Tuesday, October 18, 2005

166. 100. 50.

These are the odds.

According to a number of sources one out of every 166 children will develop an Autism Spectrum Disorder. That number increases to something like one in every 100 for male children who are more likely to become afflicted. If one child in a family develops ASD, other children born to that family are fifty percent more likely to develop autism.

Ask any six knowledgeable people what causes autism and you are likely to get at least as many answers. There are no known genetic markers that can predict if a child will develop autism and it is not something that can be detected at birth. But most people agree that those who will develop autism are genetically predisposed to do so and that something environmental triggers the condition. Some argue that the environmental trigger occurs during gestation and others point to events shortly after birth and during a child's infancy. No one has the answers and emotions run high at every corner of the debate. For parents who seek answers and reliable treatment options there are far more questions than answers.

These things I can say with certainty: Oliver seemed to be developing typically until sometime during his second year. He has been a remarkably healthy child since birth with nary a cold or an ear-infection but became seriously ill within 24 hours of receiving his scheduled vaccinations at eighteen months. His intestinal tract never fully recovered. At his two year well-baby visit the doctor said that I shouldn't worry about it. When I repeated my concerns at his three-year visit and pressed him about autism as an auto-immune disease his eyes glazed over: "There is no science to support the vaccine-autism hypothesis," he said. But then I would guess that he has to believe that.

I am not a medical professional, an epidemiologist or a scientist but I do try to read what I can on all sides of the debate with an open mind. I wish I had more conviction about the causes of autism as so many other parents seem to have; but I don't. I am, however, a mother of a child with autism and so I have a first hand frame of reference. My experiences, my observations and my instinct inform the many decisions we've had to make in the days since autism. Sometimes it would be nice to have something more to go on. A roadmap or chart of this strange new territory would be helpful.

I have another son, Sam, who is now 6 months old. He was born at home and so did not receive his first vaccination shortly after birth. That choice was made by circumstance but the rest will have to be decided. With the odds that are facing us and a world of unknowns this becomes a struggle.

When Oliver was a baby I used to watch him for signs of brilliance. I entertained myself by dreaming up silly and wonderful futures for him. "Oh," I would say, "Look at the way he moves his hands like that. Maybe he will grow up to be a street mime working the sidewalks of Paris. It will be a hard life but he will be happy making so many people smile and besides, it will give us a reason to vacation in Paris!" Now I look back and wonder if those hand gestures were a sign of his more immediate future. I feel robbed of my memories. With Sam I don't look for signs of brilliance and just pray for average. But watchful and concerned I am robbed too of his babyhood.

So I find myself playing the odds these days in ways I am not always comfortable with. But science and statistics are changing and evolving over time based on new knowledge. And I have come to see that there are many things in life for which the odds aren't defined. Love, hope, faith and the serendipity of friendship to name a few. These are things we are lucky enough to have in abundance and so even without roadmap or chart, at least we have our heading and for now it feels, the winds are in our favor.

2 comments:

  1. Hi Christine,

    I met you at Sonya's birthday dinner in Feb. I just wanted to say how much you blog has meant to me. I have suspected that my oldest son is on the autistic spectrum for about a year. After reading your blog and the book *A Real Boy* that Sonya leant me I have finally pulled my head out of the sand and am pursuing having him evaluated. I can relate to many things you write about. It brings me comfort and hope that we'll have wonderful, special boys who will find their place in this big world. Thanks for sharing your thoughts!
    -Marcella

    ReplyDelete
  2. Hi,
    I am a medical translator, and found today your nice blog for the first time.
    I excuse myself beforehand if I am inopportune, and don't want to give you a hope that maybe it's not justificate (or a problem more, for that) but I have a question: when you had him tested for autism, did you try to test Oliver for Biotinidase Deficiency? It is a *very rare* deficiency in the metabolism of the biotin vitamin (vitamin H) and can be tracked with a blood exam, albeit not a routine one. If it turns out to be there, screen your little baby too, as biotinidase deficiency is genetic and can give autism-like symptoms, but is easily averted, if taken on time, with daily supplements of biotine. If you search Medline for reference you'll find many.
    The thought about BD came to me when I read about Oliver's sudden health problems after the shoot, and the bowel problems. A friend of mine has an autistic child whose autism started just in that way, and he (and his little brother, who was cured with biotine and is neurotypical) has BD.

    ReplyDelete