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Adding Insult to Injustice to Injury Redux

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Injustice is censured because the censures are afraid of suffering, and not from any fear which they have of doing injustice. - Plato

The highest reach of injustice is to be deemed just when you are not. - Plato

To do injustice is the greatest of all evils. - Plato/Gorgias

by Sandy Gottstein

Just when you think things can't get any worse, they do.  In epidemic numbers, parents all over the world are struggling mightily, even heroically, with the tragedy of classic autism, and Newsweek comes along to "make nice".  Few would dispute the value of understanding sex brain differences, and appreciating the genius that can accompany high-functioning autism (i.e., "Asperger's syndrome").  But placing the emphasis on that relatively benign form, without delving deeply into the devastation that autism usually entails, greatly undermines recognition of the enormous challenges faced by most parents dealing with this tragic disorder, and their tremendous suffering and needs.  Even more important, it trivializes the profound suffering of these severely handicapped, but precious and dearly loved, children.

By presenting the information in this way, Newsweek also implies that autism is not a problem to be fixed or avoided.  Thus the seductively reassuring, but dangerously false conclusion that might be drawn is that there is little need to worry about, or pursue understanding of, its cause(s).

Because of all this, Newsweek has committed a great injustice by publishing "Girl's, Boys and Autism".  The following examples of letters and emails better explain why.

Dear Newsweek, 

Those of us who have to live in the world of autism are normally pleased to see anything that raises awareness of autism, even the typically poor articles that tend to appear in the popular press. But your recent article "Boys, Girls and Autism" is so misleading and damaging to the innocent victims of this disorder and their families that you should print a retraction and a sincere apology. Either your writers are seriously misinformed, or it was your intention to portray autism inaccurately as a something cute, geeky and lovable, something it is not. In the U.S. today there are millions of adults taking care of hundreds of thousands of severely disabled autistic children. Most of them are too busy coping with the daily life of autism to be able to educate the rest of the populace about the devastating nature of autism and the desperate need for meaningful research, while the public, the politicians, and the popular media remain ignorant of the reality. Whitewash stories such as your article only set back the nearly hopeless conditions that still trap so many. Worse, you engaged the help of numerous parents of autistic children, and they believed you planned to write a meaningful article that might raise awareness and shed some light - and then you published this. 

You confuse mild disorders on the autism spectrum, such as Asperger's syndrome, with actual autism, which is quite different and much more severe. If the intent was to write about Asperger's being widespread and perhaps something that people can live with, you should have made that clear, without referring to it repeatedly as "autism". However, what you actually wrote includes: "[Autism] is a mental style that people can learn to accommodate. Sometimes it's even a gift." While someone trying to sell a book might argue that this applies to Asperger's, it does not apply to autism. Parents love their autistic children; they do not love the disease. 

Most parents of autistic children aspire for their children to function as well as Rain Man - he could talk, he could understand, he could eat, he could sleep, he didn't scream constantly, he could go to the bathroom and didn't need diapers. Without a lot of help or luck, many of these aspirations are apparently in vain. Your report only lessens the likelihood that they will get the help they need, and it lessens the likelihood of much needed prevention and research. 

You give glowing references to a theory by a psychologist in Cambridge about a male type of intelligence (systemizing as opposed to empathizing). Are you claiming that autistic girls are excessively male? If so you are sorely mistaken, and you insult the helpless little victims of this terrible epidemic. 

The references in the article don't even mention Bernard Rimland, the Autism Research Institute, nor any of the organizations that are actually doing something about the causes, prevention and cures of autism. 

The annual cost of autism to the U.S. is currently estimated by the Autism Society of America at around $100 billion dollars, with the annual cost in 10 years projected to be between $200B and $400B. This is not something we can just learn to love. 

You mix up accurate statements such as "Classic autism is a devastating neurological disorder" and "Many sufferers are mentally retarded and require lifelong institutional care" with misleading and incorrect statements such as  "it has a strong genetic component",  and "[it] is marked by rapid brain growth during early childhood." The epidemic of autism is well confirmed by numerous mainstream studies, including publications by the U.S. federal government and the governments of various states and other countries. There are no genetic epidemics. The genetic component of autism was advocated originally in the 1960s by Dr. Bernard Rimland, the founder of both the Autism Society of America and the Autism Research Institute, yet then as now genetics was not plausible as the primary cause. You give no support to your bold statement about "rapid brain growth" and in any case this claim, which we know has tenuous evidence from one very small study, does not apply to autistic people in general. 

Autism - more properly, autistic disorder - is in fact an extremely debilitating disorder. It is marked precisely by the symptoms that make up its formal diagnostic criteria, all of which are psychological observations. Despite the general lack of funding for truly useful research on autism, the studies that have been done clearly associate autism with a number of serious medical problems - they are far too numerous to include in this letter. Among these are: 

Harvard University and Mass General Hospital's current work on medical aspects of autism has already found that more than half of the more than 500 autistic children they have studied had treatable gastrointestinal problems that ranged from moderate to severe including esophagitis, gastritis and enterocolitis along with the presence of lymphoid nodular hyperplasia. Harvard researcher Dr. Tim Buie stated in a recent report "These children are ill, in distress and pain, and not just mentally, neurologically dysfunctional," he said." It goes on to say "In a significant conclusion, Dr. Buie believes that many of the symptoms of autism such as self abusive behavior including self-mutilation, head-banging, unexplained outbursts, atypical sleep patterns, disrupted sleep or night awakenings, are actually symptoms of pain that a child is not able to communicate." 

Multiple studies have shown that a majority of autistic children have serious autoimmunity problems, and they have persistent measles virus in their GI tracts and spinal fluid, while normal controls do not. 

Multiple studies, including one performed by the CDC which they attempted to keep secret, have shown a strong association between autism and mercury (thimerosal) in vaccines. A recently published study showed that autistic children do not excrete mercury nearly as well as normal controls, apparently retaining mercury in their internal organs. This factor is one that may indeed be related to genetics and maleness, for reasons that have been studied and published but rarely mentioned in the popular press. 

Imagine if Newsweek had written that heart disease has a strong genetic component, it has nothing to do with bad diet and environmental poisoning, it is just a strong expression of maleness, that persons with it could function just fine under some circumstances, and it is just a lifestyle (deathstyle?) that you can learn to love. How would that sit with the millions of heart disease sufferers and their survivors? 

There are powerful vested interests who dearly want to see the autism epidemic be forgotten. Your article is so misleading and damaging that millions of outraged parents and caretakers can palpably feel the insidious hand of the PR spin machine once again attempting to suffocate the truth. 

Alexander (Sandy) MacInnis

More emails and letters - To submit an email/ letter of your own, please email sandym@touchngo.com

Sandy Gottstein

Date: 9-5-2003             

"Eternal vigilance is the price of liberty." - Wendell Phillips (1811-1884), paraphrasing John Philpot Curran (1808)