Tuesday, February 9, 2010

Early Concerns to Autism Spectrum Diagnosis, The Toddler Years

As we moved beyond's J.'s first birthday, we were amazed at some of the skills that we saw developing. He rapidly added new words to his vocabulary, and his articulation was, for the most part, clear and distinct. However, subtle gaps in J.'s development began to slowly emerge. As new parents, some of these were quite difficult to recognize. It is important to note that developmental delays associated with some autistic spectrum diagnoses can be difficult to detect with commonly used developmental screening tools, such as the Denver Developmental Screening Test which our pediatrician uses.

Some early indicators of autism spectrum disorders include: problems with eye contact, orienting to one’s name, joint attention, pretend play, imitation, nonverbal communication, and language development. Most of these indicators were not assessed by out doctor's developmental checklists that we filled out at each visit. Because our son seemed to respond to his name and was actually advanced in language development, we thought there was no reason to be concerned.

During the second year of J.'s life, we took pride in his noteworthy accomplishments, and didn't notice the subtle areas in which his development lagged behind. He began to speak in short sentences by around 15 months. "Open the gate, go see Mommy?" J. began to sing parts of a few simple songs. He could also accurately name almost any shape, clearly articulating the words. Not just square, circle, triangle, but quickly moving on to even more complex shapes, like cross and octagon! He could also accurately name the color of each shape in his shape sorter. At 18 months he could count to 10, and he especially enjoyed counting the stairs as he climbed them. By 20 months J. could sing the entire alphabet song from memory. Before the age of two he learned to recite his address. By two years of age he could accurately name every capital letter, just from playing with his Fridge Phonics magnets. We read the book Ten Wriggly Wiggly Caterpillars, and within a couple weeks he was recognizing and naming the numbers,as well as counting the caterpillars. He appeared to understand the meaning of numbers, to grasp the fact that numbers indicate quantity.

In other ways, however, J.'s development seemed to lag. But there weren't really glaringly obvious red flags, at least not for us as first time parents. For example, J. liked blocks, but if they fell when he was trying to stack them, it was all over. He wanted us to build a tower so that he could knock them down. So I bought him duplo, and bristle blocks. I didn't really think much of it at the time. I believe that my son pointed to show us things, but when we pointed, he looked at our hands instead of what we were pointing at. He forgot to look at us when we would throw a ball to him to catch. There was also no pretend play developing.

My son did make eye contact during social interactions, but only briefly, and his gaze quickly and frequently shifted elsewhere. What we didn't realize then, was how much information is missed when eye contact is not maintained. Neurotypical children learn during the first year of life that the eyes convey important information. We often don't realize how many clues we gather by looking at another person's eyes. For example, most of us realize intuitively that what a person is looking at usually offers a valuable clue about what he or she is thinking. Most of us know, by looking at another person's eyes, in which general direction that person is looking. Most of us are able to use that information to guess what the other person is looking at and thinking about. But this information is often missed by an ASD child, as are subtle, or even fairly obvious mood changes in others. And looking back through a number of photos of J. in the first year or two of life, I saw only one in which J. is gazing directly into the eyes of another person. In that photo, he was less than 2 weeks old.

As my son gradually weaned from the breast to solid foods, our cuddle time seemed to rapidly disappear. He really had very little interest in being held when he was not nursing. He was in constant motion, but he didn't focus on any one thing for very long. My husband liked to refer to his behavior as "constant motion, constant destruction." J. had a real talent for getting into things he shouldn't. All the high spots in our house were filled with items that we needed to place out of reach. It looked like we were preparing for a flood. Even simple things, like the board books, needed to be kept out of reach when we weren't sitting and reading with J. Otherwise, J. would literally eat the books. Quite a few of the board books ended up having large bites taken out of them. The corners apparently were the best part!

When J. was around two years old, we began to enter a stage which I now like to refer to as "playdate disasters." J. absolutely enjoyed getting together with other children, but the visits sometimes were not as enjoyable for his friends. One of the problems we saw appeared to be impulsive behaviors combined with a lack of age appropriate awareness of cause and effect. Several incidents come to mind. The first one involved a set of wooden play food that we had recently acquired. I brought the toys out for him to share with his young friends who had come to visit. They children played nicely for a while, side by side, though not interacting, as I chatted with their mother nearby. Suddenly and without warning, J. picked up a wooden apple (which closely resembled a ball) and threw it at one of the children with all his might, striking his friend in the head. J. had thrown the toy hard enough to leave a "knot" on his friend's head, but he appeared totally dumbfounded by the outcome of his actions. I spoke to my son about the incident and he apologized to the friend when asked. However, within 6 months we had a similar incident, where J. struck the same child in the back with a wooden, toy sword with a great deal of force. This was not an act of anger. J. was equally dumbfounded by his friend's reaction, as he apparently believed that this was the normal, expected use of the toy. Finally, at 3 years of age, J. was playing with a group of children who were chasing each other around with blades of grass, tickling. J. picked up a rock and, when he had caught up with another child, hit the child on the head. He looked shocked when the other child began crying, as if it were totally unexpected. Fortunately, this was the last of these type of incidents, but, needless to say, we found it a bit difficult to find playdates for J. at this point.

The final red flags for an autism spectrum diagnosis were more subtle. A friend or two had pointed out that our son had an unusual manner of speaking during his third year. One suggested that we speak to our pediatrician about it, but was very vague about what it was that she was concerned about. Now that I know more about the speech patterns associated with Aspergers, I would guess that what she was referring to was a rather monotone manner of speaking, with little or no inflection. Since J. also had a rather advanced vocabulary for his age, she might have been referring to a pattern of careful and precise speech that is typical for Asperger's children, earning them the label of "little professor." Whatever it was that she noticed, our pediatrician was apparently not familiar with, because he found no specific problem at that point.

We did notice, that our son had an unusual manner of both asking questions and responding to them. However, since he was our first child, we assumed that this was a part of normal speech development, and were unaware that this signified a problem. If someone asked J. "How are you?", he would respond with some form of repeating the question, such as "How am I?" If J. wanted to ask an adult for something, he would phrase the question in a very odd manner. The most memorable example of this occurred when J. was about 28 months old. I had brought him to a McDonald's with a large play area so he could have a little outdoor time in a safe area. J. had to go down a short flight of steps to get to the play area. He had a tendency to be overly cautious about stairs, so even though he was holding the railing, he also wanted to hold my hand. Except that I was not sitting at the table nearest to the stairs. Another adult was sitting at that table, probably the father of another child. J. looked up at the man, and asked "Do you want to hold Mommy's hand?" Yes, I wished for a hole in the floor to swallow me up, but the man thankfully realized what J. meant, and responded "No, I think you want to hold Mommy's hand." It wasn't until years later that I became aware that these are forms of echolalia, which frequently occurs in toddlers with autism. J. also repeated lines from movies frequently, which is yet another form of echolalia. Verbal autistic children do often echo back what they hear, but it can be and is often delayed so they repeat what they have heard later on and in another context. This is clearly what we saw with our son, but unfortunately did not understand it well enough to bring to the attention of our pediatrician.

To be continued...

Want to see some video clips comparing normally developing infants and toddlers with children with social cognitive deficits, such as autism? Autism Speaks has a wonderful autism video glossary that you can use if you register (for free).

Sunday, February 7, 2010

Early Concerns to Autism Spectrum Diagnosis, the First Year

Our oldest son was diagnosed with Asperger Syndrome at the age of 5 years. For me, it was in many ways, a relief. An explanation for what was from the start, a difficult transition into parenting a child. A reason for the problem behaviors that were so hard to work through with our son. An answer to some of the puzzling questions about J.

While the timeline begins to fade from view, there are still many memories that come to mind when thinking back to the first days and months with J., now nearly 8 years of age. He was our first child, and despite my experiences working as a pediatric nurse, often in the Newborn Special Care Unit, the beginning of motherhood was rocky and unfamiliar. My recovery from his birth was painful and it was accompanied by insomnia, anxiety, and difficulties with breastfeeding.

We brought our son home from the hospital about 36 hours after his birth. We could have stayed another night, but I requested an early discharge, thinking that I would be able to sleep better and be more comfortable at home. Sleep problems continued, and breastfeeding was difficult and painful. My doctor prescribed Ambien to help me sleep for the first couple of weeks. I was put on antibiotics about 10 days after J.'s birth for a urinary tract infection. Though my postpartum symptoms gradually improved, the antibiotics I was taking seemed to make my son very irritable. At 2 weeks, my son was still below his birthweight, but only by an ounce. He received his first vaccination at this time, for Hepatitis B. I went to see a lactation consultant to work on breastfeeding, which continued to be painful. The irritability continued, but we were hopeful that things would improve once I had finished the course of antibiotics.

The lactation consultant, a pediatrician whose practice focused solely on breastfeeding medicine, diagnosed thrush as the cause of painful breastfeeding. We supplemented my son with about one bottle of formula per day to help him catch up a little with weight gain, but she was not overly concerned. I pumped while his father fed him the bottle every evening. My son began gaining more quickly, but I noticed that the formula seemed to make him more irritable at night, so we stopped it quickly. Through reading internet sources and speaking with the IBCLC, I quickly became aware that I had far more milk than I needed for my baby. Though my son wanted to nurse constantly and for hours on end, he choked with every letdown, clamped his jaws, pulled and tugged, and had some serious diaper blowouts. He grew rapidly in both length and weight. He continued to be very colicky for the first 4 months or so.

The IBCLC referred to my son as a "Zero to 60 baby." He could go from asleep to screaming bloody murder in about 3 seconds flat. We tried Mylicon. We tried gripe water. Nothing seemed to help much. He also earned the description of "one of those babies that swears." We wanted to practice attachment parenting, but this high need baby was a serious challenge.

There were a few concerns in the early months that, in retrospect, were probably sensory in nature. While my son did seem to have a great enjoyment for music, he certainly seemed to hate the mobile that I had chosen for him, at least at first. When I placed him under the mobile he would scream and look away. When the mobile was detached and he only heard the music, he was more likely to be calm and listen briefly. We also had a "Kick and Play" type gym that he seemed to enjoy occasionally, but he would kick it with so much force that it would quickly slide away from him. One he had teeth, he chewed his toys more like a puppy than a baby. I could not believe the deep gouges that J. could put into a teething toy. I shudder to think of what types of plastic he probably ingested.

As the months passed, J. began to meet some developmental milestones, seemingly in timely fashion. But something didn't seem quite right. He rolled over maybe once or twice by the time he was 6 months old. Generally when placed on the floor, he would flail helplessly like a beetle that was turned onto its back. He would scream until I picked him up. Tummy time seemed like a wonderful way to make him very angry, very fast. But he continued to meet gross and fine motor milestones on target. Sort of. For example, he did go through the motions of crawling, briefly. But what he mainly did was drag himself around on his butt. When he learned to pull himself up and cruise, that was pretty much the end of any attempt at crawling. At 12 1/2 months, he began to walk.

However, speech was a different story. Our son made a lot of sounds very early on. When he was a few months old, a nurse who helped run a mother's group I attended pointed out how my son was very attentive to the conversation. I looked at J., and saw that he was following the conversation around the room, turning his head and fixing his gaze directly on whoever was speaking. I recall taking him for his 4 month checkup. He was babbling away, having a wonderful conversation in baby-talk. The nurse said "He's going to talk early." And she was right. At 7 months, J. uttered his first word. My husband noticed it before I did, but I didn't believe him. Then I saw J. look up at a photograph on the wall of our dog. He said "Kay-ee." My 7 month old son had just said the name of our dog, Katie. And he knew exactly what he was talking about. By 9 months, my son had a half dozen words under his belt, and his speech was quite intelligible.

During the second half of his first year, my son continued to nurse very frequently, though the marathon sessions were slightly less frequent. I started him on some solid foods, mainly preparing my own baby food in batches. We used some organic jarred food occasionally. I tried to introduce a variety of vegetables and fruits. We also made a homemade porridge from brown rice and later added a few types of beans. He liked sweet foods but introducing new foods was very difficult. Being anxious to see him cut back a little on the constant nursing, and not realizing the importance of developing a taste for a variety of foods, I simply mixed the new foods with banana or sweet potato. Things that he already liked hid the new foods. By the time he was a toddler, mealtime was beginning to become a battle. But even with his preferred foods, we noticed some difficulties. As a toddler, J. began to eat preferred foods very rapidly without chewing. Sometimes he would overeat, vomit his entire meal, and then ask for more food.

Speaking of battles, somehow J. missed the memo on naps for babies. While my son slept very well between feedings at night by about 6 months of age, daytime was a whole different matter. In the early months, it was difficult to move him at all once he was asleep. I would nurse him to sleep, then slide him from our bed into his cosleeper, at which point he would immediately awaken. He would scream until I nursed him, yet again. He slept in our bed for a while, and when I caught up on my own sleep, I tried moving him to the cosleeper again. Eventually we worked that out, and we all rested better at night. But I still found the lack of a clear napping pattern to be quite frustrating. He would sleep, but wanted to remain latched on the entire time he was asleep. By the time he was approaching one year, I managed to work in an afternoon nap for J. through a combination of cry-it-out and using a pacifier. Eventually he could be transitioned from breast, to pacifier, to crib. It wasn't an easy feat to accomplish, though. For the record, I no longer believe that crying it out is an answer to sleep problems. At the time, I felt desperate for just a little time to myself, a brief reprieve from the very intense 24-7 of parenting J.

To be continued...