The autism buzz fest du jour is the nearly universal outcry against Sharron Angle's recent remarks regarding autism insurance mandates. Let me state from the outset that I have no sympathy for Ms. Angle—her apparent use of quotes around the word “autism” was uncalled for and off point, and her understanding of actual autism issues appears to be pretty much non-existent. Of course, this distinguishes her from most other public officials, and nearly all autism scientists, only in the sense that Ms. Angle has committed the error of making her ignorance both public and obvious.
On the underlying issue, however—that of autism insurance mandates—the situation is far more murky than the many critics of Ms. Angle would have us blithely believe. As I have stated previously, autism insurance mandates are a clear instance of placing the cart before the horse, because the treatments being mandated for coverage—mostly ABA and pharmaceutical interventions—are not only undemonstrated as effective, they carry considerable risk of actually doing more harm than good. Everyone needs to stop and remember that expense is not a synonym for value, and that intervention is not a synonym for efficacy. Mandating insurance coverage for costly treatments that might be ineffectual at best, and harmful at worst, is certainly not in the best interest of autistic individuals. Ironically enough, what clearly would be in the best interest of autistic individuals, yet are often mandated against—acceptance and understanding—these things cost nary a cent.
Adding further confusion to the matter, we now have ASAN weighing in on the issue, in the form of an online petition calling for an apology from Ms. Angle. Unfortunately for ASAN, it has lost all its credibility on this issue by jumping headlong onto the bandwagon of insurance reform, turning a willfully blind eye to the unscientific and illogical nature of its policy. If ASAN really wants to help autistic individuals, then I think it should be far less concerned with Ms. Angle's remarks than with the potentially harmful effects of the dubious treatments ASAN now publicly and vigorously supports. Indeed, if this is going to become a battle between Ms. Angle and ASAN, then I hope it is a battle both sides lose, because trust me, no matter how ignorant and illogical Ms. Angle's remarks and attitudes might happen to be, the remarks and attitudes on the other side of the autism insurance mandate issue—including those of ASAN—sound no less ignorant and illogical.
2 comments:
I agree with you Alan, for the same reasons you mention, that ABA and drugs are more likely to do harm than good, especially when administered by incompetent people.
I did sign the petition today though, but with mixed feelings. I like that it called her remarks "ignorant", for they truly were. On the other hand, saying anything in the media just gives her more attention than she deserves. Sounds like we're actually worried she could get elected.
I can be hopeful and patient, just wait and see what happens, but if she were elected, I might feel pressured to "make use of our 2nd amendment remedies". ;-)
I agree with Alan that "...ABA and pharmaceutical interventions—are not only undemonstrated as effective, they carry considerable risk of actually doing more harm than good" but I disagree with Clay "that ABA and drugs are more likely to do harm than good, especially when administered by incompetent people."
Based on my own personal experience and conversations over the decades with other parents, I am more concerned about the long-term harm of ABA when administered by competent people. ABA is an extremely powerful tool based on decades of animal experiments but human beings are not the same as pigeons, mice or even monkeys. Very importantly, each human being is unique, but autistics seem to often have sensory processing differences that may account for the considerable risk of extraordinarily severe harm for at least some autistics, including my own son Ben when several years of ABA was combined with the onset of puberty. It was ignorant of Clay to be dismissive of a particular sensory processing difference of my son Ben just because Clay did not have the same experience.
I realize that my own personal experience woulc be considered by skeptics as merely an anecdote and I am not aware of peer-reviewed studies of scientific experiments to support the position of Alan quoted above. If Alan has any such citations, I would greatly appreciate the information.
Arthur Golden
Post a Comment