What is it like to be a parent of a child with Asperger's?
Answer by Jean Marion:
"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 obsessively ask me the same 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 school work 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 distractible 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 less than 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 nursing 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 attached to his crib. 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 but he was happy when he did.
We were advised 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 instructions 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 did not want to 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 delivery man came. We spoke often after that, and when he turned four he learned to read and enjoyed reading books to us. Once he learned something new, he was full steam ahead.
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 preschool to try 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 potty. 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. Please let this work, please let this work! My prayers were answered. There was complete silence, and then there was laughter and 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 preferred to hold it for a week or longer until he absolutely could do so no longer, (also known as encopresis.) 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 he decided 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 quickly, 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 cycle continued for 10 more years. (This is not the case for most children with Asperger's, but it does happen with some autistic children who may be afraid to go.)
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' debacle 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 realize what the sound was for and 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 accommodations for him.
It was obvious that first year of Kindergarten 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. The teacher literally had to say his name and tell him where to go after the other children were already there.
He would not pay attention to the teacher when she spoke, and often his work remained on his desk undone. We would do his schoolwork together at home. This is how we dealt with 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 schoolwork, often getting A’s on his math and spelling. But he rarely did work inside of the classroom. Often 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 ADD, 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 home school 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 altar 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 breathe a deep breath until it was all over. Other than having the pillow hang from his hand (forgot to practice that part) 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 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. He had no comprehension that it was considered a bad thing.
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, (just marking the bubbles in a pattern without reading the questions) 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 deplorable. Mathematically he was advanced, but he refused to do the schoolwork. When informed he must do it, he knew they could not force him. After all, nothing bad happened in class when he did nothing. 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 long 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 at the school 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 inattentiveness would last 15 minutes. During this time he would not hear any class instructions or participate in any class discussions. At other times throughout 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 had been attempting to talk to the students and he would be constantly interrupted by my son, 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 sweet 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 they would have an answer. The doctor tried to talk to him but he would not look the doctor in the eyes, he was staring at the ceiling. 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 were a game and a real hardship to do. As soon as the doctor would start to respond he would look away again, either staring up above, or giggling uncontrollably with his hands covering his mouth. At one point he rotated in the chair so that he was sitting on his head. It became very apparent to my husband and 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 petrified while screaming “Mommy!!!” the panic 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 on 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, excitably giggling. 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 mortified and pulled him from the church classes immediately.
I also remembered the Boy Scout meeting where all the boys were huddled in a group on the floor intently listening as the fireman described his job, while my son 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 acting silly. 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.
“What type of body language does he use?”
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 problems with motor skills?”
P.E. at school is very difficult for him, he still cannot skip. He doesn't have the strength to hold up his body 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 simple 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. He hates to hear a fork scrape a plate.
“Does he often repeat himself?”
“Repeatedly! Sometimes he drives us nuts…” I 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 coffee table. 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 mathematician and 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 stares 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. Asperger Syndrome? It was 1998 and I had never even heard of it.
I found a lot of information on the internet about it, and I read all the books I could find that were available 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 now tell 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 of what was right in front of him 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 and didn't care what other people might think of how he looked.
He would wake up in the middle of the night with terrible stomach pains, and moan 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 would wake up with a dream that seemed so real to him. He would bring them up later, sometimes even a year afterwards and talk about it as if it happened yesterday. He did that with real events also. We would be sitting watching television, and out of the blue he would say, ‘I am good at making ice cream.” I asked him what he was talking about and he seemed upset that I didn'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 earlier. As if it had happened yesterday for him. I could tell he got frustrated when I didn't know what he was trying to tell me.
Sometimes he would ask a question and word it in such a way that I didn't understand what he was asking. When I would tell him to reword it, he was only able to repeat himself more loudly as if that would help me to understand. It was frustrating for both of us. He would call me stupid in a loud angry voice because I couldn't read his mind.
He often seemed unaware of what was going on around him. He was 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 were cumulus or cirrus.
When I spoke with him, I first had to get his attention. Then I had to keep it by demanding that he look at me in my eyes. Then I would give him an instruction and ask him to repeat it. Then I would question him about the instruction making sure that he understood what I intended for him to do not just the literal meaning of what I said. We were most successful when all of these steps were followed during communication.
Many times he was filled with questions that he would ask. However, as often as not, he didn't wait around to hear the answer if it was more involved than 3 or 4 sentences. By then his mind was on to something else and often the conversation would stop dead in the middle as he wandered off to explore something new.
He was very innocent and naïve. When talking about church, God, Jesus and such things, he literally believed in heaven and hell and everything that he had been told regarding the past. When watching movies such as “Hercules” he believed 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 was 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 had trouble understanding the concept of morals because he cannot feel what anyone else might be experiencing.
He had displayed many instances of bully type behavior. It was 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 was inciting in the other child. When I tried to explain how wrong it was to do this, his response was always very simple… ‘But I want it!’ If the child fought back as was often the case, then screaming, hollering and hitting would ensue. His temper was quick to explode if things were not going his way as he had a very low tolerance for frustration.
Since he never acted that way as a young child, I believed that he was going through the normal stepping-stones of early childhood, just at a much-delayed rate. He was doing things in early adolescence that many children do from the age of 2 to 6 that he never did at the time. This seemed highly inappropriate, but he must learn the same way his peers learned, it was just unfortunate that he was learning it all so late and that his peers were judging him because of how he acted.
There were times when he acted very immature. He enjoyed talking in baby talk and liked to crawl on the floor instead of walking. Sometimes he would get so excited he was rolling around on the floor, jumping off of the couch, and laughing uncontrollably. This type of behavior was very embarrassing for our family when it happened in a restaurant or a store.
Although he was an expert at video games and played the piano well, he did not have the coordination to tie his own shoelaces. When dressing himself he often wore his clothes backwards or had his pant leg stuck in his sock without realizing it. His socks were likely to be worn with the heel facing up and he didn'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 their front. He was talking with the 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 learned to ride his 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 wanted 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 was no longer welcome at neighbor homes as he often knocked on their doors 4 times a day asking if so and so could play yet. There were a couple of kids that continued to come over and eat and play on the computer however. It was the only social contact outside of school that he had.
Aspie #1 Age 9 (When diagnosed)
Middle school was difficult. High school was aggravating. Due to his IEP, the teachers would only grade him on finished work. He would not participate in group projects at all. Test taking was a nightmare. He would see 5 pages of bubbles to be filled in and become overwhelmed. "I can't do all of this!" Any assignment that he deemed as 'too long' didn't get done. We had to split them up into smaller parts so that he didn't get stressed out doing them.
He wouldn't speak at all when he woke up in the morning. If anyone tried to ask him a question they would likely get a mean look and a slammed door. If the issue was pushed it would lead to a meltdown and sometimes a crying fit which would ruin the entire morning for him.
In the beginning of the 9th 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 7 years based upon just that one afternoon. He couldn't get it through his head that she was no longer interested.
Years later as he would drive 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.
He doesn't want to brush his teeth or take a shower. He could care less if his teeth turn black or people think he smells. I had to tell him when to brush his teeth and when to shower. Sometimes going to the haircut place was the only way to get his head completely clean. Sometimes I would take him swimming with me so that his entire body was submerged in water for a nice clean soak.
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 wanted to be a writer, and joined the writing club in high school, but it was very difficult for him to write fiction when he could only see the world through his own eyes. Each character was another version of him. He couldn't see that in a paragraph he had actually stated the same information multiple times by switching the words around. To him, there were more words on the page, so all was well.
He is now 26 and it has been a looooong hard road for him. He finally got his driver's license at age 19, although I worried when he first started driving because of his inability to want to look to the left or right. He simply stared straight ahead.
He is taking only one class per semester at university which gives him something to do. The thought of more classes than that stresses him out. 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 it very difficult to get out his thoughts.
He lacks certain social skills to get past a normal interview and even get 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 non moving. Like a scared rabbit staring doom in the face. Job interviews are atrocious.
We have had to practice telephone skills. When the phone would ring he would pick it up and not say a word. He didn't realize that the caller was expecting a Hello? 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 that he had a phone call. After a couple of years of practice he almost sounds normal on the phone and has the basic etiquette now.
He just got a phone call last week setting up yet another job interview. He was supposed 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 had no idea who the interview was with or where he was supposed to go. We were able to figure it out by using caller ID.
He still has trouble finding things. I would tell him to go get his black jeans and he would come back and say he can't find them. So I would walk into his room and pick up the jeans that were lying on top of the bureau. Because they weren't where they were supposed to be (inside the bureau drawer) he was 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.
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. No basic job training. No way for him to learn how to get a girlfriend. I figure he will be living with us for many years to come.
When I was informed that the doctors thought my third son at age 8 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 (which were actually worse) and normal social encounters, but other symptoms were all his own. He is taking Risperdal mainly for 'autistic irritability' which is DocSpeak for 'meltdowns'. The medication also helps to bring him out of his shell and be more open with others. He is aware that he is different than the other kids yet he has no desire to be like others.
I have learned a lot in the past 16 years, and I'm homeschooling my other son with Asperger's. I don't want a repeat of the first outcome. I want to try and do it better this time.
Aspie #2 – Age 11