There’s a new study by Molly Helt et al. out about recovery from autism in the December Neuropsychology Review. Kev at Left Brain/Right Brain has an overview; here’s the abstract:

Although Autism Spectrum Disorders (ASD) are generally assumed to be lifelong, we review evidence that between 3% and 25% of children reportedly lose their ASD diagnosis and enter the normal range of cognitive, adaptive and social skills. Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity. Earlier age of diagnosis and treatment, and a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified are also favorable signs. The presence of seizures, mental retardation and genetic syndromes are unfavorable signs, whereas head growth does not predict outcome. Controlled studies that report the most recovery came about after the use of behavioral techniques. Residual vulnerabilities affect higher-order communication and attention. Tics, depression and phobias are frequent residual co-morbidities after recovery. Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal. Improving nutrition and sleep quality is non-specifically beneficial.

There’s discussion over the specifics of the study at Kev’s blog; I’d like to consider the ramifications of the whole notion of “recovery from autism” as it can affect parents’ decisions about “treatments” and “therapies” for autism, and also on the popular perception of what autism is.

Recovery can be distracting. It can lead you to make “curing” a child of autism completely and of making her or him “typical” and “normal,” over and above seeking to help a child develop, learn and grow as much as she or he is able. It can lead you to focus on a single long-term wish of “recovery,” so that those smaller gains, while remarked upon, seem like small steps on the path toward a bigger something else,”recovery.”

Further, the notion of “recovery from autism” suggests that autism is something to be recovered from; is a disease or illness. While some do prefer to view autism this way, such a view can be detrimental to an understanding of autism as a lifelong condition. And, it can be harmful not only to the perception of autism, but also simply to autistic persons themselves. Sure, you can’t catch autism, but the more that is heard about autism as “maddening” and devastating, debilitating, etc.,, etc., and the more that the “behavior problems” of autistic children are the main thing that is described, the more a seed is planted in people’s minds that doing away with autism, or at least “getting the autism out of one’s child,” is what has to be done. In the name of recovery, some have tried treatments (such as chelation, often of an “alternative” nature, that have no evidence beyond anecdotal reports to recommend them, and that have sometimes proven dangerous, if not fatal, to a child’s health.

The entire December issue of Neuropsychology Review is about autism, with the title of “Autism Spectrum Disorders: Complex, Controversial, and Confounding.” While the article on “Can Children with Autism Recover?” may get a great deal of attention, other studies to note are on the rising prevalence rate and the proliferation of theories; regression and autism; the “triad of impairments“—social interaction, communication, and flexible imaginative—used to diagnose autism; and bridging the gap between neuropsychological evaluations and educational planning.

I know there’s a lot of varying opinions about “recovery from autism.” When my son was first diagnosed, and in the wake of reading books like Catherine Maurice’s Let Me Hear Your Voice: A Family’s Triumph Over Autism, it seemed that we could not not try to “recover” Charlie. But then I started to realize that I was valuing “recovering” Charlie (whatever that meant) over cheering on, appreciating, celebrating the small gains Charlie made and, too, life with Charlie.

I hope I’m not so distracted anymore.

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.

A new national strategy for screening for Down syndrome in Denmark has halved the number of Down Syndrome births and led to a 30% increase in infants diagnosed with the condition. The Danish National Board of Health issued guidelines for prenatal screening and diagnosis for Down Syndrome in 2004; these guidelines (from Science Daily)

included the offer of a combined test for Down Syndrome (based on combination of maternal age, plus serum and nuchal screening) in the first trimester. This test gave women a risk assessment for Down Syndrome at an early stage in the pregnancy. Women whose risk was higher than a defined cut off were referred for invasive diagnostic tests (chorionic villus sampling or amniocentesis).

The study is published in the November 27th British Medical Journal.It was recently reported that births of children with Down Syndrome are increasing in the UK. While most women who receive a prenatal diagnosis of Down Syndrome still choose not to have the child, more are now deciding to.

Carol Boys, chief executive of the [Down's Syndrome Association], had not expected the rise in Down’s syndrome births. “It seems to show that more parents are thinking more carefully before opting for prenatal screening and termination – that being born with Down’s syndrome is being seen in a different light today,” she says on the programme.

Substitute “autism” for “Down Syndrome” in this post—-consider the increasingly widespread use of genetic testing even for things like what sport a 2 1/2-year-old should start to train for—and you know we’ve got some seriously difficult questions ahead of us.