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.

Autism alters lives, but parents feel “blessed”, reports an article about a family in McAllen, Texas. Patrick and Sylvia Hamilton’s son Michael is 23. While they worry—as many, and perhaps all, of us do—about resources and opportunities as children get older, the Hamiltons have no regrets.

“Special children are born into special families,” Sylvia said. “We’re highly blessed.”

And special families, like the Hamiltons, do a lot to help their children with disabilities long into their adult years.

The constant need for care changes the course of all of their lives.

The scope of that impact varies with the severity of the disability. Many with disabilities are able to function on their own in society; others need more support from their families.

Patrick spends countless hours with his son, and says he truly enjoys his company.

“He’s kind of like my best friend,” Patrick said. “I don’t know what I’d do without him. He’s my partner. He’s who I hang out with.

“We go fishing over at the Island and catch whiting. We ride bikes together. He likes to throw the Frisbee.”

The parent of a 15-year-old severly autistic daughter, Scot Sea, writes this about the “extreme reality” that he lives with, in which

…… the daily routine of his household [is] “just the same scene from the same interminable clip on the late show from hell” …… [he] has nothing but contempt for those “New Age pests, overdosed on media mythology,” who tell him that being the parent of an autistic child is a blessing. Nonetheless — in isolation, rage and despair, and with no hope in sight — he perseveres in taking care of his daughter.

Sea’s essay appears in An Uncertain Inheritance: Writers on Caring for Family, edited by Nell Casey; the book is reviewed in the February 18th New York Times Book Review.

For myself, I’d be faster to say that being Charlie’s mother has been a blessing, an unexpected and rich gift that I’ve not always known how to hang on to. Yes, I’ve been isolated, and felt rage and despair. And, in many ways, I take issue at being told that “Charlie’s a blessing”—-these sorts of words are easy to say, but they’re just words, and life with Charlie is not always, or often, an easy street (not for him, for sure). I do know, and my husband Jim believes this too, that life with Charlie is just too good to miss out on. There’s mud and mess you  walk in and then one day you stumble, and your sole feels a lump: Unexpected gold.