Well Being

Archives of Pediatrics & Adolescent Medicine: Early Detection, the Cost to Society, Older Parents

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Research in the April Archives of Pediatrics & Adolescent Medicine—-a special theme issue on autism spectrum disorders—-are about the early detection of autism and also the costs to society of taking care of an autistic person throughout his or her lifetime. As Geraldine Dawson, Ph.D., of the Autism Center at the University of Washington, Seattle, notes in an editorial, “Combination of Early Detection, Timely Treatment Hold Promise for Autism,” the special issue focuses on “new approaches to the early identification and treatment of autism, and the associated financial and emotional costs to families and society.”

Aparna S. Nadig, Ph.D., of the M.I.N.D. Institute, University of California Davis, Sacramento, and colleagues, found that year-old babies who do not respond to their names may be more “at risk” for developmental disorders, including autism. 46 “at risk” infants (who have older siblings with autism) and 25 control infants were followed for two years: “Of the children who were later diagnosed with autism, half failed the [name recognition] test at one year, and of those who were identified as having any type of developmental delay, 39 percent failed the test.” Another study by Wendy L. Stone, Ph.D., and colleagues at Vanderbilt University, Nashville, Tennessee, also focuses on early social and comminication problems in infants of autistic siblings. 64 younger siblings of children with autism and 42 younger siblings of children who were developing typically were studied when they were between the ages of 12 and 23 months. Stone notes that about 6 to 9 percent of younger siblings of autistic children “develop autism spectrum disorders, and others may demonstrate features of the broader autism phenotype.”

It is impossible for me to read anything about autism without relating it to Charlie's story and ours: “Does he know his name?” was one of the questions Charlie's pediatrician asked me in Feburary of 1999. Charlie was 21 months old then: I answered “no” without missing a beat because I had been asking myself this very question over and over ever since Charlie's daycare teachers had told us at a parent conference in December 1998 that something was “not right” with him—with his brain, I thought I heard the word. Charlie had been in the daycare since September and I had just thought—assumed—that he knew and responded to his name: But did he? Did my wishful thinking cover over what was actually the case in too positive a light?

In Charlie's case, I would have appreciated a very early diagnosis of autism. Charlie started to sleep through the night at the age of two months and ate his first solid food at six months, but he met none of his other developmental milestones on time. It was not just that Charlie was not talking, or understanding what was said to him: He was nine months old when he rolled over independently, and some ten months when he was able to sit up on his own; he walked, on his shakey grasshopper-thin legs, at fifteen months (and crawled much, much later). I would have been alarmed to have heard that “something was wrong” with my baby, but I would have been glad to know what was going on. “All children develop at their own rate” and “boys develop slower” were phrases that I heard again and again and that offered only the falsest of reassurance.

Another study on the “cost to society” to take care of an autistic person in the April Archives of Pediatrics & Adolescent Medicine special autism issue is potentially alarmist. $3.2 million is how much an autistic person “costs to society over his or her lifetime, with lost productivity and adult care being the most expensive components,” a study by Michael L. Ganz, M.S., Ph.D., Abt Associates Inc., Lexington, Mass., and Harvard School of Public Health, Boston. Ganz. The data used were taken from medical literature and from national surveys; costs measured were both medical and non-medical:

Approximate indirect costs, including lost productivity of both individuals with autism and their parents, were calculated by projecting average earnings and benefits at each age, adjusted for the fact that some autistic individuals can work in supported environments. Only costs directly linked to autism, and no medical or non-medical costs that would be incurred by individuals with or without autism, were included.

These costs were projected across the lifetime of a hypothetical group of individuals born in 2000 and diagnosed with autism in 2003. Costs estimates were broken down into age groups at five-year intervals, with the youngest group age 3 to 7 years and the oldest age 63 to 66 years.

“Direct medical costs are quite high for the first five years of life (average of around $35,000), start to decline substantially by age 8 years (around $6,000) and continue to decline through the end of life to around $1,000,” Dr. Ganz writes. “Direct non-medical costs vary around $10,000 to approximately $16,000 during the first 20 years of life, peak in the 23- to 27-year age range (around $27,500) and then steadily decline to the end of life to around $8,000 in the last age group. Indirect costs also display a similar pattern, decreasing from around $43,000 in early life, peaking at ages 23 to 27 years (around $52,000) and declining through the end of life to $0.”

Talk about “doing the math”: I understand why these figures have their use for government agencies who need to predict costs for future budgets. But I have to wonder how someone who (for instance) believes that there is an epidemic of autism might use such figures—perhaps to suggest that we had better start curing all these autistic children and finding a way to prevent autism now or we as a society will go bankrupt? I hope these figures can be used responsibly, as can some of the others findings noted in the special issue:

  • Older fathers and mothers may be at increased risk of having a child with an autism spectrum disorder
  • In addition to maternal and paternal age, low birth weight, a shorter pregnancy and a period during birth when the baby does not get enough oxygen may be associated with an increased risk for autism spectrum disorders
  • Yearly health care expenses for individuals with autism spectrum disorders increased 20.4 percent per patient between 2000 and 2004, from $4,965 to $5,979
  • Nearly one-third of parents do not appear to comply with instructions given when their children screen positive for problems with social development

For the record, I was 28 years old when Charlie was born; Charlie weighed 8 pounds and 3 ounces and was full-term; there were some moments when I was not getting enough oxygen while I was in labor; it took me two months from the time Charlie's daycare teachers expressed their concerns about his development to when I called the referral number of the St. Paul Public School District to have Charlie evaluated. But I hope that parents can read these studies and not take themselves to task, for waiting too long to have children, or not doing everything “100% right” during pregnanct, or not calling some professional about their child earlier than they did. The point is that parents did make that call and do have a child who needs their love and concern now.

Taking care of Charlie as best as we can has cost a lot and even cost us a lot—-but Charlie has already, and always, give us back much, much more than we could ever spend, because he is Charlie.