Thank you very much for your letter, and for your willingness to discontinue use of the term "mad child disease" to describe autism. I hope that Dr. Boyd Haley and all others who have propagated it will eventually see the wisdom in abandoning its use, too. I first learned of this matter last Tuesday via the Schafer Autism Report, and was astounded that people with professional and academic credentials would use such an offensive phrase to describe autism — especially the chairman of a public university's chemistry department, and a medical doctor affiliated with the University of Washington, home of one of the nation's most prestigious autism research centers. Since the phrase "mad child disease" was disseminated in multiple locations by a variety of individuals, I wasted no time in preparing a petition to galvanize public protest and to persuade all who have used this phrase to step back and take a look at the human consequences of using inflammatory, stigmatizing language to describe autism.
The coinage and dissemination of the revolting phrase "mad child disease" constitutes a particularly toxic form of sound-bite politicking. No matter how noble your, Dr. Haley's or anyone else's goals might be, autistic people, family members such as myself who care about our loved ones' dignity, and academics and service providers who prefer to maintain a professional demeanor and to treat their clients with respect, are appalled by the use of denigrating, sensationalistic language to make an emotional impact, in order to garner political support, publicity and research funding.
This phrase is the most recent linguistic manifestation of society's unwillingness to accept the pervasiveness of cognitive difference, and its persistence throughout history. Unfortunately, the tendency to refer to autism and autistic people in degrading terms has grown to epidemic proportions. This phenomenon seems to be particularly acceptable amongst those who seek to promote the concept that mercury toxicity and/or environmental contaminants are the sole causes of autism; those who associate primarily with parents of autistic children, but do not seek out the opinions of autistic adults; those who seek to provoke an emotional reaction in order to engender support for their hypotheses simply because such provocative tactics may be effective; and those who are unwilling to consider the impact of their speech on those outside their immediate circle of acquaintances and supporters. That impact is the perpetuation of a climate of fear, mockery and intolerance towards autistic citizens, a class that includes your grandson and my daughter.
I agree that legitimate concerns exist pertaining to the neurotoxicity of mercury, and I support continued investigation into the matter, in relation to its presence in vaccines, and in industrial emissions and the food supply. However, I believe that it is profoundly mistaken to insist that the increase in reported cases of autism is solely attributable to vaccine-related mercury toxicity. Mercury poisoning may resemble not only autism, but also multiple sclerosis, lupus, juvenile diabetes, asthma, rheumatoid arthritis, Crohn's disease, childhood cancers, allergies, autoimmunities, gastrointestinal disorders, and neurological disorders. Numerous studies confirm that the increase in reported autism diagnoses is largely an outcome of expanded definitions of autism, increased awareness of its characteristics by professionals and the public, and changing public reporting requirements following the enactment of IDEA. Although a certain portion of the increase may be attributable to mercury poisoning manifesting as autism, mercury poisoning can hardly be regarded as the sole cause of autism.
It is as incorrect and illogical to assert that autism never existed before its description in the clinical literature of modern psychology, as it is to assert that there is no such thing as snow, simply because there is no word for it in Tagalog. In fact, the phenomenon has been described through the centuries as "stupidity," "idiocy," "dementia," and "schizophrenia," in addition to colloquial terms like "madman," "weirdo," "oddball," "misfit," "eccentric," "village idiot," and so on. Uta Frith's excellent book, "Autism in History: The Case of Hugh Blair of Bourgue," is a fascinating dissection of testimony in a seventeenth century estate trial, in which Dr. Frith establishes that Mr. Blair demonstrated many of the behavioral and communicative characteristics of autism. Thoughtful consideration of the lives of many distinguished historical figures such as Glenn Gould, Henry Cavendish, Oliver Heaviside and Ludwig Wittgenstein, demonstrates that the characteristics of autism are as pervasive in their incidence throughout history, as they are pervasive in all areas of an autistic individual's life experience.
References to autism using terms such as "life worse than death," "an empty shell," "victims of kidnapping," "nightmare without end," "epidemic," "plague," "tragedy," and "demon" have become distressingly rampant. These terms may accurately express the disappointment and distress of some parents about their autistic children's condition, and their hopefully temporary lack of understanding of the potential of autistic individuals for healthy, constructive development throughout the lifespan. Hopefully, these feelings and lack of information can be transient states, if parents are successful in moving beyond their initial sense of grief, and learning ways to communicate effectively with their autistic children and foster positive, loving relationships. I believe that it is inappropriate to use sensationalistic terms in public discourse without consideration of the life experience, feelings and preferences of those who are themselves autistic. I strongly doubt that any autistic adults were consulted before you or anyone else involved with dissemination of the phrase "mad child disease" chose to propagate it in the public square.
I am convinced that the "trauma of the autism diagnosis" is largely an iatrogenic condition, prompted and perpetuated by clinical descriptions of autism that focus on abnormality and deficit rather than on cognitive variety, developmental and educational potential. I have experienced this trauma myself, an experience that fuels my commitment to changing the societal circumstances that brought it about. The trauma is deepened by dire predictions of institutionalization for those who do not undergo "treatments" offered by various professionals for a steep price — predictions grounded in the assumption that society must necessarily serve citizens with cognitive disabilities in the same sorry manner as it has in the past. The trauma is further exacerbated by use of words like "tragedy" and "disaster" to describe a condition that is likely to remain a permanent, pervasive element of a person's experience. These predictions are largely offered by members of the medical profession, and by those who have a vested interest in the promotion of "treatments" portrayed as universally applicable "magic bullets" virtually guaranteed to deliver a "recovered" child — a non-autistic child — one "indistinguishable from his peers."
I do not mean to discount the very real concerns of those responsible for the care of family members with severe metabolic and functional challenges, or to discount the benefits to individual autists of therapeutic regimens that have brough real improvement in quality of life. However, I do object to the use of sensationalistic, emotion-laden tactics that give birth to unnecessary widespread parental distress, in order to promote hypotheses of autism causation that are likely to be applicable to only a minority of cases.
If I misunderstood your position with respect to the term "mad child disease," this was due to the fact you cited the term twice in your article, with no quotation marks or other indication that you had any reservations about using it. Your article had every appearance of being a post-mortem report on Dr. Haley's presentation, with additional background on the topics under discussion. If I have erred in any way, it was in a similar direction as that of those who insist on exclusively equating autism with mercury toxicity have erred — that is, the equation of temporal association with causality, and of using language that reflects my passion about the matter at hand.
I disagree with your assertion that Doctors for Disaster Preparedness is not a political organization. Although its membership may largely consist of medical professionals and academics, even a casual perusal of the subjects covered at DDP's annual meetings and in their newsletters reveals that DDP has a decidedly political agenda. "The Litigation Epidemic and Its Fallout," "Illegal Immigrants and Border Closure," "Psychoactive Drugs and Covert Political/Intelligence Operations," were all topics covered at the June DDP meeting. Back issues of the DDP newsletter contain articles with such titles as "The FDA, EPA and the Exile of Yankee Ingenuity," "Media Wars: SSI Tactics," "Medicare Disaster Imminent," "Russians Call Brits Totalitarian," and "The Terrorism of Litigation." One of the co-sponsors of the DDP annual meeting was the Oregon Institute of Science and Medicine, well known for its propagation of the 1998 Oregon Petition opposing the Kyoto Treaty.
I have prepared your statement as a web page, and have posted it to my website at . I will notify all signers of the petition of your agreement to discontinue using the term "mad child disease," and of the online availability of your complete reply. I will also revise the wording of the petition to eliminate the phrases that you regard as being personally demeaning, and will notify signers of that change.
You have stated that for every letter you have received protesting your use of the term "mad child disease," you possess at least fifty from parents who praise you for your efforts to restore their children to health. I commend you for those efforts. I hope that you will consider each signature on this petition to constitute a "letter" equal in significance to the ones you have previously received; and that you will give added weight to the signatures of autistic citizens themselves, who have the most at stake when it comes to the perpetuation of a climate of fear, misunderstanding and prejudice against them. Now and in the future, long after you and I are both gone from this world, your grandson, my daughter, and millions of other autistic individuals will need to be able to function as independently as possible, with respect and dignity, in a world where popular attitudes towards autism are shaped by the language used to describe it.
October 10, 2004