Interview with Bonnie Ventura, originally posted by Nathan Young on the "Autism Politics" forum
of Asperger's Syndrome World Community, December 2005
Nathan:
Are you worried about the development of a prenatal test for autism, if so why?
Bonnie:
Yes, I am very concerned about the development of a prenatal test for autism. In an interview in February 2005, one of America's leading autism researchers, Dr. Joseph Buxbaum, who directs the Autism Genome Project at the Mount Sinai School of Medicine, stated that there could be a prenatal test within 10 years. Others estimate that prenatal testing will begin even sooner. Bioethics professor Arthur Caplan expects to see the first prenatal test for autism in three to five years. He is the author of an article urging society to consider the potential consequences if the unique perspectives of autistic people were to be lost.I created a web page in May 2005, Autism Research and Prenatal Testing, which discusses the social and ethical implications of autism genetic research.
Nathan:
Who is funding the development of a prenatal test for autism?
Bonnie:
In the United States, much of the funding for autism genetic studies, including Dr. Buxbaum's research, comes from the National Institutes of Health. In other words, Americans' tax money is being used to fund eugenics research. Some private groups are also funding these studies, including Cure Autism Now (CAN) and the National Alliance for Autism Research (NAAR).Researchers funded by CAN already have developed a genetic test for autism, which is expected to be made available in 2006 and will be used initially for the purpose of early diagnosis in young children.
Nathan:
Does the war on autism have anything to do with prenatal testing for autism?
Bonnie:
Prenatal testing research is part of today's widespread climate of intolerance toward the autistic population, manifested not only in eugenics funding, but also in "cure" campaigns that use military rhetoric. Autism Diva discusses how the well-funded groups that are promoting the dangerous fad treatment of chelation (which has killed one autistic child already) routinely use extreme "war on autism" language.Frank Klein writes that the cure mentality "creates a dynamic in which nearly any risk is acceptable in fighting the autism, because living with autism, as they see it, is a fate even worse than death."
In such a social climate, prenatal testing becomes the next logical step in saving the world's people from a condition that is viewed as a tragic calamity. Putting the issue in historical perspective, Kathleen Seidel describes how a similar mass hysteria led to the formation of the eugenics movement in the early twentieth century.
In short, the "war on autism" is just another of history's many outbreaks of genocidal prejudice against a minority group; our world has seen it before, all too many times.
Nathan:
Do you think autism prenatal testing might result in the destruction of developing life by means of abortion for those tested with autism spectrum differences (A.S.D.s)?
Bonnie:
Autism prenatal testing would have no purpose other than abortion. Such a test would stand in stark contrast to other prenatal tests that have legitimate medical purposes. For example, there is a prenatal test for neural tube defects, which makes it possible to cure or greatly reduce spina bifida by performing surgery on a fetus while it is still in the womb. The Down's Syndrome test, although it has come to be used for abortion, was originally developed with funding from the March of Dimes to improve the odds of survival for Down's babies, who often have heart defects and other problems and can benefit from specialized prenatal care.No such medical considerations exist with regard to autistic babies, who do not require any unusual prenatal care or treatment. Moreover, because autism is a broad diagnostic category that encompasses children with many different needs, a prenatal diagnosis would not enable a parent to make early arrangements for therapies or other services.
Nathan:
With all of the negative publicity concerning autism in general do you believe a parent is more likely to fear having a child with any form of autism?
Bonnie:
Fear of the unknown is one of the most powerful motivating forces in human society. With so much ignorance and negativity surrounding autism spectrum differences, many people are terrified by the thought of having a child with any form of autism. Parents often react to an autism spectrum diagnosis as if they had just learned of the child's death.The fear of autism is so extreme that some parents are now putting their young children at risk of contracting dangerous childhood diseases by refusing to vaccinate their children, although there is no sound scientific evidence that vaccines have anything to do with autism.
When a young child is diagnosed as autistic, the parents often choose not to have any more children because the possibility of having another autistic child is so frightening to them. Parents make this decision so frequently that it even has a name, stoppage. Although a child may be only two or three years old at the time of diagnosis, and thus his future strengths and difficulties cannot be predicted accurately, the parents may be so strongly influenced by popular stereotypes that they automatically assume the child will never be able to leave home.
As the child grows, any difficulties are seen as confirming the parents' worst fears, even if similar problems would have gone almost unnoticed in a non-autistic child. One mother wrote about how much she worried that her autistic teenage son would not be able to live independently because he did not know how to prepare food. She never thought about the fact that there are millions of men who do not know how to cook.
Nathan:
Do you believe that discrimination could exist as a result of prenatal testing?
Bonnie:
When prenatal testing is used for purposes of abortion, it reflects a social value judgment on whether or not a particular group of people has any intrinsic worth as human beings, on who should and who should not inhabit the world. Prejudice and discrimination are already a fact of daily life for many people on the autistic spectrum. It is an unfortunate fact that many autistics have been excluded from various aspects of public life for no other reason than because they are different. If abortion of autistic children were to become routine, such attitudes would no doubt be strengthened.Nathan:
In what ways do you believe autism should be differently understood and presented in society? Such as on television, newspapers, and other general sources of information made available to the public.
Bonnie:
Replacing disease terminology and sensationalistic language with neutral and accurate descriptive terms is the most important change that needs to be made in the way autism is presented in the media and elsewhere. The language used in "autism awareness" campaigns has been so relentlessly negative that some parents feel compelled to hide news stories about autism from their autistic children.Autism researcher Simon Baron-Cohen points out that the routine use of disability language and other value-laden terminology in describing autism spectrum differences is pejorative; he argues that, instead, autism should be described as a different cognitive style and as a natural part of human diversity. Another respected autism expert, Tony Attwood, who has written extensively on Asperger's syndrome, suggests rewording the diagnostic criteria in positive terms and even replacing the term "diagnosis," which itself has medical and disease connotations, with a neutral term such as "discovery."
The negative social value judgments inherent in medical and disability labels can cause significant emotional damage to many children. It is very important for professionals, educators, and the media to be aware of the potential for harm when language is used carelessly.
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