UPDATE: See Latest List of " Signs So Easily Missed Or Dismissed" - includes things I added but did not know of at the time this was written.
Signs So Easily Missed Or Dismissed...
Having researched autism intensely, Fred and I saw that there was a great deal of debate as to what actually caused autism. Everything from vaccinations to genetic predisposition and neural abnormalities had been hypothesized. It was not the intent of this book to debate this issue but rather to simply help parents spot possible warning signs, help further scientific study and give an account of how one family dealt with this disorder.
As each day passed and we learned to deal with the upheaval autism can bring to a family, I looked back and realized that the difficulty in diagnosing autism in its earliest stages lied in the fact that many signs of this disorder were so easily missed or dismissed by parents, family, friends, and healthcare professionals rather than seen for what they truly were, early warnings of a deep, underlying problem.
The rest of this chapter provides an account of the various behaviors that were exhibited by our son, Zachary. Although this list is in no way to be considered all-inclusive of all possible signs/symptoms of autism, it does provide some key signs. Parents need to learn to trust their judgment. If something in your child’s behavior “looks odd”, take a closer look, do not be lulled into a false sense of security. If only I had known what to look for.
Constant Crying Under The Nursery Heat Lamps
My nap of two hours after Zachary’s birth was brought to a rather unusual end. I awoke to a nurse tapping on my arm and saying, “you’re going to have to take your son now, he’s been screaming for two hours straight and we can not take it anymore”. My first thought was, “you idiot, why did you let him cry that long, you should have come and woke me right away”, but I did not say anything, not wanting to upset the person who cared for my son while he was in the nursery. As soon as I took Zachary into my dark room, he fell asleep within a couple of minutes. I kept him with me pretty well until I was discharged the next day. He slept almost the entire time, although looking back, I can recall that after feedings, he had a hard time actually falling asleep and I had to walk around with him to calm him down.
Perhaps the first indication we should have had that something was not right was the fact that for the first two hours after his birth, Zachary cried non-stop. Looking back, I guess that should have been a sign to any parent or healthcare professional that something was wrong. Did not the fact that a newborn cried for two hours non-stop in itself seem very abnormal? Almost every newborn I had ever seen just slept in the first few hours after birth. Given that so many autistic children have hypersensitive senses, I have often wondered if it was the heat lamps he was placed under at birth in order to regulate his body temperature that caused him to cry incessantly the first two hours of his life. After all, he did fall asleep right away when he was brought into my room, a dark, nice, cozy place to sleep. Of course, at the time, who would have thought there was anything wrong? Who would want to even think there was anything wrong with such a beautiful baby boy? Certainly, not his parents! I was so tired from the whole birth itself I did not even think about such possibilities. Even as I look back today, how could I have seen that Zachary was hypersensitive to the heat or light from the heat lamps? A parent suggesting such a thing, even today, would surely be viewed as “over-reacting” or “crazy”.
The Perfect/Horrible Baby Syndrome
In the journal I kept of my children as they grew up, words I once wrote as cherished memories now came back to haunt me. “Zachary is the perfect baby”, I once wrote. He never cried, never complained, loved to play by himself. I remembered when he was first born, how I would always say to myself, “he must be up from his nap by now”, and I would have to go check to see if he was up because he never cried out for me to come and get him. Whenever he awoke, he just stayed in his bed, perfectly content to be alone. When I returned to work, five months after he was born, Zachary went to the babysitter’s, Jennifer, for the first time. Even she stated that Zachary was such a good baby, the easiest she had ever cared for, that he was always content to just play by himself in the crib. Little did either of us realize that this was one of the first signs of autism manifesting itself.
Although Zachary was the “perfect baby” I have come to learn that the opposite can also be true, that a child can be an “absolute monster” also. It just depended “which one” you got. Of course, maybe the “absolute monster” was just a manifestation of a more severe case of autism. Who knows? This, like the “heat lamps” was obviously, again, not something I could easily prove or disprove…and who complains to a pediatrician about a “perfect baby”, anyway?
The Loner Syndrome/Lack of Social Skills
Children who suffered from developmental disabilities such as autism, I had read, often appeared to be “loners”. They preferred staying in their own private space by themselves to interacting with other family members or other children. I remembered how Zachary used to stay in his own corner in our basement, “playing” with a few things, quietly, while Fred, Anika and I watched television after a long day. I did not ever remember him jumping up on us like Anika used to do. He just seemed to always be “busy”, by himself. He never showed much interest in anyone. Of course, Fred and I were always so exhausted from the demands of corporate life that, again, we did not question this behavior. After all, he was such a “perfect child”. Another behavior so easily missed or dismissed.
Does Not Like to Look At Self In Mirror
Not only did Zachary not show interest in those around him, he also showed no interest in himself. On several occasions, I had tried to show him his reflection in the mirror and he had simply turned away. If I tried to prompt him to look, he would resist even more. He did not want to see himself nor did he show that amazement children have when they first realize “that is me” in the mirror. I just thought he was “afraid” of it and still too young to understand that was him looking back. I had completely forgotten about this particular behavior. It was only as I began to write this book that I remembered this “problem with a mirror”. I had not tried to make him look at himself for a long time. I had, again, overlooked what may have been one of the first signs of autism.
It was now so easy to see that Zachary had so many symptoms of autism. He used to “play” by himself, or at least that was what we had convinced ourselves he was doing. He used to love tipping his cars and trucks over to spin the wheels. He could do that for a couple of hours at a time, placing an object in the center of the wheels and spinning them until the objects went flying off. He found that absolutely fascinating. He found ways of spinning almost anything. We used to joke that he would one day become a mechanical engineer. He was “just interested in mechanics or physics”, we thought. Of course, in retrospect, that again was a symptom easily explained away, one of those, “he will grow out of it” behaviors. Fred’s sister had a son, now eleven, who used to love to play with vacuum cleaners. He would spend hours playing with the apparatus. I remembered how she joked with us when he was just two or three that he would grow up to be a vacuum salesman.
Now, I knew that something as simple as finding yourself joking about a child’s potential future occupation could be a hint of a bigger underlying problem...that it could be more than simple fascination!
Zachary played for hours if we let him, doing basically the same thing over and over but we did not know to question these behaviors. In looking back, even attempts at distracting him and making him do something else were rejected. He always wanted to go back to his intriguing activity.
Zachary’s attraction to his toys was not a normal one. He was not pushing his cars/trucks around. He just tipped them over to look at their spinning wheels. His play was not “appropriate” for most toys. Zachary had never had any attachment to a stuffed animal of any kind and neither did he have a favorite blanket as so many normal children did. I once had a parent in a playground tell me that his child used to take plastic lids off containers and just fling them with his wrist and make them come rolling back toward him along the floor, and that he could do this for hours. As I spoke to this parent in the park, Zachary was playing in the sand, filling a bucket and dumping it out, filling and dumping out, filling and dumping out…never really doing anything else. I went over to show him how to let the grains of sand run between his fingers and fall to the ground. That just gave him one more fascinating behavior to use for hours on end. In the bathtub, Zachary performed the same behavior with water, taking some water in his hands and then letting it flow through his fingers, over and over. I remembered how, before we realized what was really wrong with Zachary, Fred told me he read somewhere that on average a child may spend up to forty-five hours experimenting with “volume or water displacement”. That may be so, but if Zachary was allowed to, he could do all that “experimenting” in a matter of a few days.
Zachary loved to roll or rock on the floor, so much so that Fred affectionately called him his little “tumbleweed”. In looking back, I wondered if this rocking motion and the “vertigo” sensation it surely created was another early sign of autism. This, too - just another suspicion I had as I tried to piece together the puzzle of autism.
Zachary’s focus on a particular activity was amazing. He could be “entertained” by one activity for a long time, hours actually. Of course, I had read that ability to stay focused was a sign of higher intelligence…so, let him focus on what he was doing, right? Wrong! Most young children get bored rather quickly by the same activity and want to move on. Again, we had “explained it away”…he was just “really focused, really intelligent”.
A World of “Order”
To Zachary, all things had their specific place and there had to be order in his world. Anything out of order was not tolerated. Furthermore, things had to be done his way or not at all. A simple thing such as stacking blocks had to be “just so” or the blocks would go flying as he burst violently out of control and swung his arms to scatter the blocks. Zachary took crayons and lined them up perfectly, one next to the other, the tips and bottoms perfectly aligned with one another. If the crayons were of different sizes, he would attempt first to align them at the tips, then, seeing that the bottoms were not aligned, he tried to align them at the bottom. Seeing that the tips were then “out of place” would spark the frustration and violent outbursts. It just got worse the more he tried. He would never attempt to draw with the crayons, just line them up. If lining them up tip-to-tip or bottom-to-bottom did not work, he lined them up in a long line, the tip of one touching the bottom of the previous crayon, until there were none left.
He did the same activity with other toys as well, lining up cars, trucks, Lego blocks, food cans, etc. The rolling of up to twenty side by side food cans across my kitchen floor and living room was a regular occurrence. Zachary would peel the labels off food cans if given the opportunity. After the removal of about twenty-five food can labels in one sitting, I ended up putting a hook on the pantry door so that he could not get to the cans. The days were long enough without having to guess what was for dinner and the putting of cat food cans into the pantry was no longer allowed. Feeding the cat was Anika’s job, and the whole idea of opening one of those cans by mistake while attempting to gather something up for dinner grossed me out completely. I basically wanted nothing to do with any “pet duties”. Anika wanted the animals (we later got a dog as well), and any new food cans were immediately marked with a big black permanent marker “x” on the top of the can and placed into a special storage area immediately upon coming into the house.
For Zachary, labels were not “part” of the can; someone had put them there, so he took them off. It was the same thing for the labels on the crayons. He peeled those off too. He removed the labels on my computer diskettes, the inventory tag on my computer, etc. Anything that “did not belong”, any sticker, any label, on a toy, on an appliance, on anything, was promptly removed. In addition to peeling labels and stickers off, Zachary was a master stacker. He stacked blocks, cans, puzzle pieces, videos, CDs, plastic containers, etc. and the stacks had to be perfectly aligned. To Zachary, the world always had to be in a specific, and perfect order. If he hurt himself on the finger, for example, and a scab formed as the skin tried to heal itself, Zachary would incessantly “pick at it” and make it much worse since to him, the scab “did not belong there”, nor did a bandage. It made healing any injury, no matter how trivial, much more difficult. I applied ointments at night, as he slept. This need for order made most simple household tasks difficult. To Zachary, all clothes belonged in the same laundry basket. So, if a basket of clean clothes and a basket of dirty clothes were both in the house, he retrieved them and “put the clothes together”. When I did laundry, he dragged clean clothes out and attempted to toss them in the washing machine along with the dirty clothes. Likewise, all dishes belonged in the dishwasher (clean and dirty alike). If “perfect order did not reign” in his world, if I tried to prevent him from putting clean clothes in the washing machine, if the stack of blocks, or cans, or videos got too high, and tipped over, or could not be perfectly aligned, he got very upset and would throw himself back on the floor, often hitting his head. That was the most troubling behavior to deal with.
Zachary’s focus on any activity was intense and any disruption or change in what he was doing that was initiated by another person, a pet or by the laws of physics would set him off into a violent outburst of frustration. Most times, those outbursts involved his throwing himself back on the floor (or the ground if we were outside) and kicking his legs or flinging his arms hard onto the floor. Having earned a degree in Psychology and done some M.A. work in Psychology also prior to switching my area of study to Finance, I knew that tantrums were a behavior that could not be rewarded. Whenever Zachary would throw himself back, even if he looked like he “hit hard”, I would keep my cool and just walk over and past him, not giving him any attention for what he had done…and let me tell you, at times, that was very tough. Like any parent, it was instinct to want to see if Zachary had hurt himself badly, and ignoring this behavior was a very difficult thing to do. Yet, I knew rewarding such behavior by giving him attention would only make it much worse. I did not show any concern, frustration or anxiety on my part when he did this. As I continued this practice, over time, I found his tantrums to last less than five to ten seconds. He still had his outbursts, but, due to the lack of reward or attention, they continued to be very short. It was difficult at times, especially, for example, when we were shopping or visiting someone. People tended to look at me as though I was a freak because I was not “tending to my distressed child” or they wanted to help by comforting Zachary and I found myself in the middle of the dog food aisle at Wal-Mart barking out to a perfect stranger “do not give him any attention, I do not want you rewarding that behavior”. I was often too tired to go into even a simple explanation to a stranger. As any parent of a temperamental two-year old child knows, a “difficult child” drains all your energy. I chose to focus on what I considered important, and having to account for my actions to every stranger around was never high on the priority list. It would take me a lot longer to shop if I had to explain my actions to everyone given the fact that something as simple as changing direction when in the middle of aisle could set Zachary off. I dealt with my temperamental child my own way, as any parent would. And, like any parent going through the “terrible twos”, I could not wait for it to end. The “terrible twos”…I had explained away the tantrums and violent outbursts. Another sign so easily dismissed.
Arching of Back
Since I usually did not pay much attention to Zachary’s tantrums and did not speak to him until he “calmed down”, and I say that “relatively”, of course, I really did not notice the fact that he sometimes arched his back when we tried to pick him up. It was only after I realized he was autistic that I paid more attention to his every move and truly noticed this additional characteristic/trait often seen in such children in my own son. I would not say it was something he did frequently, but it was there.
One thing that I did remember quite vividly was the fact that Zachary screamed constantly. Over one hundred times per day, he emitted these very high-pitched, drawn out screeches. They were unbearable for both Fred and me. For a while, we ignored them, but as they became more frequent, each and every scream somehow just drained our energy. They exhausted us. We just thought it was the “terrible twos” and hoped for the day they would suddenly end, but that was not to be the case. The screams just got worse and more frequent.
Not yet suspecting autism, I thought this was a condition Anika’s pediatrician had once mentioned to us when Anika was first learning to speak. With Anika, she had not screamed, she pulled her hair out. From the front, her hair looked fine. If you drew a line from one ear, across the top of her head to the other ear, however, from there on, down back to the neckline, she looked practically bald. She used to twirl her hair with her fingers and pull it out. The hairs on the entire back half of her head were no longer than maybe 1/3 of an inch or so, basically, just the “new growth” was there, everything else, she had pulled off. We were concerned about this and decided to take her to see her pediatrician. She was seventeen months old at the time. In accordance with the doctor’s suggestion, I simply cut Anika’s hair so short that she could no longer grasp it. Once I did that, the hair pulling completely stopped for good. The doctor had informed us that there was actually a medical term for this condition, and that it was the result of a child experiencing frustration because they are trying to communicate but are yet unable, and so, this was how they vented that frustration. I remembered how he mentioned that children who experienced this extreme frustration when unable to communicate either pull their hair or screamed.
I asked Jennifer, my babysitter, if Zachary screamed a lot at her house. She stated that he did not. When I mentioned this to the pediatrician, during one of Zachary’s visits, he stated that was quite normal, that a child may only express such behaviors where he felt most comfortable. So, I figured I had had one child who pulled her hair and that I was now experiencing the other aspect of the condition, the screaming. Had I just been “lulled” back into not seeing what was truly there? Another symptom missed or dismissed.
Lack of Flexibility
I usually sat Zachary in the child seating area of the shopping cart whenever we went to the store. At times, if I took just even one step back, instead of continuing forward, that could set him off screaming. I found his lack of flexibility in changing direction impacted everything I did. Something as simple as rewinding a videotape in the VCR with the story going “backwards” on the television set caused him extreme stress. A three point turn in a car was a nightmare…and, if in a really tight spot and more than a three point turn was necessary to maneuver the vehicle, the screams in the background were deafening. At no time did this manifest itself more than when we attempted to travel to Canada to visit family. We took a looping on-ramp onto the highway. Zachary perceived it as a change in direction. He calmed down after a while, but then we had to stop for gas...another change in direction. We had to go under the highway to get to the gas station. Zachary could not take it. He screamed and screamed and simply would not stop. We had actually driven seven hours of what was normally a twelve-hour trip. Zachary had screamed for approximately three hours straight. Fred and I could no longer take it either. We turned around and went back home. What a disaster that trip had been. Funny thing though, almost as soon as we had turned around, Zachary stopped crying. He did not cry again. We made it home without so much as a whimper.
Shortly after, we tried again - we made yet another trip to Canada. It proved difficult as well. This time, we were determined to make it there, and we did without much incident. We were to stay there for about ten days. Zachary ate very little the entire week. I practically had to force feed him every day. Another horrible “vacation”! I was so glad to get back home. Upon arriving, he began eating normally by the next day. This was one of the only times I really recalled a change in routine being a problem. I did not find routine changes particularly impacted Zachary. I felt most times, he strived on change. That puzzled me since almost every book I had read on autism stated routines were necessary for these children. I really had not found that to be true for Zachary.
Staring at Lights, Ceiling Fans, Anything that Spun or Turned
Shopping was also often complicated by the fact that Zachary had an intense attraction to ceiling fans and lights. Zachary loved to look at anything that spun or turned…and ceiling fans fit the bill perfectly. He also loved to look directly at lights, almost putting himself into a trance as he glared into them. As I learned more about autism, I came to realize just how much Zachary loved to stare at lights. He would bring whatever light he could, right up to his eye. A red light seemed especially pleasing, maybe just because it was so different than the others. It was almost as though he was purposely activating specific areas of his brain, almost getting a high from the light, or at least intensely enjoying the experience it seemed to create in his brain. Not all lights were pleasing to him, however. If the sun was particularly bright on some days, that bothered him. He would squint a lot. I even purchased a small pair of sunglasses when he was three in an attempt to lessen his discomfort. I did not realize how intensely Zachary enjoyed most types of lights until after I knew he had autism and read in a Defeat Autism Now (DAN) article that autistic children often liked to stare at lights. Prior to that, I thought all children stared at ceiling fans and lights. Signs, again, so easily missed or dismissed.
Looking back, I saw how Zachary had an intense love of anything that shined, turned or spun. If we were traveling and he began to fuss, all I had to do was position the vehicle next to a huge truck and let Zachary look at the wheels turn. Since we lived in the suburbs or Chicago and almost every road had two lanes going one way, this was always an easy enough thing to do and it calmed him right down. If I then passed the truck or fell back behind it, then the trouble started again. If trucks were not available, I saw him extending his little neck to see the wheels of cars that were nearby. It took me quite a while to even realize that during travel times, he had this need to see spinning wheels. Of course, at first, like everything else, I thought nothing about it, just that he was fascinated by the “mechanics” of it all. This sign was easy to miss for a long time, after all, you look forward when you are driving, and the position of his car seat in the vehicle did not allow me to see him that well in the rear view mirror. Another sign, missed for a very long time. It was only after I realized Zachary had problems that I began to piece all these little things together.
Fascination with Captions/Credits
Zachary also preferred to see the scrolling of the captions at the end of a movie/video to the actual movie itself. He would go right up to the screen and look intensely as the captions/credits scrolled by. This was something he had not particularly done prior to being diagnosed, but it became more noticeable later.
Visual self-stimulation took on many forms for Zachary. Another way by which he seemed to almost be able to self-stimulate his brain for a “high” was through the use of “sideway glances”. It was almost as if he would focus his eyes on a single object, keep them on that target and then quickly move his head as far in the opposite direction as possible without losing sight of the original target object. This appeared to give him a vertigo sensation and he loved it. When I think back, he actually did this fairly often, but, I really had not noticed the frequency until I read about “sideway glances” in a Defeat Autism Now (DAN) article on the internet after I truly realized there was “something” wrong with Zachary. Of course, prior to reading that article, I just thought he loved vertigo as much as Anika did. She would always ask her father for a “zoom-ride” as we came to call it. A “zoom-ride” simply consisted of Fred taking Anika into his arms, holding her in a position that was basically parallel to the floor and spinning her as fast as he could or as long as she could take it. It was great fun for both father and daughter. I had seen Zachary’s sideway glances as a “zoom-ride” substitute. Again, I had “explained” away another symptom. These glances disappeared within a couple of weeks of being put on cod liver or flax seed oil.
Lack of Eye Contact
Lack of eye contact was perhaps one of the easiest signs to explain away. Zachary was just a very shy child, taking after his father who was also very shy when he was young. . I played with him and tried to force him to look at me, in the eyes, and at times, he did, for maybe up to 30 seconds. Over time, the glances into my eyes or anyone else’s would become shorter and shorter, almost non-existent. Often, when I had thought he was looking at me, upon closer examination, I came to see that more often, he was looking at my mouth move. Once more, it was not until after I realized Zachary exhibited signs of autism that I came to view this as a symptom of a bigger, underlying problem.
Looking Through You
Not only did Zachary not like to give eye contact, but when he did, more and more it appeared to me that he was looking “through me” instead of at me. Normal eye contact usually involved some kind of movement of the eye, be it ever so subtle. Zachary’s stares were just blank stares with, it now seemed, no movement whatsoever, just a type of fixated, focused stare. As I read more and more on autism, I came to see this as yet another symptom in my son which got worse with time...another one I had missed completely.
Sensitive Hearing/Chronic Ear Aches
Zachary had chronic ear problems as an infant/young child, so, the fact that he tugged at his ears a lot did not alarm me. I was constantly calling the pediatrician about “possible ear aches”. Many times, he did have one, but many times, I would take him to the doctor’s office and his ears were fine. It was always difficult to determine whether or not I should take him in, most times I did, preferring to “make sure” he was ok. Looking back in his medical records, I now saw the pattern, suspect ear ache, up at night, earache after earache after earache…up at night, up at night, up at night. It was everywhere in the medical records. The doctors should have seen this was something more than just ear aches given we were often told his ears were ok. I was sure his pediatrician and immediate care must have thought we were overly anxious parents, but I did not care. I always insisted on taking him in if I suspected he had any ear problems. Zachary never seemed to develop much of a fever when he did have earaches, so, it was very difficult for us as parents. We often just went with our “gut feeling” that something was wrong with his ears. I now wish I had known that chronic ear infections paired with doses of antibiotics were common in children with autism. I wish I had known to look for “something else” when I suspected something was wrong with his ears but that they checked out fine. Why had the doctors not figured it out? Again, perhaps they had but simply refused to admit it. A child like Zachary can be very expensive for a clinic that was part of an HMO/PPO. They had to have been losing a lot of money with him. He was constantly there.
It was only after I determined Zachary had autism that I figured out his hearing itself was somehow being impacted by his condition. I first came to that conclusion one afternoon when trying to put him down for a nap. We were lying on my bed, as we often did. I was hugging him and trying to get him to settle down and go to sleep. We lived about one half hour from O’Hare Airport. We heard jets often, but not so low that they really bothered us…at least that was what I had thought. As I laid there quietly with Zachary, he all of a sudden put both hands over his ears and looked terrified. I had never seen him do this before. About thirty seconds later, his eyes, now focused on the ceiling just above us, went from that point and followed across the entire ceiling as the jet made its way over our house. I was amazed. It was as if Zachary had heard the jet close to 30 seconds before I had and this one really bothered him. I did not know if it was due to the engine type of this particular plane, the particular sound waves it emitted, or what. I just knew this one really impacted him. That was when I truly saw how sensitive his hearing was.
I then began to notice that the sound of almost any small motor frightened him. Taking him for his first haircut was a real treat. That was just after we had figured out he had autism. Fred and I decided we would let “father” go first to show his son that getting a haircut did not hurt. As soon as the barber’s clippers went on when Fred was in the chair, Zachary went into a screaming fit. I had to take him outside for a walk to calm him down. When I came back in for “his turn”, I explained to the barber that Zachary had autism and told this barber who had about 30 years experience cutting hair that he had two minutes to get the job done while I held Zachary tightly between my arms. The barber completed the task in the allotted time. That was the first and last time I took my son for a professional haircut.
The whole thing with Zachary’s ears was really confusing. It was almost as if he was more sensitive to certain frequencies of sound than to the pain of infections within the ear itself. One time, the doctor told us he had a very bad infection and had actually punctured his eardrum because of it. Zachary had cried a little and was somewhat crabby but he did not appear in any pain. The only reason we even realized he had an earache was because we found a fair amount of fluid in his crib and saw it was also coming out of his ear that he was slightly tugging when he woke up one morning. How could he have such a bad infection and yet show so little discomfort? He was only ten months old. You would have thought the pain would have bothered him tremendously. We felt like horrible parents for having missed such a bad infection and were extremely concerned about permanent damage. Things were always so difficult with diagnosing earaches...when we took him in, we were told often there was none, when we did not take him in because he did not complain, that was when it had been the worse, actually puncturing his eardrum.
There were a few other things that I now looked back on and saw were also related to his autism and this characteristic of “not feeling pain” exhibited by many of these children. For example, during one of his visits to the pediatrician Zachary received three needles (vaccinations) in addition to the oral polio. When the pediatrician gave him his first needle, there was no crying. Second needle, still no crying. Third needle, still no crying. Although I was hugging and kissing him between each needle and the doctor and I joked about what a “good baby” he was, I now looked back and saw that this too was quite abnormal. At the time, though, it was so easy to explain away and have pride in our “good little man” who could tolerate pain so well. Who would have thought that this manifestation of being such a “good boy” was actually a sign of a deep underlying problem? Of course, a child should cry when he gets three needles in a row…what a fool I had been to have not seen this…but the doctor had not seen it either. Would not any professional consider this lack of crying when needles are given “abnormal” for such a young child?
The “nothing hurt” symptom also manifested itself while we were on a trip visiting my in-laws in Canada. Ever since I had had my children, I had never cooked using the two front burners of my stove, just as a precaution for the children. I had always said the “be careful, it was hot”, like every other parent would say to warn them of the possible danger. We had a gas stove. My mother-in-law had one of the new electric stoves that had a smooth glass surface under which the elements were located. To Zachary, the difference in the appearance of the stove must have sparked his curiosity. Unfortunately, my mother-in-law, not having small children around all the time, cooked using front burners as well. Zachary went up to the stove and touched the “red light”. The burners of these new stoves looked like bright, attractive, red, circular lights. Anyway, I was too far away to stop him and my mother-in-law was at the sink and had not even realized Zachary was near her. He just went up there and put his hand on the element for what seemed to me like a long time as I yelled at him from across the room. It all happened so fast. Zachary looked at his finger but he did not cry.
Again, what a “good little man” he was for “taking the pain”. I quickly put his hand under cold water to stop the action of the heat from further damaging his skin. He seemed ok though, so, at the time, we did not think much about it. Zachary always appeared to be so tough. Even when he played or banged himself up, he never cried. All of these things, his insensitivity to pain, I now saw where part of his condition, yet, as a parent, it was easier and more preferable to think I had such a “tough little guy”, right? The punctured eardrum, the three vaccination needles and the burned hand had happened over a long period of time and so, the sign of insensitivity to pain was easily missed or dismissed...again.
No Fear of Danger
Zachary showed basically no fear of danger. He was not afraid of water, cars, dogs, falling off of furniture, not anything. That, too, I would later read was often seen in children with autism. Again, I had not made the “connection” of this particular symptom until after his diagnosis. Another sign...completely missed.
Waking Up At Night
Although I had been easily able to nurse our daughter Anika for five months, with Zachary, it was different. It took me everything to nurse him for just three weeks. He was up practically every hour of the night for the first three weeks. I thought it was just the normal need to feed infants have every couple of hours when they are first born, but with Zachary, it was every hour. After three weeks I was suffering from complete exhaustion. I kept telling Fred that I just did not seem to have enough milk to ever satisfy him. Fred suggested I stop nursing. I was devastated both physically and emotionally. Why could I not do for Zachary what I had been so easily able to do for Anika? I had tried so hard and I loved him so much. What was wrong with me? I went through such an ordeal psychologically, I had such a feeling of ineptness as a mother. I now know that perhaps the problem was not with me, but with Zachary himself, even at such a young age. The problem was not simply an insatiable hunger.
After about six weeks, he slept more because I had given him a few spoonfuls of rice cereal to fill him up. During a visit to the pediatrician, I explain to the doctor that I could never satisfy his hunger and that I gave him a little rice cereal. I had given him the cereal from September 29th to October 18th. Zachary was born on August 12th, so from week six to week nine of his life. Although the portions were quite small, and he had been eating the rice cereal fine for almost three weeks, the doctor said it was too early and so I took him off the cereal until he is five months old. From week six on, Zachary slept about six hours per night. Around one and a half to two years of age, however, his sleep patterns changed drastically. He was up almost each and every night, at least once, if not twice and usually, he woke up screaming. We never knew why. It might take just a few minutes to put him back down, or it could take several hours. What I did know was that Fred and I were walking “zombies” during the day and we were totally exhausted by Zachary’s, and our, abnormal sleep patterns. This lasted until Zachary was about thirty four months old. I often tried to rock him back to sleep, but, for the most part, he ended up in bed with us.
A Heightened Sense of Touch
In looking back, I would not say that Zachary hated to be touched since he did like to hug us in bed, but he definitely had problems with certain sensations on his skin. He limited the type of clothing he wore and when very stressed out, he often said, “clothes off”. I often found Zachary’s skin to be quite dry. One time, I tried to put Shepherd’s Cream on his arms and legs. This was a very gentle cream and I thought it would help moisturize him a little. He was probably about two and a half years old at the time. It was right after we had found out he had autism. All he had on was a diaper as he lay on his back on the bed in my bedroom. No sooner had I put the cream on his arms and legs that all his limbs went up in the air and just stiffened. It was as if he had rigor mortis, except that unlike a corpse, he just screamed. Fred was upstairs with Anika watching television. I yelled at him to pour a bath for Zachary right away, that I had to remove all the cream I had just put on him to settle him down. As soon as he sat in the bath and I rubbed all the cream away, he was fine. Other than that, the only other odd thing about Zachary’s sense of touch was that he seemed very cautious about touching anything new or different...that went for objects as well as food. He always approached things that were new by slightly touching them with just one finger first or by turning his entire body away from the object and refusing to touch it altogether. His problems with the sense of touch were difficult for me to understand. How can a child be in some situations so cautious about touching a new object, be so sensitive to the application of a cream on his limbs, but yet not cry after receiving three vaccination needles, or burning his hand on a hot stove? I just did not understand until I remembered the “opiate effect” of casein and gluten.
Having now read a great deal about autism, and knowing just how sensitive some children were to the sense of touch, many preferring not to be touched at all, I found myself truly blessed in the fact that my child, for the most part at least, did not mind being hugged or kissed. I knew I would have found that extremely hard to deal with and my heart went out to parents who had to deal with this heart-wrenching situation.
Lack of Pointing With Finger
Although I did not realize this until after Zachary was diagnosed as having a problem, he never pointed to anything with his fingers. I now know this to be another characteristic of autistic children, however, I completely missed this one in my own child until reading about it.
Walking on Toes
Related somewhat to Zachary’s sense of touch was the fact that he did walk on his toes. At first, it was not that obvious, but with time this symptom manifested itself more and more. It was only after he was diagnosed as having a problem that I truly noticed it.
Constant Running Back and Forth
Perhaps one of the reasons I did not see Zachary walking on his toes so much was due to the fact that he always seemed to be running back and forth. He did it at our house as well as at the babysitter’s. I thought it was his way of burning the huge amount of energy he had and probably did not get rid of during the day. We had one huge room in our basement, forty feet long. Zachary would run from one end to the other, on and on. If he was not spinning something, he was probably running. It got to be quite frustrating for us after a long day dealing with corporate America. We did not understand where he got so much energy.
For a long time, we attributed it to the fact that he was just a busy, energetic two-year old. When Fred and I talked to people at work about it, most of them said boys were harder to raise, climbing on things, jumping all over, etc. I guess we did not think much of it because other people reassured us their kids were too energetic also.
Jumping Down the Stairs
For a while, Zachary had mastered going down stairs as one normally did, the first foot hitting the first stair, the second foot hitting the second stair and so on. As time went by, however, he lost that ability to go down stairs normally and started to jump down each stair using both feet. Gone was use of “alternate feet and alternate stair”. I did not notice the “proper” behavior had disappeared until well after Zachary had been diagnosed as having a developmental problem.
Hand Flapping/Leg Banging/Body Shaking/Seizures
At first, Zachary did not exhibit much hand flapping although this was quite common in autistic children. There was some, but it was so minor, that again, it was not something I would have considered bothersome or really noticeable. When I did notice hand flapping, it was more at night, as he laid in bed. Perhaps, that is why it did not stand out so much in my mind. When it came to manual movements, he was more of a finger person during the day, than a hand flapper. He would use one finger to spin everything. If he could not spin something, he would use his finger “as if” he was spinning something. For example, he would take his finger and run it up and down your cheek, very fast, from the top of your cheek to the bottom and do it repetitively, “as if” he was spinning or turning something on your face. Or, he would do that same motion on your forehead, or on his own forehead, or even in the air.
This was perhaps the one motion he did the most, using one finger to “spin” or “pseudo-spin” as I called it. He also developed a sort of need to bang his legs on the bed before going to sleep. He laid there on the bed and started banging one leg after the other, up, down, up, down, hitting the bed with each leg as hard and as quickly as he could. I later wondered if perhaps those were seizures, but I did not think so, his legs went up and down quite high. I knew, however, that at puberty, many autistic children developed seizures. Zachary could do the “leg banging thing” for quite a while (at times for a half hour or so). Or, he would shake his entire body on the bed. Again, it was almost his way of releasing energy before going down for the night. I knew autistic children could have seizure. I can not say 100% that this was what he was going through. I just did not know at that time. I let him do it simply because I knew it helped to calm him down. These particular increased body movements only manifested themselves after we discovered Zachary was autistic, whereas the “finger” thing was there from probably around eighteen months of age and intensified over time. We just did not know what to make of it.
Pushing Forehead Along The Floor
The one thing we did see but really could never explain was the fact that Zachary often put his forehead on the carpet and while on his knees with butt in the air he pushed his forehead along the floor for quite some distance. Again, we did not know what to make of this particular behavior. Did he simply like to look between his legs at the far wall getting further and further away? Was his forehead itchy and that was some weird way of scratching it? We had no clue! This behavior occurred about once a week or so and was odd and bewildering to us.
Head Banging/Self Mutilation
Pushing his forehead along the floor was probably related to the head banging Zachary periodically engaged in. At first, it did not seem to be that frequent, or was seen as more of an “accident”, the result of his two-year old tantrums. But, as time went on, he engaged in this a little more. The other way I noticed Zachary hurting himself was by biting himself on the arms or knees. I never reinforced that behavior with any attention and the biting subsided as time went on. If I found the head banging to be particularly bad, I would put his bicycle helmet on in the house. It covered the entire back of his head and since he did not like having it on, it reduced the frequency and intensity of this behavior. Of course, any jolt or blow to the head was one too many and this was a behavior we found extremely stressful. Every once in a while when he gets frustrated and “goes down”, he still hits his head hard enough that it continues to be upsetting for everyone. Pushing himself back often happened so fast when he was frustrated it was difficult to stop.
As time went on, Zachary started to punch himself in the face or on the head with both fists. He could do this quite hard. It looked like this “motion” provided a stress relief for him. Usually, this behavior did not last very long, a few hits and it was over. I quickly learned to say “gently” instead of an outright “no” since “no” just made him want to do it more. With “gently” he could still have “the motion” and he learned to “tap” himself lightly instead of giving himself a full force blow to the head. This was not a frequent behavior, but it was there.
Limited Food Choices
When Zachary was small, he used to eat pretty well anything we gave him. As he grew older though, his eating habits changed a great deal. He completely stopped eating certain foods. Even my babysitter complained that all she could ever get him to eat were toast, ravioli or macaroni and cheese, and applesauce. He loved macaroni and cheese so much that he would literally eat it by the handfuls and seemed to never get enough. He never wanted to eat any of the meats or soups I would send over for him. Drinking milk was never a problem. He did love milk. Water and juices were completely out. If we ate at the restaurant, he always ate mashed potatoes with gravy and ham. I could never get him to eat any other vegetables or any fruits. He wanted nothing to do with them. Meats, for the most part, were never a problem. He liked most of them. Again, we joked about what a “true little man” he was…just a “meat and potatoes” kind of guy. It was only after we figured out that Zachary had autism that we took a very close look at what he was eating. Healthy foods were given, but usually not touched. Over time, he limited himself to certain things. Fred and I never seemed to like the same foods and so we often cooked more than one thing or, more often, just did the “drive-thru” thing where you go to all your favorite restaurants or delis and get the various foods “to go”, take them back home, and then, everyone eats…basically each of us had a different meal. In today’s society, it was not unusual…and with both Fred and I having good corporate jobs, it just made life a lot easier. It was not that we ate mainly “junk food”...not at all. Chicago and its suburbs provided ample healthy eating it you wanted it. We bought expensive meals all the time. Why make lasagna, salads, Chinese etc., when the restaurants down the street made them much better and faster than you ever could.
I was not much of a cook anyway…not that I did not make good food, I just did not enjoy cooking. Fred knew that before he married me and I used to chuckle whenever he went back home because his mother was a pretty good cook and he would just “chow down” back on the farm where he had been raised. So, fine, I was not a person who liked to cook. I could still give my children a balanced diet that included all food groups. The fact that I had a two year old who did not like fruits and vegetables did not seem that unusual to me. I had heard a lot of parents tell me their children were the same. Anika loved fruits and vegetables, but even for her, that came with age. I figured Zachary would probably be the same and start to like them also around the age of three or four. It was only after Zachary was diagnosed that I realized just how much he did limit himself to certain foods. This, I would learn, was very typical in children with autism.
Red Cheeks, Red Ears or Bags Under the Eyes and Over-eating
Having never been closely exposed to a child with food allergies I did not know that red cheeks and /or ears and/or bags under the eyes were more often than not, a sign of some kind of food intolerance. I had no idea at all that this was the case and many, many parents to whom I spoke were also not aware of this.
Zachary often had either very red ears or very red cheeks. I also found he had bags under the eyes, but given his poor sleep patterns, I thought those were due more to a lack of proper sleep. Zachary had been on formula since he was three weeks old. Looking back at his pictures even that young, he always seemed to have red cheeks and ears – from a few weeks of age until well past two and a half. Yet, his doctor never brought it to my attention...and I never knew to ask. At his six week checkup, the doctor and I discussed how his feedings had to be slowed down…he was drinking too much milk. I recalled telling the doctor how he was always hungry. At six weeks, he was already well off the 100th percentile on the growth chart. I remembered Fred telling me how there were pretty tall men in his family and that Zachary would most likely take after some of his uncles or cousins. I slowed feedings down, but at ten weeks, Zachary checked in again, at the 100th percentile on the growth chart. So, again, we discussed slowing down feedings. Looking back, I wondered, why had the discussion been limited to “slowing down feedings”? Why had we not discussed the reason Zachary was eating so much in the first place? After all, was it not true that newborns, whether human or animal, eat only as much as necessary to fill themselves. Yet, Zachary was always wanting to drink milk. He was insatiable. I now understood why that was. He craved the “high”!
As he continued to drink, his cheeks continued to turn red. But, back then, I did not recognize this for what it was. A sign of a food intolerance. He was just two and a half months old; I figured his skin would get better with time and that his skin was this color because he was a newborn child. After all, he did have a big red birthmark right in the center of the forehead down to the bridge of his nose; so, I thought that red skin was a “normal” skin tone for him. Then came the “teething period” and the “it was probably just his teeth excuse”. Of course, looking back now, I realized Anika never had a problem with her cheeks being red...or her ears. Zachary’s skin was very dry too. On November 29th, after Zachary got up from a nap, I noticed the skin on his cheeks seemed “bumpy” and “cracked” and that slightly yellowish fluid was oozing out of his skin. His “normally” red cheeks had gotten much worse in one day.
Very concerned by the sudden change in his skin, I called the pediatrician’s office at 4:38 p.m. …no one called back. I called my father who was a practicing physician. He felt I should take him in. According to my father, you always had to take a skin rash seriously and have it looked at. The pediatrician’s office still had not called back by 6:00 p.m. (I had call waiting as well as voicemail, so I knew they had not) …so; I placed a second call to the pediatrician’s office. Since it was now past regular business hours, I went to the answering service. Of course, HMOs/PPOs screened calls and they usually preferred to have you come in the next day...at least that had been my experience. I emphasized the fact that I had spoken to my father, who was a practicing physician in another state and who stated I should have him looked at. I insisted on a referral by the on-call physician to have Zachary looked at that night. I stated I was taking him in to “immediate care”, the after-hours facility, and that they better make sure the referral was there by the time I arrived. By 7:00 p.m. or so, Zachary was looked at. First, the doctor came, looked at Zachary, asked me a couple of questions and went out. Then he came back in with another doctor. The other doctor looked at Zachary’s face and then the two of them went out of the room together. Shortly after, the first physician came back in, alone. He stated: “Well, I’ve consulted with another physician, and we both agree that your son is a direct admin to emergency”. “WHAT?” I said. “What for? What’s wrong with him?” He has what appears to be “Facial Cellulitis”, a staph infection. “How serious is this?” I said. He replied: “Well, it can be very serious if it gets to his brain”. I could barely swallow. I started to cry.
The doctor gave me a piece of paper and told me to go straight to emergency at the hospital down the street and have him admitted. He stated Zachary would probably have to be on a pretty strong dose of antibiotics. He would call ahead to let them know I was coming. I took Zachary, put his coat on quickly, picked him up in my arms and hurried off. I was a ball of nerves. As I made my way through the parking lot with Zachary in my arms, I placed a call on my cellular to my father and told him what had just happened. I asked him what he thought and whether Zachary could die from this. He stated: “It depends on how bad the infection is”…that was as good as a “yes” in my book. I was devastated. I rushed to emergency. It only took me about five minutes to get there. By then, I had now placed a call to Fred and told him about the doctor’s visit and about the conversation with my father. Fred and Anika came to meet me at the hospital. By the time they got there, Zachary was finally asleep.
I had also had the opportunity to speak with another physician who examined him in emergency upon his admission. This physician did not feel that a strong treatment of antibiotics would be necessary. He felt he could go with something a little less strong. The doctors at the hospital seemed to believe the rash on his face might be due to eczema. Zachary was put on an ointment called Bactroban, which would be applied three times daily for fourteen days. I was to take him in for a follow-up visit in two or three days to see how that was working. On January 2nd, I took him in to see his regular pediatrician. He thought the rash looked as though it was “resolving”. I was to come back after the fourteen days of treatment. Zachary already had an appointment scheduled for the 18th of January for his routing six-month examination and the doctor felt he could look at his cheeks then.
On January 15th, I was out of Bactroban and by 6:00 pm on January 16th, I noticed his cheeks were red again. I was totally stressed out over that. I decided to call the doctor again. Of course, I went to the answering service and once more, had to insist on having my son seen that night. I thought how they must just hate parents like me, those who would not wait until morning. Anyway, having gone through what I had in late November, I was not messing around… he was going in to “immediate care” to be looked at once more. I saw yet another physician. This one thought that yes, his cheeks were quite red but that since there was no swelling or tenderness and no “oozing”, that it was probably “just the way he was”. She explained that some children have redness of the skin, but that they usually outgrow it by the time they are two. She gave me a prescription for an ointment that I was to apply whenever I felt his cheeks were getting too red. She would provide enough for me for over a year.
What a relief! All right, I had a prescription for “this condition”. For Zachary, Fred, Anika and I, unfortunately, if we had only known...this “prescription” would only serve as a “face mask” hiding a deeper, underlying problem. Did not the fact that a “one year supply” was prescribed for an infant, in and of itself appear rather odd? Looking back, I certainly questioned it! So, there we were. Another sign missed and dismissed by both Fred and myself, and, by all five physicians who had examined his cheeks as well! Was there a lesson there? You bet there was!
Dislike of Certain Food Textures
Related to the limitation of food selection/choices was the fact that Zachary grew to like only certain food textures. Again, this was something that became more evident to me with the passage of time and only after he was diagnosed as having a problem. Meats were ok, but anything smooth, like Jell-O or pudding, he would seem to “gag” from... slowly pulling his tongue out and letting the food fall onto the floor. By the time he was two and a half even mashed potatoes were out. Crunchy foods were in. Zachary’s need for “crunching” brought out behaviors that were troubling, and confusing to watch.
For example, when he was thirty-nine months old, we were playing outside in the sandbox. Zachary took a handful of sand and put it in his mouth. Two days earlier, I had filled the sandbox with new play sand purchased at a local hardware store. Our sandbox had a cover on it, and therefore, I was not particularly worried about the sand containing animal feces. Anyway, I sat there, looking at Zachary, waiting for the inevitable reaction, the spitting out of the sand. It did not happen. Instead, he proceeded to “chew and swallow”. I was in total disbelief. I sat there, frozen, totally confused, yet, amazed by this behavior. I just could not believe what I had just seen. He then made a motion to put yet another handful of sand into his mouth. That was when I “snapped back to reality”, wiped the sand from his hands and took him back into the house to clean out his mouth. Later, at about age three and a half, Zachary would start eating chalk as well. I could not explain this behavior other than the fact it must somehow have been associated with his desire for very specific food textures.
For a period of about two months, right around the time that Zachary was two and a half, he engaged in another very odd behavior – gnawing. He literally chewed the drywall around the windows of his bedroom and my bedroom down to the metal framing. It did not matter how much we tried to stop this behavior, nothing we did worked. When he got up from a nap, even if he was up just a couple of minutes before we were in the room, he would clamp his teeth into the drywall just underneath a window and take bites out of the drywall, only to spit them out onto the floor. That was shortly after he had been diagnosed.
Zachary had constant bouts of diarrhea. Although I did not realize it at the time, this was one of the most common characteristics in children with autism. He also suffered somewhat from constipation, but the diarrhea was many, many times more frequent and more severe, and it got worse with time. Of course, every parent knew about the BRAT diet to treat diarrhea…bananas, rice, apples, and toast (the B.R.A.T. diet as they called it in medicine). That was what you were told to give your child whenever you called in about diarrhea problems. Sure, it stopped it, for a while. Again, we had simply been “masking” the true problem by following “protocol” for the treatment of diarrhea…we were treating “diarrhea” when we should have been treating “autism” that was manifesting itself through constant bouts of diarrhea. And those things we were told to give him to stop the diarrhea (bananas, apples, and toast, at least) actually only made his condition worse. He could not tolerate the phenols in these foods. Diarrhea, for autistic children such as Zachary, was simply a symptom of a deeper underlying problem and unknowingly, we were simply masking the problem again with B.R.A.T. foods..over and over again. We missed it completely, again!
A Special Note on Diarrhea: When yeast begins to “die off” (a good thing), that usually manifested by massive amounts/big bouts of diarrhea (something to be aware of and to watch for).
Although Zachary was not yet potty trained, he loved to flush the toilet. He could flush it twenty times in a row if I let him. Of course, again, I did not realize this, too, was a sign of autism. Fred, Anika and I had almost trained ourselves to now run to the bathroom upon hearing the first flush. Once, however, even that was not quickly enough. It was not until well after he was diagnosed as having a problem that I actually found Zachary in the bathroom one time with his head actually in the toilet, looking at the swirling action of the water. After that it would be close to one year before I would keep the bathroom doors unlocked.
Yeast Infections/Diaper Rash
Perhaps another of the most easily missed signs of autism was that of yeast infections. To most parents, they probably just look like your simple “diaper rash”. But, what exactly was a diaper rash? It was a reaction to what…to the acidity of the urine… to the lack of aeration due to having a diaper on? Or, was it something else? In Zachary’s case, it was that something else. It was a yeast infection mistaken for a “simple diaper rash”. After all, why get all upset over a diaper rash? We could just buy a cream to simply make it “go away”, right? Wrong! Once again, the cream simply masked the problem. The rash got better for a little while, only to come back. It was actually my babysitter, Jennifer, who suggested that maybe he had a yeast infection. As she stated: “I have watched a lot of kids and seen a lot of butts and that would be my guess”. I would not even have thought about that possibility. Where would he get a yeast infection? When it came right down to it, I did not know anything about the whole subject of yeast infections... nor on the signs of autism in general. Once again, I requested my son be looked at before day’s end. I was at work but called the pediatrician’s office from there at 11:20 in the morning. I worked in downtown Chicago but Fred was in the suburbs and he could take him in. I did not get a call back until after close of regular business hours. Once again, Zachary would go to “immediate care. Was I on some “black list” in that clinic that they could never call me back promptly? ” Who knows, but, sure enough, just as my babysitter had suspected, it was a yeast infection.
Zachary was just under a year old. Since I did not know that both red cheeks and yeast infections were signs of autism, I did not think anything further of it. Zachary did not have that many diaper rashes after that. I completely missed and dismissed this symptom as well.
A red circle around the anal area was also a sign of a yeast infection. With Zachary, the rash was all over, but over time, the red circle around the anus became more evident and the rest of the bottom cleared up. Every once in a while I still see a circle around his anus and thus, I think yeast infections, unfortunately, are an ongoing battle for these children.
Loss of Language/Labeling/Commands/Non-Sense Language
Zachary had said his first word in triplicate on May 2nd, 1998. Luckily, I kept a journal of these things and so, looking back was much simpler. I remembered the joy I had when he said “mama, mama, mama”. I was French Canadian and only spoke to him in French. By eighteen months, he only had about four words. The pediatrician spoke to me about the fact that maybe, because of the two languages, he was just a little slower. Boy, was I a fool for even letting him get that one past me. Anika had developed language just fine in a bilingual home, as have many other children. Fred told me that “his side” spoke quite late, that he was almost four when he said his first words. All right, I would give Zachary more time.
Zachary did develop a little more language, but then, he began to lose it again. It was my babysitter, Jennifer, who then suggested he get a hearing test. So, I called the pediatrician and insisted he get one. Funny thing though, in the medical records, it appeared as though they suggested it - another “odd” notation in Zachary’s file. Fred or I never remembered them telling us to “count” Zachary’s words and get back to them either, yet that was in there, too. We would certainly have remembered given our concerns. I can assure you they most certainly did not initiate this whole investigation into Zachary’s hearing or his delayed language. We practically had to beg to get them to do anything. What they did provide for us was a “consultation” with final assessment showing by the attending physician: “ Rule out hearing loss and speech delay”.
Fred had waited four hours or so to see this doctor and it turned out to be nothing more than an end of day five-minute consultation. Not a hearing test. Fred was very upset about it. He had spent four hours there thinking Zachary was actually going to get a hearing test, and instead, he was given a “quicky 5:00 p.m., five-minute, make sure there was a tongue in the mouth, a larynx, a nose and an ear on each side of the head consultation” that ruled out speech delay. There was no suggestion at all as to a possible problem...again, nothing! If there had been a tongue or ear missing, I was sure I would have already mentioned that to the regular pediatrician by now. That was on August 16th, 1999. How could Zachary keep seeing doctor after doctor and yet not one of them mentioned a food intolerance? The fact was simply that they were not looking for Zachary’s problem or did not want to admit it. All we were getting was the latest “five minute, quick fix visit”. When I learned the outcome of this latest particularly useless visit, I was rather upset. I later called to schedule a “real” hearing test. That “test” happened on October 20th, 1999. Again, as I looked back, it was not much of a “test” either. A few words were said and the technician would see if Zachary, as he sat on my lap in the test booth, looked in the direction from where the sound came. I had already told them that he could hear fine when it came to the human voice. She did not tell me anything I did not already know. They tested various sound frequencies, but nothing unusual showed up...surprise, surprise! To them, Zachary appeared “normal”. Yet, to this day, he was still quite sensitive to various sounds.
So, again, I had been “lulled” into thinking my son was fine. It was just that “boys were slower”, as I had so often heard. I would give him more time. After all, Fred had a nephew (his sister’s son) who did not speak until he was well over three. Zachary would probably just be the same way. Hearing problems had now been dismissed.
Zachary had actually lost quite a few words he had once used. When he did finally develop language, it was more “labeling” and “commands” than conversation. If I told him the name of an object just once, he knew it. When I said, “what’s that”, he could easily tell me the name of the object. Anything that had to do with labeling things came easily to him. He also learned to speak in “commands”, using small, consistent phrases like “open the door”, “I want ----“. Normal conversation though simply was not there!
Echolia (Repetition of Words)
When Zachary finally did begin to develop more speech, long after he was diagnosed as even having a problem, his speech was primarily a condition known as echolia whereby he simply repeated words. Since by the time he actually said more words we knew there was a problem, I did recognize his speech for what it was when it did come. By the time Zachary knew the alphabet, he could repeat it up to ten times before finally falling asleep. He did repeat everything he heard and he repeated it over and over again. This was a well-known condition in autistic children.
No Response When Called By Name
Zachary also did not respond to his name at all when he was called. It was as though he could not hear me. I had always found this troubling, but always brushed it off to the fact that he was “so interested” in his other activities. No matter what I said to get his attention, it was as though he could not hear me at all. Zachary’s babysitter had commented about that on several occasions. I now know that this, too, was a sign of autism.
Sense of Smell
Zachary’s sense of smell did not seem to be affected, other than his general dislike for any new food. He just had to look at a new food and would turn away. Of course, I had no way of proving whether or not he could smell it from far away and smelling it was why he would run off as opposed to a visual cue of something being new. The one thing about his sense of smell I did notice from quite early on was that he liked to be “sniffed” around the ears, in his hair, on his tummy, and especially, around the neck. Actually, “sniffing” him often served as a method of calming him down. If he got upset, often all I had to do was to start sniffing him around the neck and he would calm right down. This actually also helped him to fall asleep. I never thought much of anything other than the fact that it was kind of “cute”. In fact, he “sniffed” my neck and ears first and that was how I came to recognize and use this behavior to calm him down.
Although I am certain there were many more variations of these behaviors in autistic children, I wanted to provide, best I could remember, all those things I was now convinced were related to Zachary’s condition.
So there they were…the signs...signs so easily missed or dismissed. If only, if only I had known what to look for... or how to put it all together!