell me.
Sometimes he asks a question and he words it in such away that I don’t know what he is asking. When I tell him to reword it, he is only able to repeat himself more loudly as if that will help me to understand. It is frustrating for both of us. He would call me stupid in a loud angry voice because I couldn't read his mind.
He often seems unaware of what is going on around him. He is just as likely to walk out into the middle of the street in front of a moving car while looking up to stare at the clouds overhead, commenting on whether they are cumulus or cirrus.
When I speak with him, I first have to get his attention. Then I have to keep it by demanding that he look me in the eyes. Then I give him an instruction and ask him to repeat it. Then I question him about the instruction making sure that he understands what I intended for him to do not just the literal meaning of what I said. We are most successful when all of these steps are followed during communication.
Many times he is filled with questions that he will ask. However, as often as not, he doesn't wait around to hear the answer if it is more involved than 3 or 4 sentences. By then his mind is on to something else and often the conversation will stop dead in the middle as he wanders off to explore something new.
He is very innocent and naïve. When talking about church, God, Jesus, and such things, he literally believes in heaven and hell and everything that he is told regarding the past. When watching movies such as “Hercules,” he believes in Hades and the pit of death. At the age of 11, he still believed in Santa Claus. He had no reason to question what he had been told. He is very vulnerable for this reason. If another child were to ask him to do something illegal, he would most likely not stop to think before doing it. Our morals are based upon our conception of right and wrong and compassion that we feel for others. He has trouble understanding the concept of morals because he can not feel what anyone else might be experiencing.
He has displayed many instances of bully type behavior. It is normal for him to walk up to another child, grab something out of their hands, ignore their protests, and be completely unaware of the anger he is inciting in the other child. When I explain how wrong it is to do this, his response is always very simple … "But I want it!" If the child fights back, as is often the case, then screaming, hollering, and hitting often ensue. His temper is quick to explode if things are not going his way as he has a very low tolerance for frustration.
Since he never acted that way as a young child, I believe that he is going through the normal stepping-stones of early childhood, just at a much-delayed rate. He is doing things in early adolescence that many children do from the age of 2 to 6 that he never did at the time. This seems highly inappropriate, but he must learn the same way his peers learned, it is just unfortunate that he is learning it all so late.
There are times when he acts very immature. He enjoys talking in baby talk and likes to crawl on the floor instead of walking. Sometimes he gets so excited he is rolling around, jumping off of the couch, laughing uncontrollably. This type of behavior was very embarrassing in a restaurant or store.
Although he is an expert at Nintendo and plays piano well, he does not have the coordination to tie his own shoelaces. When dressing himself, he often wears his clothes backwards or has his pant leg stuck in his sock without realizing it. Also his socks are likely to be worn with the heel facing up and he doesn't seem to notice the discomfort.
The psychiatrist started him on Zyprexa a new medication at the time mainly used in the treatment of schizophrenia but also used for other behavioral conditions. He started sleeping 12 hours or more every night and eating non-stop during the day. He gained 15 lbs the first year. He had always been very slight, thin, and frail, now he was starting to look more his age. Eventually, we switched him to Seroquel and the weight gain stopped and he wasn't so groggy all the time.
A month after starting on the medication, another meeting was called at the school. There were reports of massive changes on his front. He was talking with other children at recess. He was sitting down to do his schoolwork. He was participating in classroom discussions, holding up his hand for every question asked, even if he didn't know the answer. He stopped zoning out and staring into space. I mentioned changes at home as well. He practically stopped playing Nintendo completely, choosing instead to venture out into the neighborhood to meet new friends and learn to ride a bike. Our little boy was on the road to being more normal.
Six months later, he was able to pass the third grade. There were still problems of a social nature. He still wanted to sit on his teacher’s lap. He still wanted to hug his schoolmates. He would often cut in line and rudely demand popcorn even though he didn't have any money to buy some. He still had no way of knowing when someone was upset with him or why. But he was able to sit and do his schoolwork, and we worked on his social skills constantly. Always talking about why people say what they say, what their intentions are, and why they would need him to do certain things.
He started making friends around the neighborhood. He didn't realize that the 'friends' were only really interested in coming over to play video games. Once the video games started disappearing, I asked him about it. He said that he gave them away. You what!?!?!? Those are $60 each! He had no concept of the monetary value of possessions or the work involved in attaining them. We had to actually pay one of his friends to get the games back. Argh! He is no longer welcome at neighbor homes as he often knocks on their doors 4 times a day asking if so and so can play yet. There are a couple that continue to come over and play on the computer however. It is the only social contact outside of school that he has.
Middle school was difficult. High school was aggravating. Due to his IEP, the teachers would grade him only on finished work. He would not participate in group projects at all. Test taking was a nightmare. He would see five pages of bubbles to be filled in and become overwhelmed. "I can't do all of this!" So he would just fill in the bubbles without reading the questions just to get the test over with. Any assignment that he deemed as "too long' didn't get done. We had to split them up into smaller parts so that he doesn't get stressed out about it.
He wanted to be a writer and joined the writing club in high school, but it is very difficult to write fiction when you can only see the world through your own eyes. Each character was another version of him. He couldn't see that in a paragraph he had actually stated the same information by switching the words around. To him, there were more words on the page, so all was well.
In the ninth grade, a girl showed interest in him. He was cute and nominated for homecoming prince and there was no way for her to tell that he was different just by looking at him. After they spent the afternoon together riding bikes and hanging out at the park, I guess it was apparent to her how different he was. I found out a couple of weeks later that he was despondent because she wouldn't talk to him anymore. He kept that flame burning for seven years based upon just that one afternoon. He couldn't get it through his head that she was not interested. As he drove over to her home yet again, I felt so sorry for the family. Luckily her mother had experience with Asperger's and would sit and talk with him for hours when the girl wasn't there. He finally got over her when he saw her smoking one afternoon with her boyfriend. I was so relieved.
It would take him years and years to learn what comes to the rest of us naturally. But now that we know how he sees the world, and what he doesn't see, we are much closer to helping him reach his full potential. He needs unconditional love; complete acceptance of his peculiarities, and gentle guidance to help him understand the minds of the rest of us and be able to appreciate all that life has to offer him. He should not be expected to "know better" until he is taught what the rest of us "know."
He is now 24 and it has been a looooong hard road for him. He finally got his driver's license at age 19, although I worry when he is driving because of his inability to look to the left or right. He simply stares straight ahead. He is taking only one class per semester at university, which gives him something to do. When he deigns to come out of his room and interact with us, he speaks with his hands as much as his mouth. I tried getting him to put his hands in his pockets and talk to us, but he found this very difficult to get out his thoughts.
He lacks certain social skills to get past a normal interview and get even a simple job like McDonald's. He doesn't smile or make interested facial expressions. He speaks in a monotone voice and says OK or um repeatedly. He sits very stiff and motionless. Like a scared rabbit staring doom in the face. Interviews are abysmal.
We have had to practice telephone skills. When the phone would ring, he would pick it up and not say a word. Finally, I would ask him if his father was home, and he would say yes. However, he would make no indication that he was going to tell his father than he had a phone call. After a couple of years of practice, he almost sounds normal on the phone now. He just got a phone call last week setting up yet another interview. He was to write down the address and time for the appointment, and they spoke for about 5 minutes. After he hung up, I asked what was said. He said he couldn't remember. His brain had been so frazzled during the conversation that as soon as he hung up it was completely gone. Poof.
He still has trouble finding things. I will tell him to go get his black jeans and he will come back and say he can't find them. So I walk into his room and pick up the jeans that were laying on top of the bureau. Because they weren't where they were supposed to be (inside the bureau drawer), he is unable to take that extra step and look around to see if they might be somewhere else.
Sometimes when he is sitting at the piano, I will place my hand on his shoulder. This I should not do. He will jump a mile and ask that I not touch him. Getting an awkward hug from him (after asking his permission) is rare.
When I was informed that the doctors thought my third son also had Asperger's, I was stunned. What do you mean? The two boys are nothing alike? The second one had none of the struggles of the first one. I learned that the autism spectrum covers many different degrees and so yes, my second son had certain similarities, especially with emotional meltdowns and social encounters but other symptoms were all his own.
Both of my sons are on Abilify mainly for "autistic irritability" which is doctor-speak for "temper tantrums." It also helps to bring them out of their shell and be more open with others. They are both aware that they are different, yet have little desire to be like others. They get lonely sometimes, but they have each other when necessary.
Our main fear now is what will happen to him when we are gone. There are not many programs out there for autistic adults. Nothing to help them get a job. Learn how to get a girlfriend. I figure he will be living with us for many years to come.
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