ADVOCACY
“All men are
created equal,”
except if they
have autism
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40
AUTUMN 2008 THE AUTISM FILE
F
ighting discrimination has always
been an important part of the work
of the Autism Research Institute
(ARI). ARIÕs founder and former director,
Dr. Bernard Rimland, grew up hearing
about how his uncle, who lived in Russia,
helped a stranger who was inexcusably
harassed on the sidewalk by a policeman.
His uncle was killed defending the rights
of the stranger. This incident had a
profound impact on Dr. Rimland, and the
rest of his life was focused on helping
those who were treated differently by
others.
When Dr. Rimland found out that his
son, Mark, had autism, he quickly learned
that physicians, psychologists and social
workers blamed him and his wife. He
was infuriated when he read the term
Òrefrigerator mother,Ó knowing that it did
not describe his wife. After combing the
research literature on autism, Dr. Rimland
concluded that there was not a shred
of evidence supporting this vile parentblaming theory; in fact, the behaviors
of these children were consistent with
a causal neurological / biomedical
problem.
Outraged, Dr. Rimland wanted to
right this wrong. He spent the next Þve
years writing his groundbreaking book,
Infantile Autism: The Syndrome and a
Neural Theory of Behavior, published
in 1964. He wanted parents and the
medical community to understand the
true nature of autism, and he wanted
professionals to begin treating children
with autism and their parents with
respect.
Until his death in 2006, Dr. Rimland
continued to Þght for the rights of
children and adults on the autism
spectrum. He worked hard to help pass
laws for equal education for children with
Reprinted with permission from The Autism File. Autumn 2008. [email protected]Þle.com.
disabilities. He was also a well-known
critic of several government health
agencies and the medical establishment
for, as he succinctly put it, Òfailing our
children.Ó
Today, ARI continues to receive
letters, faxes and emails from parents
whose children meet with discrimination,
especially from the medical community.
During his last 10 years of life, Dr.
Rimland spent a great deal of time
conducting, sponsoring and encouraging
research on medical conditions that are
common in autism. In 1995, he convened
the Þrst international Think Tank on
autism. He invited 30 top clinicians and
researchers to discuss ways to understand
and treat autism spectrum disorders
(ASDs). At the end of the session, the
consensus was that children with autism
do indeed have co-morbid medical
problems and that two areas needing
particular attention were the immune
system and gastrointestinal (GI) system.
This, I believe, was the Þrst time that
a group of experts acknowledged the
importance of GI problems in autism.
Dr. Rimland felt that this meeting was
a turning point in the Þeld. Many of the
participants continued to work together
and their camaraderie eventually yielded
the ÒDefeat Autism Now!Ó approach.
Since the Þrst Defeat Autism Now!
meeting, more than 40 scientiÞc papers
have been published documenting
GI problems in patients with autism.
According to some estimates, as many
as 70% of individuals with ASD have one
or more GI problems, including chronic
diarrhea, constipation, inßammation,
leaky gut, dysbiosis, acid reßux, and
yeast overgrowth. Many experienced
doctors who use the Defeat Autism Now!
approach have been successful to some
degree in treating these GI problems.
Unfortunately, more times than not a
pediatrician considers these GI problems
simply common symptoms in autism
and fails or even refuses to consider
further assessment and treatment. At
ARI we often hear horror stories from
parents who were able to set up an
appointment for an endoscopy with
a gastroenterologist only to have the
doctor cancel the appointment as soon
as he or she realized that the child had
autism.
If a child without autism
suffered from these types
of GI problems, he or
she would be referred to
a specialist and receive
immediate attention.
Regardless of whether or not GI
problems are more common in autism
than in the general population, if an
individual presents with these problems,
he or she needs to be treated.
In a related circumstance, many autistic
individuals do not feel normal levels of
pain. Some researchers think that this
might be due to endorphins, derived from
casein and gluten food substances, which
leak from the damaged GI tract into
the bloodstream, creating an anesthetic
effect. There are reports of children on
the spectrum who, for example, place a
hand on a burning stove or sustain an
internal injury (e.g. a ruptured appendix),
and yet show no signs of distress or
discomfort. An inability to feel pain
is a serious matter; but, similar to the
GI problems, this lack of pain is often
deemed a symptom of autism and no
further evaluation is performed.
If a child without autism
were unable to experience
pain, he or she would be
referred to a specialist
and receive immediate
attention.
On the topic of discrimination, another
important issue is sexual abuse. This
will likely become a bigger issue in the
near future, when those born during the
beginning of the epidemic reach their
teenage and young adult years. Young
individuals on the spectrum are perfect
victims for sexual abuse because they are
socially na•ve and frequently have poor
communication skills. Although there
is growing concern about sexual abuse
within the autism community, there has
been very little effort by government
agencies to protect these individuals.
I know of a recent case in which an
Reprinted with permission from The Autism File. Autumn 2008. [email protected]Þle.com.
autistic child told his mother that he
had been sexually abused. He was able
to name names as well as give graphic
details of the abuse. The family lives in a
large metropolitan area, with child sexual
abuse agencies scattered throughout
the city and suburbs. In an email to me,
the mother wrote, ÒI literally called every
center in the area and every forensic
psychologist I could Þnd and every one
refused to see my son as soon as they
heard he was autistic. I may not have
found every last one, but I certainly
tried.Ó
Unfortunately, this case is not unique.
If a child without autism
made this same accusation,
he or she would be referred
to a specialist and receive
immediate attention.
Following the lifeÕs work of Dr.
Rimland, ARI is taking action to help end
discrimination against children and adults
on the autism spectrum. For example,
ARI and the Autism Society of America
recently co-sponsored a Gastrointestinal
Consensus Conference. Researchers from
around the world reviewed the scientiÞc
literature on GI problems associated
with autism and are planning to publish
a summary report later this year. We
expect that their conclusions will have a
profound impact on how individuals with
ASD will be evaluated and treated for GI
problems. In addition, ARI has entered a
dialogue with the American Academy of
Pediatrics in order to help pediatricians
learn ways to treat children with autism,
such as assessing and treating GI
problems. And Þnally, ARI has started a
life-span initiative in which issues such as
sexual abuse will be addressed.
ARI recently established a website
titled www.AutismDiscrimination.
com. It is dedicated to discrimination
and autism. On the website, parents are
invited to submit their childrenÕs personal
encounters with discrimination.
As Thomas Jefferson (who is thought
to have had AspergerÕs Syndrome)
once said, ÒAll men are created equal.Ó
Obviously, this is a goal that we must do
our best to attain and defend.
THE AUTISM FILE AUTUMN 2008
41