Archives of Pediatrics & Adolescent Medicine: Early Detection, the Cost to Society, Older Parents
April 2, 2007 by Kristina Chew, PhD
Filed under Health
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.
Hi Kristina
I was 35 years old when my son was born ( 3.5 kilograms that is near 7 pounds 11 ounces more or less). He was full term. We have a diagnosis near 1 year after the onset of symptoms, but he was evaluated near 6 months after the onset, at 2 years 6 months.
Unfortunately, no doctor at that moment was helpful at all in almost nothing.
I was 27 when my son was born, and his mom was 26. My parents were under 21. But then my father was clearly autistic and my mom has several autistic traits. I was well over 9 lbs (and about two to three weeks late,) and my son was born full term at almost 8 lbs.
Yes there was a lot of waiting on both me and my son, but the boys in the family on both sides had been like that for many, many generations. So why would there be any cause for concern?
And honestly, I’m of the belief that the old parent thought is misleading. When you think about the social difficulties, it’s very likely that most adults on the spectrum are likely to not succeed in finding a mate until later in life, and the actual studies showed only an increase in autism with older fathers not older mothers.
I was 30 when Joey was born. He was 8 1/2 pounds, born at 42 weeks. He did go into distress and was born by c-section. On August 31, 2004, the SLP at the local hospital suggested he might be autistic. We called the school that afternoon. He started preschool on October 12. He was diagnosed as “borderline ASD” on Nov 6. He was given a diagnosis of “Autistic Spectrum Disorder” on April 12.
He was hitting most milestones withn normal range, except language. He did not point, he had no words, and he loved everyone who came near him (no fear of strangers). He moved awkwardly and had fine motor issues, and now we know he was having sensory issues from Day One.
…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. …
ARRRRGGHH!
I loved delivering babies as a medical student. It’s exciting, you’re the first one to welcome new life into the world, and it’s just a really happy time. But I could never go into Obstetrics, because of the 21 years you have to worry that someone will sue you because of some action that happened during the birthing process. Imagine having to recollect and defend your actions of 20 years ago from your handwritten notes.
Not wanting to get political, but John Edwards made his multimillions from Cerebal Palsy malpractice cases, alleging that the doctors did something wrong during delivery. There are absolutely NO studies that show this, but it hasn’t stopped juries from awarding millions to lawyers bringing these cases. Now it appears that someone is laying the groundwork to open up a whole new avenue of revenue-autism caused by low oxygen during birth.
Boy I’m glad I’m not an obstetrician.
I was wondering about the same thing, Club166—-I had a talk about this very issue years ago with an ob-gyn who pointed out that some children had difficult births because they may already have gross motor or other physical disabilities.
Joeymom: do you mean you think your son had sensory issues from day 1? If I may ask, how old was he when he was diagnosed? Charlie now loves to wrap himself “like a burrito” in his blue blanket, but as a baby he did not want to be swaddled; I wondered at this, as he was such a big baby and I’m not very tall (five feet). But I have always wondered at his early dislike for swaddling.
My husband was not the oldest dad. I have wondered why the “older dad theory” has gotten so much play—-it is yet another theory that can result in some parents castigating themselves.
I think the earliest diagnosis we could have had was at 18 months. I mean, the only milestone he missed was the “pointing at 12 months”. After that, his language seemed to plateau until 18 months, when he made a sudden progress, but it was still limited to labeling objects and people. He would not answer “yes” or “no” and would instead repeat your question. At this age he started to line up toys and obsess about colors, Wiggles, letters, numbers and shapes.
I wish I had more autism awareness because then I wouldn’t have accepted his first evaluation by a speech therapist at 24 months, saying that his speech delay was only due to his being raised bilingual. This misdiagnosis delayed what would have been an early intervention, for a whole year. If he had started then, he’d be much more verbal than he is now.
I think that the indicator about “answering to his name at 12 months” is very important and easy to spot by parents, however my son answered to his name (by turning his head to you) starting at 6 months, and he is still autistic. So he would be on that other half that did not fail to answer his name at 12 months, but was still diagnosed with ASD. Symptoms are common but vary from child to child, so it’s better to talk in terms of a “list” of red flags rather than just one early indicator.
I had what most dr’s considered a normal pregnancy, but for me it was not “normal”…..I have 4 children all together, my son w/ autism is the 3rd and his pregnancy was more difficult for me than the other 3. Some early bleeding (slight) and pre-term labor @ 36 weeks. Induced labor at 41 weeks, the strangest part for me with the labor was that he seemed to push himself out…..with my other kids I had control of the pushing, but with Landon it was all him, with every contraction.
He was seemingly healthy at 8lbs 12 oz, and almost 22 inches long, very slender features and huge blue/black eyes that later turned to a heart-melting dark brown….those eyes……but he also seemed not to have any tone to his arms and legs, I have pictures of him appearing to look like a rag doll very early on.
But he was “different” from the start, fussy, didn’t sleep well for several years, he came down w/ RSV at age 6wks and for the next two years we battled ear infection after ear infection along w/ some asthma like attacks where we had to give breathing treatments and sometimes oral steroids. Also, at 1 yr 1 month he was sick again with chronic diarrhea and vomiting of unknown origin.
He didn’t speak but just a few words, sounds really that only a few people understand…we thought once he got the tubes in his ears at age 2 he would start to talk more because the dr said after the surgery that his ears were full of congestion…probably muffled all sound…but he still wasn’t talking much a year later…and there were other signs before then, he his most of his developmental milestones but always on the very low end of normal…and looking back he just wasn’t “there” with the rest of us….not social, hardly smiled, no pointing that I can remember and never seemed happy with any toy that I gave him, quickly got bored with it and moved on to something else…..and the tanrums were horrible. I thought then that it was all me, that I was doing something wrong…if I had only known. Education is so important for new parents, I think, no matter what number child it is for them.
Once he began walking he was so uncoordinated and always bumping into things or falling, and we had the lining up of cars, fixation on certain objects, and still no social skills….
Now he talks a lot, but still difficult to understand, and still somewhat clumsy…we just deal with it one day at a time.
I think more education for parents is so important and to provide them ALL with that “list” of red flags, doctors should not be concerned they will scare the parents by talking to them about developmental disabilities, that is there responsibility, I think most parents would appreciate having the knowledge beforehand to give them a head start on recognizing the signs.
My wife, a CPA, just finished our taxes for 2006. I have to pay $58,000 in additional taxes this year on top of the $75,000 I’ve already paid. How do I figure in the researcher’s “costs over the lifetime estimate?” Now, I realize, my tax return isn’t typical of most people, neurotypical or not but if you were to take any population of people, poor, disabled or those whom just didn’t get the breaks others did and then figured out the cost to society for it’s unequal economic structure, you could show almost all groups “costing” more than they so called contribute. I wonder how much Bill Gates will pay in taxes this year? Measuring ones worth in how much they “cost” to society is very dangerous and I’m not quite sure what drives any researcher to study these types of things. If it is to make the case for increased funding of educational programs and services, I’m all for it. I just don’t know.
I think the access to health care/insurance also needs to be explored. Having been on Medicaid with both of my children (Daddy and I were both very young–17 and 18) and having very limited resources, I think there’s also the access to screenings and services that often plays a role in identifying autistic traits.
Case in point: I visited 3 different doctors attempting to get answers for why my “fussy” child wouldn’t speak more than 5 words at 18 and 24 months. At 3, I visited our school district at 3 for a developmental delay evaluation–”just slow for his age.” At 4, another school district stalled evaluating him until the school year was almost over and by then they were going to have to wait until the next school year.
Finally, I got the diagnosis that I knew was true at 6 and only after we moved to a “nicer” neighborhood in a better school district and I started bugging the crap out of them.
I wonder, too, if older parents have more leverage with doctors and school administrators to see these children as more than the product of young parents with limited resources and experiences. In hindsight, I think a lot of the resistance I faced came from doctors and diagnosticians who considered me to immature to know what was “not right” with my son. And, from my own lack of confidence (as a poor, young mother in a social system that does an excellent job of making its clients feel like garbage) in my own abilities to fight for what I knew what going on.
Rochelle, I think you are probably somewhat correct in what you are saying, I don’t have a college ed, but do a lot of reading so I do know what I am talking about when it comes to my son and how the autism effects him and I am continually trying to educate myself, someday I may go back to school, but anyway I think sometimes that I am treated differently because the school personnel know this about me, from school records and they have treated other children of parents w/ degrees differently, I have heard this from other parents as well.
I guess our history is different from most I’ve read here, and could tend to back up what studies have said: Rudy was 61 when Ely was born, and I was almost 40. However, I don’t give credence to the “older father” theory….I have two stepdaughters, ages 38 and 30…plus I gave birth to Julia when I was 29, and those three girls are NT. My son, John Paul, came when I was 33 and he has Asperger’s. My daughter, Ely, came last. I have to say that I had three pretty easy pregnancies, except for the fact that I have always had high blood pressure, so babies (all three) came one to two weeks early. Rudy and I both have college degrees, he works still, I quit working when John Paul was diagnosed. We are EXTREMELY lucky that our health insurance is provided by Rudy’s job. That is not to say that everything is covered…doctor’s visits and prescriptions are, any other therapy is not.
And, even though Rudy is 66, he is, without a doubt, the most INVOLVED parent I’ve ever known. He comes home from work daily, changes into jeans, and turns into….Dad. That counts for something, right? It’s magic.
AJ
Re: older dads
In addition to what has already been said about autistics likely marrying later, I recall reading somewhere (that i can’t find now, caveat) that copy number genetic variants occur during spermatogenesis, which would mean the father’s genetic contribution.
Cost estimates like that are classic eugenics propaganda. There’s a page on autistics.org that puts them in their historical context:
http://www.autistics.org/library/thenandnow.html