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Your instincts may be your best guide. Pam Thompson couldn’t shake the sense that something seemed wrong with her son Erik, despite being reassured by his pediatrician that he was fine. Eighteen months old at the time, he didn’t seem to respond to his name as before, nor was he talking as much. “Nothing’s wrong with him...He’s a boy...Don’t compare him...Boys don’t talk as quickly as girls,” were among the explanations and responses handed to the Mission Viejo mom. But his language didn’t improve. In fact, Erik stopped talking completely. He also quit making eye contact. And he began a new practice of lining up items, and became insistent upon the order. At 2 years and 11 months, nearly 18 months later, Erik, who is now 6, was diagnosed with mild to moderate autism. Despite increased awareness and diagnosis occurring at a younger age, especially in Orange County, the Thompson family’s scenario continues to play out today. “People pooh-pooh parents who are concerned,” says Dr. Pauline Filipek, associate professor of pediatrics and neurology at the UCI School of Medicine. “Parents think they are crazy because other people scoff at them. And in reality, more often than not, parents are vindicated.” According to the Autism A.L.A.R.M. project, parents of children with autism usually do have early, pre-diagnosis concerns that something is wrong with their child. They also generally provide accurate and quality information to professionals. So as any parent of an autistic child will tell you, follow your instincts – even if family members and, in some cases, your child’s pediatrician insist there is nothing wrong. Autism defined While descriptions of the condition date back to the 18th century, autism was first identified as a specific disorder in 1943 by child psychiatrist Dr. Leo Kanner. Autism has since become a household word. “I hesitate when we say autistic because, really, that doesn’t mean anything,” says Kristi Munro of Costa Mesa, whose 3-year-old son, Billy, was diagnosed when he was 18 months old. “It means that my child has a bunch of symptoms and I’m trying to address them the best way I know how.” The Centers for Disease Control and Prevention (CDC) define autism as one of a group of disorders known as autism spectrum disorders (ASDs). Included in this broad category are autistic disorder, Asperger’s syndrome, Rett’s syndrome, pervasive developmental disorder and childhood disintegrative disorder, which are determined by several factors, including type and severity of symptoms. “This is not a singular disorder. This is a spectrum of disorders that all have the same behavioral core. So it’s not a disease like diabetes,” says Dr. Filipek. “It’s more like high blood pressure. There are a lot of reasons for high blood pressure, but the one common thing across it is that your blood pressure is elevated.” What causes autism? While the causes are unknown, scientists believe that both genes and the environment play a role. Among the many theories is the presence of other medical conditions, such as Fragile X, the most common inherited cause of mental impairment, and harmful drugs, such as thalidomide, taken during pregnancy. The California Department of Public Health released a study in July that suggests a connection between autism and exposure to pesticides while in the womb. All 3 of these theories have been linked with a higher rate of autism. And of course, the most reported and talked-about theory is the link between autism and vaccines, which continues to be hotly debated. (See related story.) What researchers do know is that autism is much more common than previously believed. For decades, the CDC’s best estimate for the prevalence of autism was 4 to 5 in 10,000 children. Other studies have since put the range between 1 in 500 children and 1 in 166 children. The CDC’s most recent data, released in February, puts the rate even higher. The study found that about 1 in 150 8-year-old children in multiple areas of the United States had an ASD. Whether the rise is a result of true increases, or better and more consistent studies, is another issue under debate. Not surprisingly, all the parents interviewed for this report had boys. The condition, which occurs in all racial, ethnic and socioeconomic groups, is 4 times more likely to occur in boys than in girls. Early intervention is key While there is a greater understanding of this complex disorder, from the now-known genetic factor to a relationship between autism and brain structure, the best news for families is the potential impact of early diagnosis and intervention. Many parents rely on a combination of traditional and alternative treatments, often turning to DAN doctors (Defeat Autism Now) for the latter. Among the sought-out interventions are speech therapy, occupational therapy, behavioral intervention, animal therapy, dietary supplements, heavy-metal detoxification and a host of others, all of which provide varying results from child to child. “Even though there is no cure...there’s hope. There are kids are out there who have improved immensely,” says Pam Thompson. “And the research and understanding are only getting better with each day.” According to the nonprofit group Autism Speaks, with appropriate early-intervention services between the ages of 3-5, some 20%-50% of children diagnosed with autism will be able to attend mainstream kindergarten. Pam’s son, Erik, was among those children. Instead of being placed in a special-education setting, Erik was able to attend a collaborative kindergarten class last year at Barcelona Elementary in Mission Viejo. The class included one-third special-ed students, who were primarily all high-functioning boys with autism. A promising prognosis for some While a wait-and-see-how-they-do approach continues, a number of children are being diagnosed at a younger age. Dr. Filipek gets referrals of children well below the age of 2 from their primary-care doctor. When she arrived at UCI Medical Center 13 years ago, the children were typically referred at age 3 or 4. The mean age of diagnoses in this country, says Filipek, is still close to 5 years of age. “It differs dramatically in many ways,” says Dr. Filipek of how the prognosis has evolved over time. “And I think it has the potential to differ in ways we don’t know yet, mainly because this generation of children with autism is the first to be diagnosed as young as they are. “We don’t know what happens to these children when they grow up. What I can tell you is that we have an enormous number of remarkable successes. The autism doesn’t disappear. But in many cases, it becomes pretty hard to see, even for a professional.” Sandy Bennett is the director of communications for the National Fibromyalgia Association and a regular contributor. |
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I think there is a great need for early diagnosis of Autism and agree that pediatricians should be on the lookout for symptoms throughout well baby/child appointments. The recomendation by the American Academy of Pediatrics would have prevented the difficulties we have experienced as my son wasn't diagnosed until last year at the age of 7. Now, his treatment will take longer because he is set in his routine and change is extemely difficult for him. I wish the Dr's would have listened to me when I asked about his earlier symptoms and I wish I had continued looking until I found a Dr. that would take my inquiry more serious.
| Comment at 1/7/2008 |
I am responding to your Autism and babies question on applauding the AAP requesting pediatricians to look for signs of Autism at birth. That is an excellent recommendation considering that Autism affects one out of every 160 births. Also, I have a child with Autism and I know that early intervention was key in getting him to where he is now. He has made so many gains that would not have happened without early intervention. My pediatrician did not talk to me about autism. I discovered it on my own, trusted my own instincts, and started getting help before my pediatrician acknowledged it. So, YES! YES! YES! to the AAP's recommendation to look for signs of Autism at birth and beyond, early intervention can make all the difference in the world.
| Comment at 1/10/2008 |
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