The Myth of Autism

by Dr. Michael J. Goldberg, Elyse Goldberg, Dr. Ismael Mena

  “Jaxon”

  I had a very hard time getting pregnant and staying pregnant (but I was oh so happy being pregnant, especially when I found out it was with twins!). I had my first contractions at nineteen weeks, when I was put on bed rest for a week and given a course of antibiotics for a suspected infection. At twenty-two weeks, I was in labor. I was admitted to our local hospital for one night and given magnesium sulfate via IV to see if it would stop the contractions. The next morning, I was transported by ambulance 1.5 hours from home and admitted to a hospital with a level IV NICU. I stayed there for twenty-eight days, contracting the whole time. My daughter was head down, engaged in the birth canal and I was dilated to 3 cm, so I was put in Trendelenburg position (head down, feet up), and told to stay on my left side as much as possible. I relied on my nurses for everything. My husband stayed by my side as much as possible the first week, my mother the second week, my brother in law the third week. The fourth week, friends stepped in to keep me company. By the twenty-eighth day, labor was unstoppable, and my beautiful babies were born at twenty-six weeks and two days gestation. Beautiful in our eyes, but in reality, they looked a bit like what I might describe as aliens. They weighed just two pounds each, which was quite large for twenty-six-week micropreemies.

  We joke now that our daughter was a NICU troublemaker, but our son was let out early for good behavior. He needed very little oxygen support for being born so early, and he was considered a grower-feeder by the fourth week. It meant I could hold him anytime the NICU was open, and feed him and change his diapers and otherwise start bonding with him. He seemed to melt into me when I kangaroo’d him, where I held him skin-to-skin against my chest for long periods of time. We were still tethered to his incubator by wires and tubes that recorded his respirations and heartbeats, which I could watch on a monitor as they lulled me into a sense of security. When we brought him home three and a half weeks before his due date, he was, for all intents and purposes, a typical, healthy baby. Which was a miracle. They say God only gives you what you can handle. His twin sister was released from the NICU after I begged and pleaded to take her home with a gavage feeding tube. I could not visit her in the NICU when I had my son to care for, and the challenge of trying to be in two places at once was more than I could bear. They both needed me equally, but NICU rules prohibited him from passing through the doors once he had been exposed to the outside world. She was experiencing intense reflux, so learning to take a bottle was proving a challenge, and her overscheduled day nurse did not have the time or patience to nurture our daughter the way she needed. She had had heart surgery when they were eight days old, then developed pneumonia and her lungs were, in the words of one of the neonatologists, “crap.” She would take a couple of sips from a bottle, then pull away to take deep gulps of air. It made the reflux worse, and on top of that, the reflux made feeding painful.

  We brought them home on a hot summer day. He had spent seventyeight days in the NICU; she one hundred. I had lived in a wonderful Ronald McDonald House from the time I had been released from the hospital, after spending thirty-one days there myself, 1.5 hours from home and my husband and our beautiful, sweet dog. Nothing had felt better in my whole life than to walk back through my front door with both of my babies in my arms.

  The first few weeks home were mostly a blur. Fortunately, we had the love of our families all around us, and nonstop visitors the first five weeks we were home from the hospital. Thank God, because I soon learned I could not put my daughter down for very long. She needed to be upright to help with her reflux and her breathing. Our first night home, she developed a very strange cry. Unbeknownst to me, a home health nurse appeared from nowhere (actually, she had been sent by the NICU to check in on us), which was quite a blessing because my daughter’s oxygen levels were in the fifties. This started my allconsuming preoccupation with my daughter during their first two years of life. I don’t remember very much about my son as an infant and a toddler, except that he was the easiest “dream baby,” and I adored him. He slept a lot, and did not fuss much when he was awake, but he seemed to love cuddling, and he felt so good when I held him. He always made me feel as though everything in the world was just right. He had this funny habit of kicking his feet really, really hard until his socks were off, then he would settle back down and sleep for five or six hours at a time. When he was really fussy for some reason (reflux?), we would buckle him into his car seat or very early on he loved his swing and he would settle right down. We were visited weekly by the home health nurse. She would measure and weigh my babies, which was always very stressful, because my daughter was not gaining weight like she should have been. My son was growing just fine, but one day the nurse pointed out that he was not tracking an object she was moving back and forth. He also was not clasping his hands in front of him like most babies his age.

  Their age was subjective for the first three years. There was their actual age (the time since their actual birth) and their adjusted age (the age they would be—3.5 months younger—if they had been born on their due date). Every time they were assessed, we were told they may/may not be delayed based on either of these “ages.” I felt like they (we) were constantly under some kind of microscope.

  At twelve months (actual), I noticed that he didn’t play in the sandbox at the playground like his sister did. He preferred to pull himself up on the wheel of our jogger stroller and kind of rock back and forth. He was fascinated with wheels of all kinds, and would try to crawl after kids riding their bikes around the playground. I had to start watching him very carefully to make sure he didn’t get his tiny little fingers stuck in any spokes or crushed under a rolling tire. At home, he played a funny game with himself that cracked us up! He had a “giggle ball” that made funny sounds as it rolled around. It was not perfectly round, either, so it didn’t roll like a typical ball. He would bat at it and it would roll under the furniture, and he would laugh and chase it as fast as he could (not walking yet, it was kind of a commando-scramble), then get himself tangled in the legs of the furniture. He would seem to be getting frustrated, but then he would figure it out on his own, extricate himself, and start all over again. He also had a favorite baby wind chime toy, and he would bat at it for very long periods of time. I loved the pleasant tinkling sound it made, so it didn’t bother me, until one day, I realized he didn’t really play with their millions of toys like his twin sister did.

  At ten months (actual), she had a favorite book of Noah’s ark animals. She would point to every one of them and ask, “Dat?” and look to me until I answered. Her first word was at eleven months, “guck” (for duck). She loves anything to do with animals. He would spend all his time (when he wasn’t sleeping, which he did for hours every day) chewing on a set of stainless-steel measuring spoons, chasing the “giggle ball,” batting at the baby-chime, or dance-flying in the baby jumper. He could really get it going and then hold his feet up and fly through the air like Peter Pan!

  I asked their OT if there could be a problem with him, right around the time they were fourteen months old. She said he was really too young to say with any certainty, but that he was being watched closely, and that she was encouraged because he responded really well when she had done any work with him to catch him up to his developmental milestones.

  For example, when he should have been using his hands to grasp objects, he kept them fisted. The OT did some work with him, and in a matter of a couple of days (not sessions, but days) he was using his hands. She also got them to turn over on schedule and pull up and encouraged us to do floor-time exercises from three months forward.

  At seventeen months (fourteen adjusted), his twin started walking. She was much smaller, but far more agile and—seemingly—stronger. One day, as she flew (I mean ran) around the house, I caught him watching her intently. I thought to myself, “He’s going to start walking!” We had consulted with a PT, who had already done an evaluation and determined that he did have some muscle weakness (his hips seemed to give out when h
e tried to use their toy meant to help them walk, like the toddler version of a walker), and she had scheduled an appointment to work with him. The next day after watching his sister, he stood up in the middle of the room and walked across it, holding on to nothing! He never received PT to help with walking. He didn’t need or receive PT until he started preschool, and he received adaptive PE.

  That’s our boy. He amazes us all the time. He has always responded really well to most of the therapies and interventions. He has been a patient of Dr. Goldberg for the last 4.5 years. I really don’t know where he would be if it weren’t for the NIDS protocol and Dr. G. But I’m getting ahead of myself. Let me go back to when he was a toddler and started showing signs of illness.

  My son was always very sweet and affectionate with us. He ran to the front door when my husband came home from work, and allowed me to cuddle with him at naptime and bedtime. He loved singing songs like “Itsy Bitsy Spider,” holding his little hand to mine so we could do the motions together, even though he used no words to communicate with us. His twin and I always seemed to know exactly what he needed. He never had tantrums or cried much. He always “went with the flow” and he could—and did—fall asleep anywhere. He has always made up lost sleep. I was worried about his lack of words, but not too much. The ST, who was working with my daughter for ongoing feeding challenges (which turned out to be due to an intolerance to corn), kept an eye on him.

  At eighteen months (actual), both of my babies received a flu shot, then came down with rotovirus a few days later. Looking back, I believe this was his “tipping point.” He was sick from that point forward. He started getting rashes around his mouth and on his body when he ate certain foods that had never been a problem before. He started getting ear infections and had some respiratory infections (lower and upper), and he had strep a few times. He had an ear infection or fluid in his ears from eighteen months to four and a half years old, and three sets of ear tubes. His tonsils were very large and red until he was seven. His adenoids were removed when he was four, but it didn’t help. When he got sick, it would last for months. He had thick, green mucous coming out of his nose for at least a year. When he was three and a few months, he started drooling. Three-year-olds don’t just start drooling. I took him to the dentist and the pediatrician, but neither had an explanation.

  I am not against vaccinations, but I think they need to be given a lot more intelligently than they were given to my son. He was given five vaccinations in the NICU, one month before his due date when he weighed four pounds. Two months later, he was given four more in one day. All of his vaccinations were given on schedule, often when he was sick. At fourteen months (actual), he was being unsuccessfully introduced to cow’s milk and given the MMR at the same time.

  The illnesses help explain his development (his developmental delays, I should say). When my babies were two, I started taking them to a prepreschool. It was really fun to go there one day a week, especially since we lived in a remote area, they were considered medically fragile (my daughter, especially) and we didn’t have many options for socializing. He would get so excited when we went there, and he would zing from one toy to another. The director commented once to me, in a not very kind or informative way, “At this age, he should be able to sit in circle time.” Circle time was completely new to me. My daughter had no problem sitting on my lap for fifteen to twenty minutes, singing the songs with the other toddlers and listening to a story. As a toddler he was a huge fan of Winnie the Pooh and had all the characters. He has always loved Disneyland. He also loved Cars and loved to play with cars like most toddlers. So when we were at the school, I thought he was just very excited to be in a new environment and wanted to experience as much of it as possible. We tried “Mommy & Me” music, but the instructor asked us not to come back. The class was held in her home (which was not toddler-proofed) and she feared for his safety. He refused to participate and instead ran from one thing in her home to another while I tried to provide his twin sister with an enriching experience.

  At two years, ten months, I tried to enroll him in a Montessori preschool. My thinking was that he just needed regular exposure to an environment away from our home. He was so clearly different in that environment; it was a huge eye-opener for me. He was definitely in his own world at the preschool, and did not notice the other children or one of the two directors (he latched on to the blond director, no problem, but wanted/needed nothing to do with anyone else). Of concern at this time was the fact that he did not point at things, did not have good eye contact, and tended to go off by himself. A developmental psychologist did a full evaluation, observing my son in the preschool, our home, and his office. He also interviewed my husband and me extensively. He told us he was so sorry, but that he was going to give him a diagnosis of autism spectrum disorder. He told us he wasn’t 100 percent sure as he didn’t fit the diagnosis perfectly, but he didn’t fit other diagnoses, either. My son, no matter what his diagnosis was, needed help, and he needed it right away. He was delayed in speech, motor, and social skills. The psychologist gave him the diagnosis so my son could receive the services he needed, and he felt that someday, we would come back to him and the diagnosis would no longer fit. We were devastated and numb, but it didn’t take me long to start trying to figure out what to do to help him.

  One of the first things I did was attend a TACA parent meeting. The guest speaker that first night had written a book about the journey she had been on with her son. Dr. Goldberg was one of the main characters. I bought her book that night and finished reading it before I went to sleep. The next day, I contacted Dr. Goldberg’s office to get an intake packet. I returned the completed packet within a week. It was at least one inch thick with my very young son’s history. We got our first appointment for approximately three months later. It was while waiting for this appointment that my now three-year-old son started drooling.

  We also started the GFCF diet during the wait. I also removed soy and preservatives. I saw some immediate changes in his behavior. He was less hyper, for one. We were desperate to get his twin sister to grow and gain weight during this time, and I had even resorted to Pop-Tarts as a snack at the playground. I noticed that within a few minutes after eating them, he was clobbering her on the head as he rode behind her in our double stroller. That’s when I started limiting sugar and food dyes.

  At our first appointment with Dr. G., I was so impressed because he had read and studied my son’s history. His chart was full of yellow sticky notes, and Dr. G. went through it with me and asked questions for clarification. At the end of the three-hour visit, he told me my son does not have autism, and that he could help him. He ran blood work, and we headed home. I felt like we were in good hands and my son would be well cared for. My mom was at the visit, as well. She has worked for medical researchers for years, and she knew a lot of what Dr. G. told us about retroviruses and how my son became so sick, and what could and would be done to help him. This really “fit” for me, since my son also has a diagnosis of cerebral palsy. I had read that thirty-some percent of preemies that developed CP developed it due to exposure to a herpes-related virus around the time of their birth, and not due to a hypoxic event. My son was given five vaccinations at one time in the NICU, one month before his due date and another four vaccinations at one time two months later. I believe these vaccinations helped compromise his already-immature immune system. If the vaccinations themselves didn’t contain the viruses (which they likely did), then his immune system was unable to defend him against exposure while he was assimilating them.

  Not long afterward, another mom recommended a local osteopath who also had cerebral palsy. I took my son to him for a consultation. Without discussing with him Dr. G. or the protocol, he told me, too, that my son did not have autism and that he could become well.

  The NIDS protocol has included antivirals (Famvir, Valtrex, Zovirax), antifungals (Diflucan, Nizoral), low doses of a SSRI (by far the scariest part for me to give my son, until I saw how they hel
ped his focus and attention), anti-inflammatory diet (difficult at times until we accustomed to it, but so essential), probiotics, antihistamines, Tenex (for impulsivity), DHA-EPA, a good multivitamin, and iron. We also had to use mineral oil for years for chronic constipation, which is now resolved.

  His therapies have included floor time, ABA, speech, occupational therapy, physical therapy and music therapy, plus Brain Highways and, of course, the NIDS protocol. He wore braces on his legs because he walked on his toes (he even walked with his toes curled under!).

  Fast-forward to today. My son is eight and in second grade. He has been fully included in a typical classroom since kindergarten. He has missed one day for illness this year. That’s almost a miracle. In preschool he missed weeks’ worth of school for illness. In kindergarten, he missed approximately twenty days. Last year, it was less than ten. He has several friends at school, and he is well liked by his peers and the staff. His teachers love him. He is at or above academic level in almost every area. He is regulated most of the time, and he has even learned how to help regulate himself. His language is still somewhat delayed, but he is becoming conversational and is quite witty and has a great sense of humor. During the summer between second and third grades, he will spend several hours working with FastForward to help his language comprehension develop and hopefully catch him up developmentally 100 percent. He loves being on the go, camping with his dad and Adventure Guides, roller coasters, riding bikes, going to the beach and Boogie Boarding, and playing with his twin sister and his friends at school, swimming, and taking pictures with his camera. He is a whiz on the computer, too. He is not 100 percent recovered yet, but I do foresee full recovery, and he now appears pretty typical, at least in most situations. I know he will drive a car, attend college, have a career, live independently, and, if he wants, have a family of his own. He will be a productive member of society and contribute instead of needing a lifetime of care. We were blessed with early intervention, with people who knew what they were doing, and who really cared about my son, and I am thankful for people like Dr. Goldberg, who is willing to try new protocols and is stretching out to find the answers for these kids who are so very special. Our son is an amazing gift and is a delight to everyone who knows him. This journey has been physically, emotionally, and financially exhausting, but also has enriched and touched our family, our school district, our friends, and the therapists and medical community in so many wonderful ways. Our son is full of surprises for us all, and he is one of the happiest people I know. I feel honored I was chosen to be his mom.