The Genovese-Mester Family Blog

Saying Hello to a Child With Special Needs by Robert Naseef, Ph.D.

2006-02-28T11:32:00.000-05:00

Saying Hello to a Child With Special Needs by Robert Naseef, Ph.D.

Finding out that your child has autism (or any other disability) can
be an extremely dark day for parents. This is tough news to
swallow. You don't have to kid yourself or those who love you about
how hard this can be. It may seem like life as you have known it
stops in its tracks. Yet the love you have for your child makes
giving up unthinkable. It will take time to regain your balance.
This involves endurance, courage, and accepting whatever remains
unchangeable.

The diagnosis is the beginning of your journey. As your child gets
the appropriate therapies, you will see progress and you will feel
relief because now you know what to do to help. While it can be
painful to say good bye to the child of your dreams, you can say
hello now to the child who needs you just as much if not more. You
will find great joy and great love in each and every achievement
that you would have taken for granted had your child had a "typical"
developmental course.

There are times when I still wonder who my son might have been,
without the autism, and who might I have been as well. Sometimes it
seems like only yesterday when I held Tariq for the first time, and
yet it is over 25 years. Magically he made me a father. Visions of
playing baseball and building model airplanes together and having a
warm, close relationship danced in my mind. It still warms my heart
when I recall how his life flowed through those first 18 months.

Everything changed when the "autism bomb" hit and he stopped talking
and began an endless sequence of repetitive activities. The impact
sent his development and family life veering sharply from the course
we were on. That I would lose my perfect baby was beyond anything I
could fathom. It is so much easier to tell this story in
hindsight.

I thought I could change him and make him the boy I wanted him to
be, frantically following various treatment approaches. Despite
intensive treatment, he did not make dramatic progress. Instead he
has been a catalyst to transform me, and help me to become the man I
needed to be. He taught me the meaning of unconditional love--to
honor his sacred right to be loved for who he is, not what he has
achieved lately, how he looks or how much money he will earn.
Without words, he continues to teach me a priceless lesson and
continues to inform and inspire my work as a psychologist with
families and children. He made me a better father and a better man.

As a psychologist, I take great joy in seeing parents fall in love
with their child all over again in ways they could have never
imagined. First, I try to help people look at their grief. It
doesn't help to pretend to be positive when underneath you may be
lonely, afraid, or sad. I learned we don't have to lie to
ourselves. You can grieve. You can complain. You can mourn. This
helps you to go on, make the best of the situation, and enjoy your
child and your life. Our life force is resilient, but the longing
for the healthy child or a typical existence may endure. You have to
learn to live with that yearning. As you do that step by step, you
are saying hello to the rest of your life and to your child's unique
personaility and development.

Thank you for that gift, Tariq.

Low-Dose Naltrexone (LDN) Treatment for ASD

2006-02-11T13:40:00.000-05:00

Low-Dose Naltrexone (LDN) Treatment for ASD

by Jaquelyn McCandless, M.D.

Thanks to DAN! doctor Jaquelyn McCandless, author of “Children with Starving
Brains,” for providing this report on a very promising new treatment.

Naltrexone is an FDA-approved drug used as an opiate antagonist for treating
opiate drug and alcohol addiction since the 1970s, available in generic form as
well as in the brand name ReVia in 50mg tablets. At regular dosing to treat
addiction, usually 50mg to 150mg a day, it blocks the euphoric response to
opiate drugs such as heroin or morphine as well as alcohol.

Opioids are known to operate as cytokines, the principal communication signalers
of the immune system, creating immunomodulatory effects through opioid receptors
on immune cells. A popular immune classification method is referred to as the
Th1/Th2 balance: Th1 cells promote cell-mediated immunity, while Th2 cells
induce humoral immunity. Simplistically, the inability to respond adequately
with a Th1 response can result in chronic infection and cancer; an overactive
Th2 response can contribute to allergies and various syndromes and play a role
in autoimmune disease, which most autism spectrum children show on immune
testing. The November 13, 2003 issue of the New England Journal of Medicine
notes: “Preclinical evidence indicates overwhelmingly that opioids alter the
development, differentiation, and function of immune cells, and that both innate
and adaptive systems are affected.” An Italian study done in 1996 by Scifo and
Marchetti attempted to correlate immunological determinations and behavioral
performance in treatment with naltrexone in 10, 20, and 30mg doses in autistic
children, with significant reduction of autistic symptoms noted in 7 out of 12
children. The behavioral improvement was accompanied by alterations in the
distribution of the major lymphocyte subsets, with significant increase in
normalization of the CD4/CD8 (T1) ratio and an inverse ratio of changes in NK
cell activity to plasma beta-endorphin levels. A large body of research in the
last two decades has pointed repeatedly to our endogenous opioid secretions as
playing the central role in the beneficial orchestration of the immune system.

Bernard Bihari, MD, a New York physician studying the immune responses in AIDs
patients, discovered that a very low dose of naltrexone, approximately one-tenth
the usual dosage, boosts the immune system and helps fight diseases
characterized by inadequate immune function. The temporary inhibition of brain
endorphins when given a very tiny dose of naltrexone apparently results in a
reactive increase in the production of endorphins, tending to normalize the
immune system with this elevation, and accomplishes its results with virtually
no side effects or toxicity; naltrexone is considered very safe and has never
been reported as being addicting. When LDN is given between 9 p.m. and midnight,
the body attempts to overcome the opioid block and the endorphins rise, to stay
elevated throughout the next 18 hours. Studies in human cancer patients show
that LDN acts to increase natural killer cells and other healthy immune
defenses, and hundreds of multiple sclerosis patients have totally halted
progression of their disease for up to 8-10 years or more with regular use of
this medication. Restoration of the body’s normal production of endorphins in
those with cancer or autoimmune diseases is the major therapeutic action of LDN,
which needs to be given only once a day between 9pm and 1-2am.

The use of LDN for children with autism spectrum disorders was previously
studied in the 1990s, with researchers using from 5 to 50mg daily or every other
day. In these trials, researchers were looking for opioid antagonism. Panksepp,
Shattock and other researchers noted better results with low doses; studies on
higher doses were more equivocal in children, and non-compliance due to the
bitterness of the drug posed a problem for children who could not swallow
capsules.

For my private clinical studies, Dr. Tyrus Smith at Coastal Compounding created
a very effective transdermal cream. This allowed easy adjustment of dosing (some
of the smaller kids did better with only 1-1/2mg), the bitter taste was no
problem, and the cream could be put on the children’s bodies while they slept.
The cream is put into syringes, with ½ cc providing 3mg for children or 4.5mg
for adults; most adults prefer capsules; both are equally effective.

I completed a preliminary eight-week informal study on 15 of my autism patients
May-June 2006 applying 3mg of LDN transdermally between 9 and 12 p.m. Several
adults participated also, one with Crohn’s Disease and one with Chronic Fatigue
Syndrome using 4.5mg nightly. Parents and participating adults reported weekly
on the results of the treatment.

Eight of the 15 children in this study had positive responses, with five of
these eight having results considered quite phenomenal according to their
parents. The primary positive responses have been in the area of mood,
cognition, language, and socialization. Two small children responded better when
changed to 1-1/2mg dosing. No allergic reactions were noted, and the primary
negative side effect was insomnia and earlier awakening, usually fairly
short-lived. The two adults in the study had very positive responses, with the
Crohn’s participant reporting that she has been in remission since starting LDN
(almost 10 months at this writing).

All of the children in my study were on well-controlled dietary restriction. I
have received reports from the e-lists I monitor of about 5-10% of other
children (not my patients) having side effects such as irritability, agitation,
and restlessness, subsiding as soon as the drug is withdrawn. I queried these
parents about gluten/casein/soy in the children’s diets, as this response is
very likely indicative of withdrawal symptoms of opioid block even though brief.
I suspect that children on a strict GF/CF/SF diet are less apt to show this
response; this has yet to be tested.

The immediate positive mood/cognitive/relating effects seen in many children
starting this intervention is unlikely to be from immune enhancement showing up
so quickly. For other autoimmune studies using LDN, the evidence is that the
optimum immune response can take four to six months. In private correspondence
with earlier autism researchers Drs. Panksepp and Shattock, they postulated that
the LDN therapeutic effect with the rebound of endogenous opioids in the brain
“loosens up” the opioid social-reward systems so children who were not
connecting to the many known opioid based social rewards in the environment
begin to respond to those rewards. Both these researchers emphasized the
importance of positive social reactions being reinforced and enhanced
substantially by social support and encouragement, helping the new behavior
become part of positive behavior modification. A significant proportion of
children upon starting LDN show not only some increased hyperactivity and sleep
changes, but a bout of what seems like “viral activation” in the form of a cold,
fever blister, and other infections. These are usually short-lived, followed by
a burst of improved language, cognition, and socially seeking behavior. Now,
instead of immediately lowering the dose, I am asking parents to use the full
dosage, which seems to cut down this time of adjustment for most of the
children. Some do need to go down in dosage, but I urge parents to try to stay
the course if possible as I suspect the maximum immune benefits occur with full
dose, whereas the immediate social-reward and cheerfulness effects occur on
ultra-tiny doses.

As an effective, non-toxic, non-addicting, and inexpensive behavioral and
immunomodulating intervention, LDN is joining our biomedical arsenal to help
more and more children recover from autism as well as helping anyone with
autoimmune diseases and cancer. As an FDA approved medication, it must be
prescribed and must also be compounded for the tiny dosing required.

Note: I am currently conducting a clinical study aimed at not only ASD
children but their parents, as it is well known that autoimmunity has a strong
genetic component. 80 adults and 26 children are in this 16 week study. Dr.
Vojdani at Immunosciences Labs helped me work out an extensive immune panel for
determining what LDN will do to important immune and autoimmune markers along
with weekly tracking of behavior, mood, and physiological functions. Results of
this study will be reported by June 2006. For more information, see
www.lowdosenaltrexone.org or join Autism_LDN@yahoogroups.com.

Jack will start Hyperbaric Oxygen Treatments in April...

2006-02-04T11:32:00.000-05:00

Tuesday, January 17, 2006

By JESSICA ADLER
HERALD NEWS

To Andrew Piccirillo, the hyperbaric oxygen chamber seems like a spaceship. To his parents, the see-through, bed-sized capsule at Paterson's Barnert Hospital seems like a new bit of hope.

Hyperbaric oxygen therapy (HBOT), which exposes a patient to increased atmospheric pressure and 100 percent oxygen-filled air (as opposed to the 20 percent we breathe in the environment), is typically used for people with chronic wounds, infections or gas poisonings. Most recently, HBOT made headlines when it was used to treat a West Virginia coal miner who suffered carbon monoxide poisoning.

Andrew, who is 10 years old, is autistic. His parents are giving HBOT a try – even though no studies have been done on the effectiveness of HBOT in treating autism; even though insurance doesn't cover the 90-minute, $200 HBOT "dives" for the treatment of autism; even though virtually every doctor who doesn't make money administering the treatment to autistic children is skeptical about using it for such patients.

"This happens often in the autism world -- something comes out and parents flock to it," said Paul A. Potito, executive director for the Center for Outreach and Services for the Autism Community (COSAC). "Parents are willing to try lots of things because the disease is so devastating."

The Piccirillos aren't blind to that phenomenon. Like other families battling autism, a cognitive disorder that impairs social and learning abilities to varying degrees, the Piccirillos face the daily reality of an emotionally and, at times, physically exhausting illness. They will, they say, try almost anything to make it better. That includes treatments -- chelation therapy, which allows for the release of heavy metal in a patient's urine and hormone treatment with Secretin -- viewed with great skepticism by the mainstream medical community.

"When you're faced with a disability like autism, where there is no F.D.A.-approved treatment for it; you're faced with trying all different things you think might work," says Andy Piccirillo, Andrew's dad. "I don't think (HBOT) is the cure, but I think everything we've done collectively has brought Andrew from a non-verbal state to being a kid that goes to school and participates in the classroom and is learning and has friends."

The Piccirillos heard about HBOT from a friend, another parent of an autistic child. It had done wonders for her 7-year-old son, she told them. After almost 40 HBOT sessions, the mother said, he was making more eye contact. His concentration had improved. His temper was better.

On Web sites for parents of autistic children, Piccirillo found similar accounts. At www.healing-arts.org, a Web site advocating holistic medicine, he found a study purporting to show that HBOT had effectively treated childhood encephalitis, or swelling of the brain: "Viral encephalitis," it said, "presents a model for the inflammation that may be part of autism."

But, many doctors warn, it's not a good idea to rely on "may be's."

"If there is a treatment for autism, the approach would probably depend on the underlying problem, and we don't know what the cause of autism is," said Dr. Jonathan Mink, associate professor of neurology and pediatrics and chief of child neurology at the University of Rochester. "There is little or no evidence that hyperbaric oxygen is helpful for established brain injury."

His skepticism is widely echoed.

"As far as what exactly it does in brain, based on everything we know about autism, I do not believe (HBOT) could possibly help," said Dr. Leonid Topper, a pediatric neurologist with Pediatric Neurology Associates in Morristown.

"It's like the old tonics out west that were good for rheumatoid arthritis, the liver and the kidney," said Ronald Jacobson, an associate clinical professor of neurology and pediatrics at New York Medical College and a pediatric neurologist with Pediatric Neurological Associates in Englewood. "When a treatment is proposed to be good for many, many conditions, people should be wary."

While doctors are skeptical of HBOT and point out that it can cause seizures and oxygen toxicity in a limited number of patients, most are mindful of the plight parents of autistic children face. Although he doesn't recommend HBOT, Jacobsen says, "I'm very sympathetic to patients trying anything, because there are not a lot of treatments that work."

While researching HBOT, Andy Piccirillo read accounts from those offering the therapy that boasted of its potential.

"Think of it like a charge not firing," said Geoffrey Saft, a chiropractor who administers HBOT to about three autistic children per day in his Corte Madera, Calif., office. "What we believe happens in hyperbaric therapy -- in the brain and nervous system -- is that it causes idle synapses that are not working right, to get going again."

Saft charges $80 per session, relatively little compared to the $100 to $900 charged at the approximately 300 centers offering hyperbaric therapy around the country. The more treatments a patient has, the more lasting its effects, Saft maintains, adding that those effects can include increased attention span and improved socialization. Eighty percent of his autistic patients, he says, experience some improvement.

"His language skills jumped -- really jumped -- and he's picking up more phrases and vocabulary," said Nancy, the parent who originally referred the Piccirillos to HBOT, of her son's improvement following more than 40 intermittent sessions. Nancy, who lives in didn't want her last name printed, since her son is so high-functioning that some don't know of his diagnosis, she said.

But skeptical doctors such as Mink call experiences like Nancy's "the placebo effect."

"We all know that a good expectation leads to a temporary perception of improvement," Mink said.

Piccirillo is used to such skepticism. Even though he knows HBOT isn't scientifically proven to be effective, Nancy's account provides hope.

"We have to be realistic judges of each therapy on our own," he said. "There is nothing proven, but if one out of 10 kids benefit from it, that's a good thing."

When the Piccarillos found out that HBOT was available 10 minutes from their Wayne home, at Barnert Hospital, they signed Andrew up for 10 sessions over two weeks. Last week, the little boy burst into the hospital room full of energy, carrying a DVD of "Buzz Lightyear," one of his favorites, and repeatedly quoting memorized excerpts of the book "The Three Little Pigs."

The redundant speech patterns and hyperactivity are two behaviors the Piccirillos hope will be helped by the HBOT.

When it was finally time to get into the oxygen chamber, "the magic schoolbus," as Andrew calls it, the boy laid calmly as he watched his movie.

At this point, Andrew is about halfway through his morning sessions, which will cost a total of $2,000 -- $150 per "dive," plus a $50 doctor's fee. The Piccirillos remain hopeful that they'll see some of the improvement described by their friend Nancy. If they notice any positive changes in Andrew's behavior, they'll continue the treatments in spurts.

Andy Piccirillo, an accountant, and his wife, a teacher, believe their insurance company will reverse its decision not to cover the HBOT for their son. Even if they have to pay out of pocket, though, they say they'll find a way to fund any treatment they think works, including HBOT.

"As parents, you do anything you can to make your child's life better," Piccirillo said. "We won't give up on him."

Reach Jessica Adler at (973) 569-7169 or adler@northjersey.com

Michael Karas/Herald News

Andrew Piccirillo, 10, talks with his dad, Andy, during a "dive" in the hyperbaric oxygen chamber. Though many doctors question its effectiveness, for parents of autistic children, the chance it might help makes the treatment worth its high cost.

Vaccine Dilemma!!!

2006-01-31T15:18:00.000-05:00

This letter went to Rep. Rush Holt today - I think it tells the story...

I'm writing to make you aware of a situation that I'm dealing with concerning my 5 1/2 year old autistic son Jack. My wife and I have determined that my son should enter the public school system, after 3 1/2 years of homeschooling. He has been placed in an appropriate setting within our own district, at the Marlboro Early Learning Center. The district however has vaccine requirements. Jack is lacking his final MMR, and DPT boosters. At the recommendation of his physician, Jack was given a titer to prove immunity rather than a final booster vaccine. The logic behind the titer rather than the vaccine, is that Jack is being treated for an underlying auto-immune deficiency, which may indeed be directly connected to his autism. The physician's thought is that the introduction of any viral component into his system could be dangerous. I've described Jack in the past as "toxic" because he can't fight viruses or naturally eliminate metals such as lead or mercury. Jack's titers have come back and have shown full immunity, however the school system is not accepting the titers and is insisting on vaccines. All in all, the local school nurse, following protocol, is overruling Jack's personal physician.

Our only hope in the eyes of the school is to receive a religious exemption from vaccines. It seems that while I may be able to get a religious exemption, I can't get a medical exemption. Does that seem logical? Having fully vaccinated my other 2 children, I don't think I can suddenly adopt religion as a cause, instead I'd prefer for the medical community to support the health of my child.

Have we reached a stage where the vaccine dictums are overriding common medical sense? We're just a vaccine happy culture! Unless you say you don't believe in them based on religion of course...

Thank you for continuing to raise awareness of the epidemic of autism and thank you for your time.

Matt Mester

Dan Olmsted Article - My Child is Toxic

2006-01-30T15:19:00.000-05:00

Mr. Olmsted of UPI has spent the past year investigating the world of autism. Most notably he has raised awareness that the un-vaccinated Amish community is Autism free!. In this article, you might recognize a name :-)

I'll post more of this series and try to get the whole thing on the website.

United Press International�-�The Washington Times, America's Newspaper

The Age of Autism: 'My child is toxic'
By Dan Olmsted
UPI Senior Health Editor
Oct. 12, 2005 at 1:42PM
This column receives a welcome avalanche of correspondence, but our recent discussion of autism as a "whole-body illness" has generated more e-mail and faster than any other topic we've considered.
The mail comes mostly in three varieties -- parents telling their own tales of battling multiple illnesses and disorders in their autistic children; describing what they believe to be significant improvement through biomedical approaches; and venting anger at pediatricians for failing to see the disorder the way they do.
Matt Mester of Morganville, N.J., neatly summed up those aspects: "My child is toxic and needs to be detoxified." Here is his letter.
--
As a father of a 5 1/2-year-old boy diagnosed with autism at age 2, I have followed your series very closely.
My son also exhibits a series of biomedical problems that are completely out of the ordinary compared to my other 2 children (both neuro-typical), not to mention my wife and myself. Jack is virtually non-verbal and would be classified as severe, although thankfully Jack is not self-destructive and he is a happy boy.
He cannot tolerate dairy or soy, has had chronic constipation since infancy, and has terrible seasonal allergies. Like too many other children, Jack has regressive autism, which became apparent at approximately 18 months of age when he lost his language as well as his interest in the world.
Thankfully, the medical science field has progressed since he was first diagnosed 3 years ago, and we are seeing our first bit of significant improvement in Jack since we started Methyl B-12 shots and glutathione treatments this past summer.
In addition, a very recent blood test has revealed an underlying metabolic problem that will apparently need to be addressed -- we are still awaiting detailed results of a series of tests to lead us in the right medical direction.
I'd like to specifically comment on a statement published in your most recent article, quoting a parent: "Autism is a disease that affects the immune, GI and central nervous system." I honestly disagree with this opinion and offer the opposite conclusion.
In my humble opinion, there is no such thing as autism. Autism is a series of symptoms caused by one of a number of underlying medical issues -- most highly related to metabolic or detoxification problems. These problems are more than likely genetic, yet triggered by an environmental cause.
I believe that each child needs to be individually diagnosed and tested, as autism is a very personal disease, therefore studying and revealing as many possible treatment paths is the right thing to do. There is no cure-all, rather there are a number of paths that must be followed until you find the right one. And unfortunately, all of the paths have yet to be identified.
While I'm not certain that thimerosal (a mercury-based vaccine preservative) or mercury caused my son's symptoms to appear, I'm becoming more and more certain that my child is, for lack of a better word, toxic, and needs to be detoxified. His improvement with B-12 and glutathione is proving it to me once and for all.
--
Here is another representative letter, from Mr. and Mrs. Lawrence Haite of Kingston, Mass.
--
We are certain there are medical issues at the forefront of our ten-year-old son's autism. Sadly, they were missed by mainstream doctors for most of his early years. When we received his diagnosis there were no blood tests, screenings or medical work-ups. Most simply advised therapeutic services which in turn had to be obtained through adversarial means with our school district.
As we watched our son physically decline and had our concerns dismissed time and time again, my husband and I often thought of just driving to the emergency room of a major hospital in Boston and refusing to leave until we had answers.
Instead in 2001, I wrote the exact same letter to my son's physician, his neurologist and a doctor whom I had never met, but heard was having success treating children on the spectrum. The letter outlined all our concerns regarding ear infections, frequent antibiotic use, a multiple-vaccination schedule, suspected food intolerances, eczema-type skin rashes, pale skin coloring, the inability to tan or burn, imbalance of bowel ecology, poor protein digestion, chronic diarrhea followed by episodes of constipation, and malabsorption issues.
Further, our son presented with no protective antibody to Hepatitis B and elevated titers to measles. He also had nutritional and metabolic deficiencies as well as elevated HHV-6 and heavy metal toxicity. We did not receive any response from the aforementioned pediatrician and neurologist.
Thankfully, the physician we never met, Dr. Jacquelyn McCandless, responded to our request. She reviewed his entire medical history from birth and validated most if not all of our concerns. She recommended further testing and proposed treatment protocols that was the first real medical attention our son ever received. Improvements followed and we continue to address these issues today.
We parents have every reason to be angry with the AAP (American Academy of Pediatrics), but frankly we don't have time for that, because of the intense commitment to help our son. It is a double tragedy ... not only in what we believe to be the root cause of our son's autism (thimerosal/vaccine additive connection) but the way we were treated along the way.
Initially, we completely stepped up to our parental roles and did not wallow in "How did this happen?" but rather "How do we help?" The AAP did not. Ironically, it was only until we did the work to understand "how this happened" that we could truly help our son.
We struggle daily to work with and celebrate gains made ... but perhaps our son's treatment and outcome potential would be far less challenging had our concerns not been dismissed early on.
--
Last, here is a letter that suggests why a sense of urgency and openness is so desperately needed in dealing with a disorder that the CDC says afflicts 1 in 166 American kids. We withheld the name.
--
My son is 7 years old and I'm concerned about his future as an autistic adult. A little at a time I'm beginning to realize that his autistic behaviors are not changing that much, and that as he grows, he's becoming a larger body with the same behaviors.
I saw (ABC TV's) "Nightline" the other night and, for the first time, saw an autistic adult. There is no information out there on the subjects of teen years and adult years, and what to expect for elderly years for autistic children. I cannot bear the thought of my son in a mental institution just to have a place to live when he grows old.
For now, we've started a trust fund for him so that maybe when he becomes old enough, he'll have money to have someone take care of him when we're gone. Is this the right thing to do? What else do I need to do?
--
Readers who have a constructive response to this father are invited to offer it via this column. E-mail: dolmsted@upi.com

Jack Goes to School!!!

2006-01-28T16:13:00.000-05:00

On January 18th, Jack started Kindergarten at the Marlboro Early Learning Center in Marlboro, NJ. He was placed in the self-contained classroom for Autistic children, where he is one of 7 students. Each student in his class has a 1 - 1 aide. Jack is in the midst of transitioning his programming to the classroom, and his home based therapist Melissa is going to school with Jack for 3 hours each day to help Jack's new teacher and aides get up to speed on Jack's programs and Jack's style.

So far, Jack seems to really love school. He appears happy and motivated and we are very hopeful that this will be a great way for Jack to learn!

In Jack's 5 1/4 hour day at school he gets discrete trial therapy plus speech and occupational therapy, along with all of the daily group activities with his classmates. As we expected, Music is Jack's favorite activity so far!

Mom fights autism and suspected link

2005-08-10T12:51:00.000-05:00

Well, we've started this treatment with Jack... let's all hope.

Mom fights autism and suspected link
BY CHRIS LAFORTUNE
STAFF WRITER

It's hard to guess now that Charlie Blakey is autistic.

At home in Oak Park with his mother, Charlie willingly posed for photos and offered up a sticker collage featuring Superman.

There was a time, his mother Christina Blakey said, that her son would not talk to other people. His speech development was delayed, moreso than it is now.

"Nobody could understand him except us," she said.

Charlie would throw up any food he ate, she said, and his muscle development was slow.

"He did not walk until he was 2," his mother said.

He would often have problems making transitions. His mother said he would scream and kick while she dressed him to go to school in the mornings. She would have to get to the building early because it was so bad.

"Five minutes after I left, he was fine," she said. "It was the transition of it that he had a problem with."

Charlie would run for hours at a time, flapping his arms and tensing his body. The Blakeys tried to redirect his energy, but couldn't.

Blakey has tried just about every therapy available, she said. Only the most recent, a combination of a change in diet, B12 vitamin shots and a controversial therapy for autism - chelation - has brought about a change in his behavior.

"He's made strides we never thought possible six months ago, even," Blakey said.

Blakey believes her son developed autism as the result of exposure to thimerosal, a mercury-containing preservative that was used in vaccines. According to the Centers for Disease Control, there have been no harmful affects reported from thimerosal at doses used in vaccines, except for redness and swelling at injection areas.

Because of her son, Blakey has become involved on the national level, advocating on autism and against thimerosal in vaccinations. She attended a rally in Washington, D.C., July 20 over a vacation with her husband, meeting with staff from Sen. Dick Durbin and Barack Obama.

Charlie is higher functioning, Blakey said, so she has the ability to lobby Congress. Not all parents with autistic children are so fortunate.

"As long as Charlie is sick, I have a sense of urgency to get him well," she said.

In July 1999, the Public Health Service agencies, the American Academy of Pediatrics and vaccine manufacturers agreed thimerosal should be reduced or eliminated as a precaution in vaccines.

Today, the CDC says, with the exception of some flu vaccines, no vaccines used in the United States to protect preschool children against infectious diseases contain thimerosal as a preservative.

Blakey has tried to get her son's medical records from when he was as baby, but has only a partial list of precisely which vaccines he recieved. But she believes her son, born in 1999, received a dose of mercury 80 times what is deemed safe.

Blakey said she was initially skeptical of a link between mercury and her son's condition. hypothesis at first. Charlie was autistic in infancy, though he was not diagnosed until age 3. He never regressed into autism, she said, a sign others have attributed to thimerosal.

"We were taking him to different therapies three times a week," Blakey said. "Things got slowly worse. I saw that the gap was growing wider between him and his peers."

But as she did research on mercury poisoning, she discovered some of its symptoms were similar to her son's.

Blakey first changed her son's diet to cut out dairy and wheat, starting in May 2004. In December 2004, Blakey started giving him B12 vitamin shots and started chelation, which draws metals and minerals from the body. Two weeks later, she said, her son stopped throwing tantrums during transitions.

"We're talking remarkable gains that our neighbors have seen, his teachers have seen and skeptical family members have seen," Blakey said.

Chelation is a controversial therapy for children with autism. One reason is that there has been no proof that thimerosal has any connection to autism, said Dr. Chris Johnson, co-chairwoman of the American Academy of Pediatrics' autism expert panel.

Chelation also has side effects, Johnson said. The therapy typically is used for people who have lead poisoning, she said.

"There are some studies that have shown some fairly significant side effects, such as actually increasing neurological symptoms and reducing IQ when chelation is used in lead," Johnson said. "That is one of the risks you have to take when the child is toxic."

Johnson said no certified lab has been able to prove toxic levels of mercury in children with autism. That's not to say they don't have any at all.

"I bet if I'm tested or you're tested, we are all going to have some degree of mercury," she said. "It's in the air. It's with us."

The doctors who promote this therapy would calculate mercury levels as if children were given vaccinations with thimerosal all at once, Johnson said, but those vaccinations are typically spread out.

"I know that people are using it, but there are not studies at all, no scientific studies, that have studied whether or not this helps," Johnson said.

Doctors want to help people, Blakey said, which is why they go into medicine. They have an interest in seeing people stay healthy.

"It's beyond their own comprehension to be able to see that something they could have been contributing to is partially responsible for such a medical catastrophe," Blakey said.

Everyone Blakey said she has talked to has had positive results with chelation therapy, and Blakey has seen them, herself.

Just that morning, Blakey's son had been on a play date with a neighbor. In the past, he would never initiate play with anyone. He has also learned his letters and their sounds and is now starting to read some three letter words, though his language development is still delayed.

There was a time when Blakey's son didn't know a letter past A.

"For him to be able to read is amazing," Blakey said.

Blakey has her son's blood tested every few months to make sure Charlie's liver isn't being damaged. She also has a metabolic profile done.

To replace the metals and minerals that her son's body needs, Blakey has Charlie take a multi-mineral supplement, as well as calcium, magnesium and selenium.

Chris LaFortune can be reached at clafortune@pioneerlocal.com.

Cal State University Stanislaus Professors Publish Revealing Report on Methods for Treating Autism

2005-08-09T13:54:00.000-05:00

TURLOCK, Calif., Aug. 5 (AScribe Newswire) -- A California research team that includes a pair of California State University, Stanislaus psychology professors has taken a significant step in what most experts predict will be a long journey in developing effective treatment for autism. They were part of a team of psychologists who conducted a study that dispels some popular notions about how to treat autism.

Autism is a disorder of brain development characterized by deficits in language, learning and social interaction. It typically appears during the first three years of life and affects males about four times more often than females across all income strata and ethnic groups. Genetics seems to be a contributing factor, but the specific causes of autism have not yet been identified.

The National Institutes of Health note that prevalence studies have been done in several states and also in the United Kingdom, Europe, and Asia. Prevalence estimates range from 2 to 6 per 1,000 children. Most individuals with autism who do not receive effective treatment are unlikely to live independently as adults.

The California study found that intensive Applied Behavior Analysis (ABA) was a substantially more effective treatment for a group of preschool children with autism than the mixture of methods that is provided in many education and treatment programs. ABA emphasizes breaking skills down into small parts and building them systematically through repetition and positive reinforcement. At the same time, behaviors that are harmful or that interfere with learning are analyzed carefully and are not reinforced. The long-term goal is to help each child be as successful and independent as possible at school, at home and in the community.

The pioneering study was completed by CSU Stanislaus psychology faculty members Dr. Jane Howard and Dr. Harold Stanislaw and their colleagues Coleen Sparkman, Director of The Kendall School in Modesto; Dr. Howard Cohen, Clinical Director of Valley Mountain Regional Center in Stockton; and Dr. Gina Green of San Diego, a nationally known researcher and consultant in the field of autism.

"This study corroborates earlier studies showing the power of early intensive behavior analytic intervention," said Howard, the study's principal investigator. "It is important because it is one of only a few studies in which the ABA intervention was delivered through a community- based, rather than a university-affiliated program. These results signal the potential for delivering effective intervention without the resources of a university-based clinic."

Howard noted that this aspect is important because there are too few university-affiliated programs capable of providing ABA intervention for the growing number of children diagnosed with autism spectrum disorders.

"The study is also noteworthy because it is only the second one to compare the common practice of combining multiple treatment approaches ("eclectic" treatment) with a cohesive approach based on the science of applied behavior analysis," Howard said.

The report indicates that most autism experts agree that the earlier the intervention is delivered, the better the outcomes. It also questions the suitability of treating children with autism using a variety of intervention methods.

Although it may seem reasonable to many parents and professionals to use a mixture of treatment methods, the researchers note that this practice has not been carefully evaluated.

Co-researcher Green noted that scientific studies of "eclectic" treatment are necessary because funding treatments that have not been scientifically validated waste scarce resources and costs these children the opportunity to realize their full potential.

"Although ABA methods have proven effective for building skills in people with autism of all ages, it is not clear that effective intervention provided later in life can have the same impact as it does in the preschool years," Green said.

According to information provided by the California Department of Developmental Disabilities, the cost of providing basic services to adolescents and adults with autism throughout the lifespan is substantially more per person than the cost of comparable services for individuals with other developmental disabilities.

The authors noted in their article that "eclectic" or mixed-method treatment approach is often recommended for children with autism by consultants, educators and clinicians. It is widely used in both public and private schools. Eclectic treatment for children with autism often include the Picture Exchange Communication System (PECS), sensory integration therapy, speech and language therapy, discrete trial training, play therapy, and techniques drawn from the Teaching and Education of Autism and related Communication handicapped Children (TEACCH) program developed in North Carolina.

Green noted that some of these techniques, such as sensory integration therapy, have not been shown through sound research to produce measurable improvements in useful skills or reductions in problem behavior.

"Children with autism may appear to enjoy participating in some of these therapies, but to date, there is no strong evidence that they benefit in any meaningful, lasting way from participating in them," Green said.

The CSU Stanislaus study put eclectic and ABA-based interventions to the test over a 14-month period with three groups of pre-school children with autism who were similar when they entered the study. A total of 61 children who were under the age of 4 when they were diagnosed and began treatment for their autism participated in the study, which was conducted in Stanislaus, San Joaquin, Sacramento, Placer and Nevada counties.

After 14 months of intervention, most children participating in intensive ABA for 25 to 40 hours a week had made substantial improvements in most skill areas, according to numerous standardized evaluations conducted by professionals who were not affiliated with any of the treatment programs. Many of those children actually had accelerated rates of development in language, cognitive and self-help skills.

One group of preschool children with autism received intensive "eclectic" intervention in specialized classrooms for 30 hours per week. That intervention featured combinations of methods designed for children with autism customized to each child and delivered in a format in which one trained adult worked with 1 to 2 children. Another group participated in early intervention programs for children with various developmental delays, also utilizing a combination of methods for 15-20 hours per week. Both of those groups also received 14 months of intervention.

Despite its widespread availability and popularity, "eclectic" intervention proved comparatively ineffective. The two groups whose treatment consisted of a combination of methods made negligible gains in some skills, and lost ground in others. Their rates of development remained largely unchanged.

Although the intellectual functioning of the children in the 3 groups was similarly delayed when the study began, 16 of 29 children in the intensive ABA group, tested within the normal range at the end of the study. In contrast, only 5 of 32 children in the two "eclectic" treatment groups combined had normal intellectual functioning after 14 months of intervention.

Similarly, children who received intensive ABA treatment had gains on standardized language tests that were more than double those of the children who received "eclectic" intervention. In fact, at the end of the 14-month intervention period, the ABA group had an average rate of language development that was greater than that of typically developing preschoolers.

According to the researchers, the accelerated rates of development mean that these children are positioned to catch up to their typically developing peers if they continue to receive intensive ABA intervention for another 1-2 years. The prognosis, for the children who received "eclectic" treatment was, on the whole, substantially less promising.

"This study suggests that the 'shot gun' approach to autism intervention, where children receive a little bit of everything -- including interventions that have yet to demonstrate their effectiveness -- needs to be examined critically," Howard said.

Similar findings were reported in 2002 by Norwegian researcher Svein Eikeseth and his colleagues. They compared intensive ABA with intensive "eclectic" treatment in a study involving children of elementary age with autism. Eikeseth and colleagues also found that intensive behavior analytic intervention was superior to one that utilized mixed methods, even though both groups of children received one-to-one instruction for 30 hours each week for a year.

"The popular notion that virtually any intervention can produce meaningful benefits for children with autism if it is provided intensively has not been confirmed by two controlled studies that addressed that hypothesis," the CSU Stanislaus researchers and colleagues noted in their report.

The study conducted by Howard and her colleagues, titled "A comparison of intensive behavior analytic and eclectic treatments for young children with autism," is published in the July/August issue of the Journal of Research and Developmental Disabilities. The article can be purchased online at: www.sciencedirect.com.

The study was partially supported by grants from California State University, Stanislaus and Valley Mountain Regional Center.

- - - -

CONTACT: Jane Howard, 209-572-2589

Gina Green, 619-518-4990

Don Hansen, CSU Stanislaus Public Affairs, 209-667-3997, dhansen@csustan.edu

ABOUT THE RESEARCH TEAM:

"A comparison of intensive behavior analytic and eclectic treatments for young children with autism"

August 2005

Jane S. Howard, Ph.D. is a Professor of Psychology at California State University, Stanislaus. She trains undergraduate and graduate students from psychology and special education in the applications of empirically- validated interventions to special needs populations. Dr. Howard's focus over the past several decades has been child clinical problems in social, developmental, behavioral, and academic domains. She founded and co- directed the Center for Direct Instruction, a university clinic that provides intensive academic remediation to school age children. She is also a licensed psychologist and a Board Certified Behavior Analyst. Her primary area of research involves identification of variables related to effective treatment, focused especially upon young children diagnosed with autism spectrum disorders.

Dr. Howard is also a co-founder and co-director of Therapeutic Pathways and The Kendall School in Northern California. Both agencies provide intensive behavior analytic intervention to young children with autism spectrum disorders through either home or center-based delivery models. In addition, to being a co-author of the textbook, Human Behavior: Research and Practice, Dr. Howard has published in such peer-reviewed publications as The Journal of Applied Behavior Analysis, The Behavior Analyst, Research in Developmental Disabilities, and The Analysis of Verbal Behavior.

Coleen R. Sparkman, M.A. received her undergraduate and graduate training in Communicative Disorders from California State University, Fresno. Ms. Sparkman is a licensed speech and language pathologist and holds the Clinical Certificate of Competence (CCC) from the American Association of Speech, Language, and Hearing. She is the co-founder and co-director of Therapeutic Pathways and The Kendall School. Both Therapeutic Pathways and The Kendall School are located in northern California and provide intensive behavior analytic intervention to young children with autism spectrum disorders. Ms. Sparkman's work has been presented at numerous professional meetings including the Governor's Conference, the California Association for Behavior Analysis, and Association for Behavior Analysis International. Her work with children with pervasive developmental disorders is recognized throughout the western United States; over the past 20 years she has provided direct services and consultation to more than 500 children diagnosed with autism spectrum disorders.

Howard G. Cohen, Ph.D. is the Director of Clinical Services at Valley Mountain Regional Center. Dr. Cohen received his B.A. in Psychology from UCLA and a Ph.D. in Psychology from Kansas State University. He also completed a post doctoral internship at Ohio State University. Dr. Cohen is a licensed psychologist with a long time interest in research based practices and service delivery models for individuals with special needs. He was a key contributor of the Northern California Autism Collaborative and helped develop the AUTISTIC SPECTRUM DISORDERS: Best Practice Guidelines for Screening, Diagnosis and Assessment for California's Department of Developmental Disabilities. He was also a contributor to the (2003) book by Ivar Lovaas: Teaching Individuals With Developmental Delays: Basic Intervention Techniques. In that chapter, Dr. Cohen describes the unique collaborative he helped establish among families, schools, private agencies, and regional centers to utilize scientifically based practices to identify and address the needs of individuals with autistic spectrum disorders.

Gina Green, Ph.D. received a Ph.D. in Psychology (Analysis of Behavior) from Utah State University in 1986 following undergraduate and master's degree studies at Michigan State University. She has been a faculty member in Behavior Analysis and Therapy at Southern Illinois University; Director of Research at the New England Center for Children in Southborough, Massachusetts; Associate Scientist at the E.K. Shriver Center for Mental Retardation in Waltham, Massachusetts; and Research Associate Professor of Psychiatry and Pediatrics, University of Massachusetts Medical School. Dr. Green is currently in private practice in San Diego as a consultant and is on the faculty at San Diego State University and the University of North Texas. She has authored numerous publications on the treatment of individuals with developmental disabilities and brain injuries, as well as the experimental analysis of behavior. Dr. Green co-edited the books Behavioral Intervention for Young Children with Autism and Making a Difference: Behavioral Intervention for Autism. She serves or has served on the editorial boards of several professional journals in developmental disabilities and behavior analysis. Dr. Green also serves on the Board of Trustees and the Autism Advisory Group of the Cambridge Center for Behavioral Studies, the Board of Directors of the Behavior Analyst Certification Board, the Board of Directors of the California Association for Behavior Analysis, and the advisory boards of several autism programs and organizations. She is a Board Certified Behavior Analyst, former president of the Association for Behavior Analysis, and a Fellow of the American Psychological Association and the Council for Scientific Medicine and Mental Health. Psychology Today named her "Mental Health Professional of the Year" in 2000. Dr. Green lectures and consults widely on autism and related disorders, behavioral research, and effective interventions for people with disabilities.

Harold Stanislaw, Ph.D. is a Professor of Psychology and the Psychology Undergraduate Program Coordinator at California State University, Stanislaus. He earned a B.A. in Psychobiology from Yale University, an M.A. in Comparative Psychology from the University of California, Riverside, and an M.A. and Ph.D. in Cognitive Psychology from UCLA. His primary areas of expertise are research methodology and statistical analysis, as well as applied cognitive psychology. Prior to joining the CSU Stanislaus faculty, Dr. Stanislaw was at the University of New South Wales in Sydney, Australia, where he helped establish a graduate program in applied psychology.

Dr. Stanislaw is co-holder of a U.S. patent and has more than 30 publications in peer-reviewed journals. He has consulted on projects for the U.S. Coast Guard, the New South Wales (Australia) Roads and Traffic Authority, the Center for Oral Health for People with Special Needs, the California Department of Developmental Services, and the California Department of Health Service among others. Dr. Stanislaw has performed statistical analyses for applications in such diverse fields as aerospace engineering, psychophysiology, obstetrics and gynecology, traffic safety, visual psychophysics, literacy, and most recently autism intervention.

ON THE WEB:

www.sciencedirect.com.

The report can be found on line on the CSU Stanislaus web site at:

http://www.csustandur.com/newsline/index.php3?pid=646&action=detail&table=press

Media Contact: Jane Howard, 209-572-2589 Gina Green, 619-518-4990 Don Hansen, 209-667-3997, dhansen@csustan.edu NOTE TO EDITORS: Photos available. Contact Don Hansen, CSUS Public Affairs.

Study documents regressive autism in young children

2005-08-09T12:47:00.000-05:00

Study documents regressive autism in young children

By Julie Davidow
Seattle Post-Intelligencer
August 7, 2005

SEATTLE -- Just before his first birthday, Marilyn Filley took her son,
Damien, to buy some shoes. The gregarious toddler waved and smiled at
everyone he saw.

"I was kind of embarrassed," Filley said. "I said, 'He thinks he's a
celebrity.' "

A few months later, he stopped waving altogether.

Damien's other burgeoning efforts to communicate receded as well. He
started avoiding eye contact. "Ma ma ma ma ma" was replaced by a string
of incomprehensible noises. During a later trip to the mall, he appeared
not to notice other shoppers and concentrated instead on twirling his
wrists around.

The boy with blond curls who once danced to his dad's funky guitar
riffs was drifting away.

"It didn't look like he was exploring his world anymore," Filley said.

An estimated 20 percent of autistic children follow the same regressive
pattern as Damien, losing skills they'd acquired as seemingly normal
babies. By contrast, children with early onset autism (the majority of
cases) typically haven't made progress in key areas of development by age
1.

Experts have recognized autistic regression for at least a decade, but
they've previously relied on parents' recollections of a child's
backslide.

Now, a new study from the University of Washington documents regression
using videotapes of children's behavior during their first and second
birthday parties.

"We were pretty sure there was a phenomenon of regression, but this
(study) documents it in a much more objective way," said Sally Ozonoff, an
autism researcher at the MIND Institute at the University of
California, Davis.

Researchers reviewed homemade videotapes and talked to the parents of
56 children, including 15 with regression, 21 with early onset and 20
children without autism.

On their first birthdays, the children later diagnosed with autism had
reached the same developmental milestones as those never diagnosed.
They babbled in long strings of sounds, used single words, pointed out
objects and people and responded to their names.

By their second birthdays, the same children looked very different when
compared to their peers without autism.

"We found that what parents have been telling us all along was true,"
said Geraldine Dawson, a psychologist and director of the University of
Washington Autism Center. Dawson is the lead author of the study, which
appears in this month's issue of the Archives of General Psychiatry.

The study also found that children with regression had difficulty
sleeping, eating and being soothed during their first year. Those symptoms
could be precursors of autism, said Dawson.

In a surprising turn, children with autistic regression were actually
using more complex babbling, words and pointing than children who were
not later diagnosed with autism.

"That was an unexpected finding, and we don't know what to make of it,"
Dawson said.

It remains unclear if autistic regression is a biologically distinct
form of autism.

And, like all types of disorders on the autism spectrum, no one knows
yet what causes regression.

The study comes as parents, public health officials and physicians
continue to debate whether thimerosal, a mercury-based preservative used in
vaccines since the 1930s, contributed to the rapidly rising rates of
autism seen in the past decade.

Between 1994 and 2003, the number of children with autism enrolled in
special education programs nationwide increased from 22,664 to 141,022,
according to the Centers for Disease Control and Prevention.

Some trace the steep upturn to more children being diagnosed. But many
parents believe their children were developing normally until receiving
multiple vaccines as toddlers.

Pharmaceutical companies stopped producing most childhood vaccines with
thimerosal in 2001.

A number of studies, including a report from the Institute of Medicine,
have failed to find a link between autism and thimerosal.

The long-simmering controversy heated up this summer after an article
written by Robert F. Kennedy Jr. appeared in the online magazine Salon
and Rolling Stone magazine. Kennedy claimed that federal health
officials attempted to conceal initial findings implicating thimerosal in the
rising number of autism cases.

Last month, public health officials and scientists held a news
conference to reinforce the importance of vaccinations and reiterated that
there's no evidence of thimerosal causing autism.

Dawson declined to comment on the debate, pointing out that her study
does not address the source of autism regression.

"Until we really understand what causes autism, I think we need to
fully investigate all possibilities," Dawson said.

She added that if a genetic distinction between early and late onset
autism is discovered, it could eventually help researchers pinpoint
potential environmental triggers.

"That's still something we're trying to understand and sort out -- the
degree to which genetics play a role and the environment interacts with
genetics," Dawson said.

For Filley and her husband, Daniel Pitt, it seems Damien was snatched
away before their eyes.

"We get a glimpse of our children's personality, and we get a glimpse
of what could be, and then all of the sudden it's gone," said Pitt, a
computer programmer for U.S. Customs and Border Protection.

The Seattle couple doesn't know for sure what happened to Damien. But
they suspect vaccines and other environmental factors played a role.

"He wasn't locked in to this pattern of regression," Filley said.

TRANSCRIPT OF MEET THE PRESS: - David Kirby vs. IOM's Dr. Harvey Fineburg

2005-08-07T11:14:00.000-05:00

TRANSCRIPT OF MEET THE PRESS:

AUGUST 7, 2005

David Kirby & Dr. Harvey Fineburg

debate the use of thimerosal in vaccines

and the potential connection with autism.

Coming next, autism: what we know and what we don't know. Dr. Harvey Fineberg of the Institute of Medicine and David Kirby, author of "Evidence of Harm: Mercury in Vaccines and the Autism Epidemic," a medical controversy, next, right here on MEET THE PRESS.

(Announcements)
MR. RUSSERT: The controversy over childhood vaccines and autism, after this brief station break.
(Announcements)
MR. RUSSERT: And we are back.
Dr. Fineberg, Mr. Kirby, welcome both.
In your book, Mr. Kirby, you raise early on two questions. "Why did the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA) allow mercury exposures from childhood vaccines to more than double between 1988 and 1992 without bothering to calculate cumulative totals and their potential risks? Why ... was there a corresponding spike in reported cases of autism spectrum disorders? Why did autism grow from a relatively rare incidence of 1 in every 10,000 births in the 1980s to 1 in 500 in the late 1990s? Why did it continue to increase 1 in 250 in 2000 and then 1 in 166 today?" Have you answered those questions?
MR. DAVID KIRBY: No, nobody's answered those questions. And we have to answer those questions as soon as possible. We need to solve this mystery. We need to get this controversy behind us so we can go on to find ways to help these kids. Mercury is toxic. It's a known neurotoxin. If it gets into the brain, it could stay there virtually forever. Children born in the '90s received mercury far in excess of federal safety limits. That's indisputable. And yet we're looking at a neurotoxin. And yet most of the evidence developed by the public health sector has been looking at the epidemiology. And we really need to look at what this mercury is doing inside the bodies and brains of these children if we're going to solve this mystery one way or the other.
MR. RUSSERT: Dr. Fineberg, in your 2004 report from the Institute of Medicine, you said this: "While some information suggests that autism rates may be rising, it is not clear whether the observed increase is real or due to factors such as heightened awareness of the disorder or the use of a broader diagnostic definition. ..."
Do you think there's an epidemic of autism or do you think it's simply a change in defining it?
DR. HARVEY FINEBERG: There's definitely a huge number of cases diagnosed with autism, Tim. What is clear is that number recognized has increased dramatically. It's also clear that the definition was broadened markedly in the 1980s and 1990s, and there were increased incentives to recognize children from increased awareness and availability of services. No one knows with certainty what part of the increase is genuine, a genuine increase in numbers, and what part is from increased recognition of people who were already there but not previously recognized. Remember we're talking about a spectrum of diagnoses here, autism spectrum diseases, which range in severity from relatively mild to relatively severe.
MR. RUSSERT: For a layman, in a few words, how would you explain autism?
DR. FINEBERG: Autism is a severe neurodevelopmental disorder that is characterized by social withdrawal, by repetitive behaviors and by some kind of focal attention in its classic form. Basically, it's an inability to relate to others.
MR. RUSSERT: Let me go back and review two of the studies that the Institute of Medicine did because this has helped feed much of this controversy and discussion. Back in 2001, the headline on your press release was "Link Between Neurodevelopment Disorders And Thimerosal Remains Unclear. Current scientific evidence neither proves nor disproves a link between the mercury-containing preservative thimerosal and neurodevelopmental disorders in children, says a new report from the Institute of Medicine... While very few vaccines given to children in the United States today still contain thimerosal, prudence dictates that precautionary measures be taken to decrease thimerosal exposure even further. ... It is medically plausible that some children's risk of a neurodevelopmental disorder could rise in part through increased mercury exposure from thimerosal-containing vaccines."
Thimerosal being a preservative that is put into the vaccine. Then about three years later in May of 2004, the Institute of Medicine issued this headline: "MMR Vaccine And Thimerosal-Containing Vaccines Are Not Associated With Autism, IOM Report Says. Based on a thorough review of clinical and epidemiological studies"--I always destroy that word--"neither the mercury-based vaccine preservative thimerosal nor the measles-mumps-rubella (MMR) vaccine are associated with autism, says a new report from the Institute of Medicine..."
What changed in those three years?
DR. FINEBERG: When you're dealing with a problem as complex as autism, Tim, you have to look at it from many different points of view and assemble evidence from many different vantage points. Biological evidence in humans and in animals, toxicologic evidence, how does the body deal with toxins, and evidence looking at the actual experience in populations. When the 2001 report was written, there was a lot of suggestive information about the toxic properties of mercury and the problem of autism incompletely understood. By 2004, the main change was that there were completed additional studies that were actually looking in the population at the relationship of receipt of vaccines containing thimerosal and the development of autism.
These studies were carried out in the United States, in Great Britain, in Denmark and Sweden. These studies covered hundreds of thousands of individuals, children, in these populations. They compared systematically in different ways whether you received vaccine with no thimerosal, with some thimerosal, with more thimerosal, and they looked at the relationship of those experiences with the development of autism. Uniformly, the best of those studies all show no association between receiving vaccine of different amounts with thimerosal or without and the development of autism. It was the absence of that association which was the main reason for reaching the conclusion that the evidence points to no association between vaccines and autism.
MR. RUSSERT: Mr. Kirby?
MR. KIRBY: Well, I think those flawed epidemiological studies range from severely flawed to seriously questionable. And I also think that you cannot rely solely on epidemiology to prove or disproof causation. In fact, I have right here--this is from the federal court system, but they ruled that epidemiology is not acceptable to prove there is no causal link between an adverse event and a pharmaceutical.
MR. RUSSERT: Explain that in layman's language.
MR. KIRBY: Well, it means that you really, like the doctor said, you can look at the kids as well as look at the large population studies. You need to look at the biology, the toxicology; you need to look at the cellular level. You need to look at immunology, and I would say that what the IOM did last year--I was at that meeting on February 9. Virtually half of the evidence that was presented against the theory was epidemiological--I have the same problem as you. The other half supporting the theory was largely biological. And yet the committee gave a preponderance of evidence or emphasis to the epidemiological evidence and rather, I would say, gave short shrift to the biological evidence.
Dr. Fineberg has mentioned that there are 215 references in the report. I counted them up. By my count, it's roughly a 2:1 ratio, about 115 references for epidemiology, 60 references for biology, and of those, only seven were toxicological reports. Now, we're talking about a known neurotoxin, and there were no toxicologists on the committee, either. So I think even Dr. McCormick, the chairwoman of the committee, told me that there was definitely an emphasis on the epidemiology over the biological evidence.
MR. RUSSERT: When we announced this program, as you might expect, we heard from both sides who are very emotional and passionate about this topic. The National Autism Associations, Dr. Fineberg, wrote a letter to us including this: "The five studies the Institute of Medicine based its conclusion upon are fatally flawed, have never been replicated and have ties to the CDC"--Center for Disease Control-- "(or foreign equivalent mandating vaccines in other countries) and/or the pharmaceutical industry. However, the Institute of Medicine chose to completely ignore the biological and clinical data supporting the link between thimerosal exposure and injuries to children conducted by independent, appropriately- credentialed researchers."
DR. FINEBERG: Tim, the Institute of Medicine panel that came together represented a spectrum of experts who were asked to look at all of the evidence, and they did. They assessed the evidence that bears on the question. Some of it is biological, as I mentioned; some of it has to depend on what you actually find when you go out and look in the population. Is there or is there not an association? Keep in mind that there are many neurotoxins in the world. Dozens of natural and industrial substances have neurotoxic properties. When you're trying to assess a specific association, there are biological studies that are relevant, and there are epidemiological studies that are relevant. All of these studies are not equally valid. Some have more deficiencies and limitations than others.
The committee went through very carefully and assessed each of those studies representing its strengths and weaknesses. All of this is laid out in its report, which is available for download to anyone who wants it from the IOM Web site, www.iom.edu. And anyone can read for themselves how the committee evaluated critically and carefully all of this evidence.
When the letter you read states that these five studies were not replicated, I can't help but think that each one of them has been replicated four times. We have now a growing body of evidence, while imperfect, altogether convincing and all reaching the same conclusion, even though they vary in their methods and in their approaches. And that conclusion was no association between the receipt of vaccines containing thimerosal and the development of autism.
MR. RUSSERT: Why was thimerosal then taken out of the vaccination?
DR. FINEBERG: There's no question that mercury is a neurotoxin. And if there were ways, which there are, to protect vaccines without using mercury-containing substances, it was prudent to remove it, not because there was evidence that it caused autism or even definitive evidence that the amounts in those vaccines caused any neuro problems, but because it was an added measure of precaution that was sensible and correct. And I might add that the latest vaccines that contained any thimerosal as a preservative, with the exception of some flu vaccines, were completed in 2001 and outdated in 2003. So anyone watching this program, any parent can be confident that when they take their child to the pediatrician to be immunized this year, they will receive vaccines without thimerosal as a preservative.
MR. RUSSERT: But prior to this year, there may be some concern?
DR. FINEBERG: Prior to 2003, there were some that still had thimerosal, but the concern is not reaching the level of evidence related to the development of autism. The concern is a more general concern about mercury as a potential neurotoxin.
MR. RUSSERT: Mr. Kirby?
MR. KIRBY: Well, if I could get back to the IOM report, that meeting was held 14--or the report was actually issued 14 months ago. This story is moving very, very fast. In those last 14 months, there has been an equally growing body of evidence, again on the biological side, that would suggest that, in a small subset of children with a certain genetic predisposition, they are unable to properly process the mercury that they were exposed to. And, by the way, the rates of exposure were quite high in the 1990s. At two months of age, children got three shots for a total of 62.5 micrograms of mercury. For their body weight, that's 125 times over the EPA level. For me to reach that level, that would be about 1,125 micrograms.
We know that certain children with autism, again, seem to have higher levels of mercury accumulating in their body. We know that when we give mercury to infant primates, the--there's two types of organic mercury: ethyl mercury in vaccines, methyl mercury in fish. What they found was that the ethyl mercury, once it got into the brain, it converted to inorganic mercury very, very quickly. Inorganic mercury basically gets trapped in the brain, and there's evidence to suggest that, in an infant brain, in the first six months to a year when the brain is still growing, when inorganic mercury gets trapped in that brain, you're going to have this hyper neuro inflammation, or the rapid brain growth that we see in autistic children.
These are the types of things that I think need to be researched further. Yes, we need to look at the epidemiology. There's a whole lot of new biology. This has all been published. None of the biology was published at the time of the IOM hearing. It has since been published, and I actually wonder if the IOM would consider reconvening a new committee or a new hearing to consider the evidence that's come out in the year and a half since the last report.
MR. RUSSERT: Would you?
DR. FINEBERG: Tim, Mr. Kirby's description about the certitude of this evidence, I think, exceeds the actual balance of evidence that is produced when you look at the totality. It's true that mercury is handled differently in the body when it's in the form of so-called ethyl mercury, which is in vaccines, and methyl mercury, which was actually the form which was--on which the standards of exposure were based. That's the type found in fish, as has been mentioned. But when you look back at the studies of actual poisonings of children with large amounts of methyl mercury and ethyl mercury, most toxicologists believe that the ethyl form of the mercury is less toxic than the methyl form--less toxic to the nervous system. And that's based on many experiences with poisoning by these different forms of mercury.
MR. RUSSERT: Many parents have written us over the last couple of days saying that they have put their child in the process of collation, which removes the mercury poisoning from the system, and they say they've seen vast improvement. Wouldn't that suggest that there may be some relationship between the mercury from thimerosal and the removal from the child?
DR. FINEBERG: Tim, autism is a complicated illness, and children with a variety of treatments and non-treatments show improvement over time, which is all to the good. But when you have a single story and a repeated story of an experience that a parent has with a treatment like chelation, you have to keep in mind that the history of medicine is strewn with discarded treatments that people at one time believed in very, very strongly. When you have one case after another, it's one anecdote after another, and the plural of anecdote in scientific terms is not evidence. The only way to know whether a treatment works or does not work compared to other things is to do the clinical trial, comparing those who are given the treatment in a systematic and balanced way with those who are not.
MR. RUSSERT: Mr. Kirby, in your book, you talk about a conference on June 7 to 8 in 2000 in Simpsonwood, Georgia. We've gotten many e-mails and letters about a government conspiracy, that the CDC and the FDA and the Institute of Medicine and everyone has gotten together and really tried to deny information to the parents of children with autism. Do you believe that?
MR. KIRBY: Well, I think the word "conspiracy" and "cover-up," those are very loaded words and I never use them. I do think there has been a lack of transparency and I would think Dr. Fineberg would probably agree with that statement. In this entire process...
MR. RUSSERT: Do you agree with that?
DR. FINEBERG: I don't agree that the lack of transparency had had any bearing on conclusions, and I'm not sure what we mean by a lack of transparency.
MR. RUSSERT: Right now many parents are seeking information from studies from the CDC through the Freedom of Information Act, and they're being told that the HMOs now have that information and they cannot share it because of privacy. And the parents are saying that's outrageous. It could easily be obtained by the CDC and disburse that science, that data so people can look at it and make their own judgments. Should the CDC at least do that?
DR. FINEBERG: In fact, Tim, the Institute of Medicine looked separately in a different study at this system that was in place and did urge the CDC to make these records more available to qualified researchers. But that is not the same as a lack of transparency in the studies or in the reports. All anyone has to do in the case of the Institute of Medicine report is to read the report. All of the logic is laid out, all of the weighing of considerations. Not everyone may agree with each assessment, but they have all the relevant evidence right before them.
MR. RUSSERT: Mr. Kirby, you have said, "I am totally willing to accept there are other factors at play. It may turn out not to be thimerosal at all." What do you think should be done?
MR. KIRBY: Well, I think, first of all, we need clinical trials for treatments. We need to try to help these children as best we can. There is a clinical trial of chelation therapy under way right now at University of Arizona. Dr. Fineberg said we need these trials. I wish the government was funding them. We need to listen to these parents as well. And I think that they've gotten a lot of dismissal from the scientific community. Parents were telling scientists that their children were born normally and then regressed. A lot of people dismissed that and said that couldn't be the case. We now know from a brand- new study from the University of Washington using videotapes of one-year birthday and two-year birthday that is indeed the case. If the parents were right about regression, maybe they're right about chelation.
Just getting back to transparency for one second if I could and this whole safety data base that we're trying to get access to from the report that Dr. Fineberg cited, it says right here, "The lack of transparency of some of the processes also affects the trust relationship between the NIP, the National Immunization Program, and the general public." The lack of trust and the lack of transparency is what's threatening the vaccine program, not talk about mercury. So the doctor's own committee said that there was a lack of transparency again inside this process of analyzing this data that was presented at that conference in Georgia.
MR. RUSSERT: Many of the National Autism Association and other groups, Doctor, point to Task Order 74.
DR. FINEBERG: Yes.
MR. RUSSERT: This is the arrangement between the CDC and the Institute of Medicine, a one-page memo which helps define the study and why it won't be released. Is there a reason?
DR. FINEBERG: I don't know what exactly that's referring to, Tim, but when the Centers for Disease Control contracts with the Institute of Medicine to undertake a study, they do pay the actual costs of the study. But keep in mind that the panel of experts that are assembled by the Institute of Medicine receive no compensation whatsoever for their volunteer service. And when a government agency conveys money to the Institute of Medicine, it's not the agency's money. It's the American people's money. And our obligation is to do the best we can to assess the evidence on behalf of the American public.
MR. RUSSERT: Since thimerosal is now out of the vaccine, latest as of 2003, we will know in a few years whether or not there is a connection...
MR. KIRBY: That's correct.
MR. RUSSERT: ...definitively by the number of cases?
MR. KIRBY: I think so, but again I think we need to look at the biology, but the epidemiology is very important. If the case rates start to drop in the next couple years, I think that will be hugely significant. If I could also just get back to this commission by the CDC of the report, I'd like to do that as well.
MR. RUSSERT: Real fast.
MR. KIRBY: Well, there's evidence that there was pressure put on the committee by the CDC, and we have internal transcripts. I think that's what you were referring to. There are transcripts of private meetings. Some of them were leaked. They're not obtainable through the Freedom of Information Act. Many people are trying to get copies of the other transcripts, and I do hope that the IOM will make those available in the name of transparency in this.
MR. RUSSERT: Was there pressure?
DR. FINEBERG: Absolutely not, Tim. In fact, the whole reason why the Institute of Medicine, the National Academy of Sciences, the National Research Council exists is to be an independent voice outside of government to work on behalf of the needs of the American people. That's what we do. Agencies do not always hear from us what they want to hear. Sometimes the evidence does not point in a direction that is welcome. Stem cell guidelines or information about climate change or, for example, the ways to fix the Hubble Telescope which came out of the national academies--all of these are studies undertaken on behalf of the American public and the same was true for our assessment of vaccine safety.
MR. RUSSERT: You're absolutely convinced there's no connection between thimerosal and autism?
DR. FINEBERG: I'm convinced that the best evidence all points to the lack of an association. These studies can never prove to the point of absolute certainty an absence of an association. But I would say this, other avenues of research looking at other possible causes today are much more promising ways to spend our precious resources.
MR. RUSSERT: And our viewers should know that there is no thimerosal now in vaccinations, other than flu vaccinations, and so it's safe for your children to do--have that done.
DR. FINEBERG: And even some flu vaccines for children are now available without thimerosal, as well.
MR. RUSSERT: You believe there is a possibility of a connection?
MR. KIRBY: Absolutely. And I think one day we'll find out that there might have been--this has contributed to some of the cases in autism in this country.
MR. RUSSERT: Thank you for a very civil discussion. To be continued. We'll be right back.
(Announcements)
MR. RUSSERT: And we are back.
Forty years ago, August 6, 1965, Lyndon Baines Johnson signed into law the Voting Rights Act. One year later, Dr. Martin Luther King Jr. appeared on MEET THE PRESS and talked about that very legislation.
(Videotape, August 21, 1966):
MR. ROWLAND EVANS (Publishers Nsp. Syndicated): You said recently that the "extravagant promises" made a year ago in connection with the Voting Rights bill, have now become a shattered mockery. What exactly did you mean by that, Dr. King?
DR. MARTIN LUTHER KING JR. (SCLC): Well, I mean that this Voting Rights bill came into being to end not only discrimination in its overt expressions and voter registration but also to remove the atmosphere for intimidation, for economic reprisals and for the creation of fear that cause people not to vote. And one of the things we have found is that when you have federal registrars in communities, many more Negroes go out to register because they see a different atmosphere and they are not overarched or undergirded with the fear of intimidation and economic reprisals as much as they do in dealing with some of the local registrars that they have dealt with so long.
Now, the problem is that after that bill came into being, very few registrars were sent into the South; I mean, federal registrars, and even today, all too few have been sent, and this is even true in some communities where we know that there are outright patterns of discrimination.
(End videotape)
MR. RUSSERT: Yesterday, thousands marched in Atlanta, Georgia, to commemorate the 40th anniversary of the Voting Rights Act and to urge the re-authorization of some of its expiring provisions.
We'll be right back.
(Announcements)
MR. RUSSERT: Well, much more information on today's discussion on autism and our guests--you can find many helpful links on Viewer Resources page of our Web site, mtp.msnbc.com. Viewer Resources.
That's all for today. We'll be back next week. If it's Sunday, it's MEET THE PRESS.
© 2005 MSNBC Interactive

FOXNews.com - Gene Interaction Linked to Autism Risk

2005-08-05T12:24:00.000-05:00

By Salynn Boyles

It has long been believed that complex genetic interactions are at play in autism, and new research offers some of the first concrete evidence that this is the case.

For the first time, researchers have identified an interaction between two specific genes that increases the risk that a child will develop autism. Both of the genes are associated with a chemical in the brain that has been a target of autism research for the past decade.

"This is exciting because it tells us that researchers seem to be on the right path and that we may be starting to understand the brain pathology (of autism)," says Andy Shih, PhD, who is chief science officer for the National Alliance for Autism Research, which helped fund the new study.

Autism is characterized by communication problems, social impairment, and unusual or repetitive behaviors.

What Raises a Baby's Risk for Autism?

Genes and Environment

It is widely thought that autism risk is determined by a combination of unidentified genetic and environmental factors. Children born into families with one autistic child are known to be at greater risk of developing autism, but the extent of that risk is not well understood.

Autism researcher Margaret Pericak-Vance, PhD and colleagues with Duke's Center for Human Genetics have long studied a brain chemical associated with slowing or stopping nerve activity, known as GABA. The GABA system acts as something of an information filter to prevent the nerves from becoming overstimulated.

It has long been suspected that this filtering process is compromised in many autistic children. Impairment of the GABA system could overwhelm the brain with sensory information, leading to many of the behavior traits associated with autism.

GABA is believed to play a key role in the early development of the brain, and the Duke researchers and others have previously shown a connection between GABA and autism.

In their latest study, Pericak-Vance and colleagues examined 14 genes that help make parts of the GABA receptor. The receptors allow the chemical to affect nerve function.

The participants in the study were 470 Caucasian families with at least one autistic member; 266 families had more than one member with autism.

The findings are reported in the September issue of the American Journal of Human Genetics, published online today.

The researchers identified one gene called GABRA4 as being associated with autism risk. Interaction with a second gene known as GABRB1 appeared to drive this risk.

"This is the first interaction of this sort that we can point to as having a real statistical correlation with autism," researcher John R. Gilbert, PhD, tells WebMD. "This is a first step, but we don't yet know where it will take us."

New Intensity to Debate Over Autism Cause

Better Tests and Treatments?

Gilbert says the Duke research team will now study other GABA receptors as well as other genes associated with GABA metabolism.

While much of the research has focused on the GABA system, it is clear that other genes are also involved. The thinking among the experts is that as few as 10 separate genes and as many as 100 may play a role in autism.

"Even if we prove that portions of the GABA pathway are actively involved, it will only be a factor for a minority of kids with autism," Gilbert says.

All agree, however, that the newly reported findings could advance the search for earlier diagnostic tests and autism treatments.

A number of existing medications already target the GABA system, including some antiepileptic drugs.

"As we begin to understand the GABA system as it relates to the neurological underpinnings of autism, we may advance toward new therapies," says Michael Cuccaro, PhD, who is another study researcher.

One hope, says Andy Shih, is that the research will lead to medications that can lessen or prevent many of the symptoms of autism in a subgroup of people with the disorder.

"We should consider this to be a foot in the door," he says.

More on Autism Symptoms and Causes

By Salynn Boyles, reviewed by Brunilda Nazario, MD

SOURCES: Pericak-Vance, M. American Journal of Human Genetics, September 2005; vol 77, online edition. John R. Gilbert, PhD, research professor, Center for Human Genetics, Duke University Medical Center, Durham, N.C. Andy Shih, PhD, chief science officer, National Alliance for Autism Research. Michael Cuccaro, PhD, Duke Center for Human Genetics.

Autism as Metaphor - New York Times

2005-07-30T09:08:00.000-05:00

July 31, 2005
Autism as Metaphor
By POLLY MORRICE
SOME time ago, while trolling the Web, I came across a 30-year-old paper by William P. Sullivan, originally published in The Bulletin of the West Virginia Association of College English Teachers, that describes Melville's Bartleby as ''a high-functioning autistic adult.'' The notion struck me as far-fetched, but it certainly has had legs. A recent search using the words ''Bartleby'' and ''autism'' turned up, among other results, a 2004 Modern Language Association essay on the pale scrivener's ''autistic presence'' and a University of Iowa study guide that asks if Melville might have ''observed some of these attributes in himself.'' Bartleby even appears on a site listing literary figures with autistic traits -- along with Pippi Longstocking, Sherlock Holmes and several characters from ''Pride and Prejudice.''

What's behind the impulse to unearth autism in the classics? In part, it may reflect our growing awareness of the disorder and its milder cousin, Asperger Syndrome. Critics seeking to diagnose literary icons may also be taking the current vogue for finding autism in dead geniuses -- Michelangelo, Wittgenstein -- to its logical conclusion. Given these trends, it's not surprising that the wave of fascination with neurological quirks has also touched contemporary literature. Over the past decade or so, novelists and short-story writers in various markets -- from genre authors to writers of young adult fiction to avant-garde experimentalists -- have all created characters who could be labeled autistic.

It's easy to see autism's appeal to storytellers. Even mildly autistic people have problems communicating and understanding social behavior; what's more, these difficulties remain tantalizingly unexplained in an era when medical advances have demystified so many other ailments. We now know too much about, say, cholesterol, for a writer to portray heart disease as metaphorically as Ford Maddox Ford did almost a century ago in ''The Good Soldier.'' But writers can still turn to autism when they're looking for an ailment that can drive a plot and convey what English teachers once called ''layers of meaning.''

Not very long ago, those layers had a narrow range, from dark to darker. In ''M31: A Family Romance,'' Stephen Wright's 1988 portrait of a malevolently loony family, the youngest child, Zoe, slams her head against walls, yelps and echoes other people's words. These symptoms almost caricature those of severe autism, but Zoe's father, Dash, interprets them as the signals she uses to commune with extraterrestrials, whom he considers his ancestors. It isn't until the end of the book, after Zoe emits the ''scary cries of an undomesticated and certainly illegal beast,'' that Dash starts to realize his ''jungle daughter'' is damaged. Applying animal metaphors to disability seems jarring today, but it conforms to the professional belief current at the time: that autism was untreatable and tragic.

Sue Miller's 1990 novel ''Family Pictures'' also features an ''animal child,'' or so David Eberhardt conceives of his autistic son, Randall, whose existence determines the choices his family makes over 35 years. Born in the late 1940's, Randall stops speaking at age 4 and never learns any skills. But instead of trying to penetrate his silence, Miller uses him to explore two approaches to the problem of human suffering. Randall's mother, Lainey, chooses religious acceptance; she loves her son unconditionally, despite realizing that ''nothing she did really helped . . . nothing changed, nothing developed.'' In contrast, David, a psychiatrist, responds to Randall's problems analytically, and at first he accepts the psychogenic conceit that rejecting mothers cause autism in their children, blaming Lainey for Randall's illness.

Unsentimental and slyly ironic, Miller lets us know that David, who sees Randall as ''the son he would wish away if he had the power,'' is in fact the rejecting parent. But Miller sustains at least one romantic notion, current when she wrote her novel- that autistic children are more beautiful than other children. Randall is ''undeniably the prettiest'' of Lainey's six children. As a teenager, he is ''still beautiful sometimes, in a nearly spiritual way,'' but as a man, he has ''thickened and coarsened.'' The idea of Randall as a failed Peter Pan is revealed most clearly at his death, when he's described as ''free, in some sense, of human experience.'' Compared to his rebellious and brilliant siblings, Randall has, in fact, always been barely human.

No recent character in contemporary fiction has been as intractably autistic as Randall. A possible explanation: during the 1990's, we began receiving the hopeful news that symptoms of autism might range from marked to mild, and that early treatment can help the autistic child. Perhaps as a result, in the past decade the disorder has been dealt with most frequently in young adult fiction. The more reader-friendly autistic characters in novels like Nancy Werlin's ''Are You Alone on Purpose?'' or ''The Truth Out There,'' by Celia Reese, sometimes speak fluently and have savant skills.

The best entry in this field is Gennifer Choldenko's coming-of-age novel ''Al Capone Does My Shirts.'' Its narrator, the 12-year-old Moose, faces the double challenge of living on Alcatraz Island in the 1930's and babysitting for his older sister, Natalie, a math whiz whose behavior would earn an autism diagnosis today. Choldenko has the teenage Natalie do something highly unusual among autistic literary characters: she learns pronouns and gets a crush on an inmate. In short, she develops.

The best-known fictional savant in the past few years is 15-year-old Christopher Boone, the prime-number-crunching narrator of Mark Haddon's novel ''The Curious Incident of the Dog in the Night-Time.'' Although Christopher sets out to discover who killed his neighbor's poodle, the book is less a mystery than an exploration of how Christopher's mind functions (''My memory is like a film'') and how his extreme detachment dismays his down-to-earth English family. It's also the work of a writer who has done his research but usually resists clobbering us with it. At one point, for example, Haddon wryly slips in the theory-of-mind concept of autism, developed by British researchers in the 1980's. Christopher recalls how, as a young child, he failed a test meant to measure his ability to infer other people's thoughts. His teacher predicts he'll always have trouble with such tasks, but Christopher now knows he can puzzle out these tests -- just as clever autistic teenagers have done in real life, dislodging the theory's supremacy.

For parents who, like me, have a child with some of Christopher's traits, the least believable aspect of the novel isn't his stupendous math talent but his utter remoteness from his family. Yet Christopher's inability to connect with the people who adore him (he likes dogs better than their masters) is what the novel is all about. If he were to hug his dad, it might be a more authentic rendering of his form of autism, but as fiction it would strike a false note.

Which leads to a deeper question about autism in fiction. Should writers be held to account for putting a metaphorical spin on a disorder that affects so many real people? Or for describing it inaccurately? Susan Sontag rejected using illness as metaphor, but that's a losing battle. Novelists have always turned misfortunes to their advantage. Forget the potential autism in ''Pride and Prejudice'' and note instead how adeptly Austen packs Jane Bennet off to a sickroom with a bad cold so her sister Elizabeth can be brought together with the haughty Mr. Darcy.

In Dean Koontz's thriller ''By the Light of the Moon,'' an autistic savant named Shepherd teleports people from one place to another. Upon hearing someone utter a common expression of impatience, Shep responds, ''Almond, filbert, peanut, walnut, black walnut, beechnut. . . . '' When it comes to this sort of portrayal of autism, a simple ''nuts'' would do just fine.

Polly Morrice has recently reviewed books by David Plotz, David Kirby and Temple Grandin for the Book Review.

True measure of QB's heart found at home

2005-07-27T13:46:00.000-05:00

True measure of QB's heart found at home
Flutie family faces challenge of autism
http://www.boston.com/sports/articles/2005/07/24/true_measure_of_qbs_heart_found_at_home/
By Jackie MacMullan, Globe Staff | July 24, 2005

NATICK -- This time there are no boxes, no moving vans, no harried
coast-to-coast transports of the dogs, the kids, the stuff.

Doug Flutie is home. His new job, backup quarterback for the New
England Patriots, enables his daughter, Alexa, to complete her senior year of
high school alongside her lifelong friends -- not to mention cousins --
from Natick. It allows his son, Dougie, to sleep in the same room all
year, with his toy box and his hockey stick and his big old bear.

Dougie is 13 now. He loves music and the ocean. Sometimes, when the
family is at the beach, he'll bolt toward the water without warning, and
Doug will have to chase him down. Dougie will hear his father coming,
his steely legs frantically pounding the sand in pursuit, and he'll wheel
around and smile. You know what he'd be saying if he could talk:
Gotcha, Dad.

He loves it when his mother, Laurie Flutie, plays the ''Hey" song. When
he was 2, before autism overtook him, he would croon right along with
her. You know the tune. It's ''What I Like About You" by the Romantics.
When they sang, ''You really know how to dance," Dougie would bust a
move, smiling and laughing, like always.

Dougie doesn't dance so much anymore. He often sits in his stroller, a
state-of-the-art contraption that helps contain him and provide comfort
from the swirl of life's activity that is, at times, just too
overwhelming. He has a habit of drifting off to his own place, where nobody --
not his mother, his father, his sister, or a team of top-flight
physicians -- can penetrate.

Autism is heartbreaking that way. One minute, your son is smiling at
you, and the next, he is looking right through you.

''He's always looking away," said Doug Flutie, wistfully. ''You wonder
what he's thinking."

But his parents believe Dougie is happy. He doesn't know he's autistic,
doesn't notice when others gawk at him when he's shouting, or chewing
on a plastic bottle, or twirling objects again and again and again. Some
people stare, others recoil. His parents have long ago accepted that.

The rest of the world simply does not see the Dougie they see.

''People ask me how he's doing," Doug Flutie said. ''It's not that he's
doing any one specific skill. It's little things. He follows directions
better. He gets in and out of the car by himself. That's a huge
improvement. Before that, it used to be a procedure."

Here is one of the most celebrated athletes in New England sports
history, a Heisman Trophy winner who married his high school sweetheart in a
storybook wedding. The Fluties were millionaires by the time Doug was
25, yet his own son, his namesake, can't even begin to carry on the
legacy. It's likely Dougie will never read or write. He will never be able
to take care of himself. He probably will never speak. The Random House
Dictionary defines autism as a pervasive developmental disorder
characterized by impaired communication, excessive rigidity, and emotional
detachment.

Heartbreaking? Of course it is. But don't you dare feel sorry for the
Fluties.

''We don't really like that poor, poor pitiful me thing," Doug
explained.

They started the Doug Flutie Jr. Foundation for Autism in 1998, three
years after their son was diagnosed. As they learned more about Dougie's
condition, they recognized the need for heightened awareness,
education, and research. When Laurie purchased a special tricycle for Dougie
with wider handlebars and a bigger seat, the price tag was more than
$1,000. His special stroller cost $2,000. It rankled her. How could average
families afford this?

The foundation. It supports people who need financial assistance in
caring for their autistic children. It funds research and helps develop
new programs and services.

''I feel like Dougie was meant to do this," Laurie said. ''Without him,
there is no foundation. It wouldn't have happened. It's in Dougie's
name. It's his legacy. It gives us peace."

Still, it's not easy sometimes. Doug and Laurie have nieces and nephews
who are growing and prospering all around them. Bill Flutie's son Brett
is the same age as Dougie and he's an athlete, just like his older
brother Billy, who just committed to Boston College to play football. The
Flutie family is close; Doug's brothers, Bill and Darren, and sister
Denise, all live in town. Laurie's mother is still there. There are daily
reminders of what could have been.

''We were at one of Brett's basketball tournaments recently," said
Doug. ''He came out and said, 'I could use one more guy on the court with
me. I need one more guy who thinks like I do.'

''I turned to him and said, 'Brett, you know, that's supposed to be
Dougie.' "

Brett blanched. Doug's brother Bill turned away, his eyes moist. But
the quarterback no longer cries for his son.

''They see what Brett is doing, and they want that for us," he said.
''But we don't miss it as much as they might think, because we never had
it. We love Dougie just the way he is."

Devastating diagnosis

When Dougie Flutie was just 2, if he concentrated really hard, he could
practically reach the hoop with a regulation-size ball. He loved to
shoot baskets with his father, and would happily sit with his little arms
and legs curled around Doug watching an entire NBA game.

He was an active, alert, mischievous child.

''When he wanted juice, I'd ask him, 'Now, Dougie, what do you say?' "
Laurie recalled. ''He'd giggle a few times, but wouldn't answer. I'd
say again, 'Dougie, what do you say?' He'd laugh, then he'd shout,
'Please, beauty mom!' "

When his father went down to the basement to practice his drums, little
Dougie would trail behind, climb into his lap, and bang on the cymbals.
They lived in Calgary at the time, when Flutie was starring in the
Canadian Football League, and their house included a master bedroom with a
fireplace that also connected to the living room. Dougie loved to stick
his hand through the grate from one room to another, shouting with glee
to his sister, ''Lexa, grab the hand!"

''He was one of those kids who hated going to bed," Doug said. ''We'd
put him in, and the next thing you know he'd be standing on the balcony.
We'd say, 'Dougie, go to bed,' and he'd say to us in that sweet little
voice, 'Good night!' "

The memories are like precious stones, to be coveted and admired and
preserved. Dougie was once like all of his cousins. He talked and he sang
and he cried and he giggled and he looked right into his parents' eyes
and told them he loved them.

It changed shortly before Dougie turned 3, when Laurie and the kids
went back to Natick to enroll Alexa in school. All of a sudden, the sunny
boy was subdued. He talked less and less. Laurie called the
pediatrician. He told her it was not uncommon for younger siblings to stop talking
for periods of time, because their older brother or sister did the
talking for them.

Two months passed. Dougie barely spoke at all now. The only time he
managed to articulate much of anything was to repeat what Laurie said to
him. Laurie went back to the doctor. She mentioned Dougie's symptoms
developed shortly after he had his immunization shots. She was referred to
a neurologist, who recommended the boy be admitted to New England
Medical Center.

Dougie underwent a battery of tests. He was scared. He had wires coming
out of his head. They put him in a crib that looked like a cage. He
looked away, and he never looked back.

''I remember being in the doctor's office," Doug said. ''They told me
Dougie wouldn't make eye contact with anyone. But when I looked at him,
I saw the old Dougie."

The doctors surmised that Dougie was developmentally challenged from
birth. Laurie put together a video of her child when he was a completely
healthy, vibrant, communicative 2 1/2-year-old -- ''his highlight
film," she joked. The doctors viewed it, then grew silent.

''I watched and said, 'Oh my God,' " Doug said. ''I didn't realize how
far he'd regressed."

The diagnosis -- autism -- was devastating. But, within a week, Doug
and Laurie were moving forward.

''We just started focusing on, 'Where do we go, who do we see?' " Doug
said. ''I've had to do that a lot in my career. I know how to put last
week behind me."

Questions are raised

Doug Flutie was always the little guy who defied the odds. He was a
United States Football League bonus baby. He was a Canadian Football
League legend. He was a replacement player in New England, a controversial
figure in Buffalo, a sage veteran in San Diego. Along the way, he used
his notoriety to start the Doug Flutie Jr. Celebrity Golf Classic, an
all-star basketball tournament, and a 5K road race, all to benefit the
foundation.

''It always amazes me when I work with families like the Fluties, who
truly do not feel sorry for themselves," said Lisa Borges, executive
director of the foundation. ''It would be easy to be bitter, or angry. No
one would blame them. But they don't say, 'Why me?' They say, 'What can
I do?' "

According to the Center for Disease Control, 1 in 166 children develop
some form of autism, ranging from mild and somewhat high functioning
(like Dan Marino's son) to severe. The number is staggering, and Bill
Flutie does not understand why there hasn't been a more urgent look at the
preservative containing mercury that is used in immunizations.

''You've got to shake your head at it," Bill said. ''Dougie is a normal
little boy, then after the shots he's not? Autism is reaching epidemic
proportions. I wish someone like Doug, with so much visibility, could
pressure the government to do something.

''I'm afraid to discuss it with Doug. It's so personal. It's a tough
subject. It upsets them, sometimes."

Doug and Laurie have struggled with this issue. They, too, believe the
immunizations are the cause of Dougie's autism, even though no studies
have proven a direct link.

''The government will never admit it, but we've got a big problem,"
Doug Flutie said. ''They did a study. Great. Happy for them. But there's
no doubt in my mind we need to get the mercury out of these shots.

''We can't get into the lab ourselves and prove it, so we're trying to
raise funds for research. No matter what they find it's not going to
make Dougie better. But it could help others."

They are wrapped up in Dougie; they admit it. There are excellent
facilities that house autistic patients, but the Fluties have rejected that
option.

''Some members of our family have said, 'You know, the sad day will
come when you are going to have to put him someplace,' " Doug said. ''I
say no. Screw that. I want him with us. If he's 20, 25, 30, 35, I want
him here."

''I will never put him in a home as long as I can possibly help it,"
Laurie said emphatically.

Dougie remains a challenge. He needs constant attention. He is apt to
suddenly sprint off into a crowd. He rarely cries, so if he's hurt, or
suffering, his family is often unaware. He cannot swim, so he must be
supervised near water at all times.

This past summer, Dougie was sitting in the hot tub when he suddenly
popped out, scooted down the slide of the family pool, and plopped into
the water without his life vest on. Alexa quickly pulled him to the
surface; her brother, quite pleased with himself, merely grinned at her.

Doug worries his son doesn't eat enough. Dougie is thin, and he never
indicates he's hungry, so his father leaves a trail of easily accessible
snacks throughout the house. Laurie worries that Dougie might become
sick and be unable to tell them. Alexa needs glasses; how would Dougie
ever let them know if he did?

''We were home recently and Dougie was crouched down, just staring out
the window," Doug said. ''He had been doing it quite a while, so I
said, 'Dougie, come over here.' He didn't move. That's when we realized his
finger was stuck in the vent. The poor kid couldn't tell us."

One night, Laurie tiptoed up to check on Dougie in his room. He was
looking out the window with his hand sticking through the net of his
little plastic basketball hoop. His finger had become caught and was turning
blue. Dougie never made a sound. The net is no longer in his room.

Realistic about the future
Who knows what Dougie would have been like? Is it a coincidence that
the first thing he reaches for in his toy box is the hockey stick, the
basketball, or the football? Doug tries to play catch with Dougie
sometimes. He'll say, ''Get ready, I'm going to pass you the ball." His son,
his expression blank, will not turn around. His father will throw the
ball anyway. Most times, Dougie will expertly snatch it without looking.

''There are moments when you get a little bummed out," Laurie admitted.
''You watch Brett playing sports, and you think to yourself, 'These
would be the kids Dougie would be hanging out with.' There are at least
eight kids in the neighborhood Dougie's age who are running around, doing
what boys do. You wish Dougie could be out there with them. But you
can't dwell on it."

They are realistic about their son's future. He may improve in
increments, or this may be as good as it will ever get.

''I believe Dougie can understand the majority of what we're saying to
him," Doug said. ''I just don't think he's able to respond.

''Jeffrey Lurie, the owner of the [Philadelphia] Eagles, had a brother
who was autistic who didn't speak his first word until he was 35. He
told Jeffrey, 'Don't talk to me like I'm an idiot.' "

When Doug signed with the Patriots, he sat down and explained to his
kids how he had met coach Bill Belichick years ago at rocker Jon Bon
Jovi's 30th birthday party, and how he thought this job with New England
was a good fit. Flutie had seriously considered playing one more year in
the CFL with his brother Darren before the Patriots made their pitch.
NFL offers from the Giants, Seattle, and Tampa Bay were more lucrative,
but they couldn't guarantee he'd be able to watch his nephew Billy play
for Natick High every Friday night.

Flutie reports to Patriots camp today knowing his son is settled.
Dougie can hang out in his ''hot pool" and continue his schooling at a
collaborative program in Framingham.

The unknown comes into play years from now, when Doug and Laurie grow
older. Laurie had a nightmare about it two weeks ago, and woke up
sobbing, shaking. ''I told Alexa about it," Laurie said. ''She said, 'Mom,
stop worrying. I'll take care of Dougie.' "

''People think he's a burden," Doug said. ''He's not. I love going up
to his room and lying with him on that big old bear he's got on his
bed."

The Flutie family went to dinner recently. They were in the middle of a
conversation when Dougie suddenly picked up the rectangular menus and
began twirling them.

''He's got them in both hands, and he's spinning them around, and we
can't believe it," said Doug Flutie, with wonder in his voice. ''So we
all start trying it. But we can't. We can't do it."

The stunned waiter stared at this nearly grown kid in a stroller making
strange guttural noises while spinning these menus like some kind of
juggler. He had recognized Doug Flutie when they came in, and now his
facial expression betrayed his thoughts: how sad.

No. It's not sad at all. Look at them. Do they look unhappy? So Doug
Flutie Jr. will never be a quarterback. So what? His father does not
care. Dougie's legacy -- his foundation -- is so much more meaningful.

We should all be able to see that.

Donations to the Doug Flutie Jr. Foundation for Autism can be sent to
P.O. Box 767, Framingham, MA 01701

Excellent Summary of the Autism/thimerosal debate from USA Today

2005-07-07T04:55:00.000-05:00

Mistrust rises with autism rate

http://www.usatoday.com/news/health/2005-07-06-autism_x.htm

By Anita Manning, USA TODAY

The argument over what is causing soaring rates of autism has reached a
boiling point with furious parent groups and their famous allies
accusing scientists and public health officials of hiding information to
cover up their own mistakes.
Scientists are offended and in some cases intimidated by an onslaught
of e-mail, Internet slurs and unprecedented criticism. (Related story:
The future of autism)

At issue: whether the mercury-based preservative thimerosal, used in
several infant vaccines up until five years ago and still in some
vaccines that children get, is responsible for the developmental disorder.

"We're injecting poisons into children," said environmental attorney
Robert F. Kennedy Jr., in a phone interview last week. Last month,
Kennedy charged in an article in Rolling Stone and posted online on Salon.com
that U.S. health officials purposely covered up the dangers of
thimerosal to protect themselves and "Big Pharma" from lawsuits in "a chilling
case study of institutional arrogance, power and greed."

Scientists say those charges are absolutely false. Much of the evidence
for a thimerosal link to autism, they say, rests on questionable
studies and comments taken out of context. Virtually all medical professional
societies, the Centers for Disease Control and Prevention, World Health
Organization and Institute of Medicine have stated there is no evidence
vaccines cause autism.

"There is a dangerous mistrust of science," says Paul Offit, an
infectious-disease specialist at Children's Hospital of Philadelphia. "I don't
think it's new, but it may be worse."

As the debate moves into popular culture - radio personality Don Imus
and TV talk show host Montel Williams have weighed in - Offit and others
have been subjected to a storm of e-mail messages and phone calls.
Internet message boards have posted attacks on vaccine advocates, in some
cases posting their home addresses. The CDC has increased security.

"I got a ton of (electronic) hate mail and got a call to my house,"
says Offit, who appeared on MSNBC to refute the thimerosal claims. He says
another colleague who spoke out on a radio show received "incredibly
scary calls at home, at work. It scared her. She said, 'That's it, I'm
out.' It's a thankless job. You get hammered."

On May 17, 2004, a committee of the Institute of Medicine (IOM)
released a report concluding that the scientific evidence "favors rejection of
a causal relationship" between thimerosal-containing vaccines and
autism. An earlier review in 2001 found the evidence available at that time
was too thin to draw that conclusion, but the 2004 report was based on
more than 200 studies and papers. It found that "all well-designed
epidemiological studies provide evidence of no association between
thimerosal and autism," and it recommended that instead of spending more money
chasing a theoretical link to thimerosal, research dollars should be
directed at more promising areas of inquiry.

That was supposed to put the issue to rest. It did not. If anything, it
poured gasoline on the embers.

Critics charged the committee was biased and that it failed to give
credence to studies they believe suggest that for some children, the
exposure to levels of mercury in vaccines is toxic.

Sallie Bernard, co-founder of SafeMinds, an anti-thimerosal group, says
the scientists who claim vaccines are safe are "involved in vaccination
issues, infectious diseases or public health. They're the ones who have
an interest in not finding the connections. They're the ones who have
done these studies." She says federal regulators "should have pulled
this stuff from vaccines a long time ago. It's not like mercury is this
big mystery substance."

Thimerosal contains ethylmercury, a different form of mercury from the
type spewed out of coal-fired plants and that accumulates in fish.
Ethylmercury in minuscule amounts has been used as a preservative in
multi-dose vials of vaccines since the 1930s. Health officials recommended in
1999 that it be phased out in infant vaccines as a "precautionary
measure." It is still in some flu shots and diphtheria-tetanus boosters.

U.S. Rep. Dave Weldon, R-Fla., a doctor, says that during the 1990s, a
baby who received all the recommended shots could be exposed to mercury
levels above those considered safe by the Environmental Protection
Agency.

"The amount of mercury we were injecting into kids dwarfs all other
exposures," says Weldon, who is sponsoring legislation to ban thimerosal
from children's vaccines. A dozen states have or are considering similar
laws.

Autism rates began to climb after two new thimerosal-containing
vaccines, Hib (haemophilus influenzae type B) and hepatitis B, were added to
the list of recommended shots for babies in the late '80s, Weldon says.

"Autism went from a disease I'd never seen to a disease you hear about
everywhere," he says.

David Kirby, whose book Evidence of Harm (St. Martin's Press, $26.95),
details the emergence of the controversy over vaccines and autism, says
he and a group of parents and researchers are meeting with legislators
to urge attention to the possible thimerosal-autism link.

Kirby cites a study in monkeys that suggests mercury may persist in the
brain after it is no longer detectable in blood. Another showed
thimerosal harmed mice bred to be susceptible to autoimmune disease. And in a
third study, a UPI reporter found a lower-than-expected rate of autism
in an Amish community that did not believe in vaccination.

Kirby says there are too many unanswered questions. "It all points to
the need for much more research," Kirby says.

Scientists admit they don't know precisely what causes autism, though
they believe it has a genetic component triggered by something in the
environment, possibly occurring during the first trimester of pregnancy,
which would eliminate infant vaccines as a candidate. Among studies
cited by IOM was one that found autism rates in Denmark actually increased
after thimerosal-containing vaccines were discontinued in 1992.

Kirby acknowledges other theories. "I am totally willing to accept
there are other factors at play. ... It may turn out not to be thimerosal
at all."

Time will tell. Scientists and parent groups agree that since
thimerosal is now out of most vaccines, autism rates over the next couple of
years will provide some clues: If rates drop dramatically, that will lend
weight to the theory that thimerosal is involved.

Parents' reaction to the controversy is mixed. Signe Linscott of Falls
Church, Va., says that as far as she knows, vaccines had nothing to do
with the autism that has affected her older son, Jack, 11.

"Of course we want to find out why this has happened," she says. "I
just wish all the attention and money spent on looking backward could be
turned forward, to programs for educating these kids, to get them and
their families to a place where real progress can be made."

Others agree family support and services should be front and center,
but they resent feeling dismissed by the medical establishment.

Susie Kelly of Laurel, Del., says her son, Mark, 10, loves Nintendo and
videos, and he likes to swim. But he has to sit in the same place every
day to put his shoes on, has to exit through the same door he entered,
and he doesn't like surprises. On a recent family trip to Mexico, she
says, "he got upset when it rained, because it's not supposed to rain in
Mexico."

Kelly, a nurse, is not certain vaccines are to blame, but she is
growing suspicious. "You always wonder. I feel like the medical community is
just stonewalling it and not listening," she says.

Parents don't care about politics or blame, says Michele Adamus of
Fairfax, Va., whose son Zachary has a developmental delay. "When you have a
child who has special needs of any kind, what you want - and the
hardest thing to get - is answers."

Parents may blame vaccines, Adamus says, because, "in lieu of other
answers, that is something to hold on to."

Public health leaders need to do a better job of explaining vaccine
safety issues to the public, says Peter Sandman, a risk communicator who
provides advice to businesses, non-profits and government, including the
CDC.

Sandman says advocates on both sides have fallen prey to a tactic he
calls "misleading toward the truth." It happens when "you believe you
know the truth" but don't trust others to grasp it. "It becomes very
tempting to leave out the facts that might mislead the public" toward a
different conclusion.

When critics say someone is lying, Sandman says, "you have to say,
'yeah, but are they lying on behalf of the truth or are they lying on
behalf of a lie?' "

Three reasons not to believe in an autism epidemic

2005-06-30T04:43:00.000-05:00

Public release date: 29-Jun-2005
[ Print Article | E-mail Article | Close Window ]

Contact: Jill Yablonski
Journalnews@bos.blackwellpublishing.net
Blackwell Publishing Ltd.

Three reasons not to believe in an autism epidemic
First, it is important to appreciate the history of autism and how autism has been diagnosed suggest authors Morton Ann Gernsbacher, Michelle Dawson, and H. Hill Goldsmith. The diagnosis was first coined in the 1940s, but it was not added to the Diagnostic and Statistical Manual of Mental Disorders (DSM) until 1980, and the DSM diagnostic criteria have changed over the years. For example, the 1980 criteria required that an individual have "a pervasive lack of responsiveness to other people;" in contrast, the current 1994 criteria require that an individual demonstrate only "a lack of spontaneous seeking to share achievements with other people" and peer relationships less sophisticated than would be predicted by the individual's developmental level. As another example, the 1980 criterion of "gross deficits in language development" was replaced by the 1994 criterion of difficulty "sustain[ing] a conversation." One purpose of the report is to make the public aware of these less restrictive diagnostic criteria.
Second, although a California study claimed to show that these diagnostic expansions didn't contribute to the increased number of diagnosed California cases from the 1980s to the 1990s, the authors of the Current Directions in Psychological Science article identified a serious flaw in the unpublished California study's reasoning.

Finally, according to the authors, a third reason not to believe in an autism epidemic involves the U.S., Department of Education's annual "child count" data, which are used as supportive evidence of an autism epidemic. What some people fail to realize is that the Department of Education didn't even have a reporting category for autism until the 1991-1992 school year. Therefore, dramatic increases in the number of children served in the public schools under this reporting category would have been expected throughout the 1990s. The authors propose that the "child count" numbers will most likely continue because they still don't match the numbers reported in recent surveys that use more rigorous epidemiological methods.

The report does not dispute the likelihood that more individuals fit current day diagnostic criteria than fit previous diagnostic criteria, or that more individuals are receiving autism diagnoses than before. But given that the diagnostic criteria have been purposely broadened, there is greater public awareness, and epidemiological studies use updated and more consistent definitions and go to greater lengths to identify cases, the authors caution against calling these logical increases an "epidemic."

The report appears in the latest issue of Current Directions in Psychological Science, a journal of the American Psychological Society. Media wishing to receive a PDF of this article please contact journalnews@bos.blackwellpublishing.net

Current Directions in Psychological Science publishes concise reviews on the latest advances in theory and research spanning all of scientific psychology and its applications. The American Psychological Society represents psychologists advocating science-based research in the public's interest.

Morton Ann Gernsbacher is a Vilas Research Professor and the Sir Frederic Bartlett Professor at the University of Wisconsin-Madison. She is President-Elect of the American Psychological Society. Michelle Dawson is a Research Associate at the Pervasive Developmental Disorders Specialized Clinic at the University of Montréal. H. Hill Goldsmith is a UW Foundation Fluno Bascom Professor and Leona Tyler Professor at the University of Wisconsin-Madison. Drs. Gernsbacher and Goldsmith are parents of an autistic child, and Ms. Dawson is autistic.

Dr. Gernsbacher is available for questions and interviews.

Jack's Fantastic Day!!!

2005-06-26T13:48:00.000-05:00

Therapist, Shanynn sent this note to Toni because she had missed her when she left for the day on Saturday - it's just a great note that we wanted to share with everybody and it demonstrates some of Jack's recent progress

Hi Toni,
Sorry I missed your call! I SO wanted to tell you about you Jack's day; it was very special. I don't really know how to put it into words, but some very magical moments happened today- moments that I felt Jack was SO THERE- does that make sense? I saw moments of him being a little boy, moments where you'd forget he had autism. Particularly when we were outside today. I truly feel today was the first time that Jack actually PLAYED with me, for more than a fleeting moment. There was genuine play going on... he grabbed my hand and took off running, then let go, continued to run a few feet in front of me, then glanced over his shoulder to make sure I was chasing him, giggled and kept running! Then, he turned around and CHASED ME! I'm serious!!!! I nearly fell over!!! Not only that, but his imitation skills blew me away today. I asked him to get a ball when we were downstairs (which he quickly scooped up with no direction whats-so-ever). When we were outside we tossed the ball back & forth for a bit, then I rolled it to him, and he immediately rolled it back to me. After a minute or two, I kicked it to him. Without a moments hesitation, he kicked it right back at me!!! He was so engaged; so PRESENT! And he was laughing.... I was so moved- I've never felt so connected to Jack. We played on the slide, and he said along with me his approximation of "ready, set, go" repeatedly! He took me to the swing and prompted ME to sit down so he could crawl in my lap... It was really mind blowing Toni....
And there were moments downstairs too... he was vocalizing more than I've ever heard before. I told you about the 'read'.."book" moment, but later when I was probing environmental ROL at the table, Jack blew me away. When I presented the boat, he said "Bo". THEN when I presented the plane, he said "Pay", and (it gets better!) when I presented the last one, the car, he said "Caw" like a true New Jersian! And CLEAR AS DAY! 3 in a row!!!!! SO I tried it again, holding the items up one at a time, saying "What do you want?" (instead of the item's name for Receptive Labels) and he successfully said "Bo" again when I held the boat up, and successfully said "Pay" when I held up the plane. I couldn't get the "caw" vocalization again, but hey, not too shabby right??!!!!!!!
Oh yes, and of course, his scores were very high today as well. For 'hammer' in verbs he got 100% and it's up for mastery. For sorting, I snuck in 5 plates for sort by color, and he got 100% correct (15/15) !!! For PTR, he got exactly 1 stim in 60 seconds, our goal. It was really a momentous day for Jack. And let's not forget, HE WENT PEE PEE IN THE POTTY TOO!
You should be very proud... Your little boy absolutely SHINED today....
Love,
Shanynn

NYT - On Autism's Cause, It's Parents vs. Research - New York Times

2005-06-25T13:55:00.000-05:00

NY TIMES

On Autism's Cause, It's Parents vs. Research

By HARRIS&fdq=19960101&td=sysdate&sort=newest&ac=GARDINER
HARRIS&inline=nyt-per> GARDINER HARRIS and
O'CONNOR&fdq=19960101&td=sysdate&sort=newest&ac=ANAHAD
O'CONNOR&inline=nyt-per> ANAHAD O'CONNOR

Kristen Ehresmann, a Minnesota Department of Health official, had just
told
a State Senate hearing that vaccines with microscopic amounts of
mercury
were safe. Libby Rupp, a mother of a 3-year-old girl with autism, was
incredulous.

"How did my daughter get so much mercury in her?" Ms. Rupp asked Ms.
Ehresmann after her testimony.

"Fish?" Ms. Ehresmann suggested.

"She never eats it," Ms. Rupp answered.

"Do you drink tap water?"

"It's all filtered."

"Well, do you breathe the air?" Ms. Ehresmann asked, with a resigned
smile.
Several parents looked angrily at Ms. Ehresmann, who left.

Ms. Rupp remained, shaking with anger. That anyone could defend mercury
in
vaccines, she said, "makes my blood boil."

Public health officials like Ms. Ehresmann, who herself has a son with
autism, have been trying for years to convince parents like Ms. Rupp
that
there is no link between thimerosal - a mercury-containing preservative
once
used routinely in vaccines - and autism.

They have failed.

The Centers for Disease Control and Prevention, the Food and Drug
Administration, the Institute of Medicine, the World Health
Organization and
the American Academy of Pediatrics have all largely dismissed the
notion
that thimerosal causes or contributes to autism. Five major studies
have
found no link.

Yet despite all evidence to the contrary, the number of parents who
blame
thimerosal for their children's autism has only increased. And in
recent
months, these parents have used their numbers, their passion and their
organizing skills to become a potent national force. The issue has
become
one of the most fractious and divisive in pediatric medicine.

"This is like nothing I've ever seen before," Dr. Melinda Wharton,
deputy
director of the National Immunization Program, told a gathering of
immunization officials in Washington in March. "It's an era where it
appears
that science isn't enough."

Parents have filed more than 4,800 lawsuits - 200 from February to
April
alone - pushed for state and federal legislation banning thimerosal and
taken out full-page advertisements in major newspapers. They have also
gained the support of politicians, including Senator Joseph I.
Lieberman,
Democrat of Connecticut, and Representatives Dan Burton, Republican of
Indiana, and Dave Weldon, Republican of Florida. And Robert F. Kennedy
Jr.
wrote an article in the June 16 issue of Rolling Stone magazine arguing
that
most studies of the issue are flawed and that public health officials
are
conspiring with drug makers to cover up the damage caused by
thimerosal.

"We're not looking like a fringe group anymore," said Becky Lourey, a
Minnesota state senator and a sponsor of a proposed thimerosal ban.
Such a
ban passed the New York State Legislature this week.

But scientists and public health officials say they are alarmed by the
surge
of attention to an idea without scientific merit. The anti-thimerosal
campaign, they say, is causing some parents to stay away from vaccines,
placing their children at risk for illnesses like measles and polio.

"It's really terrifying, the scientific illiteracy that supports these
suspicions," said Dr. Marie McCormick, chairwoman of an Institute of
Medicine panel that examined the controversy in February 2004.

Experts say they are also concerned about a raft of unproven, costly
and
potentially harmful treatments - including strict diets, supplements
and a
detoxifying technique called chelation - that are being sold for tens
of
thousands of dollars to desperate parents of autistic children as a
cure for
"mercury poisoning."

In one case, a doctor forced children to sit in a 160-degree sauna,
swallow
60 to 70 supplements a day and have so much blood drawn that one child
passed out.

Hundreds of doctors list their names on a Web site endorsing chelation
to
treat autism, even though experts say that no evidence supports its use
with
that disorder. The treatment carries risks of liver and kidney damage,
skin
rashes and nutritional deficiencies, they say.

In recent months, the fight over thimerosal has become even more
bitter. In
response to a barrage of threatening letters and phone calls, the
centers
for disease control has increased security and instructed employees on
safety issues, including how to respond if pies are thrown in their
faces.
One vaccine expert at the centers wrote in an internal e-mail message
that
she felt safer working at a malaria field station in Kenya than she did
at
the agency's offices in Atlanta.

An Alarm Is Sounded

Thimerosal was for decades the favored preservative for use in
vaccines. By
weight, it is about 50 percent ethyl mercury, a form of mercury most
scientists consider to be less toxic than methyl mercury, the type
found in
fish. The amount of ethyl mercury included in each childhood vaccine
was
once roughly equal to the amount of methyl mercury found in the average
tuna
sandwich.

In 1999, a Food and Drug Administration scientist added up all the
mercury
that American infants got with a full immunization schedule and
concluded
that the amount exceeded a government guideline. Some health
authorities
counseled no action, because there was no evidence that thimerosal at
the
doses given was harmful and removing it might cause alarm. Others were
not
so certain that thimerosal was harmless.

In July 1999, the American Academy of Pediatrics and the Public Health
Service released a joint statement urging vaccine makers to remove
thimerosal as quickly as possible. By 2001, no vaccine routinely
administered to children in the United States had more than half of a
microgram of mercury - about what is found in an infant's daily supply
of
breast milk.

Despite the change, government agencies say that vaccines with
thimerosal
are just as safe as those without, and adult flu vaccines still contain
the
preservative.

But the 1999 advisory alarmed many parents whose children suffered from
autism, a lifelong disorder marked by repetitive, sometimes
self-destructive
behaviors and an inability to form social relationships. In 10 to 25
percent
of cases, autism seems to descend on young children seemingly
overnight,
sometime between their first and second birthdays.

Diagnoses of autism have risen sharply in recent years, from roughly 1
case
for every 10,000 births in the 1980's to 1 in 166 births in 2003.

Most scientists believe that the illness is influenced strongly by
genetics
but that some unknown environmental factor may also play a role.

Dr. Tom Insel, director of the National Institute for Mental Health,
said:
"Is it cellphones? Ultrasound? Diet sodas? Every parent has a theory.
At
this point, we just don't know."

In 2000, a group of parents joined together to found SafeMinds, one of
several organizations that argue that thimerosal is that environmental
culprit. Their cause has been championed by politicians like Mr.
Burton.

"My grandson received nine shots in one day, seven of which contained
thimerosal, which is 50 percent mercury as you know, and he became
autistic
a short time later," he said in an interview.

In a series of House hearings held from 2000 through 2004, Mr. Burton
called
the leading experts who assert that vaccines cause autism to testify.
They
included a chemistry professor at the University of Kentucky who says
that
dental fillings cause or exacerbate autism and other diseases and a
doctor
from Baton Rouge, La., who says that God spoke to her through an
87-year-old
priest and told her that vaccines caused autism.

Also testifying were Dr. Mark Geier and his son, David Geier, the
experts
whose work is most frequently cited by parents.

Trying to Build a Case

Dr. Geier has called the use of thimerosal in vaccines the world's
"greatest
catastrophe that's ever happened, regardless of cause."

He and his son live and work in a two-story house in suburban Maryland.
Past
the kitchen and down the stairs is a room with cast-off, unplugged
laboratory equipment, wall-to-wall carpeting and faux wood paneling
that Dr.
Geier calls "a world-class lab - every bit as good as anything at
N.I.H."

Dr. Geier has been examining issues of vaccine safety since at least
1971,
when he was a lab assistant at the National Institutes of Health, or
N.I.H.
His résumé lists scores of publications, many of which suggest that
vaccines
cause injury or disease.

He has also testified in more than 90 vaccine cases, he said, although
a
judge in a vaccine case in 2003 ruled that Dr. Geier was "a
professional
witness in areas for which he has no training, expertise and
experience."

In other cases, judges have called Dr. Geier's testimony
"intellectually
dishonest," "not reliable" and "wholly unqualified."

The six published studies by Dr. Geier and David Geier on the
relationship
between autism and thimerosal are largely based on complaints sent to
the
disease control centers by people who suspect that their children were
harmed by vaccines.

In the first study, the Geiers compared the number of complaints
associated
with a thimerosal-containing vaccine, given from 1992 to 2000, with the
complaints that resulted from a thimerosal-free version given from 1997
to
2000. The more thimerosal a child received, they concluded, the more
likely
an autism complaint was filed. Four other studies used similar methods
and
came to similar conclusions.

Dr. Geier said in an interview that the link between thimerosal and
autism
was clear.

Public health officials, he said, are " just trying to cover it up."

Assessing the Studies

Scientists say that the Geiers' studies are tainted by faulty
methodology.

"The problem with the Geiers' research is that they start with the
answers
and work backwards," said Dr. Steven Black, director of the Kaiser
Permanente Vaccine Study Center in Oakland, Calif. "They are doing
voodoo
science."

Dr. Julie L. Gerberding, the director of the disease control centers,
said
the agency was not withholding information about any potentially
damaging
effects of thimerosal.

"There's certainly not a conspiracy here," she said. "And we would
never
consider not acknowledging information or evidence that would have a
bearing
on children's health."

In 2003, spurred by parents' demands, the C.D.C. asked the Institute of
Medicine, an arm of the National Academy of Sciences and the nation's
most
prestigious medical advisory group, to review the evidence on
thimerosal and
autism.

In a report last year, a panel convened by the institute dismissed the
Geiers' work as having such serious flaws that their studies were
"uninterpretable." Some of the Geiers' mathematical formulas, the
committee
found, "provided no information," and the Geiers used basic scientific
terms
like "attributable risk" incorrectly.

In contrast, the committee found five studies that examined hundreds of
thousands of health records of children in the United States, Britain,
Denmark and Sweden to be persuasive.

A study by the World Health Organization, for example, examined the
health
records of 109,863 children born in Britain from 1988 to 1997 and found
that
children who had received the most thimerosal in vaccines had the
lowest
incidence of developmental problems like autism.

Another study examined the records of 467,450 Danish children born from
1990
to 1996. It found that after 1992, when the country's only
thimerosal-containing vaccine was replaced by one free of the
preservative,
autism rates rose rather than fell.

In one of the most comprehensive studies, a 2003 report by C.D.C.
scientists
examined the medical records of more than 125,000 children born in the
United States from 1991 to 1999. It found no difference in autism rates
among children exposed to various amounts of thimerosal.

Parent groups, led by SafeMinds, replied that documents obtained from
the
disease control centers showed that early versions of the study had
found a
link between thimerosal and autism.

But C.D.C. researchers said that it was not unusual for studies to
evolve as
more data and controls were added. The early versions of the study,
they
said, failed to control for factors like low birth weight, which
increases
the risk of developmental delays.

The Institute of Medicine said that it saw "nothing inherently
troubling"
with the C.D.C.'s adjustments and concluded that thimerosal did not
cause
autism. Further studies, the institute said, would not be "useful."

Threats and Conspiracy Talk

Since the report's release, scientists and health officials have been
bombarded with hostile e-mail messages and phone calls. Dr. McCormick,
the
chairwoman of the institute's panel, said she had received threatening
mail
claiming that she was part of a conspiracy. Harvard University has
increased
security at her office, she said.

An e-mail message to the C.D.C. on Nov. 28 stated, "Forgiveness is
between
them and God. It is my job to arrange a meeting," according to records
obtained by The New York Times after the filing of an open records
request.

Another e-mail message, sent to the C.D.C. on Aug. 20, said, "I'd like
to
know how you people sleep straight in bed at night knowing all the lies
you
tell & the lives you know full well you destroy with the poisons you
push &
protect with your lies." Lynn Redwood of SafeMinds said that such
e-mail
messages did not represent her organization or other advocacy groups.

In response to the threats, C.D.C. officials have contacted the Federal
Bureau of Investigation and heightened security at the disease control
centers. Some officials said that the threats had led them to look for
other
jobs.

In "Evidence of Harm," a book published earlier this year that is
sympathetic to the notion that thimerosal causes autism, the author,
David
Kirby, wrote that the thimerosal theory would stand or fall within the
next
year or two.

Because autism is usually diagnosed sometime between a child's third
and
fourth birthdays and thimerosal was largely removed from childhood
vaccines
in 2001, the incidence of autism should fall this year, he said.

No such decline followed thimerosal's removal from vaccines during the
1990's in Denmark, Sweden or Canada, researchers say.

But the debate over autism and vaccines is not likely to end soon.

"It doesn't seem to matter what the studies and the data show," said
Ms.
Ehresmann, the Minnesota immunization official. "And that's really
scary for
us because if science doesn't count, how do we make decisions? How do
we
communicate with parents?"

Researchers Closing In On The Genetic Structure Of Autism And Related Disorders

2005-05-17T05:05:00.000-05:00

Researchers Closing In On The Genetic Structure Of Autism And Related Disorders
A research team at Washington University School of Medicine in St. Louis has identified regions of DNA that may be related to risk for autism.

The researchers are learning how autism is inherited, and to identify genetic factors, they're studying families and looking for traits that normally aren't considered autistic but have connections to autism risk. Several studies have demonstrated that autism has a strong genetic component. If one child in a family is autistic, there's about a 10 percent chance that a sibling also will have autism.

The Centers for Disease Control and Prevention estimates that one baby in every 250 is born with autism. As many as 1.5 million Americans are believed to have some form of autism, and that number is on the rise. Epidemiologists estimate the number of autistic Americans could reach 4 million in the next decade.

It's four times more prevalent in boys than in girls, but autism does not seem to affect any racial, ethnic or social group more than others. Autism also is not an "all-or-nothing" disorder, according to John N. Constantino, M.D., associate professor of psychiatry and of pediatrics at Washington University School of Medicine. There is a wide range of possibilities between the extremes.

"Although we once believed you either had this condition or you didn't, we now know there's a continuous distribution of autism symptoms from very mild to very severe," Constantino says.

That means it's possible for healthy people to have very subtle impairments that may indicate genetic tendencies that contribute to autism when they occur in certain combinations.

Constantino, a staff physician at St. Louis Children's Hospital, measures such subtle indicators with a diagnostic interview tool called the Social Responsiveness Scale (SRS) that he developed with colleague Richard D. Todd, Ph.D., M.D., the Blanche F. Ittleson Professor of Psychiatry, professor of genetics and director of the William Greenleaf Eliot Division of Child Psychiatry at Washington University.

They study families in which at least one child is autistic, and they've been able to measure the presence of sub-threshold traits -- social impairment, language problems and stereotypic, repeated behaviors -- that appear to have the same genetic causes as the more severe forms that occur in autism. Their effort is concentrated on families with twins.

"When you look at identical twins, if one twin has autism, the other has an autistic syndrome about 85 percent of the time," Constantino says. "But concordance in non-identical twins, is only about 10 percent to 15 percent."

Identical twins share 100 percent of their DNA and non-identical twins about 50 percent on average, so the researchers would expect that if autism was caused by a single gene, it would be half as common in non-identical twins as in identical. The big difference in the rates at which non-identical twins are affected means several genes probably are involved.

And in spite of the devastating disability associated with autism, it's possible that individually, some of those genes that contribute to autism might actually be beneficial.

"A person who has a genetic susceptibility factor that makes them very focused on details might be at an advantage under many circumstances and in a variety of occupations," Constantino says. "But in autism, more extreme symptoms can lead to severe levels of impairment."

The SRS can measure such traits not only in individuals with autism but also in their parents and siblings who are not affected with the disorder. When combined with DNA samples from those family members, those traits can help the researchers hunt for genes that can contribute to autism.

Reporting recently in the journal Biological Psychiatry, Constantino and Todd found that when both parents had elevated levels of such traits as measured by the SRS, their children were 10 times more likely to have levels of social impairment in the clinical range for an autistic syndrome.

"Neither parent would be diagnosed as autistic or even considered 'abnormal,'" Constantino says. "But they have subtle manifestations of traits that appear to be genetically related to autism itself, and that gives us some clues about how the disorder might be transmitted."

Constantino and Todd have been working to correlate the subtle impairments measured by the SRS with DNA samples to learn how unaffected parents might pass on those subtle impairments that can coalesce into autism.

With colleagues at the David Geffen School of Medicine at UCLA, Constantino and Todd reported this month at the annual International Meeting for Autism Research that tracking those subtle traits and studying DNA from apparently unaffected parents and siblings has led them to identify regions on chromosome 11 and chromosome 20 that may be related to autism.

They plan to look more closely at those regions of DNA for genes that might influence autism. Knowing which genes are involved could make it possible to identify autism earlier and intervene to try to keep symptoms from progressing.

As gene sequencers analyze the DNA, the researchers also are observing behavior, studying very young children. It's now possible to detect signs of autism during infancy, so the researchers are working to detect and diagnose autism as early as possible.

Because it is so much more common in boys than in girls, Constantino's group has begun studying the infant brothers of children with autism.

"We observe these young boys right from the time of birth and follow them closely at monthly intervals to get a better handle on how the symptomatology of autism manifests itself very early in development," he says.

The Washington University group is pooling its findings with other autism researchers around the country to learn the general symptoms that characterize autism and related disorders, including Asperger's disorder, at their earliest stages.

"We are actively requesting that families with an autistic child and an infant sibling consider participating in this research," he says. "As soon as infants are born into these families, we hope to include them in our ongoing studies so that we can get a better handle on which children will develop autism, how the disorder unfolds early in development and how it can be prevented or treated early in life."

For more information about autism studies at Washington University, call Teddi Gray at (314) 286-0068.

Geschwind DH, Duvall JA, Canto R, The AGRE consortium, Todd RD, Constantino JN. A genomewide linkage scan using the social responsiveness scale (SRS) as a quantitative trait for autism. Abstract presented at the International Meeting for Autism Research, May 2005.

Constantino JN, Todd RD. Intergenerational transmission of subthreshold autistic traits in the general population. Biological Psychiatry, vol. 57:6, pp. 655-660, March 15, 2005.

Constantino JN, Todd RD. Autistic traits in the general population. Archives of General Psychiatry, vol. 60:6, pp. 524-530, May 2003.

Washington University School of Medicine's full-time and volunteer faculty physicians also are the medical staff of Barnes-Jewish and St. Louis Children's hospitals. The School of Medicine is one of the leading medical research, teaching and patient care institutions in the nation, currently ranked third in the nation by U.S. News & World Report. Through its affiliations with Barnes-Jewish and St. Louis Children's hospitals, the School of Medicine is linked to BJC HealthCare.

Editor's Note: The original news release can be found here.

--------------------------------------------------------------------------------

This story has been adapted from a news release issued by Washington University School Of Medicine In St. Louis.

"Autism Is a World" Premiers May 22

2005-05-17T05:01:00.000-05:00

Academy Award®-Nominated Film Features Woman On The Spectrum
The Academy Award®-Nominated documentary, Autism Is A World, will
premiere on CNN Presents, Sunday, May 22, at 8 p.m. (EST). The film,
which was co-produced by CNN Productions, State of the Art Inc., and
nominated for Best Documentary Short Subject by the Academy of Motion
Picture Arts and Sciences, takes you into the mind and showcases the
life of Sue Rubin, a 26-year-old living with autism.

Diagnosed with autism at age 4, Rubin was considered mentally
retarded until age 13 when she began communicating by typing on a
communication board, a technique known as facilitated communication.
Now a junior in college, Rubin can describe autism's effect on her
life, including the challenges she faces and behaviors she embodies
as a result of living with the disorder. Keenly aware of her
capabilities, Rubin's story is unique, moving and inspiring.

Autism Is A World will be available in English and Spanish, and free
copies of the film will be provided to 16,000 libraries across the
United States, made possible by a grant from the Nancy Lurie Marks
Family Foundation. To learn more, including how to order, visit
http://www.autismisaworld.com/.

For additional air-times on CNN Presents, visit:
http://www.cnn.com/CNN/Programs/presents/index.autism.world.html.

Children with autism have distinctly different immune system reactions compared to typical children

2005-05-07T06:55:00.000-05:00

More terrific work coming out of Cure Autism Now!

Children with autism have distinctly different immune system reactions compared to typical children
06 May 2005

A new study by researchers at the University of California, Davis, M.I.N.D. Institute and the NIEHS Center for Children's Environmental Health demonstrate that children with autism have different immune system responses than children who do not have the disorder. This is important evidence that autism, currently defined primarily by distinct behaviors, may potentially be defined by distinct biologic changes as well.

The study was released at the 4th International Meeting for Autism Research (IMFAR) - a meeting of autism scientists started by Cure Autism Now, the UC Davis M.I.N.D. Institute and the National Alliance for Autism Research to accelerate knowledge of this increasingly common and perplexing disorder. It is estimated that autism now affects 1 in every 166 children.

"Understanding the biology of autism is crucial to developing better ways to diagnose and treat it," said Judy Van de Water, associate professor of rheumatology, allergy and clinical immunology at the UC Davis School of Medicine and the UC Davis M.I.N.D. Institute. "While impaired communication and social skills are the hallmarks of the disorder, there has not yet been strong scientific evidence that the immune system is implicated as well. We now need to design carefully controlled studies that tell us even more about the way in which a dysfunctional immune system may or may not play a role in the disorder itself."

Van de Water, along with co-investigator of the study Paul Ashwood, assistant professor of medical microbiology and immunology at the UC Davis M.I.N.D. Institute, isolated immune cells from blood samples taken from 30 children with autism and 26 typically developing children aged between two and five years of age. The cells from both groups were then exposed to bacterial and viral agents that usually provoke T-cells, B cells and macrophages - primary players in the immune system.

Of the agents tested in the study - tetanus toxoid, lippopolysaccharide derived from E. coli cell walls, a plant lectin known as PHA, and a preparation of the measles, mumps and rubella vaccine antigens - the researchers found clear differences in cellular responses between patients and controls following exposure to the bacterial agents and PHA.

In response to bacteria, the researchers saw lower levels of protein molecules called cytokines in the group with autism. Cytokines function as mediators of the immune response, carrying messages between B, T and other immune cells. They also are known to be capable of having profound effects on the central nervous system, including sleep and the fever response. Immune system responses to PHA, in contrast, produced more varied cytokine levels: Higher levels of certain cytokines and lower levels of others.

According to Van de Water and Ashwood, these studies illustrate that under similar circumstances, the cytokine responses elicited by the T-cells, B-cells, and macrophage cell populations following their activation differs markedly in children with autism compared to age-matched children in the general population. Cytokines are known to affect mood and behavior, and while their specific role in the development of autism remains unclear, the potential connection is an intriguing area of research that warrants further investigation.

"This study is part of a larger effort to learn how changes in immune system response may make some children more susceptible to the harmful effects of environmental agents," said Kenneth Olden, director of the National Institute of Environmental Health Sciences, the federal agency that provided funding for the study. "A better understanding of the connection between altered immune response and autism may lead to significant advances in the early detection, prevention and treatment of this complex neurological disorder."

"We would like to take these findings and explore whether, for example, the cytokine differences are specific to certain subsets of patients with autism, such as those with early onset, or those who exhibit signs of autism later during development," Ashwood said. He added that the logical next step is to look directly at specific cell populations that may be responsible for the diverging responses between patients and controls.

This study was supported by grants from the National Institutes of Environmental Health Sciences, the U.S. Environmental Protection Agency, the UC Davis M.I.N.D. Institute, Ted Lindsay Foundation and Visceral. The UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute is a unique collaborative center for research into the causes and treatments of autism, bringing together parents, scientists, clinicians and educators.
For further information, go to http://www.ucdmc.ucdavis.edu/mindinstitute

A new study by researchers at the University of California, Davis, M.I.N.D. Institute and the NIEHS Center for Children's Environmental Health demonstrate that children with autism have different immune system responses than children who do not have the disorder. This is important evidence that autism, currently defined primarily by distinct behaviors, may potentially be defined by distinct biologic changes as well.

The study was released at the 4th International Meeting for Autism Research (IMFAR) - a meeting of autism scientists started by Cure Autism Now, the UC Davis M.I.N.D. Institute and the National Alliance for Autism Research to accelerate knowledge of this increasingly common and perplexing disorder. It is estimated that autism now affects 1 in every 166 children.

'Understanding the biology of autism is crucial to developing better ways to diagnose and treat it,' said Judy Van de Water, associate professor of rheumatology, allergy and clinical immunology at the UC Davis School of Medicine and the UC Davis M.I.N.D. Institute. 'While impaired communication and social skills are the hallmarks of the disorder, there has not yet been strong scientific evidence that the immune system is implicated as well. We now need to design carefully controlled studies that tell us even more about the way in which a dysfunctional immune system may or may not play a role in the disorder itself.'

Van de Water, along with co-investigator of the study Paul Ashwood, assistant professor of medical microbiology and immunology at the UC Davis M.I.N.D. Institute, isolated immune cells from bloo"

Disney Trip April 2005

2005-05-01T07:32:00.000-05:00

We've returned from our 5 night stay at Saratoga Springs Resort in Disney World. It's important for everyone traveling with kids on the spectrum to know that with a letter with a diagnosis from your Dr., you and your party will get a Guest Assistance pass from the Guest Relations window outside of any of the parks. The pass will be good for the length of your stay and will allow you to enter rides and attractions with a very minimal wait, through a few options:

1. If the ride or attraction has a Fastpass option, just go with your pass to the Fastpass Return booth and you will enter without wait

2. If the ride has a handicap accessible entry, go to that entry and you will have a very limited wait

3. If the ride has neither, go to the Exit gate of the ride and find an attendant, they will direct you to the right place

In terms of the trip, Jack had a great flight down to Disney, playing with Playdoh most of the way. He had alot of trouble with the descent into Orlando airport as his ears got clogged and really bothered him. He calmed down after we landed, but he was extra sensitive to sounds for most of day 1 and day 2. A phone call to Terri Moser, Jack's OT for advice led us to giving him sensory toys to play with to help calm him down. So, we found squishy balls, stretchy frogs and rubbery bracelets for Jack to play with for the remainder of the trip and it completely changed his mood. Thanks Terri!!!!!

Jack basically survived on French Fries for the week at Disney. While each restaurant would happily prepare dairy/soy free dishes, Jack prefered French Fries, with a strong preference to McDonalds (Which they carry at all the parks and Downtown Disney). But he did like his specially made waffles and pancakes at Restaurantasorous, 1900 Park (Grand Floridian), and Cinderellas Royal Table. Oh, and Crystal Palace made the best French Fries.

Thank goodness for the Guest Assistance pass feature, yet again, as it made our lives much more manageable with Jack. Jack's favorite is still Mickey's Philharmagic!!! He also loved Voyage of the Little Mermaid, Spaceship Earth and Buzz Lightyear! This year he had trouble with the flying rides as he was appropriately scared. He also hated the Barnstormer (boy did he scream!!!). He liked "It's tough to be a bug" and he actually wore his 3D glasses in that attraction!!

All three of our kids were way more sensitive to dark and scarier rides this year and we learned that it's actually easier to get more done when the kids are really little - you pretty much just drag them around. When they get older, they get opinionated :-) Even Jack.

Jack's absolute favorite thing to do was to go in the pool. Saratoga Springs has 2 pools, which are both fabulous. Jack was jumping off the edge of the pool into my arms and starting to show signs of readiness to swim. He loved being completely dunked under the water!

Once again, Jack slept with his brother in the pull out bed and really only had trouble the first night - being away from home was a little tougher this time. He's really alot more aware this year.

Grandma and Grandpa joined us this year and gave us alot of help and support. I'm sure they really loved being with their grandchildren for 5 days.

The flight home was pretty uneventful too, other than some more ear problems when we took off from Orlando. But the squishy toys and Jack's souvenior, Wiggles music toy got him through the flight.

Toni, Noah and I were all wearing our Cure Autism Now T-Shirts on different days and we got alot of attention. As we boarded our flight going down to Disney, a dad asked me which child had autism and I introduced him to Jack. He in turn introduced me to his son, who also has autism, and was making his first trip to Disney. It seems as though Disney has become a vacation mecca for the autism community, as we noticed an un-countable number of families in a similar situation to us. But then again, if 1 out of every 150 kids is being diagnosed these days, you're going to find autism everywhere!

Anyway, Jack is happy to be home now and he's continuing to progress with his skills and speech quite nicely.

People Are TALKING . EVIDENCE OF HARM

2005-04-11T05:08:00.000-05:00

People Are TALKING . EVIDENCE OF HARM

"I am begging everyone in America to read this book."

-- Don Imus

"Six months from now, this will be the biggest subject that everyone
is
talking about."*

- Montel Williams

"It isn't a stretch to say Big Pharma's fortunes are tethered in part
to the
Amazon.com sales rank of 'Evidence of Harm.' If a link is found, the
potential liability makes asbestos litigation look like belonging to a
small claims
court."

-- Stephen Schurr, Financial Times

"WARNING! -- Reporter David Kirby has recently written a book,
'Evidence of
Harm,' purporting that there is a link between thimerosal and autism
and
other developmental disorders. This book is being marketed
aggressively.
Publicity surrounding the release of this book has the potential to
confuse families
who are asking appropriate questions about vaccine safety."

-- National Network for Immunization Information

"Kirby crafts an engrossing David and Goliath story from this
controversy,
one in which the giant is an amalgamation of big government
bureaucrats and
pharmaceutical lobbyists. Walking the middle line, Kirby's book
remains one of
the most thoroughly researched accounts of the thimerosal controversy
thus
far. This is the book for medical professionals and concerned parents
to read.
It's accessible in its handling of medical topics and compelling in
its
recounting of the parents' fight."

-- Publishers Weekly (Starred Review) ***

"We at CDC are in the process of reviewing Mr. Kirby's book in detail,
but
the general issues raised in the book have already been extensively
examined,
including by the Institute of Medicine (IOM). The vast majority of
studies
have failed to find any association between exposure to thimerosal in
vaccines
and autism; that is, they have failed to find any evidence of harm."
--Dr. Stephen Cochi, National Immunization Program, CDC

"'Evidence of Harm' is an important book. It is an important book for
politicians and policy-makers lest they forget that theirs is to
protect those who
put their trust in them; theirs is not preserving a system at the
expense of
those the system is meant to serve."

- Craig Westover, St. Paul Pioneer Press

"It sickens me that there are still scare mongers out there like you
worrying the public needlessly. I can't believe you still try to
dispute the recent
high quality studies that have put this issue to rest. Your book is
too late,
we don't use thimerisol in vaccines anymore except flu-vax. Make sure
you
tell Oprah et.al. that when you go out on tour. I hope you and it's
publisher
lose money on this book, for you should be held responsible for
childhood
morbidity due to unvaccination that results from your spinning of the
truth.

-- Raymond Holt, MD

"Kirby creates warm portraits of parents trying desperately to find
treatments for their damaged children while, at the same time, carrying
on a war with
both big government and big business. With knocks to bureaucrats and
kudos
to parents, Kirby does a good job of explaining the scientific issues
in an
unresolved controversy."

-- Kirkus Reviews

"There is a huge publicity campaign afoot, engineered by individuals
who
seek to bolster their claims that one child's autism caused by a
vaccine
reaction. That way, they can create a class action, get thousands of
parents to join
them in their crusade, and influence public opinion, including the
opinion
of prospective jurors in their cases. I am convinced that Evidence of
Harm is
an integral component of that publicity campaign. I doubt that Kirby
is
disinterested. The book is published by St. Martin's, but I strongly
suspect that
SafeMinds underwrote production of the material that appears at
evidenceofharm.com. I would like to know whether David Kirby has
received any compensation
from SafeMinds during the preparation of the book. The principals of
SafeMinds have a substantial financial interest in the outcome of
vaccine lawsuits.
If Kirby was paid by them to write the book, he should disclose
this."

--Quackwatch.com

"A riveting new book that examines this controversial but biologically
plausible link. 'Evidence of Harm' lines up the known evidence while
telling the
stories of a handful of determined parents forced to become their own
detectives. You'll get eye-opening glimpses into the trenches where
once normally
developing kids slip into the shuttered world of autism and where
their parents
refuse to be bounced off the walls of seemingly impenetrable
bureaucracies.
Highly recommended.
-- Richard Harkness, Columnist, The Biloxi Sun Herald

"As a pediatrician, I'm deeply disappointed by your choice to
interview
David Kirby. Like with the Swiftboat Veterans for Truth campaign,
giving media
exposure to a completely unsubstantiated allegation perpetuates false
information and sews doubt where there should be none. I must waste
time discussing
how thimerosol is not a risk to a parent's child. I wonder how many of
the 2000
or more influenza deaths per year among U.S. children you or your
guest are
willing to be responsible for? Unfortunately, doubts remain in the
minds of
parents--just as they did in the minds of voters about John Kerry's
Vietnam
service. From Fox News, I expect this poor quality of journalism."

--Letter to Leonard Lopate, WNYC Radio

"The pharmaceutical industry, the CDC, the FDA, and a host of other
people
do NOT want you to read this book - because they are afraid of it. And
they
should be. This well-written book is one that all parents should read
- and ask
why no one from the above mentioned agencies or companies would talk
to
David Kirby. What are they hiding??? I am a scientist - a Harvard Ph.D.
in
Genetics and a Phi Beta Kappa graduate of MIT - and although there is
indeed no
absolute proof that mercury in vaccines has caused this epidemic,
neither is
there disproof. What is abundant in this book is plenty of reason to
believe
that there is evidence of harm."
-- John M. Greene, Ph.D., Amazon.com Reader Review

"Everyone's holding their breath in anticipation of the effect the
book will
have on everything. Kirby has done a masterful job making a lot of
weirdness
intolerably believable. I just can't imagine anyone, on finishing the
book,
going: "Hmm, that's nice."
-- Lenny Schafer, The Schafer Autism Report

"I only caught the last 5 minutes or so of the piece with David Kirby,
but I
can't emphasize enough my dismay at the incomplete information that I
heard.
Unfortunately, preventive health is never 'media-friendly" because
it's just
not that exciting to talk about all the awful disease that didn't
happen."

--Letter to Leonard Lopate, WNYC Radio

"Kirby's not alone in asking whether autism is a misdiagnosis for
mercury
poisoning. An increasing number of families, physicians, scientists,
and some
in Congress point to a growing body of evidence linking mercury
toxicity with
otherwise unexplained disorders like autism."
--Coy Barefoot & Alison Bell, The Hook, (Charlottesville, VA)

"Read this book! David Kirby's superb, even-handed account of the
investigation into this ongoing, high-stakes controversy is
fascinating and compelling.
The poignant personal accounts of the families of autistic children
are
heart-wrenching."

-- Dr. Bernard Rimland, Director, Autism Research Institute and
Founder,
Autism Society of America

"A plethora of books and other material on autism is attracting the
attention of readers and viewers. The new book with the most buzz is
'Evidence of
Harm' by David Kirby."
-- The Clarion Ledger, (Jackson, Mississippi)

"A riveting tapestry that will hold the interest of parents of newly
diagnosed children, seasoned advocates, and members of the general
public. 'Evidence
of Harm' is a powerful historical account."

-- Teri Small, General Manager, Autism One Radio

"The thimerosal issue is not going away, and is likely to heat up even
more
with the publication of Evidence of Harm. It's a must-read for parents
of
children with autism and, for that matter, anyone concerned about our
country's
public health."

--Ela Schwartz, Spectrum Magazine

"David Kirby's mesmerizing chronicle of this mega-scandal will shock
even
the most cynical observer of corporate greed in America. The ultimate
David and
Goliath tale for a modern age. The FDA, CDC, and pharmaceutical giants
have
a lot of explaining to do."

-- Rita Shreffler, National Autism Association

Study Links Free Radicals to the Spectrum of Autism

2005-04-04T09:13:00.000-05:00

Study Links Free Radicals to the Spectrum of Autism
A metabolic flaw may account partly for the range in severity shown in children with the developmental disorder, scientists report.

See this link for more: http://www.latimes.com/news/nationworld/nation/la-sci-autism3apr03,1,3750859.story?amp;ctrack=1&coll=la-headlines-nation&cset=true&ctrack=2&cset=true

Subject: Autism linked to mirror neuron dysfunction

2005-03-30T06:26:00.000-05:00

Really interesting article...

Subject: Autism linked to mirror neuron dysfunction

http://www.medicalnewstoday.com/medicalnews.php?newsid=21971

Autism linked to mirror neuron dysfunction30 Mar 2005

Findings may lead to early diagnosis of autism and possible therapies -

Seeing is doing - at least it is when mirror neurons are working
normally. But in autistic individuals, say researchers from the University of
California, San Diego, the brain circuits that enable people to
perceive and understand the actions of others do not behave in the usual way.

According to the new study, currently in press at the journal Cognitive
Brain Research, electroencephalograph (EEG) recordings of 10
individuals with autism show a dysfunctional mirror neuron system: Their mirror
neurons respond only to what they do and not to the doings of others.

Mirror neurons are brain cells in the premotor cortex. First identified
in macaque monkeys in the early 1990s, the neurons - also known as
"monkey-see, monkey-do cells" - fire both when a monkey performs an action
itself and when it observes another living creature perform that same
action. Though it has been impossible to directly study the analogue of
these neurons in people (since human subjects cannot be implanted with
electrodes), several indirect brain-imaging measures, including EEG,
have confirmed the presence of a mirror neuron system in humans.

The human mirror neuron system is now thought to be involved not only
in the execution and observation of movement, but also in higher
cognitive processes - language, for instance, or being able to imitate and
learn from others' actions, or decode their intentions and empathize with
their pain.

Because autism is characterized, in part, by deficits in exactly these
sorts of social interaction and communication skills, previous research
has suggested that a dysfunctional mirror neuron system may explain the
observed pathology. The current findings, the researchers say, lend
substantial support to the hypothesis.

The UC San Diego team collected EEG data in 10 males with autism
spectrum disorders who were considered "high-functioning" (defined as having
age-appropriate verbal comprehension and production and IQs above 80)
and 10 age- and gender-matched control subjects.

The EEG data was analyzed for mu rhythm suppression. Mu rhythm, a human
brain-wave pattern, is suppressed or blocked when the brain is engaged
in doing, seeing or imagining action, and correlates with the activity
of the mirror neuron system. In most people, the mu wave is suppressed
both in response to their own movement and to observing the movement of
others.

Subjects were tested while they moved their own hands and while they
watched videos of visual white noise (baseline), of bouncing balls
(non-biologic motion) and of a moving hand.

As expected, mu wave suppression was recorded in the control subjects
both when they moved and when they watched another human move. In other
words, their mirror neuron systems acted normally. The mirror neurons
of the subjects with autism spectrum disorders, however, responded
anomalously - only to their own movement.

"The findings provide evidence that individuals with autism have a
dysfunctional mirror neuron system, which may contribute to many of their
impairments - especially those that involve comprehending and responding
appropriately to others' behavior," said Lindsay Oberman, first author
of the paper and UCSD doctoral student working in the labs of senior
authors V.S. Ramachandran, director of the Center for Brain and
Cognition, and Jaime Pineda, director of the Cognitive Neuroscience Laboratory.

The current study, the researchers say, adds to understanding the
neural basis of autism and may point the way to early diagnosis and to
potential therapies.

A first step, Ramachandran said, might be to test those individuals who
seem to have a greater genetic likelihood of autism: the younger
siblings of those already diagnosed.

Though EEG is not at present designed to measure the brain rhythms of
low-functioning autistics - whose many repetitive movements confound EEG
signals and where mental retardation also plays a significant role in
behavioral deficits - it can be used as a tool for earlier diagnosis of
high-functioning autistics, whose disorder today is typically not
recognized until age 3 or 4 and often later.

Earlier diagnosis in turn could lead to earlier interventions. One
therapeutic possibility suggested by the study's findings is biofeedback.

Pineda, who also works on a number of brain-computer interface
projects, says that the mu rhythm is one that we most readily learn to control.

"We can learn to increase or decrease the strength of the mu signal at
will. By imagining action, subjects are able to move a paddle in a
computer game of 'Pong' after just four to six hours of practice," he said.
"Because this rhythm is one that we have access to volitionally, it may
prove useful in therapy."

Another possible therapy would involve ordinary mirrors. Ramachandran
has successfully treated amputees who experience pain or paralysis in
their missing, or "phantom," limbs by using a mirror reflection of their
healthy limb to "trick" their brains into believing that the missing
limb has been restored to pain-free motion. Since autistics' mirror
neurons respond to their own motion, the researchers say, perhaps their
brains can be induced to perceive their own reflected movements as the
movements of another human being.

"We have a long way to go before these therapeutic possibilities are a
reality, but we're that much closer now that we've linked autism to a
specific region of the brain," said Ramachandran. "More than just
documenting a brain anomaly in autism, we've been able to relate symptoms
that are unique to the disorder - loss of empathy and imitative skills -
to the function of a particular circuit, the mirror neuron system."

Other authors on the study are: Eric Altschuler, former UCSD
postdoctoral researcher now at the Mt. Sinai School of Medicine in New York, who
with Ramachandran and Pineda originally presented preliminary findings
on mirror neuron dysfunction in one autistic child in 2000; Edward
Hubbard, recent UCSD graduate now at the French National Institute of
Health (INSERM) in Paris; and UCSD graduate student Joseph McCleery.

The team is now pursuing another, related line of research: Are mirror
neurons involved in the ability to understand metaphors? Autistic
individuals typically have difficulties with metaphors, often interpreting
them literally, and the researchers believe this too may be connected to
a dysfunctional mirror neuron system.

"Even as the clinical study of mirror neurons is giving us insights
into autism and other disorders," Ramachandran said, "it is also giving us
glimpses of a host of uniquely human - and elusive - mental capacities:
making metaphors and passing on proverbs, to name just two."

Contact: Inga Kiderra
ikiderra@ucsd.edu
858-822-0661
University of California - San Diego
http://www.ucsd.edu

Fascinating Article: The Age of Autism: Backward

2005-03-27T06:51:00.000-05:00

Here's an article that I find fascinating as I'm really becoming curious about the origins of autism. There remains a great number of questions regarding Leo Kanner's original accounts of autism (dating back to the late 1930s). He claimed that the cases he studied were all of children who exhibited autistic traits from birth - therefore the term "Kanner's Autism" is used today for children who didn't regress, like Jack, but rather never developed. A closer look at Kanner's original findings show that this may not be true, but these children, may have indeed exhibited regressive autism. In addition, these children also had a high incidence of feeding and stomach issues. One fascinating account is how a child seemingly regressed after a smallpox vaccine (I would doubt they used thimerosal back in those days)! Anyway, take a look at this article if you're interested.

The Age of Autism: Backward

[World News] By DAN OLMSTED WASHINGTON, March 10 : When Leo Kanner first identified autism as a unique developmental disorder in 1943, he was certain it was present from birth.

"This is not, as in schizophrenic children or adults, a departure from an initially present relationship," Kanner wrote."It is not a 'withdrawal' from formerly existing participation.There is from the start an extreme autistic aloneness."

Almost 30 years later, in a 1972 speech, Kanner was of the same mind."I didn't find that withdrawal was a proper term because you withdrew from something where you were before.These children had never been there."

Not emphatic enough for you? Kanner declared these children were "pure-culture examples" -- as in a closely observed petri dish -- "of inborn autistic disturbances."

But certain is not a synonym for correct, and there are signs Kanner was wrong -- or at least not totally convincing -- about that.

Re-evaluating his 11 case studies of children born from 1931 to 1938, there is ample reason to wonder whether some of them developed autism after a period of normal development.

Take Richard M.,, born in November 1937. "I can't be sure just when he stopped the imitation of word sounds," his mother wrote when he was almost 3. "It seems that he has gone backward mentally gradually for the last two years."

Or Elaine C.,, who was born in February 1932. "She took feedings well, stood up at 7 months and walked at less than a year.She could say four words at the end of her first year, but made no progress in linguistic development for the following four years."(Four words at the end of the first year is about right for normally developing babies.No words for the next four years, obviously, is not.)) Both Elaine and Richard were "there" before age 1, it seems.Then they went backward -- they withdrew, to use the word Kanner wouldn't.

The term for that is regression, and today children who at first develop normally but become autistic by 36 months are diagnosed with regressive autism.Yet few associate that sequence with any of Kanner's original cases because he was so definite that their autism was present from birth.

What difference would it make if Kanner used too broad a brush in painting every single case as innate? It would make a lot of difference, by raising the possibility that some factor triggered autism in these children after they were born, not before.

In earlier articles in this series tracking the natural history of autism, we looked at whether autism has always existed at a steady prevalence or, instead, began decisively among children born in the 1930s.

We found the "steady state" theory hard to reconcile with the relatively few cases of autistic-style behavior reported before then; we calculated that at today's rate there should have been 369,000 hard-to-miss full-syndrome autistics alive in the United States in 1930. Where were they? We also pointed to a striking link among the first 10 parents -- they had college educations and many had advanced degrees.But we concluded this link weakened when the first 100 parents were analyzed.

Implication: It's plausible some new factor triggered autism in those college-educated families in the 1930s, and by the 1940s it was spreading to a broader range of families.

If some of Kanner's original cases were not autistic-from-birth but regressive -- acquired autism syndrome, in effect -- that would fit with a "new trigger" theory.

Kanner was brilliantly right in identifying autism -- which, by the way, he described as "a behavior pattern not known to me or anyone else theretofore."And Kanner wrote the book on child psychiatry -- "Child Psychiatry," published in 1934.

But like anyone studying a puzzling new phenomenon -- consider some of the misbegotten theories about AIDS -- not all of Kanner's observations or inferences have proven absolutely correct.

For instance, Kanner wrote that in the whole group of parents, "there are very few really warmhearted fathers and mothers.For the most part, the parents, grandparents, and collaterals are persons strongly preoccupied with abstractions of a scientific, literary, or artistic nature, and limited in genuine interest in people."

Kanner wondered whether "this fact" caused their children's autism, but his belief that it was present from birth gave him pause."The question arises whether or to what extent this fact has contributed to the condition of the children.The children's aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of early parental relations with our patients."

Hey -- so does this fact: Quite a few of those parents didn't fit that cold unfeeling stereotype.Kanner individually described several: "a patient, even-tempered man ...a well-educated, kindly woman ...energetic and outgoing, fond of people and children."Another mother told him, "The thing that upsets me most is that I can't reach my baby."How unfeeling is that? Kanner's gift for observation undercut his generalization, which has since been proved to have nothing to do with the risk of having an autistic child.

Trying to make sense of those first cases, we did the modern thing -- we got a second opinion.We asked a pediatrician who has worked with dozens of autistic children and their families to read Kanner's original study.These were her main points: -- "I don't think he makes the case that they all were totally autistic from birth," she said.By the same token, given the limitations of the data reported in the case histories, we can't be absolutely certain that any were instances of regressive autism.

-- Ironically, some of the children seem to have the milder Asperger's Disorder rather than classic "Kanner autism," which has come to signify the most severe cases.

-- A number of these children had physical problems that shouldn't be overlooked as possible clues to their developmental disorder.Those problems centered on food, digestion and illnesses that could suggest allergic reactions or a weakened immune system, the pediatrician pointed out.

-- Donald T.,, the first patient Kanner saw in 1938, never had a normal appetite."Eating has always been a problem with him," the father wrote."Seeing children eating candy and ice cream has never been a temptation to him."

-- "Following smallpox vaccination at 12 months," Richard M."had an attack of diarrhea and fever from which he recovered in somewhat less than a week."This is the child whose mother recalled him going "backward" about that age.

-- Barbara K."nursed very poorly and was put on bottle after about a week.She quit taking any kind of nourishment at 3 months.She was tube-fed five times daily up to 1 year of age."Her eating eventually became normal.

-- Herbert B."vomited all food from birth through the third month," after which feeding progressed satisfactorily.

-- John F.''s father said, "The main thing that worries me is the difficulty feeding.That is the essential thing, and second is the slowness in development.During the first days of life he did not take the breast satisfactorily. ...There is a long story of trying to get food down.We have tried everything under the sun."

Kanner noted that John had "frequent hospitalizations because of the feeding problem.No physical disorder was ever found, except that the anterior fontanelle did not close until he was two-and-a-half.He suffered from repeated colds and otitis media (ear infections)."What could these symptoms mean? Perhaps nothing, as babies tend to have all sorts of upsets.But the pediatrician said such illnesses and digestive ailments might increase a child's vulnerability to toxins by making them harder to eliminate.

Conversely, they could signal that if something was causing the child's autism, it was disrupting their entire system.Obviously it's impossible to tell.But consider this: Today, the children diagnosed with the regressive kind of autism are usually the ones with the food allergies, digestive problems and long-running infections that suggest an immune system under siege and out of whack.And that is the kind of autism that now predominates.Initially, autism at birth was much more frequent, but now regressive cases are several times more common, according to Bernard Rimland, a pioneer autism researcher.

Perhaps something did happen to some of Kanner's children after they were born in the 1930s.And perhaps whatever that was is still happening.

-- Copyright 2005 by United Press International.