Wednesday, August 16, 2006
Mothers of the "Cured"
Maybe there's something about the upcoming alignment of the planets or a phase of the moon, but for the past two days, we at the bookstore have had run-ins with customers (or not-customers, as the case may be) claiming their children have been "cured" of autism. One woman called to complain that our latest catalog was doing the community a great disservice by only listing one title on biomedical treatment options, because that was what had cured her son, and he was now completely symptom free. (Explanation that the catalog is not comprehensive, and that other titles could be found on the website did not mollify her.) Another woman came in to ask about books on the casein-free/gluten-free diet, saying that her son is now cured through that method, as well.
These mothers, as well as the ones who have written books about the "miraculous cures" of their sons through early intervention programs, bother me. Or rather, their claims do. I'm glad their children have improved in their abilities to communicate effectively with the outside world. That is an accomplishment and occasion for celebration. But pretty much without exception, the people making these claims make them immediately after their child has finished early intervention services.
The mother asking about the GF/CF diet books today has a son who's 4. She thinks he's cured. But what is he going to be like at 8, 12, 16? The behavioral, social, and academic expectations of a 4-year-old are quite different from those of an adolescent. Their claims of a cure annoy me because they are giving false hope to others in an extremely evangelical manner (not to mention making all the parents without access to the miraculous early intervention services feel guilty,) but they also make me uncomfortable because they are so short-sighted. You never see a parent of a teenager or adult on the spectrum talking about how their son was cured at age 3, because they know it is a lifelong pervasive developmental disorder.
Just because the biomedically "cured" preschooler can now play in the regular preschool class without rocking in the corner or biting everyone within reach doesn't mean that when he's in 4th grade and kids are starting to figure out who's cool and who isn't, that he won't be completely out of the loop. Preschoolers don't make it obvious that they can't understand facial expressions, tone of voice, metaphorical speech, or other social nuances. They aren't expected to do academic work that requires extrapolation or reading between the lines. They don't have to worry about dating, keeping a job, or living independently. So I feel bad for these mothers, no matter how abrasive that one on the phone was, because they're going to have to go through the realization that their child has autism all over again the next time a developmental milestone is missed or a social encounter spectacularly fails. By claiming their child is cured, they aren't doing themselves or their child any favors.
Maybe there's something about the upcoming alignment of the planets or a phase of the moon, but for the past two days, we at the bookstore have had run-ins with customers (or not-customers, as the case may be) claiming their children have been "cured" of autism. One woman called to complain that our latest catalog was doing the community a great disservice by only listing one title on biomedical treatment options, because that was what had cured her son, and he was now completely symptom free. (Explanation that the catalog is not comprehensive, and that other titles could be found on the website did not mollify her.) Another woman came in to ask about books on the casein-free/gluten-free diet, saying that her son is now cured through that method, as well.
These mothers, as well as the ones who have written books about the "miraculous cures" of their sons through early intervention programs, bother me. Or rather, their claims do. I'm glad their children have improved in their abilities to communicate effectively with the outside world. That is an accomplishment and occasion for celebration. But pretty much without exception, the people making these claims make them immediately after their child has finished early intervention services.
The mother asking about the GF/CF diet books today has a son who's 4. She thinks he's cured. But what is he going to be like at 8, 12, 16? The behavioral, social, and academic expectations of a 4-year-old are quite different from those of an adolescent. Their claims of a cure annoy me because they are giving false hope to others in an extremely evangelical manner (not to mention making all the parents without access to the miraculous early intervention services feel guilty,) but they also make me uncomfortable because they are so short-sighted. You never see a parent of a teenager or adult on the spectrum talking about how their son was cured at age 3, because they know it is a lifelong pervasive developmental disorder.
Just because the biomedically "cured" preschooler can now play in the regular preschool class without rocking in the corner or biting everyone within reach doesn't mean that when he's in 4th grade and kids are starting to figure out who's cool and who isn't, that he won't be completely out of the loop. Preschoolers don't make it obvious that they can't understand facial expressions, tone of voice, metaphorical speech, or other social nuances. They aren't expected to do academic work that requires extrapolation or reading between the lines. They don't have to worry about dating, keeping a job, or living independently. So I feel bad for these mothers, no matter how abrasive that one on the phone was, because they're going to have to go through the realization that their child has autism all over again the next time a developmental milestone is missed or a social encounter spectacularly fails. By claiming their child is cured, they aren't doing themselves or their child any favors.
