Autism Vox

A Visit to an Old Friend; a New Study on Childcare

by Kristina Chew, PhD on July 8th, 2008

On Sunday I saw a college friend who I haven’t seen since her wedding (which I was grateful I was even able to go to—–she got married just after we returned from the Midwest to New Jersey and Charlie, who was having a lot to adjust to, was still queasy from it all; Jim dropped me off in front of the church just before the bridal party was lining up, and my dress was somehow spotless).

Between my friend and me, there’s been several jobs, moves around the country, and she’s a mother now, too. There was an impossible amount of catching up to do. Nonetheless, the one topic we kept returning to was our kids, their education, their needs, and daycare.

Once upon a time my friend and I had talked for hours about avant-garde Asian-American performance artists: You talk about what matters with an old friend, and a good one. She mentioned one family she knows who had moved out to the West Coast and then come back to the Midwest, for the daycare, and I thought about how daycare was the very topic I had written about on Saturday night, before driving up for my visit.

As I’ve noted, Charlie’s daycare/babysitting team consists of primarily of two people who both work full-time relatively far away from our house (this would be Jim and me). The three additions to this team—-our speech therapist-once-babysitter and my parents who live 3000 miles away—help out more than I can say, at intervals. Charlie has too many needs to go to a regular daycare or after-school care and while it can be a bit harried to get home in time on the highway, and to make sure Jim and I coordinate schedules so someone can be home if Charlie gets sick, I’ve valued every moment of time I’ve been able to spend with my boy. It’s a big part of how I’ve been able to understand Charlie’s communication, of some words and singing, sounds, body language, gestures, shirt color choices.

Necessity is the mother of invention: We’ve managed because we’ve just had to, like families everywhere. I was checking out a Seattle dad’s blog and read about a just-published study in Pediatrics by an economist, Guillermo Montes, who’s also studied the effects of having an autistic children on household income. The new study is Child Care Problems and Employment Among Families With Preschool-Aged Children With Autism in the United States and is also authored by Jill S. Halterman, MD, MPH.

Montes and Halterman write that, in families with autistic children, there is “higher use of child care services and higher probability that child care problems will greatly affect employment.” More specifically:

The impact of childhood autism on parental employment is largely unknown. A nationally representative study estimated that households with a child with autism earn 14% less income than demographically and educationally comparable households. In another population-based study, fathers of children with autism were less likely to report full-time employment compared with other fathers and were more likely to work part time. A possible explanation is that the burden of autism on the family economy is mediated by different employment choices made by caregivers in response to inadequate community resources.

Research has shown that parents of children with emotional and behavioral disorders often lack appropriate community-based services and resources needed to support work and family obligations. Families may have to accommodate work and family life to the behaviors and needs of the disabled child. In this context, it is not surprising that families with children with serious disabilities balance family and work responsibilities differently from other families.

For preschool-aged children, a critical community resource is the availability and stability of child care services that meet both the child’s needs and the parent’s work schedule. Recent research has shown that that even publicly funded prekindergarten programs expel children with behavioral problems at higher rates than the public school system at older grades. The rates of expulsion for children with developmental problems from privately funded and operated child care centers are unknown but are believed to be higher, given that the private sector does not have the restrictions against expulsion that are present in the public sector.

While I don’t consider autism a “burden” (not in our household and lives), it is the case that Charlie’s needs have determined every aspect of our lives, jobs, and work schedules. Charlie’s had a lot of tough behaviors of the sort that people talk about in the context of “autism” and “nightmare”: These led to his being sent out of district in the town we used to live in, several moves, huge paycheck-swallowing therapy bills, etc., etc.. I hope the study can help to stoke a discussion about daycare, after-school care, community care, and work, and not be seen as further testament to the woes of families of autistic children.

On the way to visit my friend late Sunday morning, I realized I should have been on the Local lane of the New Jersey Turnpike, not the Express, but it was too late. I saw my exit four lanes over and across a concrete barrier and got off the road as soon as I could, before finding myself about to get on the George Washington Bridge. I turned around and went south, only to discover that there didn’t seem to be an exit on the southbound side and ended up in Jersey no-man’s land in a hospital parking lot. I couldn’t find a single sign for Turnpike North and didn’t want to get back on the Turnpike South and end up halfway home—I looked around and found a jughandle and signs for the GW Bridge and went over an overpass and voilà, a (tiny) sign for Turnpike North. This time I got off at the right exit and proceeded north (and passed a certain DAN! practitioner I used to go to for Charlie; that’s another post). I pulled into my friend’s parents’ driveway after going past their house, where, a long time ago, I’d stayed and enjoyed morning conversation with her father and older brother.

He has a young child now, too, and told me I recalled the main character of this movie.

(I haven’t seen it, surprise surprise—-that babysitter thing.)

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