Things small and familiar were the gifts that Charlie most liked: A pale blue Mugen Pop Pop, a new copy of a DVD he already has (and that’s gotten so scratched up and smudged that it skips and gets stuck), a case for his Leapster (which we should have gotten a while ago, as Charlie’s dropped his a couple of times). We’d be happy to get him some more elaborate gifts, and have over the years. Iused to spend quite a bit of time choosing toys and then even more time teaching Charlie to play with them (some of the toys are still in closets in our house and in my parents’, shiny and wrapped in plastic to protect them from the dust).

Charlie pretty much seems to lack consumer consciousness. He likes what he likes.

And so, while experiencing the sort of quavering feeling many (most…) of us have been as more words like “dismal” and “downturn” are used along with “economic crisis” and “home sales” and “mortgages” and “banks”—-what will this mean for Charlie’s public school program? he’s quite a ways from looking for a job but won’t it be even harder to find employment for a disabled worker in a challenging economic climate”?—-we’ve also felt that there’s not going to be some totally drastic change in our everyday way of life.

Ever since Charlie was diagnosed, we’ve scrambled to pay for the things he needs, and managed. Corners have been cut (and will be) ,and we’re both feeling very fortunate to have full-time employment. With Charlie’s needs, we’ve long known that some things are just out of the question, and we always have an eye on his future. While we very much hope and intend that Charlie will be able to have a job, it’s highly likely that it’ll be far from high-paying. Certainly, Jim and I are both hoping we can work as long as we can.

Caryn Sullivan writes about a generation of kids accustomed to having more now having to adjust to having less. It’s “stuff” —-electronic iStuff and the like—-that she’s referring to, while she also notes that one of her children, who’s autistic and living a “cloistered lifestyle at a remote, old-fashioned school,” gave her a list of 24 items that he’d like. As Sullivan writes in yesterday’s St. Paul Pioneer Press, she’s readying herself to “try to explain the financial facts of life without bursting his bubble this [Christmas] morning.”

I’d like to know how this went. Having been living with what people think is less, but I’ve learned is more —a son who’s disabled, who’s autistic—I think it’s possible to keep managing on less and little, and still come out feeling like you’ve got much, much more than you’d have ever bargained for.

An article in the December Pediatrics examines the health care experiences of families with autistic children in the US. Researchers looked at a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs; the children’s needs were “physical and mental,” and required medical care that was more than usual, yesterday’s Associated Press (via AZ Central) reports. 2,088 children of those children had autism.

The article is entitled A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005–2006, by Michael D. Kogan, Bonnie B. Strickland, Stephen J. Blumberg, Gopal K. Singh, James M. Perrin, Peter C. van Dyck. The Associated Press notes that

Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids’ health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.

Jacquie Mace, the mother of a 12-year-old autistic son, Austin, is quoted as saying that she spends “‘easily $15,000 to $20,000 out of pocket’” for her son; she’s still “working to pay off a $7,000 bill” for dental work for Austin, who required sedation and hospitalization as he is not able to sit in the dentist’s chair.

The topic of the “financial strain” on families to take care of an autistic child or relative is frequently noted, and perhaps even more in a time of economic uncertainty. A 2006 book, Understanding Autism: From Basic Neuroscience to Treatment by Michael Ganz, Adjunct Assistant Professor of Society, Human Development, and Health at the Harvard School of Public Health, estimated that it costs $32 million to take care of an autistic person over the course of her or his lifetime; some $29,000 plus for “direct medical costs, such as physician and outpatient services, prescription medication, and behavioral therapies” for an autistic person per year; some $38,000 to $43,000 for “direct non-medical costs, such as special education, camps, and child care” per year.

Those are big, and scary numbers. We’ve certainly spent a lot on Charlie’s education and medical needs. The dentist who Charlie’s grown familiar with is not covered by our insurance plan. When Charlie was younger, he did a lot of in-home ABA, verbal behavior, and speech therapy and we’ve always paid babysitters extra. And then there’s the lawyer, and more, and the reality that the jobs that Charlie will work at when he’s older are most likely not going to be high-paying.

And yet: If Charlie had not been autistic, I suspect there’d still have been plenty of “costs,” from childcare to camp to college to who knows what. According to 2007 USDA figures on Expeditures on Children by Families, families spend almost $300,000 from when a child is born to when he or she turns 17.

Talk about costs, while inevitable, can veer into talking about the “burden” of taking care of a disabled child, of a child who has “extra” needs and who may need care and support for much longer than a child who’s not disabled. While we’ve had our full share of difficult moments in trying to do our best by Charlie, taking care of him’s no burden. Sure we’ve had to give some things up, but the gains continue to outweigh any losses. We’ve gained much much more than we’ve ever spent, in dollars or in energy, in being Charlie’s parents—-life with Charlie is, simply, priceless.

The “rainfall causes autism?” study is garnering its share of media attention, as in this article, Study links autism and wet weather, in the San Jose Mercury News (which is curiously, or appropriately titled, depending on your views about mercury and autism).

But what about the correlation more than a few parents have noted about how their autistic children seem to become increasingly unsettled as the barometric pressure falls and the humidity rises; as a rainstorm, and especially a thunderstorm, is brewing? As the weather changes?

A study to be released today in the November Archives of Pediatric and Adolescent Medicine, reports on a link between high levels of rainfall and increased rates of autism. From the LA Times blog, Booster Shots:

Cornell University economist Michael Waldman found that in areas of California, Oregon and Washington that experienced high levels of rain and snowfall during the years 1987-2001, autism rates among school-aged children rose when measured in 2005. Those children diagnosed with autism would have been under 3 during the periods of high precipitation, the period during which autism is generally diagnosed.

There was mention of a precipitation-autism link in 2006, in Prof. Waldman’s study on TV causing autism—more on that finding (which was, may I say, received with many grains of salt) is here.

And it may help to remember, that correlation does not equal causation.

No.

TV does not cause autism. Reports of a study about this theory were everywhere in the fall of 2006, after the study’s authors posted their (then yet unpublished paper) on their website. Since then, the study’s been referred to as “just plain stupid” and has been more recently cited here. And it’s also been noted that the “TV causes autism” study implicitly blames parents who just let the TV do the parenting, or at least some babysitting.

If by chance any of you drop into my living room/Jim’s work space/Charlie’s space, and if you have the TV-autism theory in mind, you need fear not. We don’t have a TV. In fact, we don’t have a VCR and Charlie, the boy who is being taught to play Nintendo (don’t worry, I am saying no to Grand Auto Theft), barely watched it when we did, and that was the case with Charlie as a (yet undiagnosed) toddler, unless a few choice Barney/Teletubbies/Wiggles shows came on.

On to the next theory of autism aetiology……..

What do TV, ultrasounds, insufficient vitamin D, air pollution, a mother having the flu while pregnant, mercury, have to do with each other?

All have been named as possible causes of autism. TK Kenyon looks at the puzzling spectrum of research into the cause of autism, some of which he labels as “just plain stupid”—the theory by economist Michael Waldman that tv causes autismautism causes tv—while others are “brilliant”—a 2006 study published in the Proceedings of the National Academy of Sciences (PNAS), about a genetic variant that disrupts the transcription of MET, a gene that is a tyrosine kinase receptor and that “participates in brain growth and maturation, immune function, and repair of the digestive system.” As Kenyon further notes about the latter:

Children with autism often have symptoms of disturbances in some or all of these systems. This research ties together these disparate symptoms and explains why children with neurological symptoms often have diarrhea or immunological problems.

There’s something about autism that attracts speculation about “what causes it” and “why the increase”? People are quick to shake their heads at the suggestion that better diagnosis and more understanding about autism are real factors in the recent increase in the prevalence rate of autism, which is now 1 in 150 among children in the US, and 1 in 94 in New Jersey where I live.

Is it that people want to know why a child like my son can look so “normal,” with no obvious health problems (indeed, my son is very healthy, strong, and muscular from lots of physical activity)? Or why some autistic individuals seem to have behaviors that are highly reminiscent of those only absorbed—”obsessed”—with that quintessential product of the techno-computer age, the video game? Is autism about the “odd”/”strange”/”bizarre”/”abnormal” behaviors that one sees (and that are currently used to diagnose it), or is autism something invisible to the naked eye—-something in the genes, or just some kind of neuro-difference?

No surprise that the search is on for a biomarker for autism (one such candidate is accelerated head growth). If we could just pinpoint what causes autism, then we could figure out a cure.

I’m not at all sure what such a “cure” would look like. If I wanted to, I could say—could sculpt my words to prove—that my son has “recovered” to the extent that he could: He can talk now (in short, short sentences and not always clearly). He is curious about people and about children his age in particular, though his burgeoning and rather rote social skills do not make for too much actual interaction. As noted, he’s extremely healthy, and he’s extremely attuned to the world around him; to what Jim and I say and are feeling. He’s got more than his share of obsessions, anxieties, what can be called “tics” or “stims,” from holding his shoulders and hands a certain exaggerated way to (sometimes) constantly humming. He’s come much farther than anyone would or could have predicted when he was being evaluated at the Child Development Clinic in the Minneapolis Children’s Hospital, almost nine years ago. His IEP, neurology reports, forms for the Department of Developmental Disabilities, doctors’ reports, all have one six-letter word somewhere:

Autism.

And sometimes the puzzle to me is why it seems so hard, or unpleasant perhaps, or just unfathomable, to accept a genetic explanation for autism. As each day passes, I see more and more of Jim and of myself in Charlie and these observations reassure me more than anything else. Neither Jim nor I have autism. Charlie does.

I think there is (to me) the beginning of an answer somewhere in there.

The April issue of Pediatrics contains a new study on the household finances of families with autistic children. Families’ annual income falls short of average predicted income by as much as $6200; families also spend thousands of dollars on health care and educational and other therapies and services. Economist Guillermo Montes, Ph.D., the lead author of the study, is a senior researcher at the Children’s Institute at the University of Rochester. Some details:

Data collected from 1999 to 2000 showed that each year U.S. taxpayer dollars collectively pay $12,773 of the annual education expenses associated with each child with autism. In spite of this assistance, ASD-affected families still bore the brunt of the financial burden. Between un-actualized income (again, estimated near $6,200) and extensive out-of-pocket ASD-related expenditures – one 2006 national study from the University of Rochester estimated that these families paid nearly $5,300 more than other families – this direct-to-family cost may exceed $11,000 each year.

“More assessment is needed, but in the meantime it’s sensible for health care providers to ask families about financial difficulties and, whenever possible, assist them in accessing the resources they need,” Montes said.

Read the full study from Pediatrics.

Even if one is not paying for specialists and therapists who can cost a few hundred dollars an hour (depending on what they are providing), money just becomes an issue for families with a special needs child. First of all is the matter of work: A child may have so many needs, and need such constant attention, that one parent is simply not able to work. Second, as noted, kids with special needs often need specialized educational therapies and medical treatments.

Some thing just cost more for Charlie: We rarely leave Charlie with a babysitter, but we pay her much more than the average babysitter, that’s for sure. We pay out of pocket for Charlie’s dentist and for some of his doctors (such as the eye doctor), as we have a good rapport with certain doctors who are not in the “network” of our health insurance. We recently discontinued Charlie’s home ABA program in part because of the cost (it was like paying a second rent) and we’ve downsized to one car. And then there are the “surprise” costs from emergency plumber visits for reasons you’re welcome to imagine………

We have been fortunate in that we’ve both always had some kind of job throughout Charlie’s life—I’ve been able to work either part- or full-time. I teach college students and have been able to arrange my schedule so that I teach when Charlie is in school. This was a lot easier when I was working part-time as a writing instructor; now I’m in a full-time assistant professor position (and also have a lot of administrative duties advising students and co-directing my college’s Honors program) and fitting everything in requires constant coordination of schedules with Jim, a good knowledge of how to get in and out of Jersey City so I can rush home to meet the school bus, my parents (who are retired and visit several times a year), understanding colleagues. There have been a lot of times when I have wondered if working was the right thing for me to do and so far I know it has, though I admit I might be less stressed if I were a stay-at-home mom and didn’t find myself spending every free moment of the week scheduling my advisees for fall semester classes and planning a class on the history of the late Roman Republic.

That said: In a lot of ways Charlie costs us little. He is not interested in the latest fad toy or electronic device; he has made himself readily at home in every place we have lived, from the latest rental to my in-laws’ basement. He could care less about what the other kids are wearing, or how old his backpack is, or whether we live on the right or wrong side of the tracks. His favorite items are often things that we have had for a long time: Photos, a certain black shirt of Jim’s, some picture schedules, my CD collection, a crumbled program from a student variety show.

And, obviously, life with Charlie itself is priceless.

There’s one thing that determines when I sleep: When Charlie goes to bed. (So, in his pre-melatonin days, when he fell asleep at midnight at the earliest, “bedtime” for me took on all the aura of some kind of promised land.)

According to a new study in the Journal of Labor Economics, the schedule for TV shows, rather than natural circadian rhythms, determine the times when most Americans sleep:

In their forthcoming article for the Journal of Labor Economics, “Cues for Timing and Coordination: Latitude, Letterman, and Longitude,” authors Daniel S. Hamermesh, Caitlin Knowles Myers, and Mark L. Pocock look at the brief fight between American’s natural timing cues — the circadian rhythms determined by the sun — and the man-made cues brought on within the last century, mainly by the creation of time zones and the television broadcast schedule. In this relatively brief time, they find, the markers for how we structure our day have been dramatically altered.

Guess we are in the minority and not only because we currently don’t have a TV: Charlie has never been a big TV watcher himself; when the sun rises and when it sets regulates his sleep patterns (and, consequently, mine). The advent of Daylight Saving Time and the change back to Standard Time usually create some minor disturbances for him: Charlie runs by his internal clock and, even though the time difference is only one hour, the change in the time for the start of school and mealtimes sets things off. (Charlie does not yet know how to tell time using a clock; he’s been working on reading time on the hour and half-hour on a digital clock at school.)

Charlie has also come done with the cold/flu thing I had last week and passed the better part of Saturday in slumberland on the couch. He had a fever and a gurgling cough, and seemed the better for his long nap. He woke around 6.30pm and we asked him if he’d like to get take-out from his favorite hamburger place, which he had been calling for earlier in the day.

“No takeout!” said Charlie. He named the hamburger place and added “Sit.”

Which, in the middle of a severe rain deluge and heavy winds that rattled like a car engine, we did. Good to be back on the usual schedule of things with Charlie.

Financial struggles plague families of children with autism, according to a study by Deanna Sharpe, associate professor of personal financial planning in the University of Missouri’s College of Human Environmental Sciences and the mother of an autistic son. Science Daily quotes Sharpe, who says

“It is important for us to hear the voices of families who have financial struggles. There is strong pressure to do everything you can for your child. However, there is a great potential for families to spend a lot of money on therapy or new ideas that may be ineffective. Careful evaluation of therapies is important.”

Families quoted in the study did everything from skipping meals to depleting their savings and 401K plans, and even filing for bankruptcy, all to pay for treatments including “specialized child care, speech and language therapy, other types of one-on-one therapy, special interventions, and costly food or drug supplements.” Intensive programs using Applied Behavior Analysis (ABA) can cost $30,000 per year (at least). Other costs mentioned are “compensation and replacements costs for items that were destroyed” by autistic children, and also counseling and medication for parents themselves.

This study, which was published in the Journal of Family and Economic Issues, comes as no surprise: One family has spent $200,000 on therapies and parents sometimes hold fundraisers to raise money for a child’s therapy. As a comparison, back in 2004 it was estimated that it would cost a quarter million to raise a child from birth through age 17. BabyCenter offers a simple tool to estimate how much it would cost to raise a child in 2006 dollars (more than that quarter million).

I’ve never added up everything we’ve spent for Charlie: Besides all of the above, there are lawyer fees; the plumber’s bills (we lived in a one-bathroom house at the time when putting things in the toilet—-duplo Legos—provided great, if fleeting, amusement for one member of our household); fees for particular dentists and neurologists who are not in the network of practitioners covered by insurance; repairs to a beach house we rented; and on and on. Plus there are the realities of clothing and feeding a boy who just doesn’t stop growing: I know I didn’t shrink every one of Charlie’s shirts and pairs of pants, but the sleeves are “bracelet length” and his pants legs are already too short. I always steel myself when the clerk rings up the grocery bill with its so-high-figure; a boy’s got to eat (and eat).

And while there are some things we’ve paid for that I would not have knowing what I know now, I have to say: The gains Charlie has made, and the gains we’ve made as a family of three tightly connected individuals, are priceless and, yes, worth far more than their weight in gold.

I was talking to two of my students yesterday about classes for next year, their majors, scholarships and fellowships. Both had looked at websites for scholarships, and read the biographies of the winners, of college students who, while maintaining the highest GPAs, playing varsity sports, and conducting research in molecular biology, create medical clinics in foreign countries, develop plans for peace between various warring nations, play first violin in the orchestra, write poetry, serve as the editor for the campus newspaper and win the prize for best thesis……

“How does anyone do all that, Dr. Chew?” my students asked me, pointing out that they could hardly go for a year to an “underdeveloped nation” and teach English in an orphanage: Most of my students have to work—to pay for college, to help out their families. They set up their schedules so they are able take care of younger relatives, or elderly grandparents, while their parents work the graveyard shift. If they go abroad, they have to work more to pay for it. Those who have gone to various places around the globe have deeply benefited from the experience. And yet, when I think of college students doing work to make a difference, it’s the many young women (mostly) and young men who have chosen to spend time with Charlie and autistic kids who I think about first.

There’s Charlie’s teacher. She had come over for a home visit on Wednesday and we talked about setting up an afterschool schedule for Charlie incorporating the use of his Language Master to prompt his speech. Charlie was running up and down the hallway—-thumping all over the wooden floor—out of excitement at his teacher’s visit and, in part to calm him, I had him practice cello, and his teacher offered suggestions and encouragement.

There’s Charlie’s speech therapist whom we’ve known for five years and who is among the very (very few) people who I feel completely at ease for him to be with for long periods of time. After meeting Charlie’s bus, I had to go back to work to hear honors students defend their senior theses. I drove off with Charlie watching from the sidewalk beside the speech therapist, whom he matches now in height. “Take your time, don’t rush,” she assured me.

My drive back to Jersey City was slowed by a bad accident—-part of a tractor-trailer had fallen across three lanes of traffic in the local lane side of highway 78 and cars, yellow schoolbuses, and tractor trailers were crossing the concrete median and driving on the shoulder thisclose to my car in the express lane—-and by another big rig carrying an OVERSIZED LOAD that had, very mistakenly, gone up the entrance ramp of the no-trucks-allowed Pulaski Skyway. Nonetheless, I was just in time to hear the third student speak about the change to a market economy in Bulgaria and the resulting economic crisis. He was eloquent and passionate: This student is from Bulgaria on a full scholarship and, while far from home, it was clear that his research was motivated by something deeply personal.

The roads were clear as I drove west towards home. Charlie was smiling and called out “get socks!” and “bye, see you next time” to his therapist. He had gone for a ride on his scooter, did speech exercises, worked puzzles on the floor and clicked through more on his computer, played some board games; whatever the therapist had requested, Charlie had done, and happily.While Charlie packed his backpack and put a Capri Sun in his lunchbox, I graded a stack of quizzes. I was pulling on my coat so we could stop by the pharmacy when the thought hit me: I had forgotten to ask the therapist to return the housekey I had given her.

I quickly called her cell. “Oh, I left it right by the door, along with the garage door opener,” she said. And there indeed was the key.

What would I do without her, or Charlie’s teacher, or Jackie who works in my office and can decipher my handwritten notes to her……… What would I do without their help, and Charlie’s?

As I drove up the hill towards the pharmacy with Charlie singing in the backseat , I thought about how the work that we do for those close by us—for those who are part of our daily lives, close to heart if not to home—how that’s the work, the service, the achievements that makes a real difference to the world, and how it’s work that lasts and grows.