The Cure Autism Conspiracy of Parents and the M.I.N.D. Institute

      [We were beside ourselves from anticipation and excitement over the
passing of legislation through the California Legislature providing $36
million to the M.I.N.D. Institute for autism research.  Now came the wait
for Governor Gray Davis' signature (see today's announcement).
      Over breakfast the next morning at a local Sacramento restaurant,
three autism parents and one scientist with his young son tagging along,
gathered to reflect on the landmark events.  At the table were Rick Rollens
and Chuck Gardner, two of the handful of advocate fathers responsible for
the idea of M.I.N.D., along with noted autism researcher Dr. Andrew
Wakefield and son, who were in town on their way to an upcoming conference
in Irvine, California.
      Rick Rollens spent 23 years as a legislative staffer and Secretary of
the Senate in California.
      Myself, the third father and editor, switched on the tape recorder and
captured these comments for the FEAT Daily Newsletter readers.  -Lenny
Schafer]


Rick Rollens:
     The action by the legislature today in approving the request for $36
Million is clearly the most significant legislative development in autism
research that has ever happened.  The National Institute of Health (NIH) for
the last 30 years has dedicated to autism research a very small portion of
their overall budget, which is currently $17 billion a year. Up until 1995,
a few years ago, they were spending $10 Million per year on autism.  They
now claim that has increased to about $40 million a year.  But the type of
research that is being funded by the NIH is the traditional genetic-oriented
research into autism.  The M.I.N.D. Institute, which has been created by
parents, are demanding that science take it to the next level and look at
causes from a different perspective.
      The significance about getting funding from the state is two-fold:
there's a one-time $30 Million appropriation that will allow us to start
putting into motion infrastructure needs and important research priorities.
In our ongoing, year-to-year budget, which will be increased, if Governor
Davis leaves the money in the budget, would rise to $10 million per year.
And that money, if not spent, rolls over to the next year. It presents us
with an opportunity to do some necessary long range planning.
      Our success at this comes from a lot of hard work from parents who
want to see things happen to help their children -- and there's nothing
stronger in this world than a parent's love for their child.  All of us who
were involved in this process have committed our time, really our lives, to
seeing that we are successful.  The M.I.N.D. Institute has only been in
existence for less than two years.  The legislation that created M.I.N.D.
was signed into law in September of 1998.  In that short period of time.our
goal was to raise $11 million by the year 2002.  If this money stays in the
budget, it will actually come to $57 million and the goals to raise $100
million in ten years will be exceeded by $25 million to $125 million.  And
keep in mind, this is only the State's contribution to this project.  We've
yet to do the same kind of work that we intend to do on the private sector.
We think there are a lot of parents and grandparents - people who have the
wherewithal to contribute to the cause, will come forward when they see that
the M.I.N.D. Institute has become the premiere autism research institute in
the world.

      Q: Will the $125 million cure autism?

      That's a good question.  We would be happy for it to take just
$200,000 to cure autism.we'll see.  One thing I can pledge for those of us
involved at the M.I.N.D. Institute, is that every dollar we get will be well
spent.

      [Dr. Andrew Wakefield FRCS is Reader in experimental gastroenterology
at The Royal Free Hospital, London and Honorary Consultant to the Royal Free
Hampstead NHS Trust. Dr. Wakefield is also Director of the Inflammatory
Bowel Disorder Study Group. At conferences, he presents "The Pathology of
Autistic Enterocolitis".]

      Q: Dr. Wakefield, how will this funding development affect autism
research?

Dr. Andrew Wakefield:
      Let me start with some background.  I met these guys, Chuck and Rick
three years ago in San Diego at a DAN! Conference and at that time we were
all staring catastrophe in the face: an autism epidemic without answers. And
what they've done now is something short of a miracle in turning this whole
thing around. It is an enormous credit.  Parents have driven the science
behind this disease.  Sadly, the contributions to the understanding of
autism from the medical profession and the allied professions have been
trivial compared to the contributions that have come from the parents.

      Q: In an unusual role-reversal, parents are educating the caregivers
and scientists about autism.

      That's exactly what you are seeing.  It's turn medicine on its head.
Maybe this is the way medicine should be.  The parents are the ones who make
the observations and tell you about the symptoms.  It's up to the medical
profession to take those findings at face value and investigate them - to
allow themselves to be educated by the parents.  It's a lesson in humility
that the medical profession does well to bear in mind.  And it shows in the
field of autism were we have gone from the dark ages to a new dawn in a
very, very short space of time.

      Q: Aren't you taking some risk listening to parents?   Aren't you now
the odd man out in the medical community?

      In some quarters, but I wouldn't change anything.  It has been a
fascinating experience for me.  As a clinical scientist, I am answerable to
the patients or the patient's parents.  And that's it, that's the bottom
line there is no compromise there.  I'm not a public health doctor and if
public health doctors have done their jobs properly, then we could all sleep
easier in our beds.  Unfortunately we have major problems that need to be
addressed and it's not addressed by burying our heads in the sand and
pretending the problem of questionable vaccines will go away.  It's not
about bravery or about being on any kind of crusade it's merely about doing
the job one was trained to do; that is, answer the questions of patients or
patient's parents.  There is nothing complicated about it. It starts to
become complicated when it gets enmeshed with politics and other things
having nothing to do with medicine.

      Q.: What are the consequences to you for sticking your neck out with
your research?

      It's made life interesting.  As the Chinese curse goes, "may you live
in interesting times."  It has been very difficult for my colleagues to come
to terms that there may be a genuine problem with inoculations, something
that is suppose to be one of the great medical achievements of the 20th
century; indeed something in this country which is mandated, and mandated in
the absence of adequate safety studies. And there will be a price to pay for
this.
      But personally, I have no complaints.  You go into it with your eyes
as open as they can be and clearly you will encounter difficulties along the
way.  I have no complaints at all.

Rick Rollens:
      It is typical of Dr. Wakefield's style to make gross understatements
of the contribution he's made to all of us parents: first by listening to a
mother who brought her son to him.  Dr. Wakefield is a gastroenterologist
who had no experience in dealing with autism.  He had the courage to listen
to a mother who was telling him about how her son was suffering and then he
took the bold step to investigate -- and then he found something.  He probed
further with other children and he found it again and again.  He was willing
to put his career and his family through sacrifices to say "I found
something here. . .we need to do further research."

      [Chuck Gardner is a parent who first imagined the M.I.N.D. Institute
and took the steps necessary to launch the project, in part by helping to
focus and initiate its mission statement into working projects. Chuck is a
general building contractor and brings with him considerable organizational
and problem solving skills.]

      Q: Chuck, where does the M.I.N.D. Institute start in the task of
finding a cure for autism?

Chuck Gardner:
      One of the original difficulties that we were having was trying to get
the doctors, parents and scientist to get their hands around the problem of
this very broad-spectrum disorder called autism.  The complexity of the
problem became clear to us when we initially discussed with California
Senate President Pro-Tem John Burton, our legislative sponsor, about what we
were going to do with the funds we were requesting. I remember Rick Rollens
saying, "We've got all these kids coming into the system.  It's a tragedy
that must be addressed."
Burton responded, "I know it's a tragedy but what are you going to do with
the money?  How are you going to fix the problem?"  And the doctors couldn't
specifically answer that.  We were stumped.  Burton said, "Come back when
you have 'the how'" and sent us off packing.
      Rick and I and a lot of other people have been talking about curing
autism for a long time.  But then you sit there with a blank piece of paper
and you set aside money, because we always focus on money being the problem,
so we pulled that out of the equation, for the time being.  So, if you had
all the money in the world, what would you do, where would you start in
finding the cure for autism?  When you think about it, it's a daunting task
with only a blank sheet of paper to start with.
      We started with the question "what could be wrong with these kids?"
And it's not that complex a problem when you start breaking it down.  There
are a limited number of things that could go wrong to cause autism. It could
be brain damage, it could be the gastro-intestinal system, it could be some
hormonal imbalance, it could be something genetic and it might be something
immune related.  Beyond that, there's not much else to consider.  So now you
've got five things to list on your sheet of paper.  And currently we only
know two medical ways to fix the five things:  drugs or some kind of gene
therapy.  Now it's not as big a problem anymore, breaking it into finer
pieces.
      But the scientists were still stopping us, saying that autism is too
complex a problem, that you have to know everything about cognition, the
process of learning, behavior, social interaction, the mind, before you can
even approach a cure, and we initially bought into this.  Eventually we
realized that we don't really need to know it all to get to the end point of
curing autism.  We don't need to know everything about cognition.  After
all, cognition issues are about the symptoms, not the causes.

      Q: What does NASA have to do with solving the M.I.N.D. puzzle?

      We figured that there has to be an historical model where they had
similar problems to not having all the answers at the start, but still
solving the problem at the end.  The model we found is called the "NASA
model."
     In 1957 the word "astronaut" didn't exist, no one had ever thought
about what a lunar module was supposed to look like.  No one knew what kind
of rocket it would take to get to the moon.  And IBM had no experience
putting a computer into a space ship, and they were just in their infancy of
making computers.  So NASA started with a lead project manager.  They then
divided this massive scientific, technological project into small component
parts, each with their own project manager.  So, for example, one manager's
job was to go get the astronauts.  Another guy's job was to go get the lunar
module, another to build the space suits, etc.  So you define the project
down into smaller, manageable parts with the pieces coming together
one-by-one, and you're on the moon!
      So we're taking that model, defining the five categories of potential
causes of autism and finding each a project manager.  We have a ten-year
time line goals for completion of this project.  The research is going to be
focused on practical results and not get sidetracked with
knowledge-for-knowledge's sake experiments.
     A lot of things from science happen by accident, and that's probably
how we'd find the cure for autism eventually - who knows when?  The way this
happens is that a scientist finds something interesting and then pursues it,
just for the sake of knowledge and its discovery - without necessarily a
practical application in mind.  That's fine not to have a time line and just
to seek knowledge, if that's your only goal.  And that's where we may lose
some scientists because our goal is not to just seek interesting knowledge,
but knowledge to the benefit that it finds a cure for these kids  -- and
soon.
     The more resources we can raise, the shorter we can make that time line
for completion.  Our grant funding cycles are yearly.  We give the
scientists a year to develop a hypothesis, a year to improve the hypothesis
towards a treatment.  We figure a two-year cycle is time enough to develop a
treatment or cure.  This structure helps keep our focus on these goals.

      Q: How does finding lost submarines fit into finding a cure for
autism?

      In their earlier days submarines were a key part of our national
security, especially during the cold war period.  So when a submarine would
sink, it became imperative that we find it before the Russians did.  We had
such a big lead over them in submarine warfare we knew they'd desperately
want our secrets.  At the time there were no communications between a
submarine and the base.  The only thing the pentagon would know is when, and
at which port it departed and when, and at which port, is was supposed to
arrive.
      What brought this case to light was this submarine that left the
Mediterranean one-day and was supposed to arrive in New York.  But it never
showed up.  The only thing they knew at that point was when and where the
sub left port. There were no sightings, no SOS, no communications to provide
clues.
      This submarine was vital and it was feared the Soviets might know
where it went down or may have even been the ones to sink it.  They brought
in experts on submarine technology, physicists and other scientists who had
knowledge in this area.  They decide to try a theory called "Optimal Search"
that says a hunch is more than just a hunch, that you know more than you
think you know.  There is more going on than just a guess.  You may be
relying on subconscious knowledge, or intuition that can get you to the
answer with structured brainstorming.  So they tried it and the first time
out of the box they came within 200 miles of where it went down.  So from
then on, they adopted it as their method for finding sunken submarines.
      What we've done is to take this Optimal Search approach and apply it
to finding the solution to autism.  When you look at brain damage, it's a
broad area.  You have to figure out where's your best starting point.  We
are doing our first pass with Optimal Search Theory in June.  Dr. David
Amaral [a neuroscientist at the University of California, Davis, a leading
expert on neurodevelopmental disorders, and M.I.N.D.'s research director] is
bringing together a number of nueroscientists on the first day, to look at
our brain information bank.  On the second day we are going conduct this
Optimal Search. These guys are going to play out their hunches about where
they think is the most likely place the brain damage for autism is.
     We've already increased our probability for success, I think by 1000%
just by walking through this discipline. At least it's not just a blind
search - it a very educated guess of where to start, rather than saying let'
s list and review all possibilities one-by-one.
     This is how we'll proceed on all of our research problems; we'll do an
optimal search first so that we identify the most likely target at the
start.  So for example, with the immunology project, our most likely target
is the vaccine.  That's our starting point.

Dr. Andrew Wakefield:
      What Chuck says is right: this approach is not pure science.  This is
clinical science.  Clinical science starts and ends in the clinic.  That's
where the clues come from and that's where you then take the products of
your research back to, in terms of benefit.  It is done with a reductionist
approach.  There is nothing complicated about the origins of autism - that
may sound like heresy - but it's the disease itself that is incredibly
complicated.
      If you adopt a reductionist approach to the problem, you start with
"what do we know?  What is being told to us here in the clinic, what are the
symptoms?  Where should we be looking?"  Then you will start to dissect out
the origins of the problem.  We've known for a long time that there are
immunological abnormalities in many of the children with autism, but the
subject is rarely found mentioned in the classic text books being produced
now about autism - nothing at all.  And yet, there are clearly definable
immunological abnormalities in many of these children. There is an extremely
important clue, the vaccine - the starting point.  And there are
gastro-intestinal symptoms.  All one needs to do is to take those seriously.
      I was intrigued at some of the comments at and around the April 6th
Congressional Inquiry on autism and vaccines made by one of the advocates
for the public health system, Dr. Paul Offit from Philadelphia who
personally holds a patent on a rotavirus vaccine, as well as having received
grant money from the pharmaceutical industry to help develop his vaccine.
When asked if he was prepared to even consider from a scientific standpoint
whether there was a possible link between the MMR vaccine and autism, he
said that he was not prepared to consider it because of the potential impact
it might have on public health.  That to me is an extraordinary response
coming from a scientist.  He has already preconditioned his response
according to the possible outcome.  He was fearful of learning the truth.
Therefore sadly, Dr. Offit has ruled himself out of the scientific argument
completely.  This is not what science is all about.   This is why the
M.I.N.D. Institute is so necessary.

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Editor: Lenny Schafer   |   Eastern Editor:   |    News Wire: Ron Sleith
schafer@sprynet.com   |    Catherine Johnson PhD   |   News: Kay Stammers