Chapter from the book
Recovering Autistic Children
Edited Stephen M. Edelson, Ph.D. and Bernard Rimland, Ph.D.
Against the Odds:
A Story about Nikolai Young
By Robin and George Young, M.D.
Robin and George Young live in Portland, Oregon, with their son, Nikolai, who has recovered from autism. Nikolai was born in June 1998; this story was written in February 2002.
My name is Nikolai Young, I am 3 1/2 years old, and I would like to tell you about my heritage and my life.
My father is of Russian heritage and was born in Poland while his parents were fleeing their native Russia and communism. He was born prematurely, with no resources; it was feared he would not live. He survived, however, and after his birth the family continued their journey into displaced persons' camps in Austria, where his sister was born. When he was four, the family journeyed to Santiago, Chile. From the age of four until he was 17, they lived in Santiago. His family, who had very little money, struggled for thirteen years, after which they emigrated to America in 1962. They had a total of $100 for a family of four when they arrived in North Carolina aboard a cargo ship. When they settled at their final destination in New York City, everyone worked and also struggled to learn English, as they had struggled to learn Spanish in South America. Eventually, my father would serve in the U.S. military (Vietnam veteran), work, graduate from Columbia University and then from George Washington University Medical School, and complete his internship and residency in radiology at the University of Minnesota. His is a true immigrant success story. He retains his fluency in Russian and Spanish, and continues his Russian Orthodox faith (my great grandfather was a Russian Orthodox priest).
My mother was born and raised on a farm in southwestern Minnesota. She, too, had meager economic resources. However, she had something far more important: a loving family who instilled in her a strong work ethic, and the kind of values about which Garrison Keillor sometimes speaks—Scandinavian honesty, kindness, and reserve (although the reserve has been replaced by a desire to express and understand thoughts and feelings openly). She was raised in the Lutheran faith, and is now searching for a worship community to join. Interested in the commonality of all faiths, she dreams of taking additional religious studies/comparative religion classes, as she did in college. She graduated from Macalester College in St. Paul, Minnesota, by virtue of scholarships, loans, and work. Before my birth, my mother worked for Hewlett-Packard in the field of Human Resources in St. Paul, attended graduate school in industrial relations/adult learning theory, and served as Human Resources Director for Clatsop County, Oregon.
My birth was a long-time dream of my mother, who over a period of years had endured several abdominal surgeries for severe endometriosis. My father had had a vasectomy after my two older half-siblings were born, and went through two reversal surgeries. I was a “high-tech” baby, conceived using in vitro fertilization and intracytoplasmic sperm injection (ICSI); my conception, especially on the first attempt, was truly against the odds.
My first 3 1/2 years of life have been filled with both love and suffering. I was given my first vaccination at 12 hours of age in the hospital, for hepatitis B; it contained thimerosal (a preservative that is nearly 50% mercury). My parents believe this was the first assault on my intestines and my immature immune system. My mother thought it odd that I didn't seem to sleep very much in the hospital—my eyes were wide open most of the time. After I got home, I was increasingly fussy. I would pull up my legs and cry incessantly. I was hungry—I would go to my mother's breast to nurse, but I would pull quickly away, screaming. The terrible pain and cramps I experienced culminated in bright red blood in my diaper at three months of age. My stools were like oil, and obviously distressing. At my mother's insistence, a sigmoidoscopy performed at Oregon Health Sciences University (OHSU) showed severe colitis, which is not normal for an infant, but with a tissue biopsy insufficient to allow pathologists to diagnose the cause. My mother and father were left to their own deductive reasoning. My mother decided to eliminate all possible allergenic agents from her diet. Because I was breastfeeding, I got much better. It was only when my pediatrician started encouraging my mother to broaden my diet and introduce new foods, along with my continuing vaccination regimen, that I started a very slow and progressive process of becoming sicker. My parents believe that up to the time I was 33 months of age, my intestines were damaged by the thimerosal in the vaccines, the measles virus from the MMR vaccine (which also may have caused an autoimmune response in my brain), and the by-products of gluten and casein in my diet. Because my intestines were probably littered with tiny holes, gluten and casein molecules passed into my bloodstream, where they entered my brain as opioid-acting chemicals. Depending upon different theories, I was being subjected to either a heroin-like substance or a PCP-like substance every time I ingested gluten or casein. Because my digestive system was damaged, I was in effect malnourished—I was not absorbing the nutrients my parents were giving me. I was plagued by constant constipation, occasional diarrhea, terrible eczema on my hands and arms, a rectal abscess, and dark circles under my eyes. There were small welts on my face that you could see in the right light. My stomach was distended longer than the normal “baby tummy.” I had unexplained episodes of high fevers and vomiting. Once I was hospitalized, because it was feared I might have meningococcal disease; there was never an explanation for the very high fever and red rash I developed at the end of that episode. I seemed to be developing a higher-than-normal tolerance to pain. I never slept through the night, and woke up frequently. I would sometimes laugh for a long time, for no apparent reason. Over time I continued to acquire words, but was not putting them together or answering questions. I was extremely hyperactive. My eye contact was becoming terrible—I was looking through or past people (I was probably seeing fragmented images at this point in time). I would not listen to a story or engage in play. I was covering my ears frequently. I would sometimes run into a different room, close the door, hide in a closet, and cover my ears when another child came to play. I was practically unmanageable in grocery stores and shopping malls; I would have ridden up and down on an elevator for hours if I had been allowed to, and would physically fight when I was made to stop. My palms and forehead were sweaty. I was a very, very sick little boy.
My parents continued to consult my pediatrician, visited an allergist in Seattle, saw a pediatric gastroenterologist at OHSU, and went to another specialist at Emanuel Hospital. My mother was told not to worry, that boys sometimes develop more slowly than girls. She was told to give me prune juice for the constipation.
Although my mother questioned the pediatrician about a report she had heard on CNN about the MMR vaccine being implicated in autism, and asked for alternatives, she was told that none were available, and that there was nothing to this report. She was asked if she wanted me to be able to go to school. In retrospect, she believes that the MMR vaccine was probably the final insult to my gut. After reaching all of my developmental milestones in my first year of life, I “slowed down” after the MMR at 12 months of age. I hit our big-screen television repeatedly that following summer. I became more and more hyperactive, and my language consisted only of naming concrete objects.
When I entered preschool in the fall after I turned two, my mother was concerned because I did not want to participate in circle time, preferring to play in the corner. I would frequently leave the room and run down the hall. Once, when another child came running up to hug me, I froze. I had “whole body” tension reactions if another child got too close. Although my mother didn't recognize it, I was echolalic (I parroted what others would say). My mother had to use suppositories all the time so that I could have a bowel movement after five or six days of constipation. Often she had to use several. I whimpered and cried pitifully when I saw the suppository, struggling to get away.
When I was 33 months old, I finally visited a developmental pediatrician whom my mother had heard about through my preschool. He reported that I was impossible to contain or control, that I was extremely active, that I did not respond to “no,” and that I needed constant supervision. He noted my mechanical and manipulative skills, my “cause-and-effect” exploration, and the fact that I knew my letters, colors, and numbers. He also observed my short attention span and poor eye contact. He was struck by how autonomous I was, and how resistant I was to his trying to engage me in play and interact with me. He noted my rote counting, and also heard a considerable amount of immediate echolalia. He noted my nonspecific verbalizations. He noted that I smelled balls and plants. In summary, he told my parents that he was very concerned that I had autism spectrum disorder. He said that my delayed speech development with a disordered pattern of speech usage, characterized by frequent non-specific use of words, echolalia, and some appropriate use of words, concerned him. He noted that I didn't typically use words to indicate what I wanted or to communicate socially. He noted that my play with toys was very manipulative and mechanical, and that I had excellent motor and manipulative skills. He noted my obvious delay in social development and my difficulty in establishing normal peer interactions. He saw me putting my hands over my ears. He also reaffirmed my extreme hyperactivity and lack of inhibition to voice, requiring constant attention. He said, “Nikolai's behavior is such a concern that I suggest you see a psychologist privately.” He told my mother she clearly needed help caring for me, because I was too much for one person to manage. He suggested the early intervention services through the public schools as my parents' only treatment for me. He told my parents that I had a lifelong disability, and that it would severely impair my quality of life.
My father sat in stunned silence. My mother immediately stood up and said, “What about the vaccines?” He responded, “There is absolutely no evidence that the vaccines have anything to do with autism.” After returning home and experiencing an initial (but brief) period of extreme grief and fear, my mother got on the Internet. She discovered the websites for the Autism Research Institute and the Center for the Study of Autism. She somehow was able to get the home phone number of the Director of the Center for the Study of Autism, and called him on a Sunday afternoon. He was kind, encouraging, and extremely informative. She talked with other parents who were ahead of us. She printed articles for my father to read. As a traditional, conservative allopathic physician, my father initially did not believe that there was anything that could be done besides contacting the early intervention services program. He thought my mother was grasping for straws while she should have been accepting the situation. He started reading. He stayed up late many nights. He started searching the Web himself. He bought medical textbooks on immunology. He and my mother talked with the two designated Defeat Autism Now! physicians in Oregon. He scheduled himself for a Defeat Autism Now! conference in short order. He asked my pediatrician for the amount of mercury that had been in my shots, and she gave it to him. She stopped speaking to him, although my father did not express any antagonism toward her.
As of this writing, ten months have passed since I was at my worst. I was put on a strict gluten- and casein-free (GFCF) diet. This seemed to produce almost immediate results for me: my mother thought she heard me say, “I love you Grandma” in an extremely garbled voice; I pointed to an airplane in the sky for the first time; I told my mother, “Hurt toe” when I had never verbalized previous pain; I put on a new jacket my mother had gotten for me, and admired myself in the mirror—and I wore it to bed. My mother also eliminated foods to which I was allergic (as determined by specialized blood tests) when I was first on the GFCF diet. These foods have since been reintroduced with no apparent contraindications. My mother also started buying organic and additive- and antibiotic-free foods. I was given vitamin and mineral supplements to address my deficiencies and bolster my immune system. These supplements are hypoallergenic and purchased primarily from Kirkman Laboratories. I take 35 different supplements and vitamins a day. At first, my mother had to chase me and hold me down to get them into me. Although they don't taste very good mixed in banana baby food, now I say “Oh, gross,” and “I don't like it” when I take them. I was given two courses of nystatin to kill fungus discovered through stool sample tests. My Grandma prays for me constantly. I have ABA therapists who have worked with me to help me make up for the developmental time I lost. I have “made up” over two years of expressive language skills in those 10 months. I have no more eczema, no more welts, no more distended belly, no more constipation, and my eye contact is normal. I speak in sentences and answer questions. My activity level is now normal, I am very social, and my imaginative play is wonderful. I love it when people read to me. My cognitive and motor skills are at or above average for my age, though my expressive language is still five to six months behind the norm for my age at this time.
My therapists tell my parents that I am very gentle, well behaved, easy to engage in conversation, and eager to learn. I am also very loving and sensitive. I seem to have unusual empathy and compassion for a child my age. A short while ago I was with one of my therapists visiting a pet store before going to my preschool. While in the shopping mall I noticed plants for sale. I asked Beth, “Can I get the purple one for Mommy and the yellow one for Grandma?” Needless to say, I arrived home carrying purple and yellow primroses, which I proudly gave to Mommy and Grandma (I did not ask for anything for myself). I need to continue to develop my conversational language skills and my use of pronouns (this is developing quickly). I am working on grasping more abstract concepts (concrete things come easily for me: I knew the alphabet, identified individual letters out of sequence, and counted to 20, even when I was very sick). I need to work on my attention and focus skills, especially in a larger group setting. This is also developing quickly. In short, I now have mild delays in language and social interactions with peers. I would no longer be diagnosed as on the autism spectrum. One of my therapists, who has a Ph.D. in psychology, has said that in her 19 years of working with children she has never seen anyone move so far so fast.
Although the developmental pediatrician did us an enormous service by correctly diagnosing my illness, he was not informed about how to help me get better. This denial and ignorance of the mainstream medical establishment regarding this illness is very shocking and disturbing.
I have beaten the odds more than once in my short life. My mother says it is hard for her to accept my suffering and struggle, but now she is looking for the gifts that this might have given me. Recently she asked another of my therapists what she would project as my strengths in years to come, and what good may have come from what happened to me. Beth said, “I think Nikolai clearly has a love of learning and of succeeding, he has a phenomenal memory, he is a very sensitive and gentle child, and he will probably always be the kind of person who will want to know everything possible about a given subject. Nikolai will perhaps have a slightly different perspective to bring to bear on things, and this can be a real advantage, not only for him, but also for others around him. He seems to love music, and will probably pursue that. He will probably be very good in math and science. He loves the creative process and artistic endeavor. I can see him performing in plays when he is in high school. He will probably be a very early reader. He is a very smart little boy.”
Although my mother and father sometimes feel crushing sadness and guilt (“if only” is a phrase my mother often uses), I was lucky that they didn't think I was misbehaving or being naughty. I was never spanked or hit. My mother worries about the countless children affected by this horrific holocaust whose parents are uninformed, unwilling, or unable to invest the effort and resources necessary to help their children heal.
My mother has always had nicknames for me: “pumpkin,” “muffin,” “Pooh Bear” were some of her favorites, along with the typical “baby,” “honey,” “sweetheart,” and “love.” Now she usually calls me angel. But sometimes she holds me close and calls me her hero. She says she is so proud of me. She says that this is for the way I have borne my suffering with such grace. All of the frightened, sick, and innocent children involved in this tragedy are her heroes, she tells me, and someday I will understand.
I am blessed. I have a loving family that wants to give me the support to be whatever it is that I want to be. They have been able to afford the expense of the intensive ABA therapy, the special diet, and the supplements. My mother lives in our second home in Portland, Oregon, where the therapy and foods that I need are available. My father works half of the time in Astoria, Oregon, which is 100 miles distant from Portland. He has a medical practice and owns an MRI center there. He and I miss each other when he is in Astoria, but I need to be in a large metropolitan area to continue my recovery. My parents believe in me and want what is best for me. I have come so far, yet my journey has just begun.
Update (February 2003):
It has now been 22 months since Nikolai started the journey of recovery from autism. He is now in preschool with his typically developing peers. He has no aide. One of his teachers (who has years of experience teaching special needs kids, including children with autism) told us that she sees nothing that would even hint of autism. Another teacher just told us how he is initiating play with peers, expressing unusual concern and empathy when peers are hurt, and participating fully in the classroom. This teacher also told us that she wishes that all of her students were like Nikolai. He is cooperative, polite, helpful, and loving, and he is ahead of his peers cognitively. He is without a shadow of any kind.
We recently returned to see the developmental pediatrician who diagnosed Nikolai originally. These are his words: “This is the third time I've seen Nikolai. I first saw him on two occasions when he was 2 1/2 years old, at which time I made a diagnosis of Autism. He had a very characteristic developmental pattern, and also seemed to be quite bright. In the interim, he has received several forms of complementary and alternative biomedical interventions, including a casein-free, gluten-free diet, various types of supplementation, and intensive therapy, and he's made remarkable progress. At the time of this reevaluation, Nikolai appears to me to be a normal 4 1/2-year-old boy. He interacted nicely with me, showed good speech and language development, and played appropriately with toys. His attention span seemed short, but he wasn't otherwise particularly hyperactive. In summary, despite an earlier concern about Autism, Nikolai has made excellent developmental progress and currently shows no clear characteristics of that developmental disorder. In addition, he appears to be at or above age level in terms of his general development.” (That Nikolai was coming down with a cold that day may have explained his shortened attention span.)
We are continuing to test to ensure his physical recovery is complete. We feel that the GFCF diet is essential and that the Defeat Autism Now! Protocol supplements helped him overcome his nutritional deficiencies. We feel that the glyconutrients (Ambrotose, Phytaloe, Plus and Immunostart), as well as the probiotic Primal Defense, were real contributors to Nikolai's recovery. We did not chelate; we argued about this. Although we were afraid to leave the mercury in his body, Dad was afraid chelating would make him worse. Dad (the M.D.) prevailed. The intensive ABA therapy helped him catch up and develop those skills and abilities that he had no opportunity to develop when he was so sick.
But without question, Nikolai's determination and motivation have been a wonder, a blessing, and a joy to behold. He had the support, the love, and fortunately the resources for his recovery. He is a remarkable child. He stands out in a crowd in a wonderful way.
We wanted our child back; we have him now.
Update for Second Edition (September 2005):
Nikolai is now in the first grade at a private, academically challenging school. He was “evaluated” at the same school in his kindergarten year for admission to first grade. He passed with flying colors based on his academic readiness, his social skills, his emotional development, and his behavior. More than a quarter of his year-end kindergarten progress report grades showed that he was exceeding expectations—not an easy achievement at a school that considers satisfying expectations the norm. Nikolai also was given the Stanford Achievement norm-referenced test, which measures challenging academic standards appropriate for each grade level. He scored in the upper 5-10% in the national grade percentile band across the board. His principal said, “I'd be very pleased; not only did he score very high, he did it across the board. He's also very articulate, well-behaved and socially astute.”
Nikolai has a particular love of language. He is always learning new words and incorporating them into his conversations. Some of the most recent additions are “illustrate,” “delightful,” and “inappropriate.” It is wonderful to hear these rather sophisticated words used in the correct context in a conversation.
Nikolai is taking private piano and musicianship lessons. He has close to perfect pitch and his ability to sing and play by ear is a gift. He is also enthusiastic about his swimming and golf lessons. If only there were more hours in the day!
Nikolai continues to take the supplements that our whole family takes: the glyconutrients, as well as some extras such as magnesium, calcium, Omega Brite, Indebenone and royal jelly. We do this because we think it is good for all of us, not to correct a problem. We are also considering an infrared sauna. We think we could all benefit from its detoxifying effects, given the daily insults that we are all exposed to in our environment.
On May 12, 2004, our son Christian was born. He is an almost identical likeness of Nikolai in every way. The difference is poignant though; he has not had one vaccine, and he is the healthiest, happiest baby that everyone who meets him remembers. He has had one ear infection in his 16 months, shortly after a vacation involving airline travel. Nikolai's early life was marked by far too much pain and suffering. He, too, should have had the happy, carefree start that Christian is now enjoying. But we go forward from here, thankful that we have our wonderful son Nikolai fully present in our lives and our world.
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