Last month, Autism Speaks, perhaps the best-known autism
organization, revised its mission statement for the first time since it began
in 2005. As Michelle Diament notes in the article “Autism Speaks No Longer
Seeking Cure” in the October 14, 2016, edition of Disability Scoop, “one
notable objective is no more.” [To read this online article, please click
here.] Even though Autism Speaks merged with Cure Autism Now in 2007, the new
mission statement eliminates the goal of curing autism.
The previous mission statement asserted: “We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.” The revised mission statement instead mentions, “advancing research into causes and better interventions for autism spectrum disorders and related conditions.” An Autism Speaks board member explains the reason for the change: “…the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum––rather than something that has to be done to.” I suspect this references the neurodiversity movement in which some adults with autism see the condition as simply a variation of brain wiring and convey resentment that autism is viewed as a disease to be cured. Sadly, most people with autism lack the language skills to be able to express how they feel, and many of them deal with debilitating conditions that exist with autism, including anxiety, seizure disorders, and digestive issues.
Whether Autism Speaks is bowing to the pressure of a small percentage of people with autism or whether they are abandoning a crucial and worthy pursuit, this organization is not using its extensive financial resources in ways that would be most beneficial to families dealing with autism. However, they are not the only ones failing to use their funding wisely. The National Institutes of Health, an American government agency that oversees billions of dollars for medical research, wastes money every year on autism research that is essentially worthless.
In her Age of Autism October 13, 2016, article “2015 NIH Autism Grants––Why We Are Making NO Progress,” Katie Wright provides extensive data regarding how the National Institutes of Health allocate autism research funding. [To read this article, please click here.] Ironically, Katie Wright’s parents started Autism Speaks when her son was diagnosed with autism. However, she has been critical of the organization and its focus on genetic research instead of environmental research.
In this article, she notes that despite nearly $200 million dollars spent annually by the NIH on autism research, after nearly a decade, no real progress has been made in finding a cause. Of this amount, the primary research money is spent on genetics and brain imaging studies with only a fraction of research funding––$8 million––being spent on environmental studies with regard to autism. Additionally, she notes that twenty percent of these environmental studies focus upon foreign countries, such as Finland, Denmark, Korea, and Jamaica, none of which has helped to determine causes of autism in American children.
In addition, she notes that the National Institutes of Health spend five times as much research funding on behavioral intervention as biomedical intervention, even though many children and adults with autism also deal with serious autoimmune and gastrointestinal issues as well as seizures. Moreover, many of the behavioral studies duplicate previous research and have nothing new to offer. As she concludes, “There has been little to no return for autism families or the taxpayer from this research.” Considering the increasing rates of autism and the costs of taking care of these children potentially all of their lives, everyone should be concerned about how taxpayer money is being wasted on research that is not producing, nor even likely to produce, a cure for autism.
Recently, The Atlantic published an article entitled “The Dangers of Snake-Oil Treatments for Autism” describing how parents of children with autism seek various nontraditional methods to help their children. [To read this article, please click here.] Author Alisa Opar focuses upon autism mom Ariane Zurcher’s desperate attempts to help her daughter, Emma, by pursuing a wide variety of interventions. According to Emma, only occupational therapy was beneficial. Her mother has embraced neurodiversity, stating, “My entire focus changed. Instead of fighting against Emma’s neurology and trying to cure this heinous disorder, I started finding ways to help her flourish.”
The author notes that 88% of children with autism are treated with alternative therapies, which she describes as having “no scientific evidence to support these purported benefits” as well as few being “adequately tested for safety or efficacy” with some being “downright dangerous.” Furthermore, she states, “These unproven treatments do not come cheap, and some are harmful.” In this article, parents who pursue alternative therapies are portrayed as desperate, gullible, and ignorant. For example, she states, “For most parents, who have little understanding of how science is done, wading through claims about alternative treatments can be befuddling.” Additionally, she quotes clinical psychologist Catherine Lord, who describes autism research as “probably very confusing for parents.”
However, the article also provides clues as to why parents seek alternative therapies. Columbia University psychiatry professor and child and adolescent psychiatrist Jeremy Veenstra-VanderWeele is quoted: “We do not have treatments that relate in any way to what causes autism spectrum disorder, or that really relate to what’s happening in the brain.” Moreover, the author states, “The list of treatments with a solid evidence basis is short.” Perhaps if the NIH funded better research and Autism Speaks rededicated its focus and funding toward curing autism, more treatments would be available to parents.
We parents who have pursued alternative therapies, such as sensory integration, chelation, special diets, nutritional supplements, cranialsacral therapy, and other interventions we believed would help and not harm our children with autism, had to do something to make our kids better. We could not wait around for traditional medicine to come up with treatments that may be as “downright dangerous” (such as the FDA-approved medication Risperdal) as alternative treatments are purported to be.
Until a cure for autism is found––and I believe that not only will a cure be found but also that parents will be crucial in finding that cure––parents need to keep searching for safe ways to help make our children better. We cannot rely upon Autism Speaks nor the National Institutes for Health nor conventional medicine, all of which have failed our kids miserably. In the meantime, I keep praying for the day that the cure for autism will come and strive to keep Alex as healthy as possible, knowing that with God, all things are possible.
“Lord, Your discipline is good, for it leads to life and health. You restore my health and allow me to live!” Isaiah 38:16
The previous mission statement asserted: “We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.” The revised mission statement instead mentions, “advancing research into causes and better interventions for autism spectrum disorders and related conditions.” An Autism Speaks board member explains the reason for the change: “…the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum––rather than something that has to be done to.” I suspect this references the neurodiversity movement in which some adults with autism see the condition as simply a variation of brain wiring and convey resentment that autism is viewed as a disease to be cured. Sadly, most people with autism lack the language skills to be able to express how they feel, and many of them deal with debilitating conditions that exist with autism, including anxiety, seizure disorders, and digestive issues.
Whether Autism Speaks is bowing to the pressure of a small percentage of people with autism or whether they are abandoning a crucial and worthy pursuit, this organization is not using its extensive financial resources in ways that would be most beneficial to families dealing with autism. However, they are not the only ones failing to use their funding wisely. The National Institutes of Health, an American government agency that oversees billions of dollars for medical research, wastes money every year on autism research that is essentially worthless.
In her Age of Autism October 13, 2016, article “2015 NIH Autism Grants––Why We Are Making NO Progress,” Katie Wright provides extensive data regarding how the National Institutes of Health allocate autism research funding. [To read this article, please click here.] Ironically, Katie Wright’s parents started Autism Speaks when her son was diagnosed with autism. However, she has been critical of the organization and its focus on genetic research instead of environmental research.
In this article, she notes that despite nearly $200 million dollars spent annually by the NIH on autism research, after nearly a decade, no real progress has been made in finding a cause. Of this amount, the primary research money is spent on genetics and brain imaging studies with only a fraction of research funding––$8 million––being spent on environmental studies with regard to autism. Additionally, she notes that twenty percent of these environmental studies focus upon foreign countries, such as Finland, Denmark, Korea, and Jamaica, none of which has helped to determine causes of autism in American children.
In addition, she notes that the National Institutes of Health spend five times as much research funding on behavioral intervention as biomedical intervention, even though many children and adults with autism also deal with serious autoimmune and gastrointestinal issues as well as seizures. Moreover, many of the behavioral studies duplicate previous research and have nothing new to offer. As she concludes, “There has been little to no return for autism families or the taxpayer from this research.” Considering the increasing rates of autism and the costs of taking care of these children potentially all of their lives, everyone should be concerned about how taxpayer money is being wasted on research that is not producing, nor even likely to produce, a cure for autism.
Recently, The Atlantic published an article entitled “The Dangers of Snake-Oil Treatments for Autism” describing how parents of children with autism seek various nontraditional methods to help their children. [To read this article, please click here.] Author Alisa Opar focuses upon autism mom Ariane Zurcher’s desperate attempts to help her daughter, Emma, by pursuing a wide variety of interventions. According to Emma, only occupational therapy was beneficial. Her mother has embraced neurodiversity, stating, “My entire focus changed. Instead of fighting against Emma’s neurology and trying to cure this heinous disorder, I started finding ways to help her flourish.”
The author notes that 88% of children with autism are treated with alternative therapies, which she describes as having “no scientific evidence to support these purported benefits” as well as few being “adequately tested for safety or efficacy” with some being “downright dangerous.” Furthermore, she states, “These unproven treatments do not come cheap, and some are harmful.” In this article, parents who pursue alternative therapies are portrayed as desperate, gullible, and ignorant. For example, she states, “For most parents, who have little understanding of how science is done, wading through claims about alternative treatments can be befuddling.” Additionally, she quotes clinical psychologist Catherine Lord, who describes autism research as “probably very confusing for parents.”
However, the article also provides clues as to why parents seek alternative therapies. Columbia University psychiatry professor and child and adolescent psychiatrist Jeremy Veenstra-VanderWeele is quoted: “We do not have treatments that relate in any way to what causes autism spectrum disorder, or that really relate to what’s happening in the brain.” Moreover, the author states, “The list of treatments with a solid evidence basis is short.” Perhaps if the NIH funded better research and Autism Speaks rededicated its focus and funding toward curing autism, more treatments would be available to parents.
We parents who have pursued alternative therapies, such as sensory integration, chelation, special diets, nutritional supplements, cranialsacral therapy, and other interventions we believed would help and not harm our children with autism, had to do something to make our kids better. We could not wait around for traditional medicine to come up with treatments that may be as “downright dangerous” (such as the FDA-approved medication Risperdal) as alternative treatments are purported to be.
Until a cure for autism is found––and I believe that not only will a cure be found but also that parents will be crucial in finding that cure––parents need to keep searching for safe ways to help make our children better. We cannot rely upon Autism Speaks nor the National Institutes for Health nor conventional medicine, all of which have failed our kids miserably. In the meantime, I keep praying for the day that the cure for autism will come and strive to keep Alex as healthy as possible, knowing that with God, all things are possible.
“Lord, Your discipline is good, for it leads to life and health. You restore my health and allow me to live!” Isaiah 38:16
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