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 Mintz
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
[email protected]
Sandy
Mintz
"Eternal vigilance is
the price of liberty." - Wendell Phillips (1811-1884), paraphrasing
John Philpot Curran (1808)