A Perfect Storm
Originally posted November 2005
Love, Language, and Unintended Consequences
I recently got an e-mail from a mother who stated her opinion that alternative medicine shouldn't be dismissed as quackery. She discussed her autistic daughter's serious digestive problems and how much improvement she had seen in her daughter's health and development after removing milk and some other foods from the child's diet and buying nutritional products.
She also made this comment:
It is impossible to explain to the mainstream world how and why the "therapies" she has undergone work. As a result, we talk of "recovery," hoping to gain the ears of all those parents who believe their children are condemned to spend their lives the way my daughter was at two.
This, as I see it, is the crux of the debate between neurodiversity supporters and the alternative medicine crowd. I don't dispute that there are some parents who have seen substantial improvement in their kids' health and behavior after treating digestive problems and other physical ailments. No doubt these parents genuinely want to help other children in similar circumstances. But the problem arises from the language that is being used.
If this group of parents were talking about their children's recovery from milk intolerance, wheat intolerance, and so forth, they wouldn't hear a peep of protest from the neurodiversity folks. No one would deny that there are some autistic children who have digestive problems (although, as Autism Diva points out, the prevalence of gastrointestinal conditions has not been shown to be any higher among autistic children than in the general population).
But instead, some alternative medicine zealots have embarked on a melodramatic crusade to save the world's children from the calamity or the catastrophe of autism. Although this tactic is indeed an effective way to get attention, it's just flat wrong. Milk intolerance is not autism. Wheat intolerance is not autism. Irritable bowel syndrome is not autism. Mercury poisoning is not autism. And the consequences of using such extreme and misleading language to get attention may be far graver than many people realize.
Research funded by the U.S. National Institutes of Health has established that autism is a genetic condition that is over 90% heritable. These studies are being directed by Dr. Joseph Buxbaum, who gave an interview in February 2005 in which he stated that a prenatal test for autism could be developed within ten years. This prediction may be overly conservative: a genetic test for autism already exists and is expected to be made available in 2006. (It is not currently being marketed for purposes of prenatal diagnosis.)
Officials in the United States estimate the number of people with autism spectrum conditions at 1 in 166, while the UK's National Autistic Society places the figure at 1 in 110. These estimates refer to the number of people who would be diagnosable under DSM-IV criteria. As this website points out, there may be millions more who are genetically autistic and have no significant problems. It's possible that as many as 100 million people worldwide could be identified as autistic by a genetic test.
At present, the world's autistic population is caught in the path of a "perfect storm." Alternative medicine enthusiasts are declaring that autism is a horrible fate from which children must be "recovered" at great expense by means of uncertain therapies. At the same time, behaviorists are insisting that every autistic child, in order to have any hope of a productive future, must undergo 40 hours per week of intensive behavioral therapy, again at great expense and with no guarantee of useful results. There are groups and websites such as "Fighting Autism" that keep a tally of the number of autistic children born and the purported financial burden to society. (The autistics.org website discusses that particular bit of propaganda in more detail and has a very effective rebuttal to it.)
In the context of modern genetic science, the implications are obvious. How many parents would opt to continue a pregnancy, knowing that the child was autistic, if they believed that the child was doomed to be a tragic sufferer and/or a huge financial drain? Very few. Abortion would become routine. And yes, perhaps the increased media attention has resulted in some children being "recovered" from milk intolerance, et cetera, but the cost may be the total destruction of a genetic minority group of as many as 100 million.
We are standing on the brink of what may be the largest genocide in the history of humankind. And unlike the mass killings of the past, this one would be caused not by ethnic hatreds but, in large part, by the efforts of charitable-minded people seeking to help children through the use of grossly inaccurate language.
The road to hell, as the saying goes, is paved with good intentions.
Love, Language, and Unintended Consequences
I recently got an e-mail from a mother who stated her opinion that alternative medicine shouldn't be dismissed as quackery. She discussed her autistic daughter's serious digestive problems and how much improvement she had seen in her daughter's health and development after removing milk and some other foods from the child's diet and buying nutritional products.
She also made this comment:
It is impossible to explain to the mainstream world how and why the "therapies" she has undergone work. As a result, we talk of "recovery," hoping to gain the ears of all those parents who believe their children are condemned to spend their lives the way my daughter was at two.
This, as I see it, is the crux of the debate between neurodiversity supporters and the alternative medicine crowd. I don't dispute that there are some parents who have seen substantial improvement in their kids' health and behavior after treating digestive problems and other physical ailments. No doubt these parents genuinely want to help other children in similar circumstances. But the problem arises from the language that is being used.
If this group of parents were talking about their children's recovery from milk intolerance, wheat intolerance, and so forth, they wouldn't hear a peep of protest from the neurodiversity folks. No one would deny that there are some autistic children who have digestive problems (although, as Autism Diva points out, the prevalence of gastrointestinal conditions has not been shown to be any higher among autistic children than in the general population).
But instead, some alternative medicine zealots have embarked on a melodramatic crusade to save the world's children from the calamity or the catastrophe of autism. Although this tactic is indeed an effective way to get attention, it's just flat wrong. Milk intolerance is not autism. Wheat intolerance is not autism. Irritable bowel syndrome is not autism. Mercury poisoning is not autism. And the consequences of using such extreme and misleading language to get attention may be far graver than many people realize.
Research funded by the U.S. National Institutes of Health has established that autism is a genetic condition that is over 90% heritable. These studies are being directed by Dr. Joseph Buxbaum, who gave an interview in February 2005 in which he stated that a prenatal test for autism could be developed within ten years. This prediction may be overly conservative: a genetic test for autism already exists and is expected to be made available in 2006. (It is not currently being marketed for purposes of prenatal diagnosis.)
Officials in the United States estimate the number of people with autism spectrum conditions at 1 in 166, while the UK's National Autistic Society places the figure at 1 in 110. These estimates refer to the number of people who would be diagnosable under DSM-IV criteria. As this website points out, there may be millions more who are genetically autistic and have no significant problems. It's possible that as many as 100 million people worldwide could be identified as autistic by a genetic test.
At present, the world's autistic population is caught in the path of a "perfect storm." Alternative medicine enthusiasts are declaring that autism is a horrible fate from which children must be "recovered" at great expense by means of uncertain therapies. At the same time, behaviorists are insisting that every autistic child, in order to have any hope of a productive future, must undergo 40 hours per week of intensive behavioral therapy, again at great expense and with no guarantee of useful results. There are groups and websites such as "Fighting Autism" that keep a tally of the number of autistic children born and the purported financial burden to society. (The autistics.org website discusses that particular bit of propaganda in more detail and has a very effective rebuttal to it.)
In the context of modern genetic science, the implications are obvious. How many parents would opt to continue a pregnancy, knowing that the child was autistic, if they believed that the child was doomed to be a tragic sufferer and/or a huge financial drain? Very few. Abortion would become routine. And yes, perhaps the increased media attention has resulted in some children being "recovered" from milk intolerance, et cetera, but the cost may be the total destruction of a genetic minority group of as many as 100 million.
We are standing on the brink of what may be the largest genocide in the history of humankind. And unlike the mass killings of the past, this one would be caused not by ethnic hatreds but, in large part, by the efforts of charitable-minded people seeking to help children through the use of grossly inaccurate language.
The road to hell, as the saying goes, is paved with good intentions.
posted by abfh at
3:12 PM
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